Anyone on Taxotere, perjeta, carboplatin and herceptin

jumbledbamboo
jumbledbamboo Member Posts: 158

I had my mastectomy 02/24/15. On round 4. Just wondering if anyone else is on this combo. Thank you!

Comments

  • DL3
    DL3 Member Posts: 154
    edited June 2015


    yes,  I am.   Did round 5  May 27    ...  round 6 (final) June 17  with Herceptin following the rest of the year

  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015

    I just finished 3. How r u feeling???

  • jumbledbamboo
    jumbledbamboo Member Posts: 158
    edited June 2015

    I was wondering how you all are feeling. I feel like crud most of the time and just started having neuropathy and the zaps in my joints.

  • DL3
    DL3 Member Posts: 154
    edited June 2015


    The worse SE  for me, is the BIG D.     altho I have a prescription  to help with it,  it isn't taken care of completely.   I am not saying I don't have SE 's  as I have full list of them  but most times they are only couple few days.   I feel pretty good otherwise.  I still work, do all the household chores I have always done etc. The only thing I have cut back and it makes me angry is my fitness.  I could kick my bootay.     I will get back to it again ...but for some reason I dropped it all.  :(   I am very angry with myself about the lack of exercise 

  • parkiegirl
    parkiegirl Member Posts: 1
    edited June 2015

    I've finished my second round of six. No problems the first couple of days then the nausea hits which lasts a couple of days. The worst part of it all is the terrible taste in my mouth that lasts for at least 10 days. It is such a struggle to eat and drink, even water tastes vile. After chemo, lumpectomy and then radiation.

  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015

    My problem is the DRYNESS...AND MY EYES!! Twitching and DRY

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    parkiegirl -- welcome to Breastcancer.org!

    You may be interested in checking out the main Breastcancer.org site's pages on Taste and Smell Changes and also Eating When You Have Changes in Your Sense of Taste or Smell.

    We hope this helps!

    --The Mods

  • Karmelita
    Karmelita Member Posts: 1
    edited September 2015

    Hello Parkiegirl,

    I finished the Taxotere, Perjeta, Carboplatin and Herceptin cocktail about a year and a half ago and reading your post brought it all back. The taste in my mouth was so awful that I found it almost impossible to eat or drink anything. My boyfriend and I fought constantly as he tried to insist that I eat. I ended up losing 20 pounds that I really didn't need or want to lose. Along with that, I also had what I can only describe as the sensation of a hairy throat. I had other side effects as well... nausea, infected finger nails and toe nails and horrendous constipation. I had a rough time. But, I want you to know that you can get through it and it will stop! It took a few months for my taste buds to start normalizing. Oddly enough - sweet things were the worst. But little by little I returned to normal. After the chemo, I had to continue with just Herceptin so that I had a full year of it. But things improved a great deal just being off the Taxotere and the Carboplatin. I also had 3 months of daily radiation. I finished the Herceptin last December and the Radiation a little over a year ago. It has been a long haul, but your body will heal and these awful moments will fade to a memory. I hope you're doing well.

  • Alibeths
    Alibeths Member Posts: 656
    edited September 2015

    you had 90 radiation treatments

  • Shawnna
    Shawnna Member Posts: 1
    edited September 2015

    I just started that same 4 chemo cocktail on Sept 17th 2015. I did great the day of treatment and even Friday I was only a little tired. Than Saturday it was like I ran into a brick wall. All my joints hurt and muscles ached. Here it is Monday morning and I still feel like I am getting over the flu. I feel groggy in the head like my body and mind are not working together. The only nausea I have is when I have one of my neon green bowel movements. As symptoms go this isn't a nightmare, but if this is only treatment one not looking forward to the next 5. I will stay on perjeta and herceptin for one year as well. I just hope that this symptoms will ease up so I can go back to normal.

  • bcinsc
    bcinsc Member Posts: 1
    edited June 2016

    I am about to have round 3 of six of the PHTC cocktail. My worst SE is the Big D as someone aptly put it. The first few days I feel like I kind of have the flu. I am so tired the first week but my schedule is treatment every 3 weeks so I have 2 "good weeks" before the treatment again. After the 6 rounds I will have surgery and then the perjeta and Herceptin for a year. I am interested in finding out how people with Her 2 positive, estrogen and progesterone negative cancer made the surgery decision. My doctor has said it is up to me whether I want just a lumpectomy or mastectomy. My thought is if I do a mastectomy I will do a double, but I really don't want a mastectomy if a lumpectomy is just as effective. Of course I am most concerned about the cancer coming back in my breasts or somewhere else in my body. How do you make this decision? Thoughts?

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited June 2016

    bcinsc- I did a similiar protocol.  Started May 2015 and finished up May 2016.  The perjeta seems to be the Big D culprit.  I had a lumpectomy after finishing the chemo part.  Had a complete response to the chemo and they found no cancer in the lx.  Hair really started filling out last month after finishing the Herceptin.  I didn't do the perjeta for a year as you will, though.  Is that new? Where are you located?  I'm in South Carolina but had treatments in NC.

    Hugs to you.

  • LiDu
    LiDu Member Posts: 17
    edited June 2016

    I had the same dilemma regarding whether to go for a lumpectomy or mastectomy. My original surgeon wasn't helpful so I went for a second opinion. I talked with the surgeon, and radiation oncologist, whom I really hit it off with. Part of my personal decision making process was genetic testing. My tests had come back negative but I had a paternal first cousin, two aunts and a grandmother who had breast cancer, and as my surgeon said, "We don't know what we don't know." My initial gut reaction had been bilateral mastectomy and that's what I went with. I don't regret the decision.

