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Neoadjuvant TCHP - Post Results Here

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Comments

  • FightingTheFight
    FightingTheFight Member Posts: 21

    I just did round 5 of TCHP yesterday and the terrible SE's skyrocketed after round 4 (extreme thirst, fatigue/muscle weakness, trouble swallowing, constipation and bloody stools, etc.), so I'm praying things won't be as bad this round. I just want to get the last treatment over with. Chemo has been the most grueling thing I've had to go through. Even though I know my journey won't be done after chemo, it's the biggest milestone I want to see in the rearview mirror.

  • CassieCat
    CassieCat Member Posts: 863

    FightingTheFight, I remember round 4 and 5 being my worse, but oddly, round 6 was relatively easy. I hope things will not get worse for you. Chemo was definitely the hardest part of the journey for me, too, but you get through it.

  • misslil
    misslil Member Posts: 229

    I completed my last treatment of neoadjuvant TCHP on the 15th. Was curious how anyone else's doctor had evaluated their results. My MO did a manual exam just before that last treatment and said he 'could not feel much.' I asked if he planned to do any type of scan at the end of the protocol which he had mentioned previously. He was vague but said probably an ultrasound after my follow-up appointment in early January.

  • BeachBabyK
    BeachBabyK Member Posts: 148

    I had my final TCHP on the 14th.Since then I have had a manual exam, MRI, and ultrasound...Complete pathological response! Manual exams are always suspect with me as my MO even agrees that I have such lumpy breasts that he couldn't know for sure. I hope the same for you Misslil! Now to get over the nagging symptoms from the last treatment and we'll be as good as gold!


  • Countrygirl80
    Countrygirl80 Member Posts: 7

    My surgical oncologist did a mammogram and ultrasound after the 5th chemo. The mass that showed up was about half the size of the original tumor...but wasn't palpable. At the time my SO said there was a 50/50 chance it was scar tissue. The only way to know for sure would be to wait for the post-surgery pathology. Thankfully, the only thing left wasscar tissue. Grateful for answered prayers and modern medicine...I hope your results are the same.

  • HappyHammer
    HappyHammer Member Posts: 985

    Dear Fighting...so sorry you are going through this but have to say glad to find a soul sister on the swallowing issues...thought at first they were due to anxiety but have continued off and on since last infusion of Herceptin last May...better but not completely resolved...know it is not "in my head" and want to let you know you are not alone!

  • misslil
    misslil Member Posts: 229

    BeachbabyK, Countrygirl - congratulations on your good results!

    At one point I had a palpable bump, which can't be felt anymore. Whether anything else more subtle is still in there, can't tell so I will be happy to get a report from a scan. The area is tricky to feel anything subtle as it's under the scar line from my prior mastectomy.

    Either way I expect it to be operable but emotionally it would feel better to have a strong result after going thru all the neoadjuvant protocol and SEs the past several months. Especially as I have read a full result is a bit less likely with ER+/PR-

  • CassieCat
    CassieCat Member Posts: 863

    misslil, my onc likes scans, so I had a PET scan after chemo, before surgery. I also had an ultrasound about halfway through chemo. All 3 of my tumors were gone by the halfway-point ultrasound, including two that had been palpable. Surgery confirmed a complete response to chemo, and another PET scan last summer showed no hot spots.

  • FightingTheFight
    FightingTheFight Member Posts: 21

    CassieCat - Thank you for the encouragement. Still dealing with fatigue and muscle weakness, but so far my SEs have not been as bad after tx 5, as they were after tx 4. Hopefully, number 6 won't be bad and I can quickly put all this awful chemo behind me once and for all.

    HappyHammer - I'm sorry to hear you've been having swallowing issues too. When I mentioned it to my MO she mentioned that (and the dry throat) could be from acid reflux that I wasn't recognizing as such. So I'm started taking Pepcid and popping antacids and I feel like it's helping.

  • HappyHammer
    HappyHammer Member Posts: 985

    Fighting- for me it is strictly neuropathy...they have done all kinds of testing to rule ot other things...and, it comes and goes...not as often as before so am hoping it will  "go" all the way soon, haha!  Glad you feel better after treatment 5 and know you are looking at putting it all in the rear view mirror.  Hugs!

