Neoadjuvant TCHP - Post Results Here

1356736

Comments

  • april25
    april25 Member Posts: 367

    Beat wishes to CassieCat for your surgery!

    ----

    Thanks to you all for sharing your experiences and knowledge here. I am learning so much from you all. And applaud your positive attitudes.

    I have only had one cycle and have no idea if my tumor is shrinking... but you all give me hope!

  • Skoolgirljen
    Skoolgirljen Member Posts: 14

    I didn't have a complete clinical response to neoadjuvant TCHP either. It did shrink my tumor considerably, though. When I expressed concern, my surgeon told me that complete clinical response to chemo doesn't happen very often. Most of the time there are still remnants of the tumor at the time of surgery. That doesn't mean that chemo wasn't successful.

  • shellyvreug
    shellyvreug Member Posts: 1

    Agness, Thank you for starting this thread.

    I am triple positive HER2 overexpressed stage 2+, 3 by 4 cm ductal invasive, very near right nipple.

    No Lymph nodes involved per PET scan, very blessed.

    Dx 9/12/14

    1st Treatment 10/3/14 TCHP, every 3 weeks.

    First 4 weeks were bad (Most of October), but got better until New Years Eve (post 5th treatment).

    I passed out and seized with almost no BP, paramedics etc, and spent two days in the hospital. I had a couple V-tach events.

    I was scanned yesterday, and tumor shrunk from 3 by 4 cm to 1.5 by 0.9 cm, no chance for nipple sparing.

    We are wanting to cancel the 6th, as it is literally killing me. Planning for Dual Mastectomy.


  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241

    I am triple positive and did not have a complete response. I went from a large tumor (7-8 cm) to a small one (1.6 cm) and a whole lot of lymph nodes lighting up on the PET scan to two positive at mastectomy. My clinical stage was IIIC and my pathological stage was IIA. My surgeon had prepared me to have some residual tumor and I had read on here and other places that the nodes often don't respond that well, so I was pretty pleased with my pathology. I had obviously hoped I would be one of the rare cases where the surgeon's predictions were wrong and it would be only scar tissue left though.

    My post-surgery pathology didn't state grade or ki67 of the residual tumor and I'm afraid to ask. One interesting thing that happened though was that my biopsy pathology had me at 80% ER/95% PR and my surgical pathology had me still at 80% ER but only 2% PR. So I guess the PR cells were very susceptible to chemo and the ER cells were somewhat resistant? It definitely factored into me pushing for OS+AI even before the SOFT data came out.

    agness, my original oncologist was very against mixing chemo and hormone therapy. I wanted to do OS with chemo for fertility preservation reasons but that was nixed and I didn't feel like I had time to get a second opinion before starting chemo. My period returned only two months after my last chemo and he still wanted to hold off on hormonal therapy as he thought the chemo was still working in my body. He cited a study where participants who took Tamoxifen during chemo had worse outcomes than those who started Tamoxifen after. I never searched for that study online I have to admit. My clinical trial oncologist was also pokey about starting me on hormonals. I actually still haven't started the AI since my onc said it might take a few months to completely shut down my ovaries due to my age. I hope they were right and the three months I was ovulating between chemo and Zoladex did not allow those stubborn ER cells to get a foothold somewhere...

  • CassieCat
    CassieCat Member Posts: 863

    I should know more Tuesday when we have pathology back from my MX. Ill post again.

  • Izzyfran
    Izzyfran Member Posts: 46

    Hi All,

    Wished I had found this site while going through tx, but glad to be here now.

    Am Her2 +, IDC 3cm, Icm and DCIS and had neo-adjuvant therapy (TCHP). Throughout tx, could feel tumor shrinking and by 4th tx, could not be felt. Some SE during treatment: The week of tx: nausea & no appetite by 2nd & 3rd wk no nausea & appetite back to normal. Lost hair right before 2nd tx. Fatigue, SOB, dry skin (itchy) watery eyes (constantly), nails turning blackish/purplish color, severe acne on face after 1st tx then saw dermatologist and had no more issues after. The dreaded D, stopped eating fresh berries or veggies, ate only fruits w/ thick peel and cooked veggies. D stopped then later started having constipation & had to take meds. Metallic taste in mouth, hot flashes, "fog brain"... that's all I can remember, will add if I think of more

    Had a UMX with permanent placed in Nov. and pathology came out clear no node involvement but 1 of 2 marker clip missing. Had excision in Dec for marker clip that migrated and attached to nodes and again clear pathology and node.

    just had my 1st targeted therapy (Herceptin) on Thursday. took 2 tylenol & benadryl for premeds. had restless leg again so called MO to have different premeds for next time. At night had slight grade fever, muscle ache, shivering. Now feel normal. Hoping the next Herceptin in 3 weeks will be better.

  • april25
    april25 Member Posts: 367

    Izzyfran -- thanks for listing your experiences. It really helps me know what might be ahead.

    Did your nails stay on and eventually lose the dark coloring? Did you try anything to protect your nails?

