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lucywang.ca 07-22-2015 02:49 PM

Don't want to give up TDM-1
 
My name is Lucy, I am a 49 year old east asian female who has advanced metastasized breast cancer. I am in a very sticky situation and would like to get some ideas, support, and possible referrals from all of you. Long story short, my oncologist have informed me that there are no more chemo drugs available for treatment.

In 2014-12, a large tumour began to form under my left auxilia causing severe pain and swelling in my left arm. Also a rash began to form on the rt breast. My oncologist administered TDM-1, but only for 2 rounds. As a result, the pain and swelling went away, and the rash on my skin disappeared. Unfortunately my platelet levels dropped, my doctor told me to wait for the levels to pick back up.

So I waited. I waited 5 months. And then the cancer migrated to my brain.

I received radiation to the brain, and grew drastically more ill and weak within a short span of time. 2 months went by and now I feel much better, but i am now being rejected of treatment of TDM-1. Now I have the same symptoms as before, only more severe. Thinking back to the amazing great results of the 2 rounds of TDM1, I would like to go back to TDM-1 and give it a try to save my life.

Now moving forward, I am unsure of my next steps. I would love and greatly appreciate your input and support. I will be seeking second opinions from other oncologists, asking: Are there any other chemo treatments available? Are there any clinical trials?

And my questions to all of you is:
Do you have a similar story like mine?
Have any of you had this experience with TDM-1? Where you came back to the drug?
Have you participated in any clinical trials for vaccines? any openings you know of?

-----------------------

Below is a summary of my cancer history

2002 -4 ,left lumpectomy.ER-,PR-.her2-, IDC 0.8cm adriamycin/cyclophosphamide x6. radiation
2009 -11, mammogramph. left mastectomy 1.9cm. er-,pr-,her2 weakly+. tamocxifen 10 mths.
2011 -1, left lymph nodes multiple + <1c, ER-, PR-, her2+, vinorelbine/heceptin, 1/3 week x 10
2012 10 ~ 11, left neck radiation
2012 -11, right neck and left axillar lymph nodes multiple + < 1 cm, vinorelbine/heceptin, no effect
2013 -9, taxotere/heceptin. left ? pleura fluid, stopped T/H
2013-12 ~ 2014 -1, Xeloda/Tykerb x 4, no effect
2014 -1, progress to thyroid left lobe/isthmus, left axillar, right neck lymph nodes +,thyroidectectomy
2014 -1, superior vena cava syndrome, short of breath, chest radiation, continue w/Erybulin x 6. Face swelling difficulty breathing wet away.
2014-12, Left arm start swelling ,painful, right breast rash, TDM-1 x 2, symptom gone right away, due to low platelet, stop TDM-1
2015 -3 , cerebellum spread, brain rediation
2015 -7, (now) test electrolytes, liver/kidney function,wbc normal. Chest skin rash, left arm lymp hedema, cancer is progressing

Juls 07-22-2015 03:09 PM

Re: Don't want to give up TDM-1
 
Hi Lucy
Just read your post. I am on a trial in Scotland of Herceptin and Perjeta. It is the Perjeta that is the trial drug. Not sure if this is of any help but thought I should mention it.

Debbie L. 07-23-2015 11:53 AM

Re: Don't want to give up TDM-1
 
Lucy, I don't know the answers to your questions, nor do I have any experience with TDM-1. But I didn't want your post to go unanswered.

Where are you? Are you able to get a 2nd opinion consult from another provider?

Like you, I don't understand why your oncologist would not consider more TDM-1. Low platelets are a common side effect of TDM-1, and from what I've read and heard, it's almost always a transient thing and resolves on its own. Do you know if your platelets have returned to normal? I think some have had doses held (or reduced) while platelets recovered -- but unless other things are going on (elevated liver enzymes, for example), I don't think this side effect usually means stopping altogether, for those who are responding.

Can you let us know more about your situation and access to care? If you don't have the option to get a 2nd opinion, we could at least round up some evidence about how to manage low platelets, while continuing treatment.

Debbie Laxague

KDR 07-23-2015 02:26 PM

Re: Don't want to give up TDM-1
 
I think your first best move is to find a new oncologist. "There are no more chemo drugs available for treatment" is downright incorrect and unfair to tell a patient.
I was on TDM-1 for 18 months. It has brought certain patients to NED status--permanently. After conferring with your new oncologist, with whom you should discuss trials available to you, including vaccine therapy, specifically dendritic cell, you will be less stressed and able to see the light at the end of the tunnel.
Letting us know where you are helps as we can navigate locations for you.
You must help yourself as much as possible right now.
Wishing you all the best.
Karen

lucywang.ca 07-23-2015 06:36 PM

Re: Don't want to give up TDM-1
 
Juls, Debbie, and Karen. Thank you so much for your replies and the information you have provided, I was so afraid that my post may have gone unanswered. Your replies are very comforting to me at my time of need.