    Each woman has to make this decision based on her personal circumstances and feelings. I totally support whatever decision a patient makes. It's a tough decision, but I'd recommend getting a second opinion.

  • blg12003
    blg12003 Member Posts: 2
    edited June 2016

    Hello Karmelita, I was diagnosed Feb 24, 2016 with IDC and have the same treatment meds as you had. My last treatment will be July 1. Did you lose your hair and if so, did it grow back

  • RT89
    RT89 Member Posts: 1
    edited July 2016

    Hi Ladies, wondering if anyone else on this TCHP regimen is out of commission like me? Had my first round July 12 and have been unable to function ever since. Lost 10 lbs so far and having trouble with queasiness and back and forth diarrhea/constipation. Can barely get out of bed. Am I the only loser who can't handle it?

  • blg12003
    blg12003 Member Posts: 2
    edited August 2016

    Hello, finished this same combination 7/1/16. Now taking Herceptin for a year. Had my first single treatment on 7/22 and have been experiencing swelling in the feet, ankles, legs and one arm. The swelling has continued since the first treatment but do go down when sleeping keeping everything elevated. Has anyone experienced or Is experiencing this SE?


    Blg

  • stephincanada
    stephincanada Member Posts: 228
    edited September 2016

    BCINSC,

    I'm sure you have already made your decision, but for future readers, I thought I'd post how I decided to go for the double mastectomy for my er/pr neg, HER2 pos, tumour.

    A study found that:

    1. women treated for hormone-receptor-negative breast cancer were more than 3 times more likely to be diagnosed with a new cancer (either hormone-receptor-positive or -negative) in the other breast compared to women treated for hormone-receptor-positive breast cancer; and

    2. the risk of being diagnosed with a second hormone-receptor-negative breast cancer is almost 10 times greater in women with an initial diagnosis of hormone-receptor-negative cancer compared to women with an initial diagnosis of hormone-receptor-positive cancer.

    See link to the article here:

    http://www.breastcancer.org/research-news/20090710

    So, because I had one hormone negative cancer, I am more likely to develop a second primary breast cancer, which is 10 times more likely to be hormone negative. YIKES. I "got lucky" that my tumour was HER2 and can be treated with Herceptin. According to the study, if I develop a second primary B.C., there is increased risk that it will be triple negative. In my view, I am not amputating an arm or a leg; they are just boobs. I have breast fed my kids and am done with them! It is difficult for me to see my breasts as anything but ticking time bombs now...


  • Sr2295
    Sr2295 Member Posts: 34
    edited September 2016

    stephincanada thanks!

    Hi everyone,

    I'm on day 7 following my first round and just trying to get an idea about what se to expect moving forward, people's thoughts about surgery choices and just some shared support!

    Thanks for sharing!

  • Dennyj
    Dennyj Member Posts: 106
    edited September 2016

    I start chemo tomorrow and this is exactly my treatment. Not sure what to expect. I will be going every 3 weeks for 6 treatments. Followed by surgery &radiation.

  • BeachBabyK
    BeachBabyK Member Posts: 156
    edited September 2016

    Me! Chemo 1st round was 9/2 and other than catching a cold, side effects were not that bad (other than "the big D"). My Onoc Nurse said that if you had a lot of stomach issues when pregnant, you tend to have more issues with chemo. I had easy pregnancies and very little nausea overall. Days 8-9 were the worst on that front, but I had meds to help. My taste buds were toast about the same time and it was tough to eat anything at all. Hair started falling out around Day 13 and it coming out in sink-fuls now (today is Day 19). Round #2 set for Friday as long as blood work looks ok. I am also scheduled for 6 rounds, one every 3 weeks and then finishing out the year with Herceptin only, No Neuropathy yet and I haven't had the Neulasta shot. Surgeon recommends lumpectomy (after the chemo and a recovery period because I have breasts that are "large" ), but leaning toward mastectomy. Not sure if I'll need radiation too.

    On the "happy news" front... Dr says he believe that the lump shrank by 1/2 after the 1st round of chemo.

  • jandjmom
    jandjmom Member Posts: 48
    edited September 2016

    I just finished my 2nd infusion today of TCHP. My bad days started on day 6. Water and most food tasted like dirt. Gatorade and sweet/spicy food helped tremendously though my appetite was down by that point anyways. Taste buds and appetite returned with a vengeance week 3. I had a Neulasta shot, so my hips hurt on day 8 despite the Claritin, but only for that 1 day. My hair started falling out on day 15 with significant bald patches by day 18, so I went ahead and shaved my head. Been wearing a wig comfortably since when out of the house, otherwise I wear a crocheted hat in my house and for bed. Very comfie. I started with constipation, then the big D descended. It's pretty much one bout a day till day 17, though days 7-9 saw several bouts a day. Not sore and no cramps, but need to keep close to a bathroom. More tired, yes. For weeks 1 & 2 I slept an average of 10 hours a night, and the first week also required naps. Was back to 7-8 hours a night just fine by week 3.

    Time will tell if I follow the same pattern for this cycle.

  • Dennyj
    Dennyj Member Posts: 106
    edited September 2016

    thank you for all the updates because I have no idea what to expect! I started today and it was a long day. I seem to be okay but I am wide awake...the steroids are to blame (I think). I was curios about hair loss....I know it's going to happen, I just don't know when. I went in today super nervous but I am feeling better about moving forward.

  • ThatFox
    ThatFox Member Posts: 7
    edited September 2016

    My first infusion was 9/9 so I guess that puts me at day 13. The first two days following my first infusion weren't bad. In fact, I was surprised how good I felt - other than some mild nausea and constipation on day 3. Day 4 changed all that. I had