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Taxol and Herceptin only for stage 1 HER 2 positive?

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Comments

  • codi10
    codi10 Member Posts: 15
    edited March 2014

    Hi, to EverForward -

    I, too, was a participant in the study as mentioned earlier, but I hope my experience can be helpful to you...I was 54 at time of diagnosis 7/09 & presented with 2 options from my oncologist at Mass General: the standard regimen of TCH or the ongoing clinical trial of TH. My husband asked my doctor which one he would choose for his own wife, given the same circumstances. My doctor replied he would be comfortable choosing either for his own wife. I then asked, if you had to pick one..he replied, I would give the TCH an A+ because its a well-proven regimen for your particular case & the results are well documented and I would give the TH clinical study an A- not because we don't believe that it is as effective as TCH  but on early stage BC it is not well-documented...I was grateful for his honesty - I chose the latter because I felt comfortable with the "A-" but with less toxity. I am truly grateful that it was a good decision for me (& Ann, too) ... it is hard to decide, but given honest info - you make the best decision you can. I hope this was helpful & the best to you in whatever decision you make ♥

  • Michelle14
    Michelle14 Member Posts: 29
    edited March 2014

    Hi Everforward,

    Oddly enough the reason I wound up with the taxol/herceptin regimen instead of the Adriamycin or TCH combo is because  I was very uncomfortable with the Adriamycin and TCH combos. I just had a very hard time wrapping my head around such harsh treatment for such an early stage cancer. From all the research I had read about HER 2 positive breast cancer. It was very clear that Herceptin is what started saving women with this disease yet the chemo regimens were still so harsh.  I just felt like someday we will be treating early stage 2 with antibody therapy only and was upset because we just aren't there yet.  I just watched one of my very best friends go through treatment for triple negative BC two years ago and her treatment for that is 4 rounds of TC. (She did GREAT by the way!). I asked my onco why only 4 rounds was given to Triple negative and Her 2 needed six? The response was exactly what I had suspected.  There was a study done on triple negative that found 4 treatments were no better than 6 treatments and therefore they don't subject those women to more "poison".  Why does Her 2 get six? They haven't done that study on Her 2. : (.  The sad truth. It just hadn't been tried yet.  My onco is awesome, listened to me rant a bit, answered all my questions and I left the meeting feeling sick about my choice but agreeing to the THC combo.  The next day, I got a call from him and he told me about the Taxol/herceptin only trial results that were just released 6weeks prior to this conversation. He told me to read about it and then get back to him if I was interested. We had a very frank discussion afterward and I felt a sense of relief that I had not had since this whole mess started. He conferred with his colleagues about my particular case, answered absolutely all of my questions and said he was very comfortable offering me the taxol/herceptin only.  I jumped at the chance and have not looked back. 98.7% of those women in that study are still cancer free! It just felt right. Soo grateful to have been offered! 

  • septembersong
    septembersong Member Posts: 153
    edited March 2014

    EverForward, 

    After I posted yesterday I realized that I should have added that the percentage of patients who experience permanent peripheral neuropathy post-Taxol is small. I don't know the exact figure, but it's certainly not the majority of patients. 

    Don't want to add one more worry to what is already a stressful process. 

    Ann

  • everforward
    everforward Member Posts: 57
    edited March 2014

    Thanks, Septembersong. I know each person is different, but it helps to hear what others have gone through and what factors were considered for their treatment. Looks like our diagnoses are similar, I'm happy to see that the Taxol/Herceptin combination has been successful for you. Congrats on being disease-free for so long and huge thanks for continuing to share your experience on the discussion boards.

  • septembersong
    septembersong Member Posts: 153
    edited March 2014

    Aw, thanks EverForward. 

    Cancer survivorship is a complicated thing, and it comes with a lot of conflicting emotions. I'll never forget the kindness shown to me by acquaintances and strangers while I was in treatment. My family and friends were wonderful, but a whole new dimension opened up to me while I was a patient. I try to do the same for others here on these threads.    

