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Neoadjuvant TCHP - Post Results Here

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Comments

  • april25
    april25 Member Posts: 367

    My chemo ended at the end of April... and my hair is still pretty much fuzz... not worth coloring or showing off even... I'm still wearing a wig or scarves/hats and probably will for a good long while!!!

  • PMR53
    PMR53 Member Posts: 185

    April- you can ask about IHC test, if your curious. I didn't have complete response either, but I only did 4 TCHP .They found my 5cm tumor all broken up and a few cancer cells in my LX. Clean but close margins. I am having MX in October. I would rather do this then RX. I start hormone suppression also. Does anyone know if it affects hair growth?

    PMR53

  • minustwo
    minustwo Member Posts: 13,320

    PMR - I assume you'll continue Herceptin for a year due to your HER2+ status? That will cause the hair to grow slower. Sorry I don't know about the hormone therapy. Check out the thread on this site called "Hair,Hair,Hair".

  • CassieCat
    CassieCat Member Posts: 863

    My hair regrowth is definitely slow as I finish up Herceptin. I'm looking forward to finishing in August!

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241

    ben50 - As someone who had a strong, but not complete response to neoadjuvant, this made my day. Thank you! I hope your wife is doing well.

  • atlmom
    atlmom Member Posts: 7

    At diagnosis, I had one lymph node that tested postive for cancer. GREAT results from the TCHP!!! The pathology report from the surgery showed no living cancer cells in the tissue removed by the lumpectomy, and no living cancer cells in the sentinel lymph nodes. My oncologist said this is as good as it gets. Hooray for Herceptin and Perjeta. Chemo was the PITS but on the positive side, it feels so good when it's finally over.

    Next comes radiation, starting in two days.

  • atlmom
    atlmom Member Posts: 7

    At diagnosis, I had one lymph node that tested postive for cancer. GREAT results from the TCHP!!! The pathology report from the surgery showed no living cancer cells in the tissue removed by the lumpectomy, and no living cancer cells in the sentinel lymph nodes. My oncologist said this is as good as it gets. Hooray for Herceptin and Perjeta. Chemo was the PITS but on the positive side, it feels so good when it's finally over.

    Next comes radiation, starting in two days.

    (Tried re-posting to get the treatment signature right, but for some reason still doesn't show the Herceptin....)

  • april25
    april25 Member Posts: 367

    I just started rads yesterday... 35 treatments.

    atlmom -- congrats on the great results!

  • mye
    mye Member Posts: 52

    Hi,

    I had my 3rd of 6 TCHP infusion yesterday and the doctor changed the sequence of infusions. Before it was premeds, then Taxotere, Carbo, Herceptin, lastly Perjeta, since yesterday they are trying this new sequence of protocol starting with the monoclonal, targeted, therapies first. So I was given premeds, then Perjeta, Herceptin, Taxotere lastly Carbo. The nurse said this new protocol sequence is in a trial and that it is supposed to help the regular chemo be more effective. Anybody else heard about this or has been on this sequence? Thanks



  • loriekg
    loriekg Member Posts: 118

    Hi mye,

    I just had my last chemo last month (a month ago today) and that may have been the sequence I was on. I am certain I didn't have the taxotere first--I remember paying attention to that one since I'd get my ice from the freezer for the taxotere. Then there would be another infusion after. Interesting!

    --Lorie

  • atlmom
    atlmom Member Posts: 7

    april25 - Thanks!!!

  • kh04
    kh04 Member Posts: 6

    mye:

    I had my first tchp june 3rd.

    the order infusion nurse gave me is nausea meds, steroid, (all premeds), herceptin, perjeta, then the regular chemo regimen T and C(I cant quite remember T and C which one went first).

    I believed the order they gave me worked well cause my tumor shrinked a lot and the breast tissue felt so soft.

    Question: does it matters the order of the drugs to be given At Infusion? I thought as long they all goes in your body doesn't matter which one goes in first. I never thought about the order of them.

    I'm very thankful for this site that always brings me new info each day!

    I felt better each day now(sometimes a little mild diarrhea but it doesn't bother me that much), I think we all can do this and hope you all feel better each day!

  • SugarCakes
    SugarCakes Member Posts: 73

    I didn't pay attention every time, but I have written down for my second infusion: Emend, Benadryl, Perjeta, herceptin, taxotere, followed by carboplatin.

  • minustwo
    minustwo Member Posts: 13,320

    I did my 6 rounds TCHP chemo starting spring of 2013. I took steroids by mouth the day before, day of & day after. Infusion order was Herceptin, Perjeta, Kytril (for nausea), taxotere, carboplatin. After the first round I always had an extra liter of fluids too.

