Herceptin without chemo

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Eileenohio
Eileenohio Member Posts: 460

I am ER/PR HER2 positive. Has anyone taken Herceptin without chemo? I am 73 yrs old & I live alone Chemo terrifies me.      Thanks  Eileen

                                                                      

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited January 2012

    Eileen,

    For those who are older, there is a clinical trial being done offering trastuzumab used alone, but it will take a while to finish the trial. You could try to see if you are eligible for it.

    The reason trastuzumab is usually offered with chemotherapy is because the trials they did originally for HER2 positive patients were done with chemotherapy and trastuzumab.  For the last 10 years they have not done much to find out whether trastuzumab used alone (or even with something like removal of the ovaries, or the addition of other hormonal treatment like tamoxifen) is effective enough for an aggressive cancer like HER2 positive cancer.

    Here is the link for the trial I mentioned:

    http://clinicaltrials.gov/ct2/show/NCT01104935?term=breast+trastuzumab+elderly&rank=2

    You can ask your onc about it.

    I did not do trastuzumab because it wasn't available at the time I was diagnosed. I know of other women younger than 60 years old with HER2+ ER+ PR+ cancer who found oncologists who were willing to provide trastuzumab without chemo. The standard therapy is to offer it with chemo and oncs do offer it, but sometimes also will prescribe trastuzumab alone for those who will not do chemo/who have other conditions that would make chemo impractical.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited January 2012

    Thank you.  I printed this out to take with me monday when I see MO.  Eileen

  • kerrberlady
    kerrberlady Member Posts: 49
    edited January 2012

    Eileen, I am currently doing Herceptin without the chemo.  It was a choice that I made, along with my oncologist, as this is my second time around after 10 years.  I am 50, actually turned 50 during recouping from BMX.  I did chemo, radiation, tamoxifen, and arimidex after the first diagnosis, and was only ER+.  This second time is ER/PR-, but HER2+ and all the research and all the things I already know, and being single and having to pay bills, I and my onc decided that we would do the Herceptin alone.  I do not regret the decision.  If it doesn't work, then the hardcore chemo it is, but for me, this was the best decision.  Talk to your doc, hear all the options, and in the end, it is what you decide and what you can handle.  I just didn't want to be that sick again, like I was the first time.  

  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    I just turned 70.  My ocologist has given me the option of Herceptin without chemo and an Arithdex for 5 years.  I am going for a 2nd opinion next week.  I also have MS although I appear to have no problems other than the invisible symptoms which are not interfering with my daily functioning.  I am not adverse to the chemo but of course would rather just have herceptin if it works alone.  I've just read the clincial trial info and it is too soon to obtain results of herception alone.  Kerrberlady please keep posting and let me know how your treatment is going.  The only difference other than age in our diagnosis is that I am ER and PR+.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited February 2012

    My oncologist would not give me that option,so with great apprehension I have agreed to TCH. I pray that I can tolerate it.   I have no choice. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    eillenohio,

    Some oncs will and some oncs won't. Depending on your comfort level about it, getting other professional opinions might be helpful in making a final decision. Grade 2 would indicate that it is a slower-growing type of breast cancer and opinions may differ among oncs about the need for chemotherapy for somone who is so likely to be postmenopausal and with other aging factors to consider.

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2012

    Eileen - did you get a second opinion about the treatment? I think it would be a good idea.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    I agree with Omaz.  A second opinion would be indicated, b/c you are older, and the risks of chemo with Herceptin (heart damage) are higher.  TCH, I believe, certainly is not as risky as Adriamycin with Herceptin - but still - I'd get a second opinion.  I've read a lot about HER2+ recently, and I know there is a fair amount of controversy about the risks of chemo combined with Herceptin for older patients.  I've heard multiple physicians say they would consider Herceptin alone in this population, even though it has not been studied extensively.   It is worth getting a 2nd opinion, just to be sure.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    Thanks Omaz and dancetrancer for joining me in suggesting additional opinion(s). Having done chemotherapy myself, I think it would be especially valuable to seek them out even if all they do is provide confirmation. Getting into the midst of the unpleasantness of chemo and then wondering would probably be less emotionally satisfactory than taking the time now to get more perspective.

    A.A.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    I certainly think chemo/Herceptin is indicated with a HER2+ tumor > 5 mm.  The research clearly shows HER2+ is not something to mess around with and should be taken seriously.  I would hate for someone to think I am recommending no treatment.   However, if you are older I think it is important to have a full cardiac evaluation to make sure it is safe to proceed and is not contraindicated.  If it is contraindicated, then perhaps the option of Herceptin only is possible - again, depending on cardiac status.   And, if you have any questions, and are scared, a 2nd or even a 3rd opinion can give one some peace of mind.  Peace of mind about how to proceed is invaluable! 