  • pattij
    pattij Member Posts: 10
    edited March 2014

    i was wrong, my treatment will be the THC and Herceptin, not Taxol... 6 treatments, then the Herceptin only for the year.... went to 2nd opinion hematologist/oncologist and he was much more thorough then the first guy and explained everything pretty well, he offered me the TCH with Herceptin treatment and the Adtriamel with Herception, i picked the TCH because it is a little less offensive ...

     i just read that resistance to Herceptin is a pretty big issue... almost 70% of people treated will eventually stop responding or not respond at all..im glad i am getting the TCH and herceptin instead of just taxol and herceptin now... i guess... i dont know just want all this overwith ... and i have not even really started yet

    i dont think i can do this i really dont, double mast april 8 chemo starts 2 weeks later getting implants so i will have to see the plastic surgeon once a week and the onco once a week and then go somewhere else once a week for the neuoplast shot  i dont know i f'ing hate this had a big melt down today... thank god for xanax...

  • DeeC
    DeeC Member Posts: 67
    edited March 2014

    Hi everyone:

    I had my first TH treatment yesterday.

     I live near a Dana Farber clinic attached to my local hospital so my ob/gyn sent me there after my diagnosis.  I was supposed to be in the new study for TDM-1 but there wasn't enough tumor in the biopsy to retest HER2+ for the study.

    Because my tumor was so small (0.5 cm) the TH regime was recommended to me.  I read all I could about the study and HER2 (I am a retired librarian, we know how to research ourselves into overload!)  I trust the docs at DF so I made the decision to go for it.

    I see some mention hair loss.  My doc said I should not lose hair but my nurse said it would probably thin.  Don't know what to expect.

    Wishing us all good luck as we move forward.

    Dee

  • everforward
    everforward Member Posts: 57
    edited March 2014

    Pattij, give yourself some time to get used to the idea. It's so overwhelming at first, even after a couple months it can still be overwhelming. But try to believe that at some point the number of bad days will decrease and the number of so-so days will increase, and then you'll start to have good days, too. That's what I've been telling myself when I feel like I won't be able to make it through a year of treatment.

    My first oncologist recommended TCH with Herceptin for me rather than Taxol and Herceptin. I'm getting a second opinion this week. I'm curious what she'll recommend.

  • Marren
    Marren Member Posts: 5
    edited April 2014

    hello,

    I had my 4th out of 6 tch+p I have the every 3weeks for 6hrs treatment. I will have surgery sometime in June . I had two opinions and both suggested this plan. They said because I'm 38 and her2+ they treat it aggressively. I'm not certain what stage I am, they  hesitate to say because they are not sure of lymph involvement. The MRI had showed my tumor 1.9cm, but my bs had felt it right after the biopsy and it had def swelled. She said it felt like 3cm almost. 

    My tumor by the third round couldn't be felt by the bs or my onc. I asked after the first if I could stop after 4 if it did shrink that fast. He kinda laughed and shrugged. I will still continue with herceptin for a full year. 

    I have had a hard time with every round. Lots of nausea, dizziness, numbness in fingers and toes, and tongue( take l-glutamine and that does help) digestive issues, intense fatigue. And it usually lasts for almost 2 weeks for me, the last week before they hit me again is ok. Now I don't want to freak others out, because I seem to be in the minority w the nausea and se lasting so long. My friend is doing the tch and she just has a few hard days. But nothing too bad. 

    Anyhow reading your posts makes me think maybe I should push to see if I can stop early? What do you guys think? I also am struggling over lump vs mast. I see some of you had lumps and then had reoccurrence and had to get mastectomy after. I'm scared of that for sure. Hopefully my chemo brain ramblings made sense. I'm glad to hear some of you had the option for a lighter yet effective treatment, that sounds promising. I hope your all feeling well. Thanks

  • kelall1
    kelall1 Member Posts: 1
    edited April 2014

    I totally agree.  I am also struggling with that.  Triple Positive but 0.2 cm.  Oncologist discussion was Chemo is up to you.  Going into this I have been so scared and reluctant of chemo.  So my initial choice was no chemo.  I have had lumpectomy with no node involvement and will begin radiation.   After doing some reading, I am seeing the benefits of Herceptin in Her 2 positive situations.  Next visit will be a discussion on administration of Herceptin without chemo. I have read some on her are receiving it in that manner.  These discussion boards are WONDERFUL knowledge and kindred spirits

