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Believe51
09-15-2008, 12:53 PM
Hey Rich, thinking about Mom and wondering how she is making out. I have been very busy lately but I have been following her journey the best I can. Keep doing what you are doing, you are a wonderful son and caregiver. Keeping Mom on my mind and sending her a cyber hug and positive thoughts her way!! If you get a moment please update us all>>Believe51

Rich66
09-15-2008, 01:30 PM
Thank you! Awaiting path er and her2 status of biopsy and meeting with local onc Thursday (18th) to hear options, meeting with Dr. Cobleigh in Chicago on the 25th. Meanwhile trying to understand current options for liver mets status as well as promising pipeline developments. Any thoughts always welcome. Thanks again!
PS: Does yellowish bm mean anything?

DonnaD
09-15-2008, 03:42 PM
Rich,
Please check your private message and e-mail.
Donna

Rich66
09-15-2008, 07:18 PM
Having labs drawn tomorrow. Seems like possible jaundice. Anyone have this with liver mets?

StephN
09-15-2008, 09:52 PM
Hi -
Jaundice is not a good sign. I did not get to that point with my liver mets, but Esther and a couple of other members here did have jaundice.

If it is jaundice, your Mom needs immediate treatment. She should not wait until the 25th to see Dr. Cobleigh. If it is jaundice, call this onc and get your Mom in ASAP.

StephN
09-16-2008, 10:59 AM
Hi -
Please post on the lab results and the possible jaundice when you have them.

Rich66
09-16-2008, 05:04 PM
Onc left message while mom was out saying, pathology was in (no details) bilirubin was up "slightly", she would call tomorrow..and that Thursday consult would be start date for treatment(no details). A bit concerned..just a few hours to decide? No second opinion? !!!!!

Rich66
09-16-2008, 07:41 PM
Is this normal?

Rich66
09-17-2008, 08:06 AM
Her 2 came at "low end of high" 1.8 FISH at state lab. Re-doing part of test. Local onc not considerng it her2 pos. Offering Xeloda. Suggesting start tomorow

Believe51
09-17-2008, 08:25 AM
Thanks for the wonderful updates of 'pieced' information as you get it. I will be thinking of her as she embarks on this new chemo regime. This is a great drug and has proven effective in so many others, I am praying the same for Mom.

And you Rich, have grown so very much since you have found us here. Your love, support and devotion for Mom shines so bright. You have researched and gathered ammo here and on other reputable sites to guide your Mother into her recovery.

So here is to you both: May you find the missing piece of her puzzle and may Mom have a fair fight to beat up those nasties.>>Believe51

PS.....'fair fight' seems so inappropriate being used in cancer-talk....none of this is fair to anyone who has this damn illness.

Rich66
09-17-2008, 09:39 AM
This feels very bad right now. The local onc actually said that if this doesn't work, there may be no treatment to pursue. This thought seems to be driven by a rise in bilirubin. 1.9 on some scale with normal limit of 1 that is different from what the onc usually sees. But the same lab had some sort of problem with another part of the blood test..I think the whole blood test should be redone elsewhere. And the borderline FISH makes me think that should be redone in another lab for comparison. Have e-mailed the onc about this. This is happening so fast.

Lani
09-17-2008, 09:47 AM
1: J Clin Oncol. 2008 Sep 15. [Epub ahead of print]
PMID: 18794539 [PubMed - as supplied by publisheMetronomic Cyclophosphamide and Capecitabine Combined With
Bevacizumab in Advanced Breast Cancer.
Dellapasqua S, Bertolini F, Bagnardi V, Campagnoli E, Scarano
E, Torrisi R, Shaked Y, Mancuso P, Goldhirsch A, Rocca A, Pietri
E, Colleoni M.
Medical Senology Research Unit and Division of Medical Oncology, Department of
Medicine; Division of Hematology-Oncology, Department of Medicine; and Division
of Epidemiology and Biostatistics, European Institute of Oncology; Department of
Statistics, University of Milan-Bicocca, Milan, Italy; Molecular and Cellular Biology
Research, Sunnybrook Health Sciences Centre; Department of Medical Biophysics,
University of Toronto, Toronto, Ontario, Canada; and Oncology Institute of
Southern Switzerland, Bellinzona and Lugano, Switzerland.
PURPOSE: Metronomic chemotherapy has shown efficacy in patients
with metastatic breast cancer. When used in association with targeted
antiangiogenic drugs, it was more active than metronomic therapy
alone in preclinical and clinical studies. PATIENTS AND METHODS:
Patients with advanced breast cancer were candidates to receive
metronomic oral capecitabine (500 mg thrice daily) and
cyclophosphamide (50 mg daily) plus bevacizumab (10 mg/kg every 2
weeks). RESULTS: In 46 assessable patients, we observed one
complete response (CR; 2%), 21 partial responses (PR; 46%), 19
patients (41%) with stable disease (SD), and five patients (11%) with
progressive disease, for an overall response rate of 48% (95% CI,
33% to 63%). Additional long-term disease stabilization (SD >/= 24
weeks) occurred in eight patients, for an overall clinical benefit (CR +
PR + SD >/= 24 weeks) of 68% (95% CI, 51% to 81%). Median
time to progression was 42 weeks (95% CI, 26 to 72 weeks).
Toxicity was generally mild. Grade 3 or 4 nonhematologic adverse
effects included hypertension (n = 8), transaminitis (n = 2), and
nausea/vomiting (n = 2). Higher baseline circulating endothelial cells
(CECs) were correlated with overall response (P = .02), clinical benefit
(P = .01), and improved progression-free survival (P = .04).
CONCLUSION: Treatment with metronomic capecitabine and
cyclophosphamide in combination with bevacizumab was effective in
advanced breast cancer and was minimally toxic. The number of
baseline CECs significantly correlated with response and outcome,
therefore supporting further studies on this surrogate marker for the
selection of patients to be candidates for antiangiogenic treatments.


This was for her2- bc (for her2+ they combined metronomic w herceptin)

Virtually all trials want normal liver functions as they do not want to cause liver failure/unacceptable toxicity caused by their "experimental combination"

Let's hope you mom's LFT problems were due to a virus or other transient, correctible cause. This happened to my dad about three weeks ago. His LFTs were 100 times normal and it was assumed it was due to one of his two cancers (one of which is already known to have metastasized to his liver). But two weeks later his LFTs were normal --his doctor ordered antibody titers for cytomegalovirus before going on vacation. It is unclear to me if they were ever done, or how they came out, but as my fathers LFTs went back to normal, it became a moot point.

Rich66
09-17-2008, 10:43 AM
Lani,
Does this study have implications for non-study treatment? The bilirubin will be retested tomorrow. I have asked that the FISH be redone since it is borderline "low side of high". What I have read labels that as "equivocal" results.
Any thoughts on Xeloda as monotherapy vs with Taxane?

StephN
09-17-2008, 02:47 PM
Rich -
Look up TriciaK on this site. She has heart trouble and DID take Herceptin for her mets. She has been NED for a few years now.

They say that mets grow more slowly in the elderly, so these people do not often get the immediate attention the younger patients get. The recheck is the best idea, but for the FISH test it takes longer than the usual labs.

I have a friend in her 70's who is back on Xeloda for the 2nd time and doing fine with it. The only Taxane this friend took was Abraxane and it was definitely tougher for her. Although the Abraxane shut down her mets when the Xeloda was no longer effective.

Sheila
09-17-2008, 03:09 PM
Rich
I was on Xeloda for over a year with great success and very little side effects...mine was with Herceptin. The beauty is that it is in pill form...you can take it at home.
Good luck tomorrow with your Mom.

Lani
09-17-2008, 06:05 PM
(perhaps even two)
]an article about New breast-cancer tests perhaps being too costly cited
TWO new diagnostic tests which could further hospitals' reach into the world of
genetic testing--it's unclear whether the new technologies for
detecting a breast-cancer gene will be better options financially than
existing tests or improve clinical outcomes.


