Update on Barb
 

There sure seems to be an overabundance of bad news on here recently. I hate to add to it but Barbs doctor was a little discouraged today when we went in for her third TDM-1 treatment. As you may know Barbs has been struggling with what they diagnosed as Pneumonia since the 20th of Sept. After several rounds of antibiotics it appears to have settled down somewhat, at least there is no fever. As I said we went in for treatment today and her blood work looks fine so they sent her back to see the doctor. I could just tell he was discouraged at what he sees he was really hoping for retreat of the skin mets. He had outlined with a sharpie where it was and it hasnt crossed the line but it hasnt moved away either. When he listened to her lungs he felt there was still fluid and suspects there is cancer in her left lung. He said he doesnt want to give up on the TDM-1 after only two treatments and sent her back for her third. His plan at this point is scans on the 26th and if there is no further progress discontinue the TDM-1 and go with Haloven without Herceptin because my insurance wont pay for both. The discouraging thing for us is not only what appears to be ineffective TDM-1 but also his comment was theres not a whole lot of options from here. Dont get me wrong Im not trashing him I have always felt he really cares for Barb and wants to see her better. Hopefully this third round of TDM-1 will do the trick. There is a verse in Mark 9:24 that is quickly becoming a favorite of mine I have altered slightly to better fit my heart. And straightway the husband of the wife cried out, and said with tears, Lord, I believe; help thou mine unbelief

Re: Update on Barb
 

Hi Mike ! I hope TDM-1 will do the trick !!! Is skin mets the only thing that Barb is dealing with right now? When did she have skin mets initially? Was surgery to remove the skin mets and radiation to affected skin an option? I also have skin mets and have been on tykerb and xeloda for 6 months. Mine are localized and stable and my oncologist recommended surgery to remove it. I am holding back on surgery as i want an oncology surgeon once my insurance changes to PPO next January. He said skin mets may not be life threatening but it affects the quality of my life. and that skin mets are hard to treat when it comes back. So i guess the positive side is that it is not life threatening. Some ladies here posted about using a tropical cream for melanoma to treat skin mets from breast cancer. I forgot what the name is. You can check with Barb's doctor this might work or at least improve the syptoms?

Re: Update on Barb
 

The last few days have been discouraging. My self I had an Ultrasound and a Catscan on Monday. seems i have a fluid build up and my belly looks like a basketball. It the cancer in liver that is giving me heck. So now its a waiting game to see what the results are and what my options are, Be well my friends, Jeanette

Re: Update on Barb
 

Barb has had from day one a large mass in her left breast. Her doctor felt that mast. would not help because it had already spread to her spine. In fact he felt he could monitor things better if we left it. She initially had radiation on the spot on her spine but has never had it anywhere else. The skin mets didnt appear till after she started the Taxol back in April of 2010 then reappeared this January.

Re: Update on Barb
 

I hope and pray the 3rd TDM-1 treatment works to provide improvement! Sending hugs and healing thoughts Barb's way, and to you too Mike. Keep us posted.

Re: Update on Barb
 

Hi Mike! It is a good thing that the skin mets didn't grow bigger or expand- It means the drug is working otherwise it would have continued to spread ! TDM-1 may not be as efficient to treat skin mets as to treat organ mets but i definitely hope it would get Barb's skin mets in control. Although surgery is not commonly practiced for stage Vs, but as you have seen from our profiles here that primary tumor does not always respond the same way as mets to other parts of the body. It would be worth to get a second opinion.

Re: Update on Barb
 

Hi, Mike
I felt your anguish right through your post. I have a feeling things ARE going to get better.
T-DM1 seems to "work" a little different, a little slower than standard chemos. While I enjoyed huge drops in my CEA numbers on Taxol et al (signature), they decreased much more slowly on T-DM1. I was certain it wasn't working at first. Give it some time.
Looking at Barb's signature, it would appear to me there are plenty of options left should this not be the ticket.
With care,
Karen

Re: Update on Barb
 

Does anyone out there have any experience I can share with Barb regarding very nasty skin mets. Ive looked into the Washington State University Trial and were waiting to see where that gets us. The only down side is its clear across the country. PAULA I so appreciate your thread on fun free stuff theres a new entry that may help us fly there if it comes to that. They sound like Barbs mets may be to severe for the trial they are asking for pictures. Also is there any experience with fluid in and around the lung were looking into draining it she has a hard time getting comfortable when she sleeps.