  • mye
    mye Member Posts: 52

    I will try to get some answers about the importance of the drug sequence from my oncologist. I have been trying to find studies/trials online but haven't come across anything yet. I will post if I do and thank you all for responding. I feel my lump has been softened a lot after 2 infusions with the previous sequence, but it's not entirely gone. However a breast surgeon I have recently visited couldn't locate it. (But I know my breast so well now and feel exactly where it is :).

  • atlmom
    atlmom Member Posts: 7

    APR25 - I saw you were being treated in Santa Monica. Funny coincidence - my father grew up in Santa Monica. I went to Pitzer College back in the 70s. I've lived in GA for the past 30 years but was originally from northern CA. Looking at your posts, it looks like we are on almost the same schedule. How was your pathological response to the chemo? How was your first radiation treatment? I start mine on Monday.

    "D" - I didn't have bad diarrhea except the first two weeks. My regular breakfast before chemo had been oatmeal and fruit. I cut out the oatmeal and went to lower-fiber alternatives like plain bagels. I also started eating yogurt almost every day, and bananas. Not sure if those things helped or if the D went away by itself. Mint tea seemed to help with nausea and stomach issues, also eating bland foods and eating six small meals instead of three big meals.

    WBC - My worst side effect was low white blood cell counts. I got neutropenia fever twice and was hospitalized twice, once for 2 days and once for 3 days. Initially i didn't get the Neulasta shot, but after the 1st round of chemo, around day 11, I got neutropenia fever. After that, I got the Neulasta shot each time. i took Claritin on the day of the shot and didn't have any problem with pain. In spite of the Neulasta shot, I got neutropenia again, after the 4th round of chemo. They reduced the Carboplatin for the last two rounds of chemo, and that seemed to solve the white blood cell issues.

    NAILS - Yes, they were disgusting. Three turned dark purple and I thought they were going to fall off, but they didn't. They are sort of separated from the nail bed at the top of the nail, but the new nail growth looks normal. It looks like the nails will be disgusting until the "chemo nail" section finally grows out.

  • atlmom
    atlmom Member Posts: 7

    Anyone who did not achieve pCR (pathological complete response) and has high ER+ along with HER+ might feel better after reading this article below:

    http://www.ascopost.com/issues/october-15,-2014/pathologic-complete-response-understanding-the-subtleties.aspx

    Basically, what I got out of it was that if you are ER+, you can have an incomplete response and still do fine in the long run. Herceptin-Perjeta is great at knocking back the HER+ cells. An incomplete response probably means that the HER+ cells were destroyed but not some of the others. If you have a lot of ER+, HER-negative cells mixed in with the HER+ cells, the HER-negative ones will not respond to Herceptin-Perjeta.

    On the other hand, the HER+ cells are the ones that are most important to get rid of, since HER+ cells are more aggressive and more likely to cause future problems. So even if you have a middling HER+ count, the Herceptin-Perjeta is doing you the favor of getting rid of the worst offenders.

    Bottom line seemed to be that if you are high ER+ and middling HER+, you might not achieve pCR but it may not matter since the pCR is not a good predictor of long-term outcome for ER+ cases.

  • april25
    april25 Member Posts: 367

    atlmom -- Thanks for the article! I did NOT achieve PCR. My 3cm tumor shrunk by a third and I did have live cancer cells found in it. My HER2+ was inconclusive at first from the biopsy, then POS in the FISH. When I got the post-surgical path, HER2 was back to being inconclusive again... but my MO thought it might be because I'd already gone through TCHP. My ER+ is around 90%. I was disappointed not to have a PCR, and confused a bit by the HER2 results... so the article helped me a lot! --Although I'd still like my doctors to explain it to me... So far they have not (very busy guys!).

    I started my rads on Thursday-- so I've only had 3 so far! They all say that nothing much happens until several weeks in, so I'm not expecting anything at this point... but I have to say that I got a lot of dried skin after the first treatment and started putting lotions on. They suggested Calendula cream and 99% Aloe Vera with no alcohol, 3x a day! I haven't quite got the 3x a day down yet, but probably will be doing that more as things progress. My treatment today was literally about 10 minutes! The first two treatments took longer... not sure why. I'm doing 35 treatments in total.

    My sister's place is in Santa Monica and I'm staying over at her house for all these treatments. I was born and raised in So. Cal. so I'm just used to being here--it's nice if you can stand the crowds and the traffic. Santa Monica is nice and cool, being by the ocean. And not humid. It's nice.

    I'm getting treated by a lot of doctors associated with UCLA and their Medical Ctr, also Cedars-Sinai which is in W. L.A.... and some St. John's Hospital guys. They're all mixed up out here since those are the main medical centers in this area.

    Nails-- good to know yours didn't fall off! Mine started separating at the tips of some of them, just now, a month or so out from chemo, and it is freaking me out! I thought I'd be OK because my nails didn't get dark... just got pale from the moon up to about half-way... But now they are doing that separating thing! gah. My pinkies are the worst. But one of my middle fingers and one of my index fingers is also doing it. I was wrapping them with band-aids for a while, but those kept falling off... Not sure what I should do to protect them... Maybe just wait until they grow out more, I guess. Maybe take some biotin? Hmmm...