Existing tests for her 2 to determine if a patient is a candidate for herceptin
" are thought to be sometimes unreliable and can be expensive. By contrast,
manufacturers of the newer HER2 tests--Invitrogen Corp.'s SpotLight
HER2 Chromogenic In Situ Hybridization, or CISH, test and Monogram
Biosciences' HERmark test--say their versions are either a better predictor
of Herceptin-treatment candidates or more affordable and equally as
accurate. The new offerings are competing to siphon market share from
Abbott Molecular's existing Fluorescence In Situ Hybridization, or FISH,
technology--currently considered the gold standard for HER2-gene
testing--and the Denmark-based diagnostics company Dako's HercepTest-
-currently used as a front-line test for the HER2 gene.
Despite some promising claims regarding the tests, hospitals are likely to
take a go-slow approach toward adopting them.
The maker of the Spot-Light CISH test is targeting current users of
Abbott's FISH test. Marketed under the name PathVysion, FISH probes
breast tumors for HER2 DNA then uses a florescent microscope to check
the sample for overproduction of HER2 genes. The test is considered the
more accurate of the two established diagnostic technologies, but FISH
testing does present challenges to providers. "It requires more time, is
more expensive and requires a special florescent microscope" when
compared to the older HercepTest, said Brian Leyland-Jones, director of
the Emory Winship Cancer Institute.
CISH operates without the need for a fluorescent microscope. As a result,
providers are anxious to see whether CISH could be a clinically sound,
more affordable substitute for FISH, Leyland-Jones added, noting
research suggests it might. According to a multicenter study conducted
by researchers at the 512-bed University of Texas M.D. Anderson Cancer
Center ill Houston, the University of Tampere in Finland and Invitrogen's
pathology department in Camarillo, Calif., FISH and CISH achieved nearly
identical results in identifying candidates for Herceptin treatment. For the
study, pathologists ran comparison tests on 226 breast-cancer specimens,
and found a 99% rate of agreement.
According to Bill Sweet, Invitrogen's director of product management, the
CISH costs about $70 per kit compared with $145 per kit for FISH,
adding that hospitals can bill for CISH under existing FISH CPT codes.
Medicare currently reimburses at a rate of $169 for FISH testing.
Meanwhile, at $3,350 per test, the new HERmark test is significantly
more expensive than any of its competitors. Monogram is wagering,
however, that the accuracy of HERmark will make it an appealing option.
Like HercepTest, HERmark looks for HER2 proteins. But HERmark is able
to take a precise measure of the level of the protein where HercepTest
relies on a pathologist's view of a specimen to estimate the level.
"The thought is, HERmark may be more accurate (than the three other
tests) in determining whether a patient will benefit from treatment with
Herceptin because Herceptin targets the HER2 protein and not the gene,"
explained Edith Perez, chairwoman of the Mayo Clinic's breast cancer
program. Mayo provided Monogram Bioscience with tumor specimens to
be used in additional studies of the diagnostic test, but Perez said that
she has received no compensation for participating in the research work.
Monogram Bioscience Chief Financial Officer Alfred Merriweather said that
reimbursement shouldn't be an issue for providers, as HERmark is a
proprietary diagnostic test. As a result, Invitrogen, not hospitals or
patients, will incur the responsibility for seeking reimbursement from
payers. Still, at $3,350 per test, HERmark's cost far outpaces insurers'
current rates of reimbursement for HER2 testing. "

Rich66
09-18-2008, 06:00 PM
Bilirubin recheck still at 1.8..slightly elevated.
Her2 is being rechecked here by IHC..the known to be inferior test. Didn't like it when I pointed this out. I had sent her these links previously:
http://www.medscape.com/viewarticle/562042
http://www.medscape.com/viewarticle/570997_4
"For these tumors, counting additional cells did not change the HER2 status because all showed equivocal amplification. On repeated FISH, the average number of cells counted was 40 (range, 30-60 cells). It seems from our study that repeated FISH on a larger tumor section is more helpful than counting additional cells on an equivocally amplified sample."

Neither article discusses using IHC to recheck.
Asked to have it sent to Mayo for independent FISH. In other words still in "equivocal" territory regarding 1.8 FISH and the Her2 issue altogether.

Visit emphasis was on Xeloda...maybe combined with AI. I brought up Taxol and she said not good with Xeloda...single agent approach better because lower toxicity. I mentioned Avastin and suddenly she said could do Avastin and Taxol. Maybe because of FDA fast track? I asked if it was more effective than xeloda and she said no one knows..never compared.
But...1!&$!
Chest x-ray shows 2cm mass in lung... Chest CT and bone scan will be done early October.
Trying to determine if she should take "something" before 2nd opinion next Thursday. Only drawback would be trial exclusion..maybe trials would take to long to enter/get approval anyway...right?
Doc here thinks it's probably ok..but it all makes me nervous and a bit crazy. I put a call into Cobleigh's nurse and hopefully the Dr. will call us tomorrow for guidance and/or earlier appointment for 2nd opinion.
Hard to know what's prudent..........

Rich66
09-22-2008, 07:00 PM
Getting kicked out of library.
After putting 2 oncs together...
Wednesday 9am Mom starts Taxol/carbo/Hercep(in case FISH becomes positive)
Please give thoughts, advise regarding side effects etc. Wondering about drugs to support immune and Iron.

jones7676
09-23-2008, 06:22 AM
I sure don't know enough about this to offer advice..but wanted to wish you the best and let you know I'm thinking of you and your mom.

Rich66
09-23-2008, 06:57 PM
Any comments on typicalside effects..especially day of first cycle?We are supposed to travel afterwards to Chicago (2.5 hr drive)

Rich66
09-24-2008, 12:36 PM
Thought plan was Taxol, carbo, hercep. IHC came back negative and the local doc felt the prudent thing was to just use Taxol, meet with Cobleigh tomorrow and add extra ingredients upon further discussion. I don't know about this but stepping into this slowly seemed to have some psych benefit to mom since she is unfamiliar with chemo. Seemed to think Carbo was not worth doing if her2 was negative. Mentioned gemcitazine or something as possible combo. Sure wish this her2 test would be resolved soon. Supposed to go to Mayo next for further FISH test. Strange. They gave me mom lorazepam for nausea and it made her speak gibberish. Gave her benadryl and it made her legs restless. Loopy and restless. Hard to see her this way. It's 2:30pm and we're supposed to drive 2.5 hrs to Chicago by tonight.As always..thoughts?

chrisy
09-24-2008, 01:25 PM
It is, of course, different for everyone. Your mom should be getting premeds including anti-nausea meds, a steroid, and benadryl.

When I had that same chemo combo, I had no nausea at all, ever. The first time infusion I got a fever that night (a few hours after the infusion). Her doctor will probably instruct her to call if she develops a fever over 100.7 or any other severe symptoms. When I called, they told me to take an ibuprofen (which worked).

For me, the steroid makes you wired (like, up cleaning the house all night), the benadryl makes you very very drowsy. In the end, the steroid will win and you won't be able to get to sleep without a sleep aid of some sort.

I dealt with this, and the potential for nausea, by taking an Ativan in the evening of my infusion whether I thought I needed it or not.

The steroid also made my face flushed the next day - didn't hurt but it freaked me out!

As I said, everyone is different so you won't know till you know. But I had no debilitating side effects at any time. I was a bit more spacey than usual (that was a joke) after my treatment, but that was a good excuse to not have to cook. I was able to eat normally tho.

The first cycle is pretty scary, for lots of reasons not least of which is just NOT KNOWING how you will be affected. But with that chemo, it is very reasonable to expect to NOT have nausea - but be armed with meds and take them at the first sign of problems if you need to.

Sheila
09-24-2008, 05:31 PM
Rich
I am anxious to see what Dr Cobleigh recommends...I am on Taxol every other week, and like Chrisy said, I get steroids, benedryl, & pepcid as premeds...the steroids wire me, as Chrisy said, so I am usually up all night...I was given Compazine the first treatment (when I also got Avastin), never had any nausea and never took it again...did they get the ER and PR results from your Moms tumor? Let us know how she makes out in Chicago.

BonnieR
09-24-2008, 11:12 PM
Just came across your post. Too late to offer the support you needed this morning. How did it go? It was my experience that the first day was more about anticipation. I was mostly just really tired when it was over. But I recall it was not until a day or two later that I began to have some bone pain.

Rich66
09-25-2008, 11:28 AM
Strange. Last minute negative IHC retest made local onc want to skip herceptin, and therefore skip carbo. The agreed 1st step was to do Taxol solely first round, meet with Dr. Cobleigh in Chicago after and go from there with any combinations. Still going to get 2nd FISH read somewhere. I wish I knew what lab Slamon relied upon. Anyone got 2nd opinion on equivocal her2 path?
Mom was up all the night before and the though of chemo made her a bit queasy. Doc said she'd give her an anti nausea pill. Turned out it was 1 miligram lorazepam. That made her absolutely loopy all day and part into the night. Benadryl made her legs extremele restless. I had to walk backwards in front of her to keep her from falling. Ended up canceling trip to Chicago based on Dr. Cobleigh's recommendation, trying to reschedule. Mom is fine today..maybe it would have been ok to go to Chicago.
That said, the Taxol part hasn't seemed to phase here too much. is harder to control bowel movements a potential SE? Overall she seems more comfortable with the idea of chemo. I just hope we can keep things moving and have aggressive enough treatment to get things more controlled. A couple interventional radiologists have expressed interest in her case after seeing scans. One told me they sometimes do IR (spheres etc) simultaneously with chemo when situation is dire.