Re: Update on Barb
 

Mike , I don't know anything about skin mets, but I have mets to the liver and I look 9 months pregnant. Had a Cat Scan and am still stable, but fluid in the lung and belly. I am waiting for my Onc to call as he is setting it up so I can have it drained. he also said it can be done more than once. I also have a wedge pillow to sleep on as it helps ease the breathing. Jeanette

Re: Update on Barb
 

Just got the call from Barbs doctor they did an X-ray yesterday and compared to the emergency room X-ray of the 20th and the fluid is much worse. So much so that they scheduled a Thoracentesis to remove the fluid tomorrow morning at 10:00 AM. Hopefully this goes well and makes her more comfortable.

Re: Update on Barb
 

Mike...I just wanted to say how sorry I am you and Barb are walking the tough road. I ask God to reach down and surround you both with His love and Peace.

Mary Jo

Re: Update on Barb
 

Mike,

Mary L has had skin mets. She'd been NED for three years when she last posted in 2010. Below is her posting in the 'Calling all stage IV sisters' thread:

Hi, My name is Mary L and I reached my 8 year cancerversarry Oct 17. I am a survivor of IBC stage IIIb. I was originally given a 28% chance of surviving 2 years and I am still here because of Herceptin and a wonderful onc. I was on Herceptin for over 4 years. I truly believe that you have to really want to survive and think positively during and after your treatment. I am so happy to be alive and watch my grandchildren grow up.

Just recently I was diag. with osteoporis and I will start taking Fosomax on Monday. I was diag. with some compression fractures and have been having back pain but this is just a bump in the road and I will be fine I wish all of you the very best. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.

Re: Update on Barb
 

Mike - I'm sorry that Barb is having such a rough time. I hope the thoracentesis helps make Barb more comfortable. I imagine they will biopsy the fluid and then you will know if it is cancerous or not - it may not be.
The skin meta not spreading more is a good thing.
My tdm1 trial onc said yesterday that so far his best responders are the slow steady ones when it comes tithe drug. He has had a number start stable and then slowly have regression some for over 12 months.
I hope that the fluid etc... Is non cancer related and that TDM1 starts to weave a little more magic for Barb.
Sending love for the procedure and positive results.

Re: Update on Barb
 

Don't know how this has developed since but this is an old post of mine:
01-23-2008, 09:27 AM #1
Lani
Senior Member

Join Date: Mar 2006
Posts: 4,070
for Lolly and others who have had skin mets--photodynamic therapy with new platinum
compound

Light powered platinum more targeted & 80 times more powerful than similar cancer treatments [University of Warwick]
Researchers from the Universities of Warwick, Edinburgh, Dundee and the Czech Republic's Institute of Biophysics have discovered a new light-activated platinum-based compound that is up to 80 times more powerful than other platinum-based anti-cancer drugs and which can use "light activation" to kill cancer cells in much more targeted way than similar treatments.
The platinum-based compound known as "trans, trans, trans- [Pt(N3)2(OH)2(NH3)(py)]", or a light activated PtIV complex, is highly stable and non-toxic if left in the dark but if light falls upon it becomes much less stable and highly toxic to cancer cells. In fact it is between 13 and 80 times more toxic (depending on how and on which cells it is used) to cancer cells than the current platinum based anti-cancer drug Cisplatin. Moreover it kills the cells by a different mechanism of action, so it can also kill cisplatin-resistant cells.
Professor Peter Sadler, Chairman of the Chemistry Department of the University of Warwick, who led the research project said:
"Light activation provides its massive toxic power and also allows treatment to be targeted much more accurately against cancer cells."
The compound could be used in particular to treat surface cancers. Patients could be treated in a darkened environment with light directed specifically at cancer cells containing the compound activating the compound's toxicity and killing those cells. Normal cells exposed to the compound would be protected by keeping the patient in darkness until the compound has passed through and out of the patient.
The new light activated PtIV complex is also more efficient in its toxic action on cancer cells in that, unlike other compounds currently used in photodynamic therapy, it does not require the presence of significant amounts of oxygen within a cancer cell to become toxic. Cancer cells tend to have less oxygen present than normal cells.
Although this work is in its early stages, the researches are hopeful that, in a few years time, the new platinum compound could be used in a new type of photoactivated chemotherapy for cancer.


