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Taxol and Herceptin only for stage 1 HER 2 positive?

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Comments

  • Ozoner
    Ozoner Member Posts: 126
    edited August 2016

    Two more herceptin infusions. So excited!!!!!

  • WarriorCheryl
    WarriorCheryl Member Posts: 8
    edited March 2016

    I had the same diagnosis and just finished 12 weeks of taxol and herceptin three weeks ago, and just had my first herceptin only treatment yesterday. This will continue once every three weeks through December. It was less toxic than other regimens and I did quite well. I am now about to meet with the radiologist to get markers and set up a schedule. I'm not keen on the radiation, but am told that it ilessens reoccurrence by an additional 20%.

    The worst side affect has been fatigue, and sometimes body aches. I have not lost all of my hair, but it is still thinning. Exercise, like long brisk walks have been helpful, and a healthy diet of vegetables and protein.

  • Deaconlady
    Deaconlady Member Posts: 86
    edited March 2016

    Warrior Cheryl, we have very similar diagnoses. Almost identical treatment as well. I have #7 taxol Thursday and haven't lost my hair. Hope you continue to do well.

  • MsBrompton
    MsBrompton Member Posts: 324
    edited April 2016

    I just found this forum after hanging out in other (friendly) forums for the past 9 months. I'm from the UK and got Taxol + Herceptin (August -> October 2015); I have been on 3-weekly injections of Herceptin since then.

    To those still on Taxol, life gets a lot better about a month after stopping it. And I'm encouraged by the postings from those who have finished Herceptin, who assure us that life again gets a whole lot better when that finsishes too!

    I didn't get any bad side effects or infections when on Taxol/Herceptin but a month ago I got terrible septicaemia even though my white cell count was normal (about 4). Yet it had been as low as 0.9 when I was on chemo. I think I got sick because I've been thinking I'm "back to normal" so doing life at 110% pace (work, sport, the usual stuff). Whereas when I was on weekly taxol my life was on hold.

    I'm fine now but wondered if anyone else had had this kind of setback when on Herceptin?

  • colleen1013
    colleen1013 Member Posts: 50
    edited April 2016

    Hi, All:

    Life seems to go back to normal, I am taking tamoxifen and all SE are manageable so far. I do have a question, periodically my energy will just drain out, sometimes I can only be functional for a couple hours and collapse after that. I would like to know how long does it take to regain the normal energy level after the chemo/radiation/herceptin ordeal?

    Thanks

    Colleen

  • TTfan
    TTfan Member Posts: 162
    edited April 2016

    Colleen, everyone is different, and whether or which hormone blocking meds we are takingmakes a difference too. I am 4 months from my last Herceptin and have most of my energy back, I took a 2 month break from Arimidex and felt fabulous, so I know at least for me, fatigue issues are no longer from Herceptin.

  • colleen1013
    colleen1013 Member Posts: 50
    edited April 2016

    Thanks, TTan.

    I am glad to know that you are doing fine also. I am almost two months from my last herceptin. The knee pain is mostly gone, Energy level stays the same just some times fatigue will set in. Hope that I will get some improvement next couple months

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Hi Ladies,

    I am new to this trend. I just finished 3rd weekly taxol yesterday and 1 Herceptin. So far feeling good. I was able to exersise and run about 3-4 miles every day. Not fast run but still! I hope it is not going to get worst.

    Any of you used cold caps? I am doing cold caps and was wondering if anyone has similar experience, when to expect shedding?


  • DaniellaD
    DaniellaD Member Posts: 228
    edited May 2016

    I usd cold caps with taxol herceptin regimen. I kept 95% of my hair. I use penguin cold caps and followed the protocol to the letter.

    I just went to another oncologist for a second opinion on estrogen reduction medication as I cannot tolerate tamoxifen. Anyway, this doctor is local suburban doctor with excellent experience and credentials. However, she and her colleagues questioned my treatment saying this isnt the standard of care. I was treated at sloan, and I believe that this regimen is the new standard of care. This doctor was telling me I should have had act. Now, I can't un-ring the bell- I was treated almost 1 year ago. Wtf! Anyone else have similar story? I'm just upset and now questioning everything

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Hi Daniella, I am also at Sloan, I don't understand what are you questioning? What should be done?
    My friend had kind of similar cancer and was treated at Hackensak Hospital and was given AC first and then Taxol and herceptin. She is saying she think she was overtreated. As for Sloan I think they the best in this field and I wouldn't question what they doing. I know many people from other cities come to Sloan to be treated.Who was your MO? Where in NJ are you? I am in North NJ.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited May 2016

    I had weekly taxol with herceptin in early 2011. I interviewed four oncologists. The first one wanted to do AC with taxotere and something else. The other three thought that was way overkill. Two of them suggested the taxol/herceptin protocol. At that time, people with early stage, that treatment was off label for use. The onc I settled on had worked for the NCI and said that it was being used successfully in Europe a lot. So, I did a little research on my own and decided to trust him.

    The thought was that the most important thing was the herceptin and it worked best when mixed with a little chemo. In the last few years, it has become more and more used, and I believe now it is the standard recommendation for early stage treatment in terms of effectiveness.