  • Pbrain
    Pbrain Member Posts: 773
    edited April 2014

    I did and I saw the results of the study which was presented at the San Antonio Breast Cancer Symposium last December.  My diagnosis is almost identical to yours, but I am triple positive.  1.3 cm tumor, IDC, lumpectomy, external rads.  My MO initially put me on TCH, but I ended up in the hospital with neutropenic fever and dehydration.  I did fine on the taxol :-)

    Not great, but fine.  I was pretty weak from the TCH which knocked me on my butt.  September, how do they define "permanent" peripheral neuropathy?  I'm one year and 1 month out from my final taxol and I have neuropathy in my feet.  It waxes and wanes, but can be pretty bad. How long before they think you are not salvageable?  Arghh!

  • Pbrain
    Pbrain Member Posts: 773
    edited April 2014

    Michelle, I work for the company that makes Herceptin, Perjeta and Kadcyla.  I honestly think the work on the antibody therapy alone is not being done in the US because of the risk to patients.  I don't know if an institutional review board would approve it.  However, since my company is so big, I don't know if the studies are going on in the EU or ROW.  I agree, the day will come when so many Her2+ women can be treated with those agents alone.

  • septembersong
    septembersong Member Posts: 153
    edited April 2014

    Pbrain, 

    My general impression is that after two years, it's unlikely to reverse. It's been a struggle for me to get good information and effective treatment for this. Cancer Care has good educational resources dealing with CIPN, and some people get relief from drugs, especially if pain is involved. 

    I'm seeing a PT and a physiatrist (I also have arthritic knees) to help with walking and stamina. I wish I could offer better information, but I think the cancer community is just beginning to come to grips with this issue. I'm hopeful this will improve as more survivors present with these life-altering issues. 

    Anyway, good luck, and I hope your neuropathy resolves!

    Ann 

  • Ukkate
    Ukkate Member Posts: 13
    edited April 2014

    I was supposed to get 4 treatments of TCH and then Herceptin for a year but I responded so badly to the TC that after two treatments my Onco switched me to 6 weeks of Taxol/Herceptin (weekly) and then obviously finishing up the year with Herceptin.  I was nervous about not doing all 4 TCH treatments but he mentioned that study to me also and felt like we had been super thorough with what we had done and it wasn't worth the misery for me for "just incase"

    I have one more herceptin to go and I'm done!  I was also 42 at age of diagnoses with stage 1.  I had two tumors though (1.5 cm) and a huge area of DCIS so I had a full mastectomy on my left breast.  No lymph node involvement.  And no lingering side effects (other than the Herceptin runny nose, achy bones and muscles)

  • Pbrain
    Pbrain Member Posts: 773
    edited April 2014

    UKkate, it never ceases to amaze me how so many women do just fine on TCH.  I was almost on my death bed with one round of that crap, yet my boss did 6 and barely had any symptoms.  It must have to do with how well we metabolize because I smelled like a chemical factory for 2 weeks.  It was way too much for me.

    Ann, thank you for the info on Cancer Care.  I watched their podcast last night on neuropathy and it was very helpful.  I mostly have burning and am kind of klutzy, but I'm taking lots of B vitamins and doing sublingual B12 (for better absorption).  We'll see.  Maybe I need those ugly orthopedic shoes...

  • septembersong
    septembersong Member Posts: 153
    edited April 2014

    Pbrain, 

    I know quite a bit about ugly orthopedic shoes. And to add insult to injury, they cost a bomb. The only sandals I can wear now are Finn Comfort. I ordered two pair on line yesterday and my bank called to report possible fraud on my credit card. I'm sorry it wasn't two tickets to Paris. 

    Both oncologists I consulted said that TCH would make me feel like I'd been hit by a truck, so I don't think you're in the minority. Aren't you glad it's over?

    I hope the B12 and the sublingual work for you. Let us know if they do!

    Ann

  • Pbrain
    Pbrain Member Posts: 773
    edited April 2014

    Ann, years ago my Dad was diagnosed with a megaloblastic anemia caused by low B12.  My Mom called me up and asked why it would be so low since he was taking B vitamins every day.  I told her that B12 needs a protein in the stomach to protect it while it is in that acidic environment and as we get older, the production of the protein decreases and our absorption gets poor.  I suggested she get sublingual B12 at the drug store.  That way the vitamin bypasses the stomach, but is small enough to get absorbed into the blood stream.  Well, she did and they were delicious.  My Dad, being a diabetic and not allowed to have candy...well you get it.  His doctor tested him a year later and told him he had the highest B12 he'd ever seen!  Tee hee!