ABSTRACT: A potent cytotoxic photoactivated platinum complex [Proceedings of the National Academy of Sciencese]
We show by x-ray crystallography that the complex trans, trans, trans-[Pt(N3)2(OH)2(NH3)(py)] (1) contains an octahedral PtIV center with almost linear azido ligands. Complex 1 is remarkably stable in the dark, even in the presence of cellular reducing agents such as glutathione, but readily undergoes photoinduced ligand substitution and photoreduction reactions. When 1 is photoactivated in cells, it is highly toxic: 13-80 x more cytotoxic than the PtII anticancer drug cisplatin, and ca. 15 x more cytotoxic toward cisplatin-resistant human ovarian cancer cells. Cisplatin targets DNA, and DNA platination levels induced in HaCaT skin cells by 1 were similar to those of cisplatin. However, cisplatin forms mainly intrastrand cis diguanine cross-links on DNA between neighboring nucleotides, whereas photoactivated complex 1 rapidly forms unusual trans azido/guanine, and then trans diguanine PtII adducts, which are probably mainly intrastrand cross-links between two guanines separated by a third base. DNA interstrand and DNA-protein cross-links were also detected. Importantly, DNA repair synthesis on plasmid DNA platinated by photoactivated 1 was markedly lower than for cisplatin or its isomer transplatin (an inactive complex). Single-cell electrophoresis experiments also demonstrated that the DNA damage is different from that induced by cisplatin or transplatin. Cell death is not solely dependent on activation of the caspase 3 pathway, and, in contrast to cisplatin, p53 protein did not accumulate in cells after photosensitization of 1. The trans diazido PtIV complex 1 therefore has remarkable properties and is a candidate for use in photoactivated cancer chemotherapy.

01-23-2008, 10:19 PM #2
Lolly
Senior Member

Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Thanks Lani for this new info. I checked into Photodynamic Therapy when these skin mets started acting up again, but so far it's only been given when a patient has been off chemo for a month. I'm hoping to keep it as an option, as there's a clinic here in Oregon which so far is only using it in other cancers but have indicated they may be expanding it's use to BC. Maybe they can trial this new compound!

<3 Lolly

Re: Update on Barb
 

As I understand it, the following is FDA approved(although maybe only for skin cancers) and readily available (but I think expensive). Don't know if this is helpful ie, trial IF already accruing might be in NY, but perhaps your wife would be one of the 20% and with any luck perhaps it works better in those who are her2 + (who knows, but it is only a topical and unlikely to be associated with significant side effects)
Worth asking?