Rich66
09-27-2008, 08:26 PM
Update: Having equivocal pathology sent to Dr. Press at UCLA (Slamon's recommended pathologist). Figure thee guy who invented the assay should be qualified to interpret it..
Mom is really feeling the Taxol now. Aches, pains, difficulty sleeping. Learning the implications of systemic, untargeted therapy. Man..I can pull up a long list of promising treatments..but have to watch her deal with what's available now. Rescheduled Chicago visit with Dr. Cobleigh for Tuesday. Hoping to vist IR Dr.(spheres) at U of I if it can be fit in. I hope mom is well enough to travel tomorrow night. I've been coming across some info talking about combining Taxol with Xeloda. Anyone had this combo?

Rich66
09-28-2008, 05:26 PM
In an ER now (Sunday 7:30pm). Mom hasn't slept for 2 nights due to pain in legs, abdomen, ribs back.

StephN
09-28-2008, 09:13 PM
Sorry to hear about the ER!
But the hard chemos can do that to a person. Make you feel like you have been hit all over with a bat.

I was given Neurontin and took a mild pain killer at times. so I hope that is what will happen with your Mom.

The worry factor may interfere with sleep as well, and a heating pad also helped me.

Rich66
09-28-2008, 09:23 PM
Morphine is helping. They will be admitting her and running abdomen and chest CT tonight. Did any of you have pain that seemed to move around?

carstell
09-29-2008, 07:07 AM
Hey Rich, I shot you off an email from my home address too. I had pretty bad bone pain with the Taxol. It was mainly in my hips and thigh bones, but I also felt it in my upper arms and ribs too. I was taking Vicoden pretty much through the treatments! Good luck with the other tests. Hope your mom can find some comfort!

Cheryl

Rich66
09-29-2008, 09:05 AM
Pain is being attributed to the Taxol. Abdominal scan seems to suggest progression in the liver, blood bilrubin at 5 from earlier 1.8. They can't stent the liver. Talking about release later today with oxycodone for pain. Talk of changing chemo regimen.

StephN
09-29-2008, 11:00 AM
At least there is a plan for Mom.

One other thing that can contribute mightily to pain is if she is getting the white blood count booster called Neupogen or Neulasta. This is often given with Taxol. Back and hips were the most painful for me.

Maybe they will look at Navelbine??

chrisy
09-29-2008, 01:59 PM
Hi Rich
Sorry, I haven't been paying attention. Sorry your mom is having such a rough go. Sending prayers and my best wishes for you both. Sorry, don't have any input on pain meds.

Rich66
09-29-2008, 02:53 PM
Chemo has been cancelled for Wed. Consult on Thursday. I'm scared the doc here is wanting to stop treatment. I don't know. Just getting such reserved comments from the docs subbing for her while admitted. Mom is doiong pretty well since switched to oral oxycodone. Still planning release in a couple hours. I'm really having trouble with all this.

Esther
09-29-2008, 03:09 PM
rich, did they tell you why they can't stent the liver? It's not really that big a procedure, they put you under anesthesia, and insert the stent in the liver through a tube in her throat.

Is she too physically frail at this point? If there's an actual blockage that they can see on the CT scan, I really can't think of a reason they would not do the stent placement.

Sheila
09-29-2008, 03:59 PM
Rich
So sorry to read about your Mom...I have never had problems like that with Taxol...especially the first one. What did the CT's show....is the pain possibly from progression in the liver and not the Taxol? Where is her consult appt at, in Wisconsin? Until they get definitive answers, it is probably best to have a plan and not make her sicker with more chemo. Have they mentioned any other chemos? Is she still getting a 2nd opinion in Chicago?
You will both be in my prayers.

Rich66
09-29-2008, 04:51 PM
Said they didn't think stent was possible based on some undetailed factors in the liver. Trying to figure out if mom..or I..are in ok enough shape to go to Chicago tomorrow for 2nd opinion. She's at UW-Madison now, follow up consult Thursday. She is currrently standing, combing hair in mirror getting ready to go. She's 71 and does come across frail these days, especially after the chemo. But much more herself iwth pain under control.
Thank you all for your thoughts.

BonnieR
09-30-2008, 07:49 AM
Rich, I just wanted to acknowledge your statement "I'm really having trouble with all this." It must be so difficult to be thrown into a situation with so much turmoil and indecision. You are really stepping up to the plate and doing everything you can. This is a good time to try practicing "one day at a time." Just do what is in front of you. Prepare a list of questions and concerns for the docs and come up with a game plan . You may feel more control when that is accomplished. Please keep us posted and keep the faith.

juanita
09-30-2008, 04:56 PM
rich- it's so nice to see you taking so much responsibilty for your mom. we're here for you! hugs and prayers, juanita

Rich66
09-30-2008, 11:03 PM
2nd opinion plan is continuing the painful Taxol with gemcitibane...n hope of "Quality Time"
oh..thi shas boosted mom immeasurably.
I'm sick of it. No onc would recommend chemo for adjuvant. Onc we settled with wound up being old school "no scan until symptoms" and left to pursue a new station in life while my mom quietly went stage 4 with no replacement onc. Oh..I should have been on top of this situation, right? All while tracking my Dad's forays into hospitals whilst in a nursing home? Now they say one shot at a guesswork of chemo for mom and probably nothing after if that fails. Sorry folks..don't give a shit if people feel I'm negative. This IS negative. Typing this from the business center of an expensive hotel overlooking the best and the brightest...but apparently not bright enough.
Gotta go wake mom up for her oxycodone.
Yes, I'm whacked.

chrisy
10-01-2008, 05:10 PM
Rich, I just sent you a pm.

How can we help you?

Rich66
10-04-2008, 12:28 PM
Hi folks. I have a momentary slice of calm and would like to recruit your help.
Can you find any other approaches like those below? Or..further info about these specifically? I'm in a random hospital with mom after a neutropenic fever that occurred while returning from Chicago. 3 different ERs in 4 days. Oncs here are looking at her case and I want to run options by them. I know they will likely say "not standard of care" etc. but ah well.


http://www.sciencedirect.com/science...3a8bce6ba64362 (http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WC2-4CTTJSK-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_version=1&_urlVersion=0&_userid=10&md5=f1b37ee1af2182d4c93a8bce6ba64362)



http://jjco.oxfordjournals.org/cgi/c.../full/29/8/3 (http://jjco.oxfordjournals.org/cgi/content/full/29/8/390)

StephN
10-04-2008, 01:12 PM
Gosh, Rich -
I have never heard of either one of these treatments. The Japanese one was in 1990 or so. I would imagine that even though one patient had success, this was not picked up and used more extensively.

Don't know where you would even GO to try either of these.

Hope your Mom's white count is better now and she can proceed with some kind of treatment.

She needs some stability now.

Esther
10-04-2008, 01:21 PM
Like StephN said, it will be difficult to find a location to get either of those treatments.

The first article you posted seems to refer to Provera or other similar drugs, the only thing I can think of is if you can find a sympathetic PCP to prescribe it for you. But there are side effects and she would need to be monitored closely.

If your mom still has standard treatment options, I'd opt for those first, as there is no reason to believe these other options mentioned in those links would be more helpful to her, and the standard options are based on clinical evidence.

In my case, I've always chosen to go with standard treatment options, and only looked to complementary or alternative options when I'm not on treatment. If I was left with no traditional treatment options, and no clinical trials were available to me, then perhaps I'd consider something like this. But not before.

Hope you find something to help your mom before too long.

Rich66
10-05-2008, 09:50 AM
Still in hospital. Good news is that bilirubin is 1.7.. a continued trend down from 5 a week ago. Still abnormal but on the low side of high where it was a few weeks ago. Abdomen (around liver) is softer..said might be sign of chemo benefit. Had slight fever yesterday, still getting antibiotics for possible infection and lactulose for elevated ammonia level.
Have the folks here with liver mets all had normal liver function tests? Abnormal liver figures rule out most trials and many direct treatments.

chrisy
10-05-2008, 03:12 PM
Rich, as I was reading your update, in the back of my mind was "but maybe the chemo itself is working". I hope so.