To answer your questions,
- I am in Toronto, Ontario
- My blood tests indicated everything is normal (liver, kidney, WBC, electrolytes, platelets)

According to my current oncologist:
“In Ontario, the medical coverage insurance plan indicates that once a drug has been deemed ineffective (while on the drug, cancer progressed) the patient can no longer be administered the drug.” BUT, the cancer spread to my brain during the time I was *waiting* for platelet levels to pick back up in these past 7 months, not while I was on the drug.

I will be heading to my family doctor to seek for a second opinion, hoping that other doctors will help me get TDM1, through petitioning this “law”

Do any of you know whether Canadians can participate in clinical trials in the United States? What are the cost associated with that?

lkc Gumby 07-24-2015 08:38 AM

Re: Don't want to give up TDM-1
 
Hi lucy,

i have worked with US oncology clinical trials, and yes you can participate in these trials being outside the country The key question, or concern will be if you are able to attend all the required visits and procedures involved. many oncology trials pay for all, but that is something that is negotiated with the pharma sponsor and the oncologist which is the medical investigator.
you can look up available trials on clinical trials.gov
put in her2 positive metastatic breast cancer and the trials will pull up. you can then look at the inclusion and exclusion criteria to see if you match.
another option is checking with a local large teaching hospital that has a robust oncology trial center. they will do alot of the legwork for you.
tdm-1 with herceptin should be an option for you or perjeta as well.
i hope this helps and you receive the assistance you need.

caya 07-24-2015 12:41 PM

Re: Don't want to give up TDM-1
 
Lucy, what hospital are you being treated at in Toronto?
Princess Margaret? Mount Sinai? Sunnybrook?
There are many excellent oncologists in Toronto - who is treating you?

all the best
caya

lucywang.ca 07-24-2015 01:17 PM

Re: Don't want to give up TDM-1
 
Hi Caya,

I am being treated in Humber Rever Hospital Church site.

Dr . Sam Berger is the oncologist.

I have contacted my GP for second opinion to PMH, Sunnybrook. Do you have any ocologist you prefer and let me know before Monday if you can? My GP will get me back by Monday.

All the bast,

Lucy

caya 07-24-2015 02:11 PM

Re: Don't want to give up TDM-1
 
Lucy, my oncologist was Dr. Martin Blackstein at Mount Sinai, but he has since retired from BC patients. I saw his replacement, Dr. Amir, just a couple of times, as I was at the end of treatment. I did like him, he is young and if Dr. Blackstein approved of him as a replacement, that said a lot to me. He discharged me after I finished Femara in 2012, and I am now being followed at Women's College Hospital in the After Cancer Care Clinic. There could be a great breast cancer onc. at Women's College too. Humber is a regional hospital, I would try to get into PMH if possible, as they do many clinical trials there.

I've heard great things about Dr. Ellen Warner at Sunnybrook. There are some wonderful breast cancer onc. at PMH, but I don't have a name for you. Whoever you go to, make sure they are a breast cancer specialist oncologist, not just a general oncologist. PMH is cutting edge, and Mount Sinai is literally linked to PMH, so the docs often confer on cases. I had my mast. at PMH, treatment at Mount Sinai. PMH is one of the top 5 cancer hospitals in the world.

The only name I know at PMH is Dr. Tak Mak, he's a brilliant doctor, I went to a seminar about her2 BC with Dr. Dennis Slamon and Dr. Tak Mak a few years ago at PMH. Not sure if he actually treats BC patients, or if he is more of a research dr., but your GP could call and ask. If he does not take treat patients directly, perhaps his office could direct you to a BC onc. at PMH.

Please keep us informed.

all the best
caya

michka 07-25-2015 12:58 AM

Re: Don't want to give up TDM-1
 
Hi Lucy. I understand you don't want to give up TDM1 since it seemed to be working for you the time you were able to take it. It is when you stopped because of the platelets that you progressed. TDM1 is not for the brain so it is not an argument to have you stop TDM1. Low level of platelets happened to several women here on TDM1 and they just skipped one or two infusions and when the platelets were better, went back to TDM1.
When I read your post, my conclusion is that the drug should NOT been "deemed ineffective" but "effective".
Get a second opinion!

karina14 07-25-2015 11:02 AM

Re: Don't want to give up TDM-1
 
Lucy,

At PMH you can ask for Dr. Warr (very knowledgeable) or Dr. Beddard (he is involved with trials at PMH), both breast cancer oncologists. You should be able to get TDM1, just make your story straight to the oncologist. And TDM1 is also thought to cross a damaged bbb (after wbrt radiation is thought that the bbb is not intact any more) (bbb = brain blood barrier, there are studies that talk about TDM1 and brain). I don't know what is going on at Mt. Sinai, Sunnybrook or Women's College Hospitals, but make sure you move away from Humber.

lucywang.ca 07-25-2015 12:44 PM

Re: Don't want to give up TDM-1
 
Hello everyone, thank you for your support, suggestions, and recommendations. I will speak to my family doctor this Monday regarding all that information you have provided me with, and will keep you all updated on the outcomes.