  • misslil
    misslil Member Posts: 229

    Cassiecat, awesome results - congratulations

  • CassieCat
    CassieCat Member Posts: 863

    Thanks misslil - hoping for the same for you!

  • Stephmoen
    Stephmoen Member Posts: 184

    cassieat nice to see you still on here! Haven't been here in a while about 1 1/2 years out doing well! I had a complete response to chemo this is possible ladies stay positive!

  • april25
    april25 Member Posts: 367

    I didn't have a complete response, but I'm also a year and a half out and doing OK.

    NEO-adjuvent TCHP was the protocol that was FDA approved several years back... but I think there are people getting it post surgery, too... It's just that it hasn't gotten beyond the study/testing phase... but I think it's supposed to be effective that way, too.

    Radiation was a breeze compared to chemo (for me).

    Gah, it took long enough for my hair to grow in to a decent length! But aside from that, I've been pretty much back to normal life since after rads.

    I don't think I actually had any scans between chemo and LX... I wanted one... but I guess they just figured they'd find out how well the chemo worked after surgery (tumor shrunk by 1/3, still had active cells, no sign in SNB). I've had my breast felt-up like a gazillion times by now. Just back to mammograms (which I think is odd since a mammogram didn't catch my tumor! And I have dense breast tissue).

    Are any of you getting MRIs or Ultrasounds every 6 mos or yearly post treatment, instead of or in addition to mammograms? My MO thought I should be getting them, but my BS said I didn't need them--plus MRIs wouldn't be good because of the scarring. Hmmm.

    Good luck to everyone! Keep healthy!


  • minustwo
    minustwo Member Posts: 13,320

    April - I had TCHP but no pCR, so after ALND surgery, I had AC before rads & then continued Herceptin every three weeks for the rest of the 17 infusions. I don't believe you can get Perjeta yet except neo-adjuvant. I chose not to continue Perjeta after initial chemo due to Big D, although it was offered.

    My MO likes scans too apparently. I had a CT w/and w/o contract every 6 months all during treatment & for 3 years after so far. I think I had 2 MRIs over the 5 years. Also had a third PET/CT at my insistence before my Port was removed to confirm there were no remaining or new hot spots. Maybe some of this is driven because I had a recurrence 2 years after BMX, which was originally DCIS w/clear margins so no further treatment the first time.


  • Joy45Gen
    Joy45Gen Member Posts: 15

    This thread has been so helpful to me since I began chemo last fall. I have been reading, but never posted until now. Infusion #5 of 6 will be this Thursday. My first TCHP infusion was last November and it started out rough, as I ended up getting mastitis (caused by one of my sterotactic biopsies) just as my wbc was supposed to be getting low. Needless to say, it was a very rough first cycle of chemo. At my 2nd infusion, my medoc was concerned enough about the neuropathy I was experiencing, that he lowered my taxotere to 80%. That has made my side-effects much more acceptable. I have about 10-12 days of diarrhea on and off, and no appetite, then slowly recover to feeling normal in the last 10 days. The very encouraging thing about this treatment was after the first round, my tumor could not be felt at all. I haven't had any further scans or ultrasound, but it is no longer palatable. Hooray!!! At this point, I am hoping rounds 5 and 6 aren't as bad as I have been told they could be. I am also making decisions about surgery. So much to think about. It's wonderful to have this community to help me.

  • misslil
    misslil Member Posts: 229

    Got my pathology report back this past week from surgery earlier in the month, following four months of TCHP treatments and a couple of cycles with Herceptin alone.

    The pathology showed that there was a small residual tumor of 1.2mm, vs. the 1.5-2 cm area that had been assessed last summer by ultrasound and MRI. No sign of any problems in the sampled lymph nodes, consistent with the previous scans/studies.

    Overall I'm happy with this result as demonstrating a solid response to the TCHP protocol, and allowing surgery to tackle the remaining tumor area with clear margins and no need for surgical revisions. Lots more to go in the overall plan, of course, with remaining Herceptin treatments, radiation (probably), and years on Arimedex which I started yesterday.

    Interesting that when I had the latest scans post-TCHP, the ultrasound report showed a possible small area left in there. Where the MRI showed 'architectural distortions' or words to that effect, but didn't say anything that sounded like a distinct tumor.


  • kae_md99
    kae_md99 Member Posts: 394

    hi, second day of TCHP here. 5 more cycles to go. hoping for a good response.