Clin Cancer Res. 2012 Jul 5. [Epub ahead of print]
Topical TLR7 agonist imiquimod can induce immune-mediated rejection of skin metastases in patients with breast cancer.
Adams S, Kozhaya L, Martiniuk F, Meng TC, Chiriboga L, Liebes L, Hochman T, Shuman N, Axelrod D, Speyer JL, Novik Y, Tiersten A, Goldberg JD, Formenti SC, Bhardwaj N, Unutmaz D, Demaria S.
Source
Medicine, NYU School of Medicine.
Abstract
PURPOSE: Skin metastases of breast cancer remain a therapeutic challenge. Toll-like receptor 7 agonist imiquimod is an immune response modifier and can induce immune-mediated rejection of primary skin malignancies when topically applied. Here we tested the hypothesis that topical imiquimod stimulates local anti-tumor immunity and induces the regression of breast cancer skin metastases.EXPERIMENTAL DESIGN: A prospective clinical trial was designed to evaluate the local tumor response rate of breast cancer skin metastases treated with topical imiquimod, applied 5 days/week for 8 weeks. Safety and immunological correlates were secondary objectives.RESULTS: Ten patients were enrolled and completed the study. Imiquimod treatment was well tolerated, with only grade 1-2 transient local and systemic side effects consistent with imiquimod's immunomodulatory effects. Two patients achieved a partial response (20%; 95% CI 3% - 56%). Responders showed histological tumor regression with evidence of an immune-mediated response, demonstrated by changes in the tumor lymphocytic infiltrate and locally produced cytokines. CONCLUSIONS: Topical imiquimod is a beneficial treatment modality for breast cancer metastatic to skin/chest wall and is well tolerated. Importantly, imiquimod can promote a pro-immunogenic tumor microenvironment in breast cancer. Preclinical data generated by our group suggest even superior results with a combination of imiquimod and ionizing radiation and we are currently testing in patients whether the combination can further improve anti-tumor immune and clinical responses.
PMID: 22767669

Re: Update on Barb
 

Hey Mike,

I'm so sorry that you all are having to deal with this.

Not an expert on any of this, but I know that Sheila had a good initial response to Halaven for skin mets. We actually saw them shrinking while we were in San Antonio last two years ago. Perhaps someone else has more info on Halaven.

Keeping you in my prayers.

Re: Update on Barb
 

Mike and Barb I'm so sorry you are going through a tough time. Gods blessings to you. Please know that you are in my prayers

Re: Update on Barb
 

Barb had 1/2 litre of fluid removed successfully this morning. She is much more comfortable breathing now. Thank you all for the prayers and kind words the certainly helped. Now if we could just get this TDM-1 weve been fighting for, to kick some cancer A-- we would be praising Jesus. Not that we arent already, He deserves all the glory.

Re: Update on Barb
 

Thanking God she is more comfortable, Mike.

Re: Update on Barb
 

You know we are praying for you hard. That verse in Mark is one of my favorites in the dark times . we have been there. so glad Gen. and the Va. exp. access clinic gave us extra time when L. had sepsis. which was un-related to T DM-1. infection from kidney stent put in prior to t dm-1.
As i said in my PM to you , your wifes pneumonia could be slowing down response to T dm-1. just a laymans opinion. did you say your doc had decided not to aggressively tx a lung tumor ? understand his reasoning, but that tumor could affect ability to heal from pneumonia. could slow down healing .
has your doc asked Gen. docs if they have ever seen t dm-1's effect on skin mets ? how long , etc.
3 doses is not much , give it time...and much prayer . God Bless

Re: Update on Barb
 

Were not sure where to go from here the removal of fluid has made Barb more comfortable but she has started to run a slight fever again today. She had her third TDM=1 treatment Tuesday and we have a CT scan scheduled for the 26th. Its my understanding that cat scans arent recommended soon after a chemo treatment. So Im not sure what to do, is the fever a TDM-1 side effect, a pneumonia after effect, or more likely a sign of infection somewhere.Her skin mets are very ugly at this point, actually open sores. Could this cause the fever or if there are mets to the liver would that cause a fever. Shes never had a sign of activity in the liver before. I plan to get her in to see the doctor first thing tomorrow AM.

Re: Update on Barb
 

Mike,

So sorry for all your troubles, and Barb's. I'm glad she's breathing more comfortably. I'd echo the thinking that skin mets that aren't spreading seem like a good sign.

I pray for healing, wholeness, joy and light for you and Barb.

Re: Update on Barb
 

fever is normal reaction to t dm-1, w/in 2-5 days after tx. after several txs, sometimes more , fever may go away, as body adjusts to the drug. we had to go to ER ( access rules ) if temp went over 100.5 Most often turned out to be usual t dm-1 reaction. one time fever went high 103 , stayed high, we didnt want to go to er on wkend, turned out to be sepsis, which is very serious. so now we tell everyone dont wait , follow the rules.
Or could be pneumonia coming back , can be hard to kick when overall strength is down. in my laymans opinion, going to your doc tom. is a must.
fever is not necessarily indication of liver mets , or any mets for that matter . the scans on the 26th will tell . they will be compared to last scans before t dm-1 . has your doc worked w/ t dm-1 before ? most t dm-1 docs would give it at least 3 doses and ct's before thinking about switching tx's. Hang in !