More suggestions are always welcome, thank you very much ladies.

ConcernedStu 07-25-2015 11:30 PM

Re: Don't want to give up TDM-1
 
Hi Lucy, first step is getting away from Humber, it is (in my opinion) horrible. I sent you a private message (you can open it by clicking private messages on the top right corner when you are signed in)

lucywang.ca 07-31-2015 07:44 AM

Re: Don't want to give up TDM-1
 
Hello Everyone,

The update for the end of this week is that I've spoken to my family doctor and got a recommendation to Sunnybrook hospital. However, I will not be able to see the chemotherapy oncologist until September 15th (I tried to move the appointment up, and could not. And all other oncologists are all booked up as well). I am very afraid I will not be able to live to that date to see him.

So an alternate route I've decided to take is to try to ask my current oncologist to refer me to Provis, a private infusion clinic in Toronto where I hope to get TDM1. I'm currently searching for funding/grants options since a month of TDM1 is ~$10k. Does anyone have any suggestions or experience in looking for drug funding in Ontario?

Any help would be much appreciated.

karina14 07-31-2015 08:00 AM

Re: Don't want to give up TDM-1
 
Lucy, if you or your spouse have medical insurance through your company, they will probably cover part of the cost or all. As well as treatment to a private clinic, but make sure you call the insurance first to check, mainly because the same treatment is covered by OHIP and they would be wondering why not going to a regular hospital.

If I would be you I would ask for referrals at PMH or Women's College, maybe one of them comes before the one at Sunnybrook.

schoonder 07-31-2015 09:58 AM

Re: Don't want to give up TDM-1
 
Since you had to stop an effective treatment with t-dm1 because of a well-known, but manageable side effect, low platelet count, which now has been corrected, I would contact Genentech, producer of agent and explain the criticality of your current situation and see if they could provide you with any assistance to get you back on this therapy in short order. They can be reached at:
KADCYLA Patient Support Line
1 (855) KADCYLA (523-2952)

Gee557 08-02-2015 06:24 AM

Re: Don't want to give up TDM-1
 
Hi, I finished 17 rounds of TDM1 as part of an early stage breast cancer trial at Dana Farber. I recommend you call Dr. Burstein at Dana Farber Hospital in Boston, MA.

lucywang.ca 08-02-2015 09:34 AM

Re: Don't want to give up TDM-1
 
Hi sisters,
I finally got an appointment for T-DM1 treatment still from Humber this coming Wed. (It was approve recently for me again!) My second opinion appointment to see a breast oncologist at Sunnybrook Hospital has been scheduled for mid September, even after I called countless people at the hospital to tell them my case was urgent.

I have developed many skin rash/blister during this waiting time, many have cracked open in the past week and they continue to get worse everyday. I can not handle the pain from the swollen and bleeding skin sores. I am using a hydromorphone pain pump to manage the pain. Currently, my left arm/hand are swollen, right hand also started to swell. Countless skin sores are running down the sides of my torso and slowly migrating to my back.

With that being said, I still have hope and will continue pushing for treatment! Has anyone have experience with swelling and blisters that were mitigated with T-DM1?

Thank you for all your responses, they give me strength to keep fighting everyday.

Lani 08-02-2015 12:40 PM

Re: Don't want to give up TDM-1
 
perhaps you can get into a dermatologist faster than the oncologist

below you will find two pertinent articles--the dermatologist might feel comfortable giving you topical imiquimod after a biopsy (second abstract below), but , if the ARE bc skin metastases, effectiveness is substantially improved by adding abraxane (first article below)--perhaps the dermatologist could contact the oncologist explaining why you need to be seen sooner.

PLEASE BE ASSERTIVE IN YOUR efforts TO moveup YOUR APPOINTMENT--These open sores could get infected and then they dare not give you the abraxane as it could substantially decrease your ability to fight infection by making you neutropenic (HAVING TOO FEW WHITE BLOOD CELLS TO FIGHT INFECTION), a well-known side effect of many traditional chemo drugs.

well-known signs of infection include red streaking going up you arms or trunk, having a temperature, high pulse, low blood pressure.