    That being said, there are lots of things the oncologists look at to develop their protocol. In my case, I decided to do a mastectomy because that meant that I could bypass radiation unless it showed up in my lymph nodes, which it didn't. And, in 2011, it was surgery first then chemo. Now they are recommending the reverse so that they can see how the tumor responds to chemo. It is constantly changing.

    I am glad I was able to just do the weekly chemo. I think it was much easier on my system.







  • MsBrompton
    MsBrompton Member Posts: 324
    edited May 2016

    Daniella

    You had the right treatment. I had exactly the same and it's what's recommended internationally. USA tends to overtreat people!


  • DaniellaD
    DaniellaD Member Posts: 228
    edited May 2016

    I was treated at Sloan in North Jersey by Dr Latif. She was a newbie and I didn't trust her but I trust that she was just following the Sloan protocol. It's not like she was choosing something without Sloan approving of the treatment, right? She's no longer at Sloan. I know ever doctor's opinion will be different but being 2 years almost from my diagnosis and hearing all this different information is making me a wreck. I read all the studies before choosing this regimen and didn't want to be over treated. This doctor seems to think there was evidence that it hit the bloodstream and was a high grade, so I should have been blown out with ACT. I'm going back to sloan soon with a new doctor who will probably have yet another opinion. Thank you all

  • BarredOwl
    BarredOwl Member Posts: 261
    edited May 2016

    DaniellaD:

    In my layperson's understanding, "standard of care" may include a variety of suitable options, including some suitable in certain patient subsets or situations. In general, for any given patient, there may be more than one reasonable choice. In this area, risk profile and risk/benefit vis-a-vis cardiotoxicity appear to be some of considerations in selection of an appropriate regimen.

    2016 consensus treatment guidelines from ASCO and NCCN and a 2015 guideline from ESMO all include the option of paclitaxel plus trastuzumab in the appropriate case. For example, NCCN guidelines (Version 2.2016) comment:

    "Paclitaxel + trastuzumab may be considered for patients with low-risk stage l, HER2-positive disease, particularly those not eligible for other standard adjuvant regimens due to comorbidities."

    "The NCCN Panel has included paclitaxel and trastuzumab as an option for patients with low-risk, HER2-positive, stage 1 tumors. This is based on a trial that studied this combination in 406 patients with small, node-negative, HER2-positive tumors. The results showed that the 3-year rate of DFS was 98.7% (95% CI, 97.6–99.8) and the risk of serious toxic effects with this regimen was low (incidence of heart failure reported was 0.5%)."

    The study cited in the NCCN guidelines is Tolaney et al., a study in the setting of HER2-positive, node negative disease. Table 1 of the paper includes information regarding tumor size of study subjects. Patients with T1c size tumors constituted the largest sub-group with 169 patients (41.6 %) in the study.

    Tolaney et al., 2015: http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion

    Best,

    BarredOwl

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Daniella, I am at Sloan at the city and my DR. was highly recommended to me by two different friend's cousins who are in the same field they told me he is a Super star of Oncology. He is not new to it and very knowledgeable. I have the same treatment as you had. He also offered me to participate in Clinical trial faze 2 for TDM -1 instead. But I decided against it after I did a lot of research.

    So I am sure you did the right thing. If you need of my Dr. name feel free contact me in Private i can recommend him.


  • colleen1013
    colleen1013 Member Posts: 50
    edited May 2016

    Hi, Daniella:

    I am treated at UC Davis, my oncologist recommended CTH, but I decided to use TH recommended by my Sloan oncologist. ( I have my surgery done at Sloan). My UC Davis oncologist agreed and told me that it is becoming the standard protocol now. I have done a lot research and won't regret my choice, in fact I am not thinking too much about my diagnosis, I quit my job as an senior engineer and become a zoo docent. I enjoy spending my time with my kids and zoo animals.

    I am doing fine with Tamoxifen, suffered some minor SEs, join pain, mood swing etc

  • Eleanora23
    Eleanora23 Member Posts: 39
    edited June 2016

    Hello All, I am starting taxol/ herceptin regimen on June 1st. I am looking for advice on dosages of supplements to take to help prevent peripheral neuropathy. Specifically - I have ordered L-glutamine and have been taking the B6, and will order L'carnitine. The MO and nursing staff have had no advice to give me; in fact I brought up side effects including that I had read about peripheral neuropathy in our last meeting. There hasn't been any kind of "chemo class" or teaching yet, they say that will happen on the day of my first infusion. I personally think it is rather insensitive to make somewhat wait until the first day,but at this point I cannot change that and need to just move forward and get this show on the road.

    Thanks in advance for any advice / help in this regard. Ellie

  • MsBrompton
    MsBrompton Member Posts: 324
    edited June 2016

    Hi Ellie. I took glutamine and B6 plus a general multivitamin with B12. I also tried to eat a normal healthy diet (fish, salads, that kind of thing) even when I lost my sense of taste. I didn't get any neuropathy. Most people don't actually, on the taxol/herceptin combo.