Re Esther's comment, that has also been my approach - go with the "proven" approach but also complement these with, well, complementary approaches.

Re your question on liver functions, I think I had always had "normal" liver function , until this latest treatment. i've been dealing with elevated LFT's since beginning it - and for me, it is clearly treatment related vs. cancer related (my AST was 35 the morning of my first treatment, and 115 a week later!). It's good to hear that the bilirubin is coming down - THAT may be a good sign in terms of the "is the chemo working" question.

Lani
10-07-2008, 06:34 AM
1: Arch Pathol Lab Med. 2008 Oct;132(10):1635-47.

Comparison of quantitative immunofluorescence with conventional methods for HER2/neu testing with respect to response to trastuzumab therapy in metastatic breast cancer.

Giltnane JM, Molinaro A, Cheng H, Robinson A, Turbin D, Gelmon K, Huntsman D, Rimm DL.
Departments of Pathology, Yale University School of Medicine, New Haven, Connecticut 06520-8023 , USA.
CONTEXT: Selection for trastuzumab therapy depends on a companion diagnostic assessment of HER2 by either immunohistochemistry (IHC) for protein overexpression or fluorescence in situ hybridization (FISH) to detect gene amplification. Although many studies have compared IHC to FISH, few have compared the tests to the true gold standard, tumor response. OBJECTIVE: To compare HER2 testing by FISH and IHC along with a third immunofluorescence-based assay (automated quantitative analysis-tissue microarray [AQUA-TMA]) and to assess the value of each test for prediction of response to trastuzumab. DESIGN: Immunohistochemistry and FISH assays were done on both whole slides (IHC-WS and FISH-WS) and on TMAs (IHC-TMA and FISH-TMA). AQUA was only done on TMAs (AQUA-TMA). Response was assessed according to modified Response Evaluation Criteria in Solid Tumors. RESULTS: AQUA-TMA scores showed a significant linear relationship to both the FISH signal ratio and IHC scores on whole sections and TMAs. Assay assessment by outcome showed no association between response and FISH-WS ratio (P = .96), FISH-TMA (P = .55), IHC-WS (P = .75), or IHC-TMA (P = .06), but a significant relationship between AQUA score and categoric response was observed (P = .01). Assessed as a function of outcome using models of logistic regression, both AQUA-TMA and IHC-TMA were equally significant (P = .01). FISH-WS was the most sensitive assay, with a significantly higher true-positive fraction than all other tests except AQUA-TMA, although it was the least specific. IHC-TMA was the most specific assay. The lowest misclassification rate was achieved using AQUA-TMA (0.30). CONCLUSIONS: Both AQUA-TMA and IHC-TMA were substantially more predictive than the FISH or IHC-WS tests. Although these results are derived from a small retrospective series, they suggest that accurate measurement of protein expression and unbiased selection of tissue for measurement may be key factors in prediction of response.

Links

Delineation of HER2 Gene Status in Breast Carcinoma by Silver in Situ Hybridization is Reproducible among Laboratories and Pathologists.

Carbone A, Botti G, Gloghini A, Simone G, Truini M, Curcio MP, Gasparini P, Mangia A, Perin T, Salvi S, Testi A, Verderio P.
From the Department of Pathology,* National Cancer Institute of Milan, Milan, Italy; Department of Pathology, National Cancer Institute "G. Pascale" of Naples, Naples, Italy; Diagnostic Immunohistochemistry and Molecular Pathology, Division of Pathology, Centro di Riferimento Oncologico, Aviano, Italy; Department of Pathology, Ospedale Oncologico, Bari, Italy; Department of Diagnostic Technologies, National Cancer Institute of Genoa, Genoa, Italy; and Medical Statistics and Biometry,** National Cancer Institute of Milan, Milan, Italy.
An automated enzyme metallographic silver in situ hybridization method (SISH) has been reported to successfully determine human epidermal growth factor receptor 2 (HER2) gene amplification. We evaluated the staining and interpretative reproducibility of the HER2 SISH assay at five laboratories and compared SISH results with other in situ hybridization (ISH) methods. The HER2 gene status of 89 breast carcinomas was analyzed in parallel using manual dual-color fluorescence ISH, manual chromogenic ISH, and bright-field automated SISH. A total of 1098 SISH-stained slides were evaluated. For comparison, all specimens were stained by 4B5 immunohistochemistry for HER2 protein expression. Interpretation was performed by pathologists at five different laboratories using the algorithms provided by the manufacturers and the guidelines of American Society of Clinical Oncology/College of American Pathologists. Staining and interpretative reproducibility were measured through the computation of weighted kappa statistics. Following the optimization of SISH staining, 1077/1098 (98%) of slides were evaluable. Excellent reproducibility and efficacy of HER2 SISH staining, and interobserver interpretation (Kw = 0.91), were observed among five sites. For the 89 invasive breast cancer cases, the overall rate of concordance between consensus 4B5 and consensus SISH, fluorescence ISH, and chromogenic ISH was 96.6% (86/89), 97.8% (87/89), and 96.6% (86/89), respectively. Overall concordance between positive and negative SISH and fluorescence ISH results, as well as between individual and consensus positive and negative SISH results, was excellent (P < 0.001).
PMID: 18832456 [PubMed - as supplied by publisher

Rich66
10-07-2008, 06:42 AM
So...path is at USC getting FISH. Now what?

Lani
10-07-2008, 07:00 AM
I would think they would be very thoughtful since this is a "third" opinion, suggesting another test IF they think there is any question about their result

Rich66
10-07-2008, 11:20 AM
Mom is eating so little these days. no nausea. just not interested. Anyone here have this and then recover appetite as treatment went along? I'm just afraid it's a very bad sign.

Believe51
10-07-2008, 11:52 AM
Ed had many eating issues with massive weight loss. He had the choice of Marinol but opted for Magace which seemed to get him over the hump so that eating resumed naturally after a while (in combination w/other plans). It is scary when this issue occurs to a patient. Ask doctor what options for stimulating her appetite could be. Also try to have her eat small snacks and light meals, she will struggle and maybe gag when trying to eat. These small snacks like a handful of raisins or a peach is not enough to sustain her but may get her over her hurdle. Anything to keep her hydrated and have a little something in her belly. I know many people do not like Ensure, but for a long time I had to motivate Ed to drink 3 or 4 a day in between these snacks and light meals. Thankful for Mom's lack of nausea and praying for her appetite to rebound>>Believe51

Rich66
10-07-2008, 06:31 PM
"Care Support" has orchestrated a meeting with the onc at this hospital, wants to address "prognosis" so that care options are evaluated. I know it's bad..but I have been avoiding hearing a full on discussion. i have enough trouble maintaining any hope as it is.

Rich66
10-09-2008, 02:09 PM
Strange..the above never happened. No explanation.

regarding the depo provera study. http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WC2-4CTTJSK-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_version=1&_urlVersion=0&_userid=10&md5=f1b37ee1af2182d4c93a8bce6ba64362
One of the researchers from Poland is currently a candidate for the board of directors of ASCO:
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WC2-4CTTJSK-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_version=1&_urlVersion=0&_userid=10&md5=f1b37ee1af2182d4c93a8bce6ba64362
"Jacek Jassem, MD, PhD, is a Professor of Radiotherapy and Clinical Oncology, and Head of the Department of Oncology and Radiotherapy at the Medical University of Gdansk, Poland. His primary scientific interests are lung, breast, head and neck cancers, and molecular oncology. Dr. Jassem's ASCO involvement includes serving as Immediate Past Chair of the International Affairs Committee, and previously as a member of the International Development and Education Awards (IDEA) Working Group"

So..I doubt it's complete BS.

Rich66
10-20-2008, 10:33 PM
Oy..lost an extensive post.Bottom line: new onc prescribing 4 week cycle of Xeloda in hopes of improving liver function with hopes of following with Taxotere based combo with high success rate in local setting. Ah...
Lab results from extensive USC lab reinterpret= 1.7 her2..i.e. "negative"
While in the hospital for infection, LFT trended downward. Last check 2 days before beginning Xeloda had bilirubin of 1.1, essentially normal and way down from a 5.3 couple weeks earlier. Other figures apparently were still elevated.

juanita
10-21-2008, 04:10 PM
i hope that things go better with this new onc. please keep us informed of how mom is doing.

