Testing, treatment, side effects, and more.
Posted on: Feb 22, 2014 09:35AM
I was dx with Stage 1, grade 3, invasive ductal carcinoma, HER 2 positive, er, pr negative in January. I had a lumpectomy and removal of sentinal and two others all of which were clean. The tumor was 1.3cm and there were clean margins. My oncologist recommended treatment with either ACTH or TCH plus radiation once chemo is done. While I was mulling over my options for chemo and not particularly liking either choice, he called to tell me about a newly published study that I might like to know about. The study included 400 women with stage 1 HER 2 positive invasive ductal carinoma with no nodal involvement and clean margins. These women all had lumpectomy's, sentinal node dissection, but instead of ACTH or TCH, they were given 12 weeks of taxol, one year of Herceptin and radiation. The study is 3.8 years old and 98.7% of these women were cancer free at the 3 year mark.
I digested this new info for a while and then met with my team to figure out the chemo plan. I have decided to go with this taxol 12 week plan and my oncologist thinks it is a great choice for me.
I was wondering if any of you ladies had this treatment?
Posts 1 - 30 (881 total)
Feb 22, 2014 10:10AM pattij wrote:
My recent diagnoses is very similar thanks for posting ...my surgery is 3/11 I am going to mention this to my dr I am on a second diagnoses now and need to treat aggressively this time..I am borderline for chemo recommendation since my tumor is so small (0.4cm) but I think I am going to push for it with Herception...I want this gone for good...
Feb 22, 2014 10:13AM pattij wrote:
Do you have a link to the study??
Feb 22, 2014 11:53AM - edited Feb 22, 2014 12:49PM by NinaW
This is a very timely post. I met with the first of two MOs I'm talking with to manage my case (1.2 cm, 0/1 node, weakly ER+/PR-/HER2+++) this past Thursday. He also mentioned the TH protocol as being an option to consider based on this same study. He's been in the oncology game for over 30 years and is very well-respected here in the NY area, so I was interested to hear what he had to say about it because obviously, avoiding the additional toxicity of carboplatin would be terrific if it wasn't absolutely necessary.
I did a bit of digging around, but couldn't find any additional studies to support the one you cited. And while I haven't made a final decision because I'm still waiting to meet with my second opinion MO, I think that ultimately I'm going to pass on this option. My thinking is that it might be something to consider if you are a strong ER+ and/or a moderate HER2+, but with a pathology of strong HER2 positivity and an aggressive tumor profile, you're probably best off taking the strongest therapeutic course they can throw at you. For those of us who can't really lean on hormonal therapy over the course of many years post-chemo, TCH seems to be the best insurance we have to really reduce our risk of reoccurence to the bare minimum.
The first MO agreed that too little evidence has been presented to make him want to leap in this direction as a general rule, even though it's clearly an attractive one for a select group of us early-stagers.
Edited to add the link to the study, which was conducted by Loyola: http://loyolamedicine.org/newswire/news/herceptin-plus-taxol-very-effective-treating-some-lower-risk-breast-cancer-patients
Edited once more to add that what I REALLY wish they'd do is initiate a trial using both Herceptin and Perjeta as adjuvant therapy for node-negative Stage 1 cancers that are strongly HER2-positive. I feel as though those of us with operable tumors larger than 1 centimeter but smaller than 2 centimeters and node-negative aren't being addressed at the moment with regard to multiple attacks on HER2 receptors. This seems strange to me, because early detection means that there are a whole lot more of us in this group than there have ever been, and if we could establish a protocol that really targeted HER2 receptors on multiple levels, it would probably eliminate the need for such toxic chemo protocols for us.
Feb 22, 2014 01:01PM Summerwheat wrote:
I had a second opinion from a Stanford prof, suggesting only Taxol and Herceptin based on the study you cited, but my MO is not comfortable with it yet, as there is only one study out there. I am only 43 and will be going with TCH , which is more aggressive, but at this time the standard of care.
Feb 22, 2014 04:50PM sduch1 wrote:
I am a higher stage than you so I did ACTH but wanted you to know that I was treated at MGH (I think the study is out of Dana Farber) and they split up my treatment so I received TH first, then surgery, and then after surgery I did AC. At the time of my surgery I had a PCR with just TH alone. I wasn't in a study, it was just how they decided to do my treatment, but I believe they did it that way to see the effects of TH alone.
While I was in treatment, I met a woman who was a lesser stage, Stage 1 and she got 2 opinions, 1 from Dana Farber who said TH and 1 from MSK who said TCH. She decided to go with TCH.
