Testing, treatment, side effects, and more.
Posted on: Jan 26, 2012 05:29PM
Posts 31 - 47 (47 total)
Feb 24, 2013 04:55PM Deedra1 wrote:
I have good news - on February 21, 2013, my doctor confirmed I am CANCER FREE, after 1 year of herceptin only. 8 months ago, I completed my final herceptin only infusion in the herceptin only clinical trial for women over 60 (was 63 when I started it in 2011). You can find it on clinicaltrials.gov. Once these trials are completed, hopefully the treatment protocols will be changed so more women can be considered for treatment without cytotoxic chemotherapy. I was ER+ PR- HER+ (scored over 3 for HER+), had 2 tumors, one 2.5 cm, the other .6 cm, sentinel node positive, 2nd node positive, mastectomy, no RADs. Refused removal of any other nodes. I took Arimidex at the same time, but no cytotoxic chemo. I agree with Kara, please watch "Living Proof" or read the book it is based on, The Making of Herceptin, by Robert Bazell. The movie and book plus much research helped me make my decision to join the trial. The doctor I saw at diagnosis was extremely aggressive about setting me up for TCH, I no longer see that doctor, who told me I could not receive herceptin only anywhere, from any doctor. Two days later I found the clinical trial on my own. I was Stage IIb, with node involvement and am now celebrating my herceptin only success. However, there is a caveat - I am high risk and will be watched carefully. I also had breast cancer on the other side 30 yrs ago, had one recurrence, two surgeries, refused all treatment except surgery, refused lymphectomy, let them take 5 nodes only, all negative (received many raised eyebrows over it - it made me smile when sentinel node biopsy came into play years later). There are also drugs out there that will take the toxicity out of toxic chemo, named TDM-1 or Kadcycla, which combines herceptin and a cyto chemo that has been modified to take out the toxicity. It is called the "silver bullet" and is on the market now. According to my doctor, women who have never had cytotoxic chemo are not eligible for that drug because the FDA mandates a course of cyto chemo first, but I'm sure that will change once clinical trials many years in the future have been completed. I say that with a bit of sarcasm! But there are many drugs in the pipeline, so don't give up hope! Ask questions, get second opinions, and stay positive. Better to be a "why baby" than to give up and be a "cry baby!" Everyone has different DX, tolerance levels, and ideas on treatment, so make your choices based on what is available and don't look back. I wish the best to all of you in dealing with this awful disease, which sooner or later will be brought to its knees, hopefully sooner. Love to you all.
Jun 11, 2013 06:53AM liza23 wrote:
How do you find an oncologist willing to administer Herceptin without the rest of the chemotherapy?
Jun 11, 2013 03:28PM - edited Jun 11, 2013 03:30PM by AlaskaAngel
Oncs who are in private practice may be more independent in their decision-making than those who are part of a corporate medical system that dictates more of their decision-making. However, even among those who are part of a corporate system there are those who may be willing IF you completely refuse to do chemotherapy.
Jun 13, 2013 01:39AM SassyWell wrote:
I was diagnosed in February with Triple positive IDC. My Med/Onc is part of a large University System and I was offered the Hercpetin only. The standard of care for all Hers+ BC is TCH or other chemo agents + Herceptin. I turned down the Herceptin since my MammaPrint came back low risk and I was then offered Taxol + Herceptin. After turning that down, I was offered just Herceptin (plus Tamoxifen). I've worked in Heathcare for almost 20 years and after doing extensive research on early stage/low grade Her2+ BC, I decided I would not do chemo, unless my distal recurrance scores were unfavorable. There is more information forthcoming about the additional genomic testing and the impending data on low risk Her2+ BC. Stay informed and always know there are options. From the beginning I took the emotion out of this and only reacted to facts and data. Best of luck to all.
May 13, 2014 05:27AM yensmiles wrote:
Deedra1, that is awesome! Love reading your good news. I am considering HErceptin as adjuvant treatment now. Doctors are asking for chemo (not so much Herceptin because of the cost in my country), and I am still undecided, and shall consult another one or two oncologists to see what's best!