Rich66
11-04-2008, 06:26 PM
Boy...hard to not have any information other than mom's general lack of side effects. Urine and stool appear to have become more normal colored, although sometimes more frequent. Lower leg and feet swelling has been better in the last few days. Although there was talk of starting low and increasing dosage along the way, Onc decided after 1st week on and off to maintain at 1500mg x2 per day. I've perused the web enough to discern the dosage issue was contentious in the beginning days of Xeloda. Anyone care to say what their dosage was?

Believe51
11-05-2008, 11:26 AM
Lack of side effects is good, hey, we will take that right? My memory escapes me at the moment about the dosage Ed took since it was in 8/07 but I will gladly review my files for you.

Popping this up to get some replies on others dosages. Talk soon my friend>>Believe51

Rich66
01-07-2009, 08:52 PM
Update: Had scans and bloodwork Monday afternoon but ended up going to the ER late that night for chills/fever. Got antibiotics and temp went down quickly. No word on what caused it, blood counts good. Consult regarding Spheres at another facility put off again.
Mom has been continuing on Xeloda since mid October
Liver function tests and CA27 continue to improve.
But...
The scans show no change in liver but 1 possible new 3mm in lung and one previous 1.2cm now 1.7cm. The 3mm is noted as to be small enough to be missed earlier due to calibration etc. One other is basically the same.
This since 11/28 scan. Now..the earlier scan was done at a different facility but...
Is measurable growth of any sort what one calls progression?
I am also concerned that she had an appt. lined up for Friday to discuss things but the onc came to her room briefly before I was at the hospital and said that the appt. woul dbe cancelled. Mom asked if he head seen the scans and he said he hadn't yet..though I notice the ER report referred briefly to the expanding nodule.
The 11/28 scan was thought to be signs of multiple improvements in the lungs so this seems like a bad turn. I will crash in mom's room tonite so as to be there when the onc makes his early rounds.
Any thoughts folks? Funny how quickly the wise cracks can leave you.

schoolteacher
01-08-2009, 05:25 AM
Rich,

I will be praying and thinking about you and your mom this morning.

You are a good son.

Amelia

Joy
01-08-2009, 06:54 AM
for any news and sending lots of love to you and your mom.

Rich66
01-08-2009, 08:39 AM
Well..mom's gonna be living la vida hospital another night due to a 100 temp last night.
Regarding the scans, the onc seems to think the measurable growth could be a combination of an irreglarly shaped tumor "sliced" by the CT at a slightly different spot. I'm hoping he isn't confusing the notation on the 3mm spot with the measurable growth. Maybe I'll revist that tomorrow. Plan is to continue Xeloda but re-scan in 6 weeks, a shorter interval than usual. I'm getting a little whiff of "moving the goal posts" and said as much this morning. In our first consult, there was talk of a need for 50% tumor reduction in 6-8 weeks. That was 2nd week of October. The thought then was to get the liver to a better place with the potential of a more aggressive regimen that's harder on the liver. He did say Xeloda might be osmething that could be used for along time if it was effective. Although the 50% reuction seemed unrealistic to me, seems we aren't even close to that at 12 weeks. Onc now seems to think that because things are relatively stable with improving blood numbers(LFT, CA27) and minimal side effects, Xeloda should be continued in hopes of a later kicking in. Based on my concerns about a single biopsy site determining her2 status, I brought up the her2 serum test and he thought that might be a good idea a little later but said interpreting a negative result is difficult. I mentioned that a positive result would be something to work with and he agreed. So..I'm thinking, just do it now...but..everything is a waiting game it seems. And you all know how fun that is.
I think I have to remind myself how bad things were looking in early October. Important to push to better the situation but have to maintain a little perspective. I think mom is better at that because she feels better than then. I sometimes think about the issues both my parents (Dad in a nursing home) are dealing with and have to be thankful they aren't flipping out.
Ah well..I haven't gone into the spheres issue with the onc but there is a tentative consult on that next week. I hope to send them current scans today or tomorrow.
As always, feedback appreciated,
Rich

Believe51
02-04-2009, 01:52 PM
How is Mom feeling?? She has been on the old mind lately but I have been too consumed to ask. So when you get a moment please post an update. Prayers are said daily for this dear sweet woman and that amazing son of hers. Blessings friend>>Believe51

Rich66
02-05-2009, 08:31 PM
Mom is in the midst of restarting Xeloda after 1 week break due to some hand foot syndrome. She is taking B6 and applying henna and so far so good. Scheduled for scans next week. still considering a consult in Chicago for Sir spheres and/or LC beads.
Meanwhile...
I've been in a hospital overseeing my dad's care for over 2 weeks. He is on a ventilator for a second time, has had a number of close calls and had a couple procedures to stop urinary bleeding which revealed prostate tumor in his bladder. Still struggling to control the bleed. As I have mentioned elsewhere, Dad's Uro told him he would never have to deal with cancer due to lowered PSA from Lupron. That Uro is fired. Dad hasn't been well enough to even learn what's going on. It's all getting a bit much, folks.

WomanofSteel
02-05-2009, 09:28 PM
I feel for you Rich. I take care of my 2 80something year old parents and am fighting this blasted disease myself. I know how tiring and overwhelming it can be. Try to take care of yourself and get any and all help you can. Trust me you can make yourself sick dealing with all this stuff. Hang in there guy!

schoolteacher
02-06-2009, 05:39 AM
Rich,

My heart goes out to you and your family. I pray that you and your family recieve a blessing to alleviate some of the stress that you must be experiencing.

Amelia

chrisy
02-06-2009, 09:23 AM
Rich, this must be nearly unbearable. My heart goes out to you, and prayers for your mom and dad and especially for you.

Much love
chris

Shobha
02-06-2009, 11:27 AM
Rich, no advice since I am still new at all this but sending lots of prayers and positive thoughts for your Mom and you.

jones7676
02-06-2009, 06:36 PM
Wow, what you have been through....I hope that something works out for your mom. You are a wonderful son! I will continue to hope for something positive to happen.

Jackie07
02-06-2009, 11:00 PM
Be sure to take good care of yourself while taking care of your folks.

Rich66
02-07-2009, 03:41 PM
If anyone is up to speed on locally advanced prostate cancer treatment options, let me know. I'd appreciate a cheat sheet or shortcut. From what I've read so far, her2 exists in PC but Herceptin seems of no benefit. Tyrokinse inhibition might be helpful so it might still be useful to have pathology check her2 status. The onc in the hospital says he won't request the test.

Unregistered
02-09-2009, 04:30 AM
Rich ,
Have you heard of the Budwig Diet? Not too hard to follow and Im having good luck so far. Definately worth looking into!

Joy
02-09-2009, 11:07 AM
that I hope you are finding some time to care for yourself as you are taking such great care of your parents. It is so heartwarming-all that you are doing. I just want you to know that we are out here sending you strength and hope for all that is going on with your family.

Rich66
03-21-2009, 02:33 PM
Latest scans show mets in liver and lungs almost unchanged on Xeloda. But...1 lung nodule has increased to a point to be considered progression. Using an article forwarded to me by Debbie L, I nudged the onc to get the her2 serum test in case mets other than the isolated liver biopsy might tip the scale towards Herceptin benefit. The onc at this point is suggesting single agent Navelbine, adding H if test suggests it. Any thoughts on Navelbine? For what it's worth, in the past this onc has referred to a "big treatment" protocol that they have had great results with but that mom's liver was too fragile to handle. Despite unchanged liver scans, her numbers are almost normal and she is symptomattically great, though still distended in abdomen. However, the onc didn't discuss the "big treatment" until I brought it up. I should have been more direct in asking why. He seems to be holding off on that due to the side effects involved. My concern is my understanding that each preceding treatment makes the next less potent. Is that considered the case?
How has Navelbine been for folks? Seems like it's usually paired with something.
I am still hoping to get mom a Sir spheres/LC beads consult, possibly an isolated hepatic perfusion consult too, if it's being done for MBC.
Please share your thoughts.

Joan M
03-22-2009, 06:20 AM
Rich,

I'm glad your mom is doing and feeling better and that her oncologist is on top of the situation. If you're leaning toward spheres you should ask Eric because I believe Caryn had that procedure.