  • cienna
    cienna Member Posts: 2
    edited February 2012

    Hi Eileen,

    My mum was diagnosed recently (11/11/11) with ca of her left breast. Her tumour was 1,2cm after lumpectomy done. She had a sentinal node biopsy done. They removed 2 and were clear. She is a grade 2. She had 6 weeks of radiation which she completed. She will be put on herceptin and femara. Herceptin will be once in 3 weeks for a year. Her onco advised her that she will not benefit from chemo so it will be herceptin only for her. She will start her femara and herceptin treatment together in two weeks. Her onco says it works well together.

    Initially when we found out it was very scary and still is. But if anything joining these forums really help you and gives you the encouragement you need.

    All you ladies are an inspiration to me. I pray for all you and wish you good health always!

    Love Cienna

    ____________________________________________

    Mum Diagnosed: 11/11/2011 (Left breast CA)
    Age: 59yrs
    Lumpectomy done: 23/11/2011 (Tumour 1.2cm, Grade 2, 2 nodes removed. All
    negative)
    Results: ER+, PR+, HER2 +++
    Started treatment: RADS on 20/12/2011 (Completed 30 treatments)
    Will be going onto Femara for 5 years and receive once in 3 weeks Herceptin for 1 year.

  • Laura5133388
    Laura5133388 Member Posts: 577
    edited February 2012

    eileen, I agree with everyone. Get a second opinion. My onc also said he would consider herceptin without chemo for older patients who do not have node involvement. I am glad they are doing trials on this, because as someone wrote in one of the above posts, the reason they rarely recommend herceptin alone is because there haven't been many studies on herceptin alone.

  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    Today, Feb.20,2012, I had my first herceptin treatment.  No chemo.  I will go on AI after I adjust to the herceptin.  The schedule is for every 21 days.  The infusion was uneventful.  90 minutes and I was given benedyrl and 2 tylenol before starting.  '

    About 1 hr. after infusion I felt some nausea.  Not bad but within2 hrs. I had chills and a 100 degree temperature.  Sleft and felt really lousy.  I took 2 advil and the temp came down and I think the worst is over.  I can handle this.  I also have MS and am 70 yrs. old.  I got 3 opinions of treatment.  All said TCH would be best but with MS and age they would give me herceptin as monotherapy.  Over the next year as I continue I will be monitored and if cancer returns I will then take the chemo.  

    The RESPECT clinical trial for herceptin alone is on going in Japan.  It started in 2009 and no results have been posted but all the onc's I talked with felt in my case it would be beneficial and my QOL would be better.  I have numbness and tingling in legs and feet now and Taxol would certainly exacerbate this.  Anyone trying this please post or post how you do with herception after the chemo.  I feel I will be able to garden and travel this summer and continue to keep my grandkids when needed.  Today I felt a peace that I have not had since DX.  Glad to be on a treatment plan.  Hope everyone is doing well and I enjoy reading the good, the bad, and the ugly of this journey.  We are strong women.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012
    Nana2three, glad to hear you did ok with your first infusion.  Can I ask, how large (mm) was your IDC?  I think I may have asked you this before, so sorry if this is a repeat.  So glad you are feeling at peace with your decision!!!  It is something I hope to have soon. Smile
  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    Eileenohio:  Have you seen the movie "Living Proof" about the doctor who developed Herceptin and the struggles he had getting it through clinical trial and on the market.  It was given with chemo, but was said several times in the movie that chemo didn't benefit women with HER2+ which was why Herceptin was such a breakthrough for them.

    There is another lady on the site, Evebarry, who I think is doing Herceptin without chemo.  She is 62.  You can PM her and she will be glad to speak with you about her experiences.  It's been a long and difficult decision for her, but she has done a lot of research. 

    I wish you all the best in your decision.  Sending prayers and hugs! 

  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    dancetrancer - The tumor was 0.8.  Since it was small one ocologist was hesitant to do anything.  I have been researching and trying to obtain all the info possible in making this decision.  Two ocologist felt that herceptin was better for me alone than combined with chemo because of my MS.  I really feel it will work.  Chemo is a possibility in the future if needed. 