    I haven't tried doing much for my nails so I'm guessing I'll have some effects as most people seem to have experienced it some.

    I've had enough problems so that nails are down the list. My oncologist reduced the amount of Taxotere this 2 nd round. I haven't heard of that before. Hopefully it won't hurt my chances too badly.... but ending up hospitalized again was something to be avoided I guess!

  • Izzyfran
    Izzyfran Member Posts: 46

    April,

    Yes, my nails actually grew quick during chemo surprisingly. It was only the discoloration that was an issue with my nails. After tx, there was a clear line dividing my new nails from the discolored part. Now, my nails are splitting from the nail bed but still not a big issue.

    I forgot to mention, that 1st tx caused my hands and feet to peel (maybe from dryness) but after derma prescribed cream, it went away.

    Not that I wish to ever do tx again, but thankfully for me my SE were doable. So if there is something not working on your tx or SE are too much and meds not working, let your MO know before it gets worst that way they can change something about your tx/meds. Hang in there and remember to hydrate.

  • CassieCat
    CassieCat Member Posts: 863

    I just spoke to my surgeon and he says there were no cancer cells in my tissue or lymph nodes, so it would appear I had a pCR (is that the right abbreviation?) to the neoadjuvant chemo. Good - no, great - news in my house today. :)

  • agness
    agness Member Posts: 406

    Cassie - I'm doing a big happy dance here for you. What wonderful news. For me it took a while to sink in but then when it did I've gradually come to a place that is a lot more relaxed about my future. Super big hugs of happiness.


    Woohoo!

  • Gingercake
    Gingercake Member Posts: 13

    I completed my treatment in October 2014. The SE's I had (nausea, mouth sores, fluid retention, mild diarrhea) were all manageable for the most part. My tumor started out at 2.5 x 2.5 x 1.4 cm. I had nipple sparing BMX on Dec 18 and my pathology showed no traces of tumor or cancer cells (best Christmas present ever!) I have just resumed targeted therapy Herceptin treatments, with a side of Lupron shots. I will begin taking Aromasin in 3 weeks.

    One annoying SE I have is that my eyes run constantly. It started somewhere around my 3rd treatment and hasn't stopped. My tear ducts have narrowed and closed up from chemo. I've been to the eye dr and he wants to put stents in my tear ducts. Have any of you ever had this done? It seems like it's my only shot at getting this corrected but there are no guarantees.

    Any feedback/experiences/tips are appreciated. I really don't want to spend the rest of my life dabbing at my eyes and explaining to people that I'm not crying!

  • Izzyfran
    Izzyfran Member Posts: 46

    CassieCat, that is such wonderful news.

    Gingercake, sorry about your eye issue.

    during chemo I had watery eyes and sniffles all the time. Now post, my eyes still water but not like before. The sniffles stopped after chemo, but now I just started Herceptin and its back again. Not sure if that has to do with it.

  • april25
    april25 Member Posts: 367

    Congratulations, CassieCat!!!! Fantastic news!!!!

    I've heard about the watery-eye problem. It seems pretty common. Don't know about the stents, though. 'Hope it works out for you.

    For some reason, I seem to have dry eyes! Gah. I wish my SE were a bit more normal... I just have no idea what to expect!!!

  • CassieCat
    CassieCat Member Posts: 863

    My eyes are still drippy, 4.5 week PFC.

  • april25
    april25 Member Posts: 367

    Hydranne -- I saw my ophthalmologist today and she said my eyes were definitely dry and I should use drops and gel at night.

    I'm still having diarrhea. .. so still worried about dehydration. ... had a high heartbeat rate a day ago but at least my blood pressure didn't drop.... but I still might need an IV. I'm seeing my oncologist tomorrow to check my electrolytes.

    I was feeling somewhat ok... tired and low appetite. ... then suddenly got nauseous today. The compazine didn't work so well.... now trying to keep something down. It's not terrible but I can barely try to keep out of the hospital because of it all. ... which is worrying. .. *sigh*

  • CassieCat
    CassieCat Member Posts: 863

    april, can you get an extra bag of fluids when you go in, just to help out? I know my center would do that if I asked or was showing any signs of possible dehydration. I got an extra bag once and it really helped.

  • Tree27
    Tree27 Member Posts: 6

    I just finished my sixth treatment of TCHP and now I need to decide on surgery. According to the mammo and ultrasound, it looks like I had a complete response; we won't know until surgery. Before chemo, the MRI had the tumor at 1.6 cm with no node involvement. I need to do MX without rads or lx with rads. Any suggestions? If MX what type of reconstruction do you recommend?