Feb 10, 2016 11:59AM ShijieZhang wrote:
Hi, I really appreciate this post. But I'm in South Florida and can't find any independent oncologists. Everyone seems to be pushing Herceptin + chemo. Maybe, if I could talk to an onc somewhere else in the country, they could give me some advice? Any names?
Feb 10, 2016 12:17PM ShijieZhang wrote:
Hi, SassyWell. I truly hope you're still actively on this blog. I am desperate to avoid chemo and go strictly on Herceptin for a number of reasons. All my life I have never taken Western medicine, only Chinese herbal medicine. So now, in the U.S. whenever I try Western medicine, my body reacts terribly, and chemo is bound to hit me a lot harder. Meanwhile, I feel my diagnosis (very small early stage HER2+ tumor) and excellent progress so far (100% successful lumpectomy) qualifies me for Herceptin only, even though my oncologists (two so far) don't agree. Can you give me an update on your Herceptin-only results? Can you tell me the name of the university you mentioned that supports that approach? I'd be forever grateful.
Feb 10, 2016 01:17PM ca55 wrote:
ShijieZhang - I sent you a private message.
Feb 11, 2016 07:09PM AlaskaAngel wrote:
At the time I was diagnosed in 2002, the trials for Herceptin were in progress although I knew nothing about them, and when I asked to participate in clinical trials my onc did not tell me about the one I would have been qualified to participate in, nor did he mention anything about them to me. So I've never had Herceptin, and I very reluctantly did chemo for stage 1 ER+/PR+ HER2+++ 1.9 cm bc with negative nodes. Had I known about Herceptin (and the "ethical basis" for including chemotherapy with the Herceptin) I certainly would have chosen to do it w/o chemo. The net is that because I had CAFx6, there is no certainty as to whether or not the chemo was of benefit to me.
However, a very reliable person I know personally whose tumor was similar to mine chose not to do chemo and went to an independent oncologist, who supported her request for Herceptin only. She also did 3 years of an AI before stopping that, and is now 9 years out w/o recurrence.
Because the original clinical trials were done with chemo, some insurance companies started out requiring both. To me this is the unfortunate result of the bias involved with clinical trials when it comes to very early stage bc. Some point to the limited success that was achieved when Herceptin was given alone to metastatic HER2+ bc patients, but that position assumes without proof that patients who have no known tumor burden would be likely to have the same results as those who clearly have a demonstrated far greater tumor burden. I don't buy that lack of proof.
Feb 11, 2016 08:09PM - edited Feb 11, 2016 08:38PM by BarredOwl
I am a layperson only, with no medical training.
It is good to have "excellent progress so far (100% successful lumpectomy)". Although as you may know, this observation speaks only to the risk of local recurrence, and does not speak to the risk of distant recurrence.
The tumor was in there for a while before it was removed, providing some potential opportunity for cells to escape the breast either by the lymphatic system or via the blood stream before surgery. If any cells moved away to distant sites (laying the groundwork for a distant recurrence (metastatic disease)), these can be reached by systemic treatments, including chemotherapy, HER2-targeted therapy, and/or endocrine therapy (as appropriate), and reduce the risk of distant recurrence.
Understanding your personalized estimated risk of distant recurrence is an important component in the risk/benefit analysis that informs decisions about systemic therapies. You should not hesitate to investigate what is known about your specific risk of distant recurrence and your various treatment options towards arriving at an informed decision about what is best for you.
Other than having a "very small early stage HER2+ tumor", I do not think you have indicated the histology of your tumor (ductal, lobular, other); the actual size of the tumor in cm or mm (other than the qualitative "very small"); lymph node status; your hormone receptor status; or age. Any or all of these (or other clinico-pathologic features) may be factors in the recommendations you are receiving from your doctors.