Re: Update on Barb
 

What about tumor markers ( blood tests ) ? were they done before tdm-1 started ? done since ? they could give indication if t dm-1 is working internally, while waiting for ct pictures.

Re: Update on Barb
 

Phil

Yes blood work was done before treatment but there wasnt a scan done immediately before, there comparing to one done in May. Her Onco has felt that in her case scans arent needed as often. She hasnt had any surgery because he felt you remove to prevent spread. And she had already spread to her spine at diagnoses. He felt we could see the effectiveness of whichever treatment she was on by looking at her breasts. Scans were done before each change in treatment prior to TDM=1

Re: Update on Barb
 

Surgery is more and more ' old school " in tx. L. had just a lumpectomy. we chafe against the rules in trials , and they often are not flexible enough, but there is benefit to rules. When admitted to exp access L. had ct's done. just before first dose. then ct's were done by rule after dose 3. and every 3 months after, for over a year . this yr ( second yr anniv. of t dm-1 is coming end of Nov. ) we scaled back to every 4 months.
tumor markers done just before first dose, then again, I believe after first dose , or second, before ct's.
you are fighting a complicated battle, w/ pneumonia, skin mets, praying for t dm-1's effectiveness, it does take awhile. praying for good results on 10/26 !

Re: Update on Barb
 

Hi Mike ! I found an old post on skin mets. Hopefully the scan will show good results ! ( My skin mets never showed up on the PET scan. )
http://her2support.org/vbulletin/showthread.php?t=46094

Re: Update on Barb
 

Just returned from Barbs Dr. hes taking her off TDM-1 and starting Haloven next Tuesday. She has progressed considerably while on TDM-1 theres a mass at the base of her neck that has done nothing but grow so bye bye TDM-1. She also started radiation today on the skin mets and the mass on her neck. Her neck has really been bothering her so I pray Haloven does the trick. I wish I understood why we have to go through what weve been through.We fought long and hard for the TDM-1 twice now, once to be randomized to Tykerd on Emelia and now we get compassionate access and it does nothing. I think her doctor is as upset about this as we are he really seems to care for Barb and that makes us feel like we are where God would have us to be. Hes sure not wasting any time we were scheduled for Cat scans on the 26th and treatmant on the 30th. He feels like theres no point in a scan when you can obviously see progression and he marched us straight across the hall to the radiation dept and told them to work her in today for treatment. Just wanted to let you all know where were at in this crazy journey.

Re: Update on Barb
 

Praying hard for Barb, Mike. This radiation/Haloven combo is the winner. I look forward to reading your posts about her improvements.

You are both warriors and I am lifting you both up in prayer daily.

Maureen

Re: Update on Barb
 

I am so so sad to hear this update. You fought so hard to get T-DM1 and it is so difficult for me to understand why it didn't work. Barb has not received much chemo in her journey compared to so many others so it can't be that. Just as an FYI, my recurrences have both been in the neck nodes and a mass in the right supraclavical area. If I didn't get T-DM1 (which he recommended as first choice), Dr Slamon recommended TCH for me. I didn't want TCH because it is harsh but it may end up that way if T-DM1 doesn't work for me either. I will have to decide if I will do that given my weakened state of health.

I pray halogen works for Barb. You two deserve a break.

Re: Update on Barb
 

Mike,

I'm sorry for these setbacks. It's very disappointing. We all have such high hopes for TDM-1.

It's wonderful that Barb's oncologist is so proactive. I pray that the radiation and drug combination will get her cancer under control.