Hugs to you and your mom,

Joan

Believe51
03-23-2009, 12:51 PM
Here is some more prayers for Mom and you as you move forward. Funny how I was just thinking of her and the post popped back up. Tell Mommy I am sending more love and prayers her way. And Rich, for a son you are tops.>>Believe51

Rich66
03-23-2009, 07:28 PM
Thanks. Any thoughts on some of the particulars?
- Navelbine as monotherapy?
- Subsequent treatments producing less results?
- Believe51: any news on your Rexin-G contact?

vickie h
03-23-2009, 07:45 PM
Hi Rich, I've been gone for a few days and just got home but wanted to send you love and any info I could. I don't know about Navelbine as a mono therapy, but I am on a second round (first one was over 2 years ago) of it along with herceptin and oral Cytoxan. It seems to be making a difference already (I've only had 2 weekly treatments). Navelbine seems to always do the trick, at least for an extended period of time. I wish I had more info for you. I also am trying to get all the info I can on Rexin-G along with RAD 001.
Sending you love and prayers, Vickie

Rich66
03-30-2009, 09:38 PM
Well..
Serum Her2 came back a bit above normal so mom starts Navelbine/Herceptin on 4/1. Any tips on what to expect side effects wise? I asked about baseline MUGA but they said not necessary since she has not had Adriamycin. I think she had a MUGA of 50 back in '05. Vickie, did your onc say how much benefit the cytoxan might add?

Rich66
04-01-2009, 10:49 AM
Well...brought mom and she is getting Herceptin..alone. Not what we discussed with Onc last visit but nurses say if H doesn't do the trick, Navelbine can be added. I'm a bit confused since prior to the serum test(which I asked for) she was considered her2 negative. But now with slightly elevated her2 serum results (14, <12.8=normal) the plan seems to be to bet everything on Herceptin. Granted, it can be changed in the future. But..doesn't this seem a bit strange? It wasn't that long ago her liver was in pretty bad shape function-wise.

StephN
04-01-2009, 11:02 AM
Hey, Rich -
Well, this is what you have been fighting for. Look up TriciaK here. She is a little older and did well on Herceptin against her mets.

I wonder WHICH HER2 Serum test she had? The one I get (Elisa - enzyme linked immunoabsorbent assay) has 15 has the top end of normal. Test is performed by Laboratory Corporation of America.
Seems to be more than one such test??

I think it is a good plan to see how the Herceptin works, since it is easier on one's system. They can check markers and labs in a short time and get some info on how it is working.

Rich66
04-01-2009, 12:38 PM
Ok...

The test appears to have been ELISA by Quest Diagnostics. Says "Reference Range: <12.8 ng/ml"
"Result 14.0"

Looks like Triciak had Herceptin with Navelbine first, then H alone. Not sure how her2 pos she is. Biopsy and serum suggests mom has a mix of her2 pos and borderline/negative. That's what concerns me about using only a targeted therapy...especially with multiple met sites (lungs, liver). I brought up the serum test in case a broader coverage was indicated.
I'll try to keep an open mind on this for now and see if the onc gets back to us. She'll have markers on the 15th and consult/infusion on the 20th.
Doesn't Herceptin alone warrant MUGA monitoring?

Rich66
04-01-2009, 02:06 PM
Brand new, interesting and concerning:

J Clin Oncol. (javascript:AL_get(this, 'jour', 'J Clin Oncol.');) 2009 Apr 1;27(10):1685-93. Epub 2009 Mar 2.http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--highwire.stanford.edu-icons-externalservices-pubmed-standard-jco_full.gif (http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3051&itool=AbstractPlus-def&uid=19255335&db=pubmed&url=http://www.jco.org/cgi/pmidlookup?view=long&pmid=19255335) Links (javascript:PopUpMenu2_Set(Menu19255335);)

Utility of Serum HER2 Extracellular Domain Assessment in Clinical Decision Making: Pooled Analysis of Four Trials of Trastuzumab in Metastatic Breast Cancer.

Lennon S (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Lennon%20S%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Barton C (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Barton%20C%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Banken L (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Banken%20L%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Gianni L (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Gianni%20L%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Marty M (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Marty%20M%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Baselga J (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Baselga%20J%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Leyland-Jones B (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Leyland-Jones%20B%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
Winship Cancer Institute, Emory University, School of Medicine, 1701 Uppergate Dr, Atlanta, GA 30322, USA; LEYLAND@emory.edu.
PURPOSE Trastuzumab is a humanized monoclonal antibody directed against human epidermal growth factor receptor 2 (HER2). Trastuzumab alone or in combination with chemotherapy has been shown to be effective in patients with HER2-positive early and metastatic breast cancer. The extracellular domain (ECD) of the HER2 protein may be shed into the serum and is detectable using an enzyme-linked immunosorbent assay. Correlations have been reported between raised baseline ECD levels and response to trastuzumab, suggesting that serum ECD levels may be useful in making treatment decisions in patients with HER2-positive breast cancer. We investigated this relationship, and also the effect of trastuzumab and chemotherapy on ECD levels, in patients with advanced breast cancer. METHODS This study analyzed sequential ECD determinations on 322 patients treated with six different treatment regimens in four clinical trials. Results Baseline values were available in 296 patients, and of these, 205 (69%) had raised levels (> 15 ng/mL). No clear relationship was found between baseline ECD levels and tumor response. After initiating combination therapy, ECD levels declined irrespective of treatment received and tumor response. For trastuzumab monotherapy, some trend between changes in ECD levels in early cycles and best response was discernable, but the overlap was too broad to be clinically useful. Disease progression was not reliably predicted by rising ECD levels in the majority of patients. CONCLUSION Based on our data, we cannot recommend using serum HER2 ECD levels to make trastuzumab or other treatment decisions for individual patients with advanced/metastatic breast cancer.
PMID: 19255335 [PubMed - in process]

Rich66
04-04-2009, 08:52 PM
Ok..that last post of mine sure questions the benefit of the serum Her2 test. But..in the meantime, mom has received Herceptin. My question is whether an every three weeks schedule has been validated. The lit included with Herceptin mentions weekly.

There is this study:
1: BMC Cancer. (http://javascript%3Cb%3E%3C/b%3E:AL_get%28this,%20%27jour%27,%20%27BMC%20Cance r.%27%29;) 2007 Mar 20;7:50.http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--www.biomedcentral.com-graphics-pubmed-bmc.gif (http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3196&itool=AbstractPlus-def&uid=17374151&db=pubmed&url=http://www.biomedcentral.com/1471-2407/7/50) http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--www.pubmedcentral.nih.gov-corehtml-pmc-pmcgifs-pubmed-pmc.gif (http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3494&itool=AbstractPlus-nondef&uid=17374151&db=pubmed&url=http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17374151) Links (http://javascript%3Cb%3E%3C/b%3E:PopUpMenu2_Set%28Menu17374151%29;)
Vinorelbine plus 3-weekly trastuzumab in metastatic breast cancer: a single-centre phase 2 trial.

De Maio E (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22De%20Maio%20E%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Pacilio C (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Pacilio%20C%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Gravina A (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Gravina%20A%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Morabito A (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Morabito%20A%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Di Rella F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Di%20Rella%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Labonia V (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Labonia%20V%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Landi G (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Landi%20G%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Nuzzo F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Nuzzo%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Rossi E (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Rossi%20E%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Silvestro P (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Silvestro%20P%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Botti G (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Botti%20G%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Di Bonito M (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Di%20Bonito%20M%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Curcio MP (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Curcio%20MP%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Formichelli F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Formichelli%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), La Vecchia F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22La%20Vecchia%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Staiano M (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Staiano%20M%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Maurea N (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Maurea%20N%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), D'Aiuto G (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22D%27Aiuto%20G%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), D'Aiuto M (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22D%27Aiuto%20M%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Thomas R (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Thomas%20R%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Signoriello G (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Signoriello%20G%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Perrone F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Perrone%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), de Matteis A (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22de%20Matteis%20A%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
Clinical Trials Unit, National Cancer Institute, Via M, Semmola, I-80131 Naples, Italy. linda.demaio@uosc.fondazionepascale.it <linda.demaio@uosc.fondazionepascale.it>
BACKGROUND: After two studies reporting response rates higher than 70% in HER2-positive metastatic breast cancer with weekly trastuzumab and vinorelbine, we planned a phase 2 study to test activity of the same combination, with trastuzumab given every 3 weeks. METHODS: Patients with HER2-positive metastatic breast cancer (3+ at immunohistochemistry or positive at fluorescence in situ hybridization), PS < or =2, normal left-ventricular ejection fraction (LVEF) and no more than one chemotherapy line for metastatic disease were eligible. Vinorelbine (30 mg/m2) was given on days 1 & 8 every 21 and trastuzumab (8 mg/kg day 1, then 6 mg/kg) every 21 days). A single-stage phase 2 design, with p0 = 0.45, p1 = 0.65, type I and II error = 0.10, was applied; 22 objective responses were required in 39 patients. RESULTS: From Nov 2002 to May 2005, 50 patients were enrolled, with a median age of 54 years (range 31-81). Among 40 patients eligible for response assessment, there were 7 complete and 13 partial responses (overall response rate 50%; 95% exact CI 33.8-66.2); 11 patients had disease stabilization, lasting more than 6 months in 10 cases. Response rate did not vary according to patients and tumor characteristics, type and amount of previous chemotherapy. Within the whole series, median progression-free survival was 9.6 months (95% CI 7.3-12.3), median overall survival 22.7 months (95% CI 19.5-NA). Fifteen patients (30%) developed brain metastases at a median time of 12 months (range 1-25). There was one toxic death due to renal failure in a patient receiving concomitant pamidronate. Twenty-three patients (46%) had grade 3-4 neutropenia, 2 (4%) grade 3 anemia, 4 (8%) febrile neutropenia. Two patients stopped treatment because of grade 2 decline of LVEF and one patient because of grade 2 liver toxicity concomitant with a grade 1 decline of LVEF. One patient stopped trastuzumab after 50 cycles because of grade 1 decline of LVEF. CONCLUSION: Although lower than in initial studies, activity of 3-weekly trastuzumab plus vinorelbine fell within the range of results reported with weekly schedules. Toxicity was prevalently manageable. This combination is safe and active for metastatic breast cancer patients who received adjuvant taxanes with anthracyclines.