    This morning I feel fine.  Just did my volunteer work and picked up 2 ladies from the nursing home and took them to a seniors activity which I host at our church.  Tonight I am working on the Shrove Tuesday Pancake dinner and tomorrow will play Bridge.  I am so determined my life will go on and as long as I stay positive and feel good I should not give in to the minor MS symptoms or dwell on the BC.  I don't mean to sound flippant but living with MS and made me value my independence and I want  to keep it as long as I can.  Of course, I'm aware I may be on here tomorrow whining about the herceptin symtoms.  Thank you all for posts and blessings to you all.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    nana2three - thank you for the info.  I have an even smaller IDC (3 mm).  I have received varied opinions and have done tons of research on whether to not tx, only take Herceptin, or do herceptin w/chemo.  There are many unknowns.   It is up to me now what decision I make.  I was just curious as to your thought process, so thanks! 

  • Bev0003
    Bev0003 Member Posts: 2
    edited February 2012

    Hi I am currently having herceptin without chemo , second time round for me , first time 5 years ago (at25)had chemo , + herceptin . This time around I choose not have chemo as has came back in liver , lungs , and bones , that was 6 months ago had another ct scan , with fantastic results , no signs in lungs and half the size in liver , and good signs in bones , and I feel great !!

  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    Bev003 - Glad things are looking good for you.  Do I read this right? 5 years ago you were dx. and did chemo plus herceptin.  Reoccurence and then just herceptin again and it is working?  Are you taking any hormonal therepy(pill form)?  I believe herceptin will work alone but there is just not the customized random trial data that doctors use as their standard.  I understand that.  But I also believe when the data comes in for herceptin alone it will open other avenues of treatment. 

    2n day after herceptin infusion.  No problems.  Nose dripping and muscles a little stiff but I'm off to a Bible Study this morning and playing bridge this afternoon.  Also having out of town friends for the week end.  If I can maintain my normal (whatever normal is) quality of life and function as an independent woman, I'll be a happy camper.  I am keeping a journal of daily symtoms and tidbits to share with oconologist and the nurses at the infusion center to maybe help any others who may be taking herceptin alone in the future.  Blessings to all.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    Bev003, I am wondering as well if the herceptin alone cleared up your cancer. I'm only doing herceptin without tx or Als. I would love to get feedback from those doing herceptin a lone.

    My hope is my immune system does the trick...killing any possible mircro cancer cells that has the herceptin locked onto it.

    I wish there was a 6 month study as I'm not sure I can do it for a year. Three months would be a milestone.

    My second infusion is next Monday. Sunday, I was just beginning to feel somewhat normal from the side effects of the first infusion. I'm hoping the future infusions will be somewhat kinder to me.

  • Bev0003
    Bev0003 Member Posts: 2
    edited February 2012

    Hi girls :-) , yes second time , I am on zoledronic acid to help my strengthen my bones , I have this every three weeks alone with herceptin . How ever when I was first told , they offered me capecitabine , which I did try but after a month it made me feel so I'll , so I decided to not take them any more , it is all about the quality of life for me so my out look was if I was going to have six good months and do the things on my list . , they also recommended I went on Zoladex which again I , did for the first to months , then thought I dont want these menopausal symptoms any more , ( as you are aware they not nice ) !! So they also put me back on tamoxifen now which as no side affects . Well you could say I didn't play the game they wanted me to ....... So after my 6 month scan I could not believe things were improving so much , so went for another opinion , a very nice lady from London and she said it has work so well because my cancer is hormone perceptive and to keep on going and try and live a normal life , so in my case it is mainly the herceptin is working at the moment , I was told when things do start to get worse again there are things that can be added to boost the herceptin , but I must amit have to be willing to go on the trials ! I am just so glad I can still get up each morning and go and ride my horses , I find the side effects to the herceptin very easy to deal with just maybe a bit tired for a few day after , I hoped this has helped and wish you all the best ...xx

  • BRCAdaughter
    BRCAdaughter Member Posts: 3
    edited February 2012

    My mom was just diagnosed FEB 2012 - Stage IIA, (1.2 cm, 3/4 + LN), IDC high grade 3, hormone receptor negative, HER2+ breast cancer; she had a lumpectomy and will be having radiation therapy.  She is 79 y.o., in pretty good health, but relatively fragile and we are worried about chemo. Dr. has recommended Taxol  + herceptin.  Can someone advise on the side effects of taxol?  We are considering going with herceptin alone, although there does not appear to be much data out there in this setting.

  • Laura5133388
    Laura5133388 Member Posts: 577
    edited February 2012

    BRCAdaughter, Has your mom gotten a 2nd opinion? There sure does need to be more studies done on Herceptin alone. If I was your Mom's age, I would definately be thinking about Herceptin alone.