Re: Update on Barb
 

Mike
I am sorry to hear of this let down. Perhaps your new path will be the right one for Barb. It's awesome how you are such a champ for her. There are many other options, don't feel discouraged. I will keep you in my best thoughts.
Karen

Re: Update on Barb
 

I'm sorry to hear about Barb's progression with TDM-1. I've been following your updates with hope and this is disappointing for me too:(

I was wondering if you've explored Perjeta/Herceptin and Taxol combo. There's this thread on BCO where the ladies have had good results with this. Hopefully this will reverse the Herceptin resistance. Not sure if I'm breaking any rules by posting the thread here, but I'll just post it for your ease of reference.

http://community.breastcancer.org/forum/8/topic/790575

Of course, I've my fingers crossed that Halaven does a good job and you won't have to explore the Perjeta combo..

Re: Update on Barb
 

Barb was in so much pain yesterday that they werent able to effectively map out the entire radiation treatment area. We left their office around 2:00 right after the CT Scan and we were told to return around 4:30 to begin the process of maping and radiation. When we returned as instucted they werent done with the calculations so we waited a while maybe 1/2 hour. When they put her on the table and started positoning her she wasnt able to comfortably cooperate. They tried several times but gave up at 5:45 and suggested retuning at 12;; today but this time make sure she was heavily medicated, her onco prescribed some pain pills yesterday. I find it amazing how God works when I awoke this morning its as if he spoke to me in a dream and said why are you putting her through so much pain trying to treat everything at once. Concentrate on the mass in her shoulder and we will worry about the mets down the road. So I called the doctors office and suggested just that. When we met the doctor at 12:00 he came into the room and told my wife that he thought that my idea was a good one so they set it up to map and treat the one area and she did well enough to accomplish that. Hopefully now the treatments will reduce the pressure and allow future treatments of the mets.

Re: Update on Barb
 

You are a wise man. My current reoccurrence was finally detected on Pet when I started to have tingling in my fingers which proceeded with severe pain up my right arm and then my rt shoulder and back. I lived in bed.On an ice pack and pain meds for weeks before the scan revealed a 3 cm tumor in my rt supraclavical which was pressing on the branchial plexus. I couldn't eat and lost a lot of weight. i got a new appreciation for the pain so
many patients try to live with. I begged for radiation to start ASAP. I had 19 rads. The pain discomfort I have now is only in my rt hand. They tell me it will take a long time for these small nerves to regenerate and they may never regenerate. After radiation they made me wait at least 6 wks for chemo which was fine because I was busy trying to get T-DM1. Barb has to get the pain under control to fight onward with chemo.

Re: Update on Barb
 

Her Onco has a Haloven treatment scheduled for Tuesday the 23rd provided ins approves. Is it a bad idea to do this so soon after and during radiation . She will have radiation treatments Monday thru Friday for the next couple weeks at least. Originally we were told Rads for 5 weeks but that was when they were planning on doing the mets and the neck. Our only experience with radiation was back in Aug of 2010 when they zapped the met to her spine when she was diagnosed. Her Onco started chemo the next week so I have no doubt hes aggressive which I guess is a good thing.

Re: Update on Barb
 

Got home late from the hospital last night and saw your post, going after that neck area makes sense. Radiation definitely works on certain areas , often never comes back in those areas. Halaven works well for many, and is a recent drug., appr. only in 2010. We are Praying Hard for you and Barb, Praying for good results from these aggressive tx's. T DM-1 should be available , if needed , as an extra kick, by next Feb. or sooner . Merciful God , Healing God, Be With Mike , Barb, and Family. Psalm 57 : 1 , " Have Mercy on Me O God...I will take Refuge In The Shadow Of Your Wings until the disaster has Passed ". And Lorraine always adds " No Peeking ! "

Re: Update on Barb
 

Hoping and praying the txs control Barb's pain. Please know that your family is in my prayers. peace

Re: Update on Barb
 

Praying for and thinking of you guys.

Paula

Re: Update on Barb
 

Mike,
Stay strong. I believe you are always exactly where God wants you...if you're there because you love, and trust. I think you and Barb have those two things covered!!

Prayers and good wishes going out to you both...I'll be taking you with me, in my heart, to church this morning.
Denise