Rich66
04-05-2009, 11:37 AM
1: Ann Oncol. (javascript:AL_get(this,%20'jour',%20'Ann%20Oncol. ');) 2007 Dec;18(12):1969-75. Epub 2007 Sep 9.http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--highwire.stanford.edu-icons-externalservices-pubmed-custom-oxfordjournals_final_free.gif (http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3051&itool=AbstractPlus-def&uid=17846020&db=pubmed&url=http://annonc.oxfordjournals.org/cgi/pmidlookup?view=long&pmid=17846020) Links (javascript:PopUpMenu2_Set(Menu17846020);)
Optimizing clinical care of patients with metastatic breast cancer: a new oral vinorelbine plus trastuzumab combination.

Catania C (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Catania%20C%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Medici M (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Medici%20M%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Magni E (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Magni%20E%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Munzone E (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Munzone%20E%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Cardinale D (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Cardinale%20D%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Adamoli L (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Adamoli%20L%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Sanna G (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Sanna%20G%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Minchella I (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Minchella%20I%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Radice D (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Radice%20D%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Goldhirsch A (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Goldhirsch%20A%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Nolè F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Nol%C3%A8%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
Division of Medical Oncology, Unit for Medical Care, Department of Medicine, European Institute of Oncology, Milan, Italy. chiara.catania@ieo.it
BACKGROUND: Trastuzumab (T) combined with i.v. vinorelbine (i.v.VNR) is an active regimen for patients with advanced breast cancer (ABC). In order to further improve quality of life of patients undergoing treatment for ABC, a new regimen using oral vinorelbine (oVNR) (d1 + d3) plus q3wks T was tested (ToVNR). PATIENTS AND METHODS: Thirty-nine patients with ABC, human epidermal growth factor receptor 2/neu 3+ or FISH positive received 288 treatment cycles with T 6 mg/kg (loading dose, 8 mg/kg) on d1 and oVNR 55 mg/m(2) on d1 + d3, q3wks until disease progression or unacceptable toxicity. RESULTS: Thirty-seven patients and 286 treatment cycles were evaluated (two patients were lost to follow-up). Treatment was very well tolerated. Two patients had complete response (CR), 14 partial response (PR), 17 stable disease (SD) and four disease progression (PD) (overall response rate: 43%). Clinical benefit rate (CR + PR + SD >24 months) was 73%. Median time to progression was 8.9 months (range 2-27) and median duration of response was 10.9 months (range 2-27). CONCLUSIONS: The ToVNR combination is active and very well tolerated. It favorably compares with the combination of T and weekly i.v. administered VNR, allowing a more convenient once every three weeks hospital admission and leaving patients and care providers free from the unpleasant effect of i.v.VNR.

Rich66
04-05-2009, 11:46 AM
Ok..my propellor in training is sputtering trying to distinguish the results between weekly and triweekly Herceptin... But I am still asking if any of you folks did Herceptin without heart evaluation.

Jackie07
04-05-2009, 12:02 PM
Rich,

My 3-week chemo+Herceptin was continued with weekly Herceptin when my heart function decreased more than 10%. Then I had to stop completely because of further decline. MUGA score was the criteria. Although this time when I had the scar tissue removed (thought they were new lumps) I only had echocardiogram before surgery.

Rich66
04-05-2009, 04:37 PM
found this in a powerpoint presentation. Note higher loading dose (weekly is 4mg/kg, then 2 mg/kg):

Pharmacokinetic data for Herceptin® support the use of a 3-weekly dosing regimen
lTo maintain drug exposure at levels similar to those observed with the weekly regimen, Herceptin® must be administered at 8mg/kg followed by 6mg/kg 3-weekly
lThe 3-weekly regimen has been shown to be well tolerated and effective in combination with paclitaxel and alone
lThe 3-weekly regimen is being used in major trials investigating Herceptin® as adjuvant therapy
lLoading schedules will be investigated to determine whether Herceptin® steady-state levels can be attained more rapidly while maintaining safety

Rich66
04-09-2009, 03:30 PM
Ok..out of curiousity I called to find out what loading/initial dose mom got: 4mg/kg..to be followed by 6mg/kg. Ok...so 3wk is usually 8mg/kg loading with 6mg/kg after. So..does it make sense to have half the normal loading dose and check for results in 3 weeks? Seems like underdosing for the first 3 weeks would limit chance of positive signs. Maybe this was done to minimize side effects but it could confuse whether it is helpful.
Thoughts?

Debbie L.
04-11-2009, 08:32 AM
Hi Rich,

Maybe the person reading the dosing to you got it wrong? The whole meaning of a "loading" dose is to get a therapeutic level into the system at the onset with a higher dose initially, and then to maintain it thereafter (with, duh, the "maintenance" dose). I'll be eager to hear what explanation they give you for this weird dosing. Every reference that I can find has just the two options, as you noted, for either weekly or q3 weekly dosing. That seems to be the same whether it's given adjuvantly or for stage IV and regardless of what else it's given with.

And some kind of cardiac monitoring is standard, per NCCN guidelines and others, for Herceptin with adjuvant treatment, but I can't find mention of cardiac monitoring in the guidelines for advanced disease. It seems like at least a baseline LVEF would be needed.

Debbie Laxague

Sheila
04-11-2009, 09:28 AM
Rich/Debbie
Just as an FYI
I have had Herceptin weekly, every 3 weeks and every 2 weeks...which is my current schedule....my muga and or Echos have not varied with any of the schedules....my schedule is based on convenience.

Rich66
04-11-2009, 10:02 AM
I can wrap my head around the idea that different doses can keep an appropriate level of Herceptin in the system for a given interval. I have not, however, seen anything to support a 1 week loading dose for a 3week interval.
This seemed to catch the nurse who read it to me by surprise. She reread it and told me the usual dosages and that she had no explanation for the dosage. She said she could see my previous request for clarification attached to the chart and would have the onc call me the next day which would have been yesterday. I try to be respectful and patient but this kind of thing makes me really wonder.

Rich66
04-18-2009, 09:57 AM
Talked to the Onc and he said the lower initial dose was to gauge reaction. Looks like she will get the 6mg/kg dose Monday.
Mom had her labs yesterday and general numbers were pretty good, waiting on CA27. She also had her MUGA which was 51 back in '05. Yesterday it was 65. Pretty surprising since she hasn't been doing anything to bolster her heart. Is the test prone to variation?

Believe51
05-04-2009, 11:27 PM
Rich, I have noticed that you too stay up all hours of the evening, not tonight but this week. Caregivers gotta sleep you know (yeah I wish).