    And hysterical about the credit card company.  I know there are a lot of wizened old ladies who are into identity theft for their orthopedic shoes!!!

  • Jazzingersey
    Jazzingersey Member Posts: 2
    edited April 2014

    Pattij... I'm new to this website, this forum and to breast cancer.  You had stage 0 and had a mastectomy and chemo - so was this a recurrence ?  I have a similar diagnosis except I am ER and PR negative but had Grade 3 necrotic, comedo type cells with the HER2 positive.   I went to several specialists and all told me not to have a mastectomy.   I am so scared of this coming back, as I'm sure everyone is.  I dont' have a full understanding of this HER2 even though I've asked all the specialists & their reply was the clinical trial with Herceptin which I refused, one suggested Tamoxifen (thought I'm not ER positive but "just in case it recurs AS ER+ he thought it was something to put on the table !)

    Jazzing.

  • DeeC
    DeeC Member Posts: 67
    edited April 2014

    Hi all,

    Had Taxol/Herceptin #4 Thursday and Saturday my hair started coming out.  A few days of sadness about this and ready to move on.  My hair is already pixie cut short so I think I will let it do it's thing and not buzz it off.  

    Will probably get a wig if it all goes.  What did you all do?

    Dee

  • Marren
    Marren Member Posts: 5
    edited April 2014

    dee- I started losing my hair about 3-4 weeks into tch+p. I had shoulder length hair and then cut it into Pixie. I sent it off to hip hats w hair. I like the halo wigs as they are more comfortable. But I'm getting sick of wearing hats. Had my fifth treatment only one more to go, I can't wait! 

    Jazzing-what treatment have you had? Herceptin by all accounts is an amazing drug for treating her2+.  

  • DeeC
    DeeC Member Posts: 67
    edited April 2014

    Taxol/Herceptin low dose #5 Thursday.  Seven more to go.

    Feel good today because of Decradon. This time nurse gave it to me in pill form instead of infusion.  Maybe they will let me cut back on it as I haven't had an allergic reaction.  Sure wrecks my sleep.

    I get tired, weak and shaky for a few days after it wears off. Then just in time for my next infusion I start to feel good  Not fair! 

    I bought a wig today, didn't want to wait until last minute.  This way I could match my hair color while I still had it. Clogged the drain today.

    Best to you all,

    Dee

  • pattij
    pattij Member Posts: 10
    edited April 2014

    Pattij... I'm new to this website, this forum and to breast
    cancer. You had stage 0 and had a mastectomy and chemo - so was this a
    recurrence ?

    Jazzering...i have no idea... i had stage 0 dcis 5 years ago, no chemo, no rads, er+ and pr+ tamoxifen for 5 years... then this past Janaury they found a spot in another quadrant, same breast, biopsy showed invasive and er- pr- her2+ k67 score 87%... completely different, so i would say no it was not a recurrence, it was another cancer... they could not get clear margin from lumpectomy and there was evidence of multi-focal tumors so i opted for the bilateral mastectomy, pathology from the mastectomy showed the right breast normal, left showed no break thru or lymph involvement just some dcis beyond the lumpectomy tumor margin and the rest of the tissue normal... i did the double mastectomy because i do not want to have to get mammograms every few months for the rest of my life and i do not want to go thru this ever again ... and i wanted them to match ... ha ha

  • lesliecusana
    lesliecusana Member Posts: 36
    edited May 2014

    Hey I'm new here and I'm a tiny t1a who was offered weekly taxol 12 wks and herceptin! Had 1st treatment and all went well execept I'm wondering about my dosing! I'm only getting 6mg of Taxol! Wondered if anyone else has gone so low? And what is the low taxol dose usually given for small t1a's who choose chemo? Thanks!

  • DeeC
    DeeC Member Posts: 67
    edited May 2014

    Lesliecusan,

    My diagnosis is similar to yours.  I am told I am getting low dose Taxol but I never checked for the amount.  I will ask at next treatment.

