~Rich66~Update on Mom If You have A Moment
 

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?

Rich,
Please check your private message and e-mail.
Donna

Having labs drawn tomorrow. Seems like possible jaundice. Anyone have this with liver mets?

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.

Hi -
Please post on the lab results and the possible jaundice when you have them.

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? !!!!!

Is this normal?

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

Rich
 

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.

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.

hot off the press(with comments)
 

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.

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?

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.

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.

there is a new test approved to recheck equivocal FISH results
 

(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. "

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..........

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.

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.

Any comments on typicalside effects..especially day of first cycle?We are supposed to travel afterwards to Chicago (2.5 hr drive)

update
 

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?

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.

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.

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.

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.

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?

In an ER now (Sunday 7:30pm). Mom hasn't slept for 2 nights due to pain in legs, abdomen, ribs back.

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.

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?

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

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.

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??

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.

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.

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.

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.

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.

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.

rich- it's so nice to see you taking so much responsibilty for your mom. we're here for you! hugs and prayers, juanita

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.