  • Eleanora23
    Eleanora23 Member Posts: 39
    edited June 2016

    Thanks for your reply MsBrompton!

  • MLMSC
    MLMSC Member Posts: 31
    edited August 2016

    I am so happy to find this thread. I am new so I don't know all the abbreviations or how to get the info in a signature line.

    Anyway - I was diagnosed with IDC July 5, 2016, lumpectomy and node removal on July 19,2016. ER/PR+ stage 1, small tumor ( .9cm) , margins clear, 3 nodes removed - all clear, and am HER2 + , I am 60.

    Doctor recommends this same 12 week treatment. Taxol with Herceptin, then Herceptin every three weeks for a total of 52 weeks. After chemo, radiation for 5-6 weeks and then anti-estrogen pill (likely tomoxifen?)for 5-10 years.

    We are going on a pre cancer scheduled trip next week so I will have a port put in August 23, and start the chemotherapy August 30 . I will have a chemo class August 22.

    I am happy to read the success many of you have had with this treatment. I think I was more concerned about the treatments, than I am about the recurrence of cancer. Fear of the unknown side effects can make you crazy! I will go back and re-read every post. Have to admit I only read the ones that were more recent since the earlier posts from 2014 spoke about the "new" protocol.

    This thread has been the most promising and positive info I have learned since the diagnosis. Thank you all!

    M

  • MsBrompton
    MsBrompton Member Posts: 324
    edited August 2016

    MLMSC that's just what I had (except I chose mastectomy instead of radio) and I did fine, just finished herceptin now. It will be a long year but you will be FINE. And don't worry about the abbreviations, I still don't get half of them...

  • TTfan
    TTfan Member Posts: 162
    edited August 2016

    Hi MLMSC - I also had Taxol/Herceptin, lumpectomy, radiation and now tamoxifen and tolerated it all well. I'm now almost two years from Dx and almost one year from finishing Herceptin. It does go by pretty fast! You may be so relieved to have a plan that you don't want more options, but I did want you to know that you are very likely eligible for the ATEMPT trial. It has two arms - one is standard Taxol/Herceptin as you are planning and the other is a targeted therapy called TDM-1, which is Herceptin linked with a chemotherapy drug. They appear to have very similar effectiveness and the TDM-1 usually comes with fewer side effects - no hair loss for example. There is a thread here with much more information if you are interested - just put ATEMPT into the search engine. I don't know if your oncologist participates or knows a local site that does, but if this is of any interest, you may want to ask him/her. Have a wonderful vacation and best of luck with your treatment!

  • My3rosebuds
    My3rosebuds Member Posts: 7
    edited August 2016

    Hi, can you share more of your experiences and advice? I just started chemo and herceptin treatment on 8/8/16and we seem to have a similar situation. Thank you so much!


  • My3rosebuds
    My3rosebuds Member Posts: 7
    edited August 2016

    Yes, I just started this treatment last week on 8/8/16. Curious of others' experiences and any advice

  • MsBrompton
    MsBrompton Member Posts: 324
    edited August 2016

    Here's the scientific paper: nobody dies from breast cancer (2 old people die of things unrelated to breast cancer!)

    http://www.nejm.org/doi/full/10.1056/nejmoa1406281#t=article

  • sandikr
    sandikr Member Posts: 3
    edited August 2016

    Hello, I just found this group and am so happy to see you. I was diagnosed 5/20/26 with Stage 1, grade 1, 5mm tumor. Lumpectomy on 6/28/16 showed clear margins and lymph nodes. Originally told I would probably only need radiation. But HER2+ changed all that. Oncologist recommended taxol, herceptin combo for 12 weeks, herceptin every 3 weeks for a year and 3 weeks radiation. I waffled about doing this but ended up agreeing. Started taxol/herceptin on 8/4/16. Just finished 3rd infusion. Had bone scan and CT scan prior to start. Told everything was clear. Now I am being told I need scans again after 6 weeks of treatment. Told it's to see if treatment is working. But if I'm cancer free - what is going on???? I am almost 70 and would not have even started chemo if told I had other issues. Has anyone else had scans along with treatment? I admit I have not read every post on this topic and apologize if it has been discussed previously. Thanks for any input.

  • PatinMN
    PatinMN Member Posts: 784
    edited August 2016

    sandikr, they probably want to do a mugascan, to make sure your heart hasn't been adversely affected by the herceptin. Many, if not all, persons getting herceptin have either a mugascan or an echocardiogram at the beginning of treatment and then every 3 months to check on the heart. Herceptin can cause heart failure in rare cases. (My oncologist always said "reversible" heart failure.).

  • MsBrompton
    MsBrompton Member Posts: 324
    edited August 2016

    Sandikr I'd agree to heart scans but not any other scans. I had a heart scan every 3 months all through, all were fine but it's a precaution. You will do FINE.

  • wabals
    wabals Member Posts: 192
    edited August 2016

    MSMC

    I just finished the ATEMPT trial. Look into it😄

  • cfashiongirl
    cfashiongirl Member Posts: 3
    edited August 2016

    what is the atempt trial? I have the same triple positive

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