Similarly, the experiences of others here may not be strictly applicable to your specific situation if their disease / risk profile differed materially in one of more of these factors (or possibly other favorable clinico-pathologic features), and/or if they received additional therapies that you may not qualify for. For example, those with hormone receptor-positive disease may additionally qualify for and receive endocrine therapy in addition to chemotherapy and/or herceptin.
Feb 11, 2016 08:59PM molly1976 wrote:
I had chemo + Herceptin. I finished chemo almost nine months ago and will finish Herceptin in two weeks. I just want to reassure you, ShijieZhang, that even if chemo is unpleasant for you, someday it will be a distant memory and you'll have the peace of mind knowing you did everything possible to fight this cancer. It really isn't bad for many people. I had taxol only, but I have a friend who is going through AC+T right now and she's doing great. You can get through this! The reason your doctors want you to do chemo is to give you the best possible outcome.
Feb 11, 2016 09:19PM AlaskaAngel wrote:
I concur entirely with Barred Owl's response.
Each one of us has a different perception of benefit vs risk.
Here is one recent investigation regarding the effects of chemotherapy, with interesting details if you read the in-depth discussion about it:
Feb 13, 2016 12:47AM - edited Feb 13, 2016 12:50AM by Nibaum
I have a similar dilemma to ShijieZhang. I have an unusual combination of grade 1 (mitotic grade 1) tumor that is highly ER/PR positive but also HER2+, 2.4 by FISH. From what I have read, I don't feel that chemo will be very effective for me but the 3 oncologists I saw did not deviate from the standard treatments of either Taxol/Herceptin or TCH. I was really hoping for Herceptin only or Herceptin with a lighter chemo like Navelbine. But I am not certain enough to insist on my own regimen.
My treating MO did recently order an Oncotype DX test for me but the result won't come in for another 10 days or so. I am not sure what the results will be or if I can make a decision on a low recurrence score if I am still HER2+. I am coming up on 8 weeks from surgery, so I went ahead and scheduled Taxol/Herceptin to start next Friday. My MO did say I can stop chemo treatments if I have problems and/or my Onco score is low.
ShijieZhang - Perhaps you can ask for an Oncotype DX test, which is not normally done for HER2+ cases. But my insurance approved it because my tumor size was 1 cm or less. So if yours is small, it wouldn't hurt to get more information about your BC.
Feb 16, 2016 06:04PM Nibaum wrote:
ShijieZhang - I just want to correct my last suggestion that you ask your MO for an Oncotype DX test. I have been learning from resident experts on this board that Oncotype DX test is not validated for HER2+ cancers and may not help you to determine treatment. My MO ordered the oncotype DX for me because there were doubts on whether my first FISH test was correct. Now that a second FISH test has confirmed my HER2 positive status, I won't really be able to use my Oncotype DX test result even if it comes back low. Sorry for if I added to your confusion.
Best to you!
Feb 16, 2016 06:58PM BarredOwl wrote:
Just to clarify, the fact that HER2-positive patients are not formally eligible for the Oncotype test for invasive disease likely reflects that the test is not sufficiently validated in HER2-positive patients, and hence may lack prognostic or predictive value in HER2-positive patients. That is my layperson's view.
Consistently, consensus guidelines from the NCCN (Version 1.2016) as of this date, do not include the use of the Oncotype test for HER2-positive patients, but only for certain hormone-receptor positive, HER2-negative patients.
However, I am a layperson with no medical training. I may be unaware of specialized information. Therefore, this information should be confirmed with a medical oncologist, to ensure receipt of accurate, current, case-specific expert medical advice from qualified medical oncologists regarding such testing in any particular case.
If a HER2-positive person has received such testing, they should inquire with their medical oncologist specifically whether current guidelines provide for the use of the Oncotype test in their specific case or not, request an explanation of the quality and scope of validation of the Oncotype test in HER2-positive patients in general and in respect of HER2-positive tumors the size of their tumor, and whether any such evidence that is available is sufficiently robust to rely on for decision-making purposes in their particular case.