  • Shoppingmommy24
    Shoppingmommy24 Member Posts: 1

    I just finished my six rounds of TCHP on Wednesday. Before treatment, I had discovered the lump because it was large, painful, and caused an inverted nipple. After the second treatment, I could hardly feel the lump anymore, nor could my oncologist. So I got another MRI on Wednesday right after my last treatment. The tumor shrunk from 3.3 cm with 'satellite' areas to 2.2 cm with no satellite areas. I now get a break until surgery on2/26/15. I know it's better than hearing it grew, but I have to admit I'm devastated. I was hoping it would just be gone. I'm getting really depressed that this thing is going to beat me. I could really use some encouragement

  • PMR53
    PMR53 Member Posts: 185

    Shoppingmom

    My Dx is so close to yours. I understand how you feel. I would be happy for the shrinkage and disappearance of satelite areas but not as much as you thought. I am sorry. Now you get surgery!! Get it out of you!! You are done with chemo that is an amazing feat. You can pat yourself on the back for that. Did you decide on surgery type? I didn't see that. Hang in there. Let's hear what other survivors say about this but I think this is still a positive direction.

    PMR53

  • Skoolgirljen
    Skoolgirljen Member Posts: 14

    Shoppingmom,

    I didn't have a complete response to chemo, either. I felt devastated too until both my surgeon and oncologist told me they were thrilled with the result. My surgeon told me that more often than not, remnants of the tumor are left after chemo. If he was pleased with the result, then so am I. They way I see it, he is the expert and has seen it all. I had my surgery on July 1st and will have my second to last Herceptin tomorrow. I am glad to be moving on to the next phase of my life and I'm excited for what my future holds. Hang in there! You've been through the worst of it!

  • april25
    april25 Member Posts: 367

    I totally understand hoping for the whole thing- completely no sign of cancer- after chemo. I mean, that's only natural!

    I'm stilll only on my 2nd cycle and have been hospitalized twice so my hopes are just to get through chemo! But of course I want the stupid cancer gone too! At least I want some shrinkage. .. it will determine my surgery.

    I already was just a B cup... but after chemo and stress I've lost weight and it comes directly off my poor breasts! So I'm probably an A now.. . Taking a lump out without leaving a huge divot will be tough!

  • kmc11
    kmc11 Member Posts: 1

    Hi there,

    Just wanted to jump in case it helps anyone.

    I had TCHP (every three weeks) from August to December 2014; my last TCHP infusion was on December 10, and I continue with the Herceptin to reach a full year.

    According to my first diagnostic mammogram and ultrasound in July 2014, my tumor was 2.4cm. On December 2, after my fifth infusion, imaging showed that my tumor had shrunk to 1.8cm, less of a reduction than I was hoping for. I just had my lumpectomy and sentinel lymph node biopsy on January 12, 2015, and post-surgical pathology shows that there was just 2mm of cancer left in the tumor and no cancer in the seven lymph nodes taken by the surgeon. Not quite a pathologic complete response but close. My doctors are very pleased with the outcome and said that I had a fantastic response to the neoadjuvant chemo. Let me tell you, it felt amazing to get good news for once!

    I will meet with the radiation oncologist in a couple of weeks and will learn my radiation protocol then.

    All my best to everyone that sadly had to find themselves on these boards but a HUGE thank you for all of your support and wisdom. You are fantastic.

    Kris

  • moderators
    moderators Posts: 8,637

    And thank YOU, Kris, for sharing your experience with everyone here!


  • PMR53
    PMR53 Member Posts: 185

    congratulations KMC11!! That is very good news and a successful Chemo story. Rx is a breeze compared to Chemo. Thank you for sharing !!

    Patty

  • april25
    april25 Member Posts: 367

    kmc11 -- Great news! It's very encouraging to hear. Congrats!

  • CassieCat
    CassieCat Member Posts: 863

    kris, that is great! We are very similar in the timing of things, like days apart basically. I'm glad things have gone so well for you.

  • SugarCakes
    SugarCakes Member Posts: 73

    I noticed several people that had their tumors / cancer go away after TCH or TCHP, which I will start on Monday. I get there are still dead cells in there, but why mastectomy vs. Lumpectomy? I know ultimately, it's a personal choice but I'd really like to know what drove some to that decision. Anyone opt for lumpectomy or no surgery at all after testing tumor or cancer free

  • CassieCat
    CassieCat Member Posts: 863

    Size and location of original tumors and lymph node involvement made an MX and now rads the best choice for me. I brought those questions up with my surgeon and then ultimately trusted his advice, based on his expertise.

  • loriekg
    loriekg Member Posts: 118

    I have not made my decision yet...just started chemo last week, but right now I am leaning toward mx. Because I don't want to worry about this creeping up on me again. Just had genetic testing done yesterday, so results may factor into my decision...we'll see.

  • april25
    april25 Member Posts: 367

    I haven't had to decide yet, either. For me, it would depend on what the surgeon says, and how much the tumor shrank... and maybe other factors, like genetics, which I haven't had results for yet either.

    I would prefer a lumpectomy, since it's less invasive and would require less surgery at the time and hopefully less surgery after... BUT I have A/B sized breasts and taking a lump out might make it seem more deformed than a mastectomy... so I'll have to wait to consult with the surgeon, I guess.