Feb 27, 2014 08:09AM Ukkate wrote:
I started out last year with TCH but was reacting so badly to it that after 2 treatments (out of 4) my onco switched me to 6 weeks of weekly taxol with Herceptin and mentioned this study. I felt comfortable switching
Feb 27, 2014 08:58AM NinaW wrote:
See, you are another prime example for why more research is necessary into gauging chemosensitivity before initiating treatment. I'm so sorry to hear you had a bad reaction. As though chemo isn't stressful enough in the first place!
Can you tell me if your onco ever raised the issue of Perjeta with you? I'm so curious to know whether doctors on the front lines are pushing for multi-pronged attacks on HER2 receptors for hormone-negative patients. I was initially diagnosed hormone-negative at biopsy, but the final path on my tumor after lumpectomy revealed that I was 15% ER-positive. I still feel as though my benefit from using AIs will be nominal at best, and am very interested to hear what other Stage I HER2-positive women are being told by their physicians about ongoing treatment.
Feb 27, 2014 09:00AM SpecialK wrote:
Nina - they have initiated a Herceptin and Perjeta protocol for early stagers but it is only being administered neo-adjuvently at the moment.
michelle - the member fluffqueen01 on the Triple Positive thread did Taxol and Herceptin for a smaller mass - you could PM her for more info.
Feb 28, 2014 08:52AM Arwen75 wrote:
hi, I live in Europe and maybe it is not of any use to you but I'm participating on a study that uses Herceptin and Taxol for HER2 positive tumors. They will plant titanium clips in the tumor then they will start 3 cycles (1 cycle is 4 weeks ) with 2mg/kg of Herceptin and 80 mg/mq of Taxol. Once every week , after 12 weeks If the therapy is successful and the tumor got smaller an other 12 weeks will follow before they will perform a breast saving operation ( only the segment where the tumor was). Studies showed that neo-adjuvantlytreatment lowered the risk of recurrence and also that weekly therapy was endured better then once every 3 weeks as they used to do. These are the protocols they use in Europe at the moment (Germany,Italy...) after this they will continuo Herceptin and radiotherapy for 6 weeks. In my case it are 2 tumors one attached to another liked glasses, size 19 mm x 16 mm and 16 mm x 7 mm.
I'm diagnosed stage T2 N0
Mar 2, 2014 05:17AM formydaughter wrote:
I found this grudge and brought it to my MO. My Tumor is 3cm exactly, grade 3. I fit all criteria for the study expect they used women with tumors less than not equal to 3cm. My MO (just moved to my MI town fr Sloan Kettering) was open to it. But the tumor board at my hospital overruled it for me for the following reasons: (and boy was I upset): tumor 3cm and my age is 40. (The avg. age of study participants was 53 I think). MO said we needed to get this gone for good now.
If you look at DFS for TCH it is around 88-90%. I was so mad that they were telling me I needed a more toxic but less effective protocol. I had trouble getting behind this idea.
But my MO also reminded me of 2 things : many Stage 1 women can be cured by the surgery, alone making results for drug trials difficult with this group. (Definitely not a reason to not have adjuvant and HER2 targeted therapy for insurance here, but a positive on the prognosis side). And the results of the trial were not yet 5 yrs. out to be a true comparison with the TCH results.
I called Dana Farber and got ahold of the lead research team for the TH study to find out whether it could apply for me, I had noted that looking at new clinical trials by many researchers, the TH regimen is being called the standard of care control arm, against which they are trying new ideas. The latest one fr that research team is using TDM1 - a bullet agent that takes the chemo straight to the cancer cells and not the whole body. You should look into this one - they are accepting new participants. I didn't get very far with DF because I could not travel to Boston.
My MO gave me a bone -Perjeta. I'm post bilateral MX - not neoadjuvant. I am now taking TCHP, have my second round Mon. Perjeta SEs for me include a nasty skin rash on my face that feels like fire, but quickly heals, it has been hard to isolate Perjeta SEs since it is always given with other chemo drugs, but the medical rep confirmed to my O team that this is one. I'll take it though! Small potatoes for a 1-2 punch against that sneaky HER2 - it's supposed to double the effect of H alone. My ins co approved this. (That was the last hurdle.)
With my age being a factor and me being ER+ and PR+, my O team will be using targeted drugs to try to extend time on them, as long as possible.
Good luck to you! Chemo is not fun. I am learning to lose control over this process, a hard thing to do. But educating myself on as much as possible has helped me.
Mar 2, 2014 05:20AM formydaughter wrote:
ahhhh spellcheck on my iPhone
I found the study not a grudge...!
Apologies for any other spellcheck errors!
Mar 3, 2014 01:53PM Kentuckywonderwoman wrote:
Hi Michelle, I had a very similar diagnosis in Oct. 2012. I had 12 weeks of Taxol/Herceptin then started radiation and finished the year with Herceptin every three weeks. My doctor felt that the regimen was the best prevention for reoccurrence. I tolerated the treatment well and finished my last Herceptin in Dec. 2013. I feel as comfortable as one can with the treatment plan recommended by my doctor. Please know that everyone is different. The most important thing is to make sure that you have a doctor that you can trust to help you make the right decisions.