    I have not had radiation, am told it will be last after 9 months of Herceptin alone.

    I finished #5 and had to skip a week because I got sick with fever.  On antibiotics.

    Dee

  • lesliecusana
    lesliecusana Member Posts: 36
    edited May 2014

    My Idc is only 1.1mm so I know they may not give same as 5mm or more Idc which I think is 80mg but 6mg seems aweful low! Just want to make it worth my wild! 

  • Michelle14
    Michelle14 Member Posts: 29
    edited May 2014

    Hi Ladies,

    Just checking back in. I have done 8 of my 12 weekly taxol/herceptin treatments now. My 9th is tomorrow.  I did really start to shed hair A LOT after my 4th treatment and finally wound up shaving it off after my 5th. Mostly because I was afraid I was going to just touch my hair and have a clump fall out. Every shower just became so stressful with sooo much hair loss. (Ironically, I still haven't lost all of my hair and it is starting to grow back already!) I did buy a couple of really cute wigs and always wear them out and to work. Most people can't even tell they are wigs. : ) Makes it nice not to have to look sick because I actually feel pretty good. 

    The side effects from the Taxol for me have been hair loss, a dried out nose and frequent, although very mild bloody nose episodes, some mild fatigue that has not prevented me from working or working out, and intermittent peripheral neuropathy but that too has been very mild and always goes away between treatments. I can say it is actually quite tolerable and most people are amazed that I am getting chemo and still doing everything I have done before. 

    My oncologist is amazed as well. I  the first of HIS patients to get the taxol/herceptin only. He even says "I keep double checking your dose to make sure you are getting the right amount!" (It is being dosed correctly! ) Lol. The whole group there is watching me closely to monitor side effects ect... They are quite pleased with how well it is being tolerated. 

    I hope the rest of you ladies are doing well! Wishing all of you strength and a speedy progression through treatment and then a lifetime of health and happiness! : ) 

    Michelle 

  • septembersong
    septembersong Member Posts: 153
    edited May 2014

    Michelle, 

    Thanks for checking in. It's great to hear you're doing so well! Sending good and healthy thoughts. Before you know it this will be behind you and you'll be back to your happy, active life. All the best. 

  • codi10
    codi10 Member Posts: 15
    edited May 2014

    Hi, Michelle -

    Thanks for sharing your update...I had the same reaction to the Taxol; as before mentioned, the hair held on for the first 4 treatments, then was coming out in clumps...I, too, was afraid to even brush my shoulder-length hair. I then resorted to the wigs. But that soon passed and like you, I didn't lose it all...& it started growing back before I finished my last (12th) treatment. Subsequently, I had nosebleeds during the treatment, but they stopped after the Taxol treatment, too. As I mentioned in an earlier post, I was one of the 406 participants in the study you referenced: it will be 5 yrs. in July for me & there are others from the study who are 6+ years out! You are really over the worst of it...and you are doing very well...the herceptin each week to finish out the year will be easy & well-tolerated by you. It is a personal journey but one that will soon be behind you...my prayers for you, Michelle.

    Oh, I also had some mild neuropathy for awhile afterwards, but yoga & walking did the trick!

  • codi10
    codi10 Member Posts: 15
    edited May 2014

    Hi, Michelle -

    Thanks for sharing your update...I had the same reaction to the Taxol; as before mentioned, the hair held on for the first 4 treatments, then was coming out in clumps...I, too, was afraid to even brush my shoulder-length hair. I then resorted to the wigs. But that soon passed and like you, I didn't lose it all...& it started growing back before I finished my last (12th) treatment. Subsequently, I had nosebleeds during the treatment, but they stopped after the Taxol treatment, too. As I mentioned in an earlier post, I was one of the 406 participants in the study you referenced: it will be 5 yrs. in July for me & there are others from the study who are 6+ years out! You are really over the worst of it...and you are doing very well...the herceptin each week to finish out the year will be easy & well-tolerated by you. It is a personal journey but one that will soon be behind you...my prayers for you, Michelle.

    Oh, I also had some mild neuropathy for awhile afterwards, but yoga & walking did the trick!

  • codi10
    codi10 Member Posts: 15
    edited May 2014

    Sorry, my reply got posted twice ;-)

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