Wanted to hear how Mom is. Although I do not post on this thread frequently, I do keep up with it the best I can. You are such a special son and I know that is one heck of a Mom too!! Please update us when you can, you are probally sleeping right now....hahaha.>>Believe51

PS: I will be able to start releasing public information about Rose's Foundation which is well beyond a Rexin-G project. This is big and in order to be a non-profit organization she has to take steps legally. June should be her starting date and so far she is right on target. Talk soon......much more than just Rexin-G

Rich66
05-05-2009, 09:41 AM
I'm typing from onc office computer.
Mom is still feeling well. I sense there has been more coughing lately but it's a complicated situation with both emphysema and lung mets.
Mom just had labs then chest/ab scans. Fortunately, I asked about the Her2 serum test, thinking I would nudge them to exepedite sendout to California (We're in WI). Well...apparently it was in the orders but wasn't being sent out. Someone missed the order. Another instance backing up vigilance which sometimes is interpreted as paranoia. At least today, the lab tech thanked me for asking them about it. Sure wish it wasn't necessary. HER2 serum might not be back in time for Monday's appointment with onc. We'll see. I haven't been a fan of the Herceptin monotherapy approach but the onc seems to want to gauge things that way, at least to start. If scans show progression, my thought is the serum test, if levels drop >20%, might still suggest benefit of continuing Herceptin. Seems like the new info suggests continuing H after progression anyway. or..switch to Tykerb or H+T. Onc said (via nurses) that scans will dictate next steps, not Her2 ELISA. So...why are we doing it? Ah..always full of questions. Do you folks ever wonder what really goes on in oncs heads?
FWIW, went with my Dad to his cardiologist yesterday. He went through the lengthy list of problems he has and told him he's surprised he's still alive. Basically told him not to expect much in the way of recovery at his age after extended hospital stay. Not sure this is too helpful. Watched my Dad's eyes well up as he was secured in the medical transport van. Dunno...how about a different approach commending him on pulling through and encouraging him to strive for the moon? I guess some lean towards the ole glass half-empty approach. That mentality is why I camped out in the hospital for weeks like a medi-cop. But I digress..
(sigh)
Hey, I look forward to news on Rose's project! More warriors to the front line please;)

Believe51
05-05-2009, 12:03 PM
Rich, this battle is just full of so many circumstances so keep asking those questions and 'see the medi-cop, be the medi-cop'! Any intervention we can assist we should and in the start I did feel very demanding and paranoid, but within reason. Nudge if you feel you want to and never look back. Please DO overlook at times like this that we think we may have dropped the ball. Recently Ed had a hold up in a petscan we were waiting for an approval on that should have never happened. Luckily for us he had a bone scan and spent time gaining some weight in between researching. I know you are not beating yourself up about this but wanted to just mention it to you.

I will await the results of Mom's testing and know someway, somehow it will help in any decisions she may have to make. I am amazed by her sheer beauty and fight, and I must say I have sort of adopted her in a sense. So please know she is constantly coming into my mind. Continued prayers for Mom and Dad.

As for Dad, well I am sometimes disappointed in the way some descibe the situation to our loved ones and even the patient in the next bed. You are right in feeling that there are more gentle ways to address that list of his. I have found out that it is my job as Marie, to jump in and supply what I watch and feel is lacking in the hard truths. I am so sorry that he had to be kicked in the knees but I know you will try to help him past that. Dad too is an amazing fighter and I can see where you get it from with these special people, what a beautiful family you have.

I listen to you talk and wish I could empty that full plate of yours, I know you too are full. But this is the story of Love and as your friend I am so blessed to be able to hear your story and learn from it. Always in my thoughts and thanks again for keeping us posted on what is happening in this journey and for helping us on ours.>>Believe51

PS: Did you ever get the results of the ear wax sample you sent out?? Haha..You are one silly person.

Gotta go back and pray for Donna's Mom.

Rich66
05-06-2009, 04:53 PM
Progression in 2 spots in lung.....CA27=36.9 from previous 22

Believe51
05-06-2009, 09:43 PM
Rich, keeping an eye on Mom and sending her a hug. She has had a rough time lately and I am sorry for her and those whom love her. You seem to have things in order for her and this is the best we can do at times like this. One step ahead of things, poking, prodding, asking.....

Your research and devotion for Mom is something to be admired from any standpoint. Keep up the great work for her and Dad. Please let us know her information as it filters in and when you are not sleeping (smiling).

I am praying for Mom, Dad and you as you embark on yet another battle. Peace to you, Rich.>>Believe51

Rich66
05-09-2009, 02:48 PM
Going to see Onc Monday...any suggestions welcomed. I'm assuming he will view this as Herceptin failing and need for new chemo..possibly navelbine. Not sure if serum her2 will be in yet.

StephN
05-09-2009, 05:20 PM
I don't think it is Herceptin "failing."

How many treatments did she have!!?? Plus the demi-loading dose.

Maybe they can add a small dose of Navelbine to the Herceptin. Or Xeloda, which you know is a pill.

Dads don't deserve to be bound in a wheelchair, but that is also what happened to my Dad. He could not get off the ventilator. But he never lost his big smile.

Rich66
05-11-2009, 09:31 AM
Onc feels growth could have happened in the 2 weeks between end of Xeloda and start of Herceptin. She is, as I type, getting another 3 wk dose of H alone. Will be rescanned in 4 weeks. Mom said "It's going to be a long month." Indeed.
Still waiting on serum her2 results.
Discussed possibility of Tykerb/Herceptin combo...with possible insurance issues. I note some here have had H+T+Xeloda. I had passed along the bicarb raticles and he mentioned he had tried that in the past without benefit. I don't know what protocol etc. it's still a helluva idea...if it worked. He mentioned a novel protocol he is working on involving Tamoxifen..but not in an ER+ dependent manner. Going to talk more about that next visit.

StephN
05-11-2009, 09:43 AM
Hi Rich -
Sorry, I forgot she already had the xeloda.

Got that while you were arguing about HER2 level - seems Xeloda did her SOME good. Maybe a combination would be even better?

Indeed, a long month for you all. Just keep your spirits up best you can. Like I told my Dad, "turnabout is fair play!"

Rich66
05-11-2009, 09:55 AM
I agree about Xeloda. Determining incremental/partial benefit seems to be a difficult area. I thought it would have been more telling to continue Xeloda and add H in. He feels it is important to see what H can do alone. He has told mom to hang on to her remaining Xeloda pills..might come back to it at some later point.

Rich66
05-11-2009, 02:04 PM
update: Serum Her2 went from 14 to 8.5 So....maybe it's doing something.

Believe51
05-12-2009, 12:23 AM
Crossing all fingers and toes. Keeping mom in prayers for this to be her magic ammo.>>Believe51

Jackie07
05-12-2009, 01:55 AM
Hope she's feeling better today.

StephN
05-12-2009, 10:07 AM
So, Rich -
Your Mom's serum Her2 level is almost as low as mine!

Heep it up!

Shobha
05-12-2009, 11:23 AM
Great news on the Her2 low levels, Rich. My prayers continue for your mother and you.

shobha

Rich66
06-23-2009, 09:02 AM
A couple prominent IR spheres docs (Nutting, Salem) read mom's PET/CT and suggested focus should be put on controlling a highly active nodule in lung. PET showed activity in liver was less in scope and intensity than was feared. Not sure why the current onc didn't ask for PET before..gave critical information a CT can't. Maybe he was going strictly by liver function tests which have been pretty good for a few months. The IR who ordered the PET/CT wanted to go forward with spheres.The other IR docs suggested cyberknife for the lung nodule but the onc wants to try chemo first. A little nervous about not zapping the nodule as it is reaching limits of RF ablation and I am not sure what's too big for cyberknife.
Today, Mom is getting a chest CT followed by her2 serum test and labs, then Herceptin, then new addition: Navelbine. Navelbine will be weekly for a few cycles, maybe longer interval after that. Haven't received follow up appointments. Meanwhile, Dad's in a different hospital again with an infection.

Believe51
06-24-2009, 12:15 AM
Rich, continued prayers for all of you. Mom is one of my silent heros, trudging forward and fighting battles one cannot see. I keep her in my heart as she encounters and beats off the evils of this disease one big bump after another.

Dad too remains in my on and off again thoughts, blurred by the conscious and unconciousness of my days. I have had him there in my prayers some time now because he too fights his own battles.

I think of you all yet again this morning. I thank you for being such a terrific son. I pray for the plateau in your lives when things are more controlled. I pray that when this time comes your family shall celebrate with all the vigor those journeys have contained.

I am also still chuckling about my spelling error and once again thank you for making me laugh with that special and warped sense of humor only you have. Thanks for being a Warrior in your own right. You not only fight for Mom and Dad, you are right in our corner at the very same time.>>Believe51