NO reason TDM1 should not help with the skin mets,too as far as I can tell(info from attending asco, aacr, asco breast etc, reading the literature)--that does not mean it is guaranteed that it will, just that there is no reason skin mets particularly should be exempt from its beneficial effects

Hope this helps!


Imiquimod/Abraxane Combo Effective for Skin Mets
By: BRUCE JANCIN, Oncology Practice Digital Network |
DECEMBER 28, 2011


San Antonio Breast Cancer Symposium, 2011



Imiquimod/Abraxane Combo Effective for Skin Mets
By: BRUCE JANCIN, Oncology Practice Digital Network DEC 28, 2011
FROM THE SAN ANTONIO BREAST CANCER SYMPOSIUM
VITALS
Major Finding: Among the 11 patients who were able to complete the regimen of topical 5% imiquimod plus systemic albumin-bound paclitaxel, 5 had a complete response, meaning 100% clearance of treated skin lesions at week 24.
Data Source: Fifteen heavily pretreated breast cancer patients enrolled in a single-arm, nonrandomized study.
Disclosures: The study was funded by a grant from the National Cancer Institute. Dr. Salazar declared having no relevant financial interests.



More »
SAN ANTONIO – The combination of topical 5% imiquimod plus systemic nanoparticle albumin-bound paclitaxel showed excellent clinical efficacy and was well tolerated for the treatment of cutaneous metastases of breast cancer in a phase II study.
Among the 11 patients who were able to complete the novel combined chemoimmunotherapy regimen, 5 had a complete response, meaning 100% clearance of treated skin lesions at week 24.

In addition, one patient had a partial response, defined as a greater than 50% reduction in the size of the largest treated lesion. Four patients had stable disease, with less than 50% reductions in lesion size. One patient experienced progressive disease, with a 25% increase in target lesion size, Dr. Lupe G. Salazar reported at the San Antonio Breast Cancer Symposium.
Fifteen heavily pretreated breast cancer patients were enrolled in the single-arm, nonrandomized study. All had skin metastases no longer amenable to standard therapies.
The chemoimmunotherapy regimen consisted of three treatment cycles. Each 4-week cycle consisted of application of topical 5% imiquimod to target cutaneous lesions on 4 days per week plus systemic albumin-bound paclitaxel (Abraxane) at 100 mg/m2 on days 1, 8, 15, and 28, explained Dr. Salazar of the University of Washington, Seattle.
Treatment-related toxicities included neutropenia, lymphopenia, anemia, nausea, and fatigue; 34% of toxicities were grade 1, 56% were grade 2, and the remaining 10% were grade 3.
Four of 15 subjects were unable to complete the treatment regimen, having withdrawn due to progression of visceral disease.
The rationale for the imiquimod plus nanoparticle albumin-bound (nab) paclitaxel (Abraxane) therapy derives from previous evidence that imiquimod, a toll-like receptor-7 agonist, has shown clinical efficacy against cutaneous metastases. Imiquimod stimulates secretion of Th1 cytokines and upregulates immune costimulatory molecules at the tumor site. Tumor-specific T cell immunity and tumor growth inhibition are enhanced. Moreover, paclitaxel has been shown to increase serum interferon-gamma levels and boost natural killer cell activity. Thus, the working hypothesis was that nab-paclitaxel would augment imiquimod’s antitumor effects, according to Dr. Salazar.
She and her coinvestigators examined the combination therapy’s impact upon endogenous tumor-specific immunity. They obtained pre- and posttreatment 2-mm skin biopsies from target lesions and were able to demonstrate that the treatment marginally enhanced endogenous immunity to the well-known breast cancer antigens HER2, p53, melanoma-associated antigen 3 (MAGE-3), insulin growth factor binding protein-2 (IGFBP-2), and topoisomerase IIa (TOPO-IIa).





60% OF PATIENTS IN THIS IMIQUIMOD ONLY TRIAL BELOW WERE HER2+:
lin 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

also:canadian study with email address: http://jco.ascopubs.org/content/32/8/e22.full

lucywang.ca 08-21-2015 09:33 AM

Re: Don't want to give up TDM-1
 
Hello everyone. This is Lucy's daughter Kim - it is with great sadness for me to inform you that my mother passed away peacefully yesterday morning.

She found great comfort in this forum and felt loved by everyone that responded in an effort to help her and support her. Thank you again for all your responses, and I pray that everyone who is still in their battle against cancer to stay strong, brave, and hopeful. This is the end of her journey and she's in a better place now, but it is not the end of the road as we hope to find a cure to conquer cancer in the near future.


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