  • mye
    mye Member Posts: 52

    April25,

    Just wanted to say that we are close location wise. I'm in Pasadena, but used to live and work in SM. I love it there and still go a lot :-) Cool that you get to stay at your sister's while doing the treatments. I'd like to find out from you which doctors you are working with. Please look for a PM from me..

  • april25
    april25 Member Posts: 367

    Sent you a reply, mye! Cool to hear from another in the area.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241

    THANK YOU altmom! I wondered if something like that happened with me. My biopsy pathology report indicated high ER and very high PR. My residual cancer tested the same high ER but very low PR. But I was still Her2+ although I'm not sure if I was less so - gotta dig out those reports.

    My onc was hopeful that the chemo-resistant ER cells were slower growing and would be successfully starved by hormone therapy.

  • april25
    april25 Member Posts: 367

    How common is it, I wonder to have the DX percentages of ER/PR/HER2 differ from the final path, with neoadjuvent chemo? So the chemo can affect things like that?

    I never got my percentages from my biopsy path... I only know something changed because my HER2+ was inconclusive in my path...! My MO said he thought it might have been the chemo that changed it, but he'd have to check to make absolutely sure. I haven't spoken to him since then, though...

    I hadn't heard anything about percentages changing due to chemo... but maybe it's because the whole neoadjuvent thing is still relatively new and many people are still going straight to surgery after DX...?

  • minustwo
    minustwo Member Posts: 13,320

    My HER2+ was inconclusive in my path too. The MO made them re test it & also do the FISH before we proceeded with neoadjuvent chemo. Those answers were what made him urge me to go ahead w/chemo right away instead of waiting until after an Alaska cruise that I'd planned. Wonder if I'll ever have another shot at the cruise?

  • SugarCakes
    SugarCakes Member Posts: 73

    MinusTwo, I missed an Alaskan Cruise due to my diagnosis as well. Friends just returned last weekend. They were celebrating their 10 year wedding anniversary and invited friends to join them. I was so excited. Then the diagnosis and treatment came. I cancelled my plans. I will do an Alaskan cruise some day, however, and soon.

  • debiann
    debiann Member Posts: 447

    I didn't miss anything as exciting as a cruise, but it was the first time in decades that Gun's n Roses (my favorite band) was playing close to my home. I was in the midst of chemo and feeling like crap so I didn't go. My kids went. My son phoned me (by surprise) so I could listen to one song and feel like I was there with them. I guess that may be a more special memory and actually getting to go to the show.

  • Alibeths
    Alibeths Member Posts: 167

    has anyone experienced servere eye issues with chemo?? Mine are so dry and blurry at times.

  • raleighgirl
    raleighgirl Member Posts: 56

    Alibeths,

    I had very watery and dry eyes that finally resolved a couple of weeks ago(about 4 weeks after the end of chemo).


  • SugarCakes
    SugarCakes Member Posts: 73

    alibeths, my eyes would get blurry at times and sometimes, they would stay that way for quite some time. I've had better than 20/20 vision my whole life. I read in bed and there were moments where I just could it focus on the print in a book or on my phone. Sometimes I also felt pressure on my eye lids and tear ducts. Then there were moments when my eyes would water a lot.

  • minustwo
    minustwo Member Posts: 13,320

    aligbeths - dry eye is quite common. I was surprised to learn that my watery eyes during chemo were really 'dry eye'. My ophthalmologist recommended Systane drops.

  • april25
    april25 Member Posts: 367

    MinusTwo and SugarCakes -- That's too bad you both missed taking an Alaska cruise! I haven't been on one of those, but people I've known who've gone all say it is fantastic. I hope you both can manage to do one later.

    debiann -- A missed GnR concert! geesh. Now I'm feeling like I live a boring life! I didn't miss out on anything (although for some reason I'd been clearing my schedule even before my DX... hmmm!).

    Alibeths -- Most people have teary eyes, but I had dry eyes, too. My MO sent me to an opthamologist saying that chemo can cause dry eyes, sometimes by blocking the tear ducts. I got my eyes checked out and there was no blockage, but it looked like the oil that is secreted along with tears was gumming up for some reason. He suggested using lubricating eye drops (he gave me a bunch of samples), and putting on warm compresses. I used the eye drops, but didn't do the warm towels... The problem resolved itself on it's own-- or at least my eyes don't feel as dry as they did when I was doing chemo. The eye doc said it was quite likely that it was the chemo and not a constant problem. Just had my eyes checked again and he said they looked OK. (I also have glaucoma and floaters and near-sightedness and presbyopia and Diabetes Type 2 that can cause eye problems... so no bad news is good news!).