  • Laura5133388
    Laura5133388 Member Posts: 577
    edited February 2012

    Nana2three, I finished chemo in Dec. and will continue Herceptin for a year. I have not experienced any side effects from Herceptin except for runny nose.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited February 2012

    BRCAdaughter, you may want to browse this thread and/or post a question:

    Taxol Chemotherapy 

  • Nana2three
    Nana2three Member Posts: 31
    edited February 2012

    BRCAdaughter - I am 70 and just started herceptin alone.  Got 3 opinions and I feel this was best for me.  I have MS which complicates the chemo + herceptin.  I believe the herceptin will work for me.  The studies with stats are not in to affirm this 100% but all the onc's. I talked with believe it will be helpful and unless I want to risk more nerve damage it is a good choice.  Something to look into.

  • BRCAdaughter
    BRCAdaughter Member Posts: 3
    edited March 2012

    Nana2three - How are you doing with the Herceptin?

  • Nana2three
    Nana2three Member Posts: 31
    edited March 2012

    Tomorrow will be the second herceptin infusion.  No problems since the first herceptin infusion.  I do have muscle and leg aches but it may be the MS and not the herceptin.  The runny nose was pronounced the first week.  I have not started the arimidex yet.  I'm thinking that will start within the next few weeks.  I so believe the herceptin alone will work and I just keep focused on this thought. 

    I've been doing everything I normally do.  Went to my daughter's and chauffered, cooked, and enjoyed by 3 grandkids while she taught Thursday and Friday.  Making plans for summer trips with my husband and grandkids between treatments.  I realize that I may have given my son and daughter the impression that herceptin is a breeze and we have nothing to be concerned about.  But given a choice I would do the same thing again.  Talked with Teva Pharmaceutical (the company that makes my MS injection) and since they have no data to confirm there will be no interaction with my MS injection and herceptin they do want me to cease taking any MS meds.  All 3 oncologists have agreed with this.  All have stated that the MS is more problematic and the major health issue.  They feel the breast cancer treatments will work but don't want me to become immobile with the MS.  I'm choosing to believe all this will work out.

    Blessings,

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited March 2012
    Nana3 thanks for keeping us updated.  Glad to hear you have done ok with the Herceptin thus far.  The MS really does complicate the issue.  I hope that you do not have significant complications with stopping your MS meds, but of course you don't have a choice given what your docs are recommending.  You are between a rock and a hard place, but I too feel things are going to work out for you!!! Smile
  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited March 2012

    I'm not sure if I've posted this before, but just re-read it and thought those who are considering herceptin monotherapy for adjuvant tx would want to see it:

    Is there a case for anti-HER2 therapy without chemotherapy in early breast cancer? 

     Summary
    Trastuzumab in combination with chemotherapy is now standard of care for patients with early HER2-positive cancers larger than 1 cm. Some patients however may not need or simply may not want chemotherapy with its associated toxicities. For example patients with small (≤1 cm,Tla,b) node-negative (NO) HER2-positive cancers were largely excluded from all the large randomized adjuvant trastuzumab trials on the basis of perceived excellent prognosis, yet recently several retrospective studies have suggested that this is not always the case and more active adjuvant treatment including anti-HER2 therapy may be warranted. Subset analysis of one trastuzumab trial (HERA) demonstrated that patients with 1-2 cm cancers derived at least as much clinical benefit from 1-year of adjuvant trastuzumab with chemotherapy as the overall cohort and 2 retrospective audits have confirmed this.

    Anti-HER2 therapy including both trastuzumab and lapatinib alone has established clinical efficacy in metastatic disease, with response rates of up to 35% and with some long term remissions. Combination anti-HER2 therapy with trastuzumab/lapatinib and with trastuzumab/pertuzumab have also been shown to have efficacy as second line treatment inpatients after trastuzumab. Trastuzumab and Lapatinib have each been shown to improve time to progression and response rate when given with anastrazole and letrozole respectively as first line treatment for metastatic ER-positive HER2-positive disease. In neoadjuvant trials the combination of trastuzumab and pertuzumab without chemotherapy have achieved pathological complete remission rates in a significant minority of patients, suggesting that a subgroup exists for whom anti-HER2 therapy alone may be as effective as with additional chemotherapy.

    Trials and prospective studies are now warranted to investigate this issue further in selected patients and these must be accompanied by tissue collection to try to identify predictive biomarkers. Meanwhile there is already enough circumstantial evidence to justify anti-HER2 therapy alone in selected patients for whom chemotherapy is contraindicated.

     

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