  • minustwo
    minustwo Member Posts: 13,320

    Hang in there Kae. Good luck.

  • kae_md99
    kae_md99 Member Posts: 394

    thanks MinusTwo...

  • beaner81
    beaner81 Member Posts: 4

    Hi Ladies,

    This group has been wonderfully informative. I had just been following the February 2017 group, but not really finding information about my treatment that I can relate to. My first of 6 sessions of TCHP was February 14th and I've been struggling with the SE's, I thought I would bounce back after the first treatment a lot sooner.

    Joy45Gen - You give me hope that this diarrhea will subside and I'll feel normal for a little while anyway


  • misslil
    misslil Member Posts: 229

    beaner81, best wishes for your treatment program. i found the six round TCHP program rough toward the middle and late phases but I am seeing decent recovery now that it's some weeks behind me. And it does seem to have been effective per the pathology report. There were several other ladies following this program in the September thread who shared their experiences.

  • Joy45Gen
    Joy45Gen Member Posts: 15

    Kae, I hope you're finding your feet now that you're nearly a month into the TCHP.

    beaner81, I'm glad I gave you some hope. My 1st round was rough because it was all new, and I didn't have the "hang" of taking all the meds to help with the SEs. One tip my medoc gave me was to predict what day would be bad with diarrhea, and take immodium or the rx for diarrhea (don't remember the real name right now!) preemptively in the morning to keep it at bay. I wasn't so good at guessing when it would hit the first day, but after one day of it, I would take a couple immodium in the morning, or even take the rx in the morning and it would keep me stable for the day. I would still have rumbling, but no actual need to run to the bathroom. pfew! Here's a blog post I wrote about that first round of chemo: https://psalm7326journey.wordpress.com/2016/12/01/... and then another one when I was feeling better after that first round: https://psalm7326journey.wordpress.com/2016/12/06/...

    It's good for me to look back and remember those early days. I'm looking at my 6th and last treatment this Friday and can't wait to be done with it all, but also thankful that it all has truly been bearable. The yucky days are "numbered" each round. After my chemo is done, I'll have my mastectomy on April 14th, and my medoc says they can take out my port at the same time -- hooray! He's that encouraged at how my body has responded. So thankful! Here is my latest blog post about my decisions regarding surgery: https://psalm7326journey.wordpress.com/2017/03/06/realitys-chill/

  • kae_md99
    kae_md99 Member Posts: 394

    Joy,congrats! you are nearly done with TCHP! on to my second cycle this friday..

  • kae_md99
    kae_md99 Member Posts: 394

    how do we know that we are responding to TCHP? did any of you get a scan ( ultrasound or MRI) maybe midway through the regimen? i have wondered about that..

  • Joy45Gen
    Joy45Gen Member Posts: 15

    Kae, I only knew I was responding because the tumor could no longer be felt at all by me or the doctors. No scans have been done, so truly, I won't know if there was full response until after my surgery when they look at all my tissue. Thanks for the cheers! I'm so excited to be nearly done!

  • kae_md99
    kae_md99 Member Posts: 394

    thanks Joy!

  • minustwo
    minustwo Member Posts: 13,320

    Joy - you may want to re-consider having your port removed this soon. It looks like you are HER2+, so you will probably be getting Herceptin Infusions for the rest of a year after surgery It's soooooo much easier with a port. Also you avoid the risk of lymphadema by having a port to use for infusions & blood draws.

    Kae - after my TCHP and before surgery I had both a CT and an MRI to pinpoint what the surgeon was aiming for. I think that's standard for updated info that any surgeon would want.

  • misslil
    misslil Member Posts: 229

    I should have asked my MO this lol, but for those of us who are doing or have done TCHP - is the year of Herceptin from the beginning when it was with the other three TCHP drugs. Or a year starting from surgery or some other milestone, which would be more than a year total considering the neoadjuvant phase.

  • Joy45Gen
    Joy45Gen Member Posts: 15

    Yes, MinusTwo, I will keep getting Herceptin through November and the medoc says it will be easy enough to use my arm instead. I have my last chemo infusion tomorrow and I think I'll ask the nurses there what they think about it. I'm thankful to have one less surgery if it does come out at my MX, but I'm sure thankful to have it for chemo. My infusions last 5 hrs. The port has been so good to have!