Mar 3, 2014 10:17PM - edited Mar 3, 2014 10:28PM by septembersong
I was in this study--at Dana-Farber in Boston. I'm now nearly six years past diagnosis and doing well. I was 58 at diagnosis. My profile is similar to yours, except I'm ER+, and so took letrozole for five years. I stopped taking that drug in January. I had a lumpectomy with clear margins, 12 weeks of Taxol/Herceptin (then finishing out the year of Herceptin), followed by 33 radiation treatments.
I was one of the few people who experienced permanent peripheral neuropathy from the Taxol. I have a strong feeling that if I'd chosen the other option available to me (TCH), the SE's could have been much worse.
The treatment overall was easy to tolerate. I worked all the way through, taking only treatment days off. And that was just because I was usually so tired/fatigued that I'd come home and take a nap.
These are clearly hard decisions, and if you know nothing about these issues when you get this diagnosis, it can feel truly overwhelming.
Whatever you decide, best of luck.
Mar 4, 2014 05:27AM Hope9 wrote:
Michelle, this is the regimen my doctor and I settled on for me due to my history of extreme medication sensitivity on even small doses of any meds. I start of March 14, 2014.
Mar 8, 2014 06:17AM Michelle14 wrote:
Thank you ladies for all the responses. I start chemo and herceptin this upcoming Monday. Just finished a week long vacation in Cabo that was planned before the diagnosis. It was a fantastic break from everything cancer and I am ready to tackle this once and for all. It was indeed the regimen from the Dana Farber study that I will be doing and am very grateful to have been offered it. The two key points that solidified my decision were when my oncologist said that Her 2 positive cancers are most likely to recur in the first 3 years 90% of the time and the group as a whole was still cancer free 98.7%, 3.8 years later. The other is when he told me that "If it were my wife with the exact same situation, I would have her do this." I am 46, single and need to continue to work my very demanding job as an Emergency Room RN. The lessened side effects of this treatment feel like a Godsend to me. I know that in medicine, treatments are ever changing and I honestly see "less is more" for early stage Her 2, becoming the norm and not the exception since Herceptin seems to be the key in this particular cancer. I wish all of you ladies the very best.
Mar 8, 2014 12:52PM septembersong wrote:
I'm glad you've made your decision and are ready to start treatment. Weighing the alternatives can be difficult. I'm sure it's a relief to have that behind you.
Good luck as you go through treatment! It sounds like you're strong and healthy going into this, and that will help you get through it. Sending healthy thoughts.
Mar 9, 2014 01:23PM BabyRuth wrote:
Michelle-I just finished doing Taxol in November for my last recurrence. I am still completing the yearly herceptin. My very first diagnosis I did the TCH combo and it was definitely much harder on me. We were hoping to do perjeta also but I had some issues with my heart which delayed everything. Because taxol is not cardiotoxic my MO decided to start me on it right away. I think you will find taxol very manageable.
Mar 19, 2014 07:33AM Michelle14 wrote:
Just wanted to give a little update. Just finished my second weekly taxol and herceptin treatment. So far I feel great. The only thing I have noticed is a strange taste in my mouth. I have been able to work and carry on my life normally. I am immensely grateful for this option of treatment and so glad my on on oncologist recommended it for my particular situation. For those of you ladies that did the taxol, herceptin only, how long did it take before you started loosing your hair?
Will continue to keep you ladies posted. Wishing all of you healing thoughts. : )
Mar 19, 2014 07:42AM Michelle14 wrote:
Ann- thanks so much for your reply! I am so glad to have heard from one of the people in the study. Thank you for "taking one for the team" and being part of it. I am sooo happy to know that you are doing so well so far out from diagnosis and are still disease free. I truly see "less is more" becoming the future of early stage 1, Her 2 positive because of the antibody therapies available. Thank God for the improvements and ongoing research. I pray that one day the "cure" for this in it's early stage won't even need chemo.
Mar 19, 2014 08:02AM BabyRuth wrote:
Michelle-I started shedding after the second treatment. By the fourth week I finally gave up and shaved it down to about an inch. I did not end up losing all my hair but pretty much of it. I was not comfortable going out without a wig or hat. I did not lose my eyelashes or eyebrows until a few weeks after the final taxol treatment. I worked through my treatments also. It helps me to keep my mind busy so I am much better off working than having too much down time. Sounds like you are doing great so far!
Mar 19, 2014 08:25AM septembersong wrote:
I lost my hair starting the third week, just as my oncologist predicted.
It was very gratifying to talk with her during our last visit about the positive results of this trial. I wish I could take credit for "taking one for the team," but as I remember it the decision was a difficult one that involved trusting a doctor I'd just met (who talked very fast) with what felt like one of the biggest decisions of my life. Happy to see that this protocol has shown such good results with early-stage HER2+ disease.
Mar 19, 2014 04:32PM EverForward wrote:
Michelle, thanks for starting this topic. Like you, I am in my 40s, live alone, and work full time. Based on the minimal research I've done - and knowing that everyone reacts to treatment differently - it sounds like taxol generally has less harsh side effects than the alphabet soup of other chemo options. I meet with a medical oncologist in a couple of weeks and I feel better prepared to discuss treatments. Keep us posted on your progress and good luck!
Mar 20, 2014 01:54PM codi10 wrote:
Hi, I'm one of the lucky 406 women chosen for the "light" chemo trial of only Taxol combined with Herceptin...I live outside of Boston, Ma. & received my treatment at Mass General. It was very well tolerated by me and I am certainly grateful when I say it will be 5 cancer-free years for me in July. Hang in there...there is a light at the end of the tunnel!! :-)
Mar 23, 2014 01:20PM Michelle14 wrote:
Awesome! Love to hear this! Thank you for participating in the trial and making it available to the rest of us early stagers. Best wishes for continued good health! : )
Mar 24, 2014 09:43AM pattij wrote:
just got back from the ocon, doing the taxol and herceptin for 3 months then follow up with herception only for a year starting in may after my double mastectomy April 8 ... tumor was VERY SMALL .4mm ... and no lymph involvement but just want to be sure ..her2+ est- pro- k67 score was almost off the chart somewhere around 87%... there were multiple highly abnormal cells all around my tumor hence the double mastectomy recommendation...
my oncologist was impressed with my knowledge thank you all LOL
am i going to loose my hair ?????????? let me know if so im breaking bad and shaving it all off now...
Mar 26, 2014 07:06AM Michelle14 wrote:
I was told that I would lose my hair with the taxol. I just had my 3rd treatment of 12 and haven't started to loose it yet. My oncologist did think it would happen by the 6th treatment though. I too will be shaving it after it starts. Got a couple of cute wigs. Hate to even think about it but know it's inevitable so I will deal with it. The taxol and herceptin so far is really easy to tolerate. The only side effect I have noticed so far is that food doesn't quite taste right. I have been doing the treatment on Monday's and I have noticed that I am a little more tired than usual by Friday but nothing horrible at all.
Good luck with everything!
Mar 26, 2014 09:04AM codi10 wrote:
Thanks, Michelle, for your response and I wish you the very best, too! Since I was on the same regimen as you are, I can say that my oncologist at Mass General was "spot on" when he told me that IF I was going to lose my hair it would become apparent after week 6 (I had my treatment TH every Monday morning, too). And sure enough, it started around week 6. I went then and bought my wig. I lost a good portion of my hair by the time Taxol was done (12 wks. 1X per week) However, the Herceptin did not affect my hair & I actually had some small regrowth before I completed the 12 weeks. Roughly 3 1/2 months later I shed the wig...after I returned from a vacation with a new hairdo!! I've always had thick hair, but the regrowth was actually thicker & looked great! I felt it was an unexpected "gift" for losing it in the 1st place!! :) Keep us posted, Michelle
Mar 26, 2014 05:48PM EverForward wrote:
For those of you who did the Taxol + Herceptin, did your med onc give a reason for choosing this combination instead of a more established chemo drug like TCH? My first med oncologist (second opinion appointment is coming up soon) said she wasn't as comfortable recommending Taxol mostly because there is less data and instead recommended TCH + Herceptin. She mentioned my relatively young age (42) as a factor in choosing the more established TCH. I'd appreciate hearing how you guys arrived at the decision to go with Taxol (for those who didn't participate in the study).
Mar 26, 2014 10:17PM septembersong wrote:
I was a participant in this study, but I'll share my experience in making the decision. I had seen an oncologist at my local hospital, who was also affiliated with Mass General Hospital. He had recommended four sessions of TCH instead of the standard six. When I went for a consult at Dana Farber, the oncologist there pointed out that the likely reason he recommended four rather than six sessions was because the treatment was more toxic than T/H, and that the shorter course would suffice. My sense then was that they were grappling with what the best treatment was for this particular kind of tumor.
It's a hard decision. All I can offer is that I'm disease-free nearly six years later. I do have permanent peripheral neuropathy from the Taxol, and I can only guess at what side effects I'd be dealing with if I'd gone with the TCH. I was 57 when I was diagnosed.
The Taxol/Herceptin treatment wasn't difficult (I worked throughout, except for treatment days). It's a long year, for sure, but it does end, and life returns to normal. Best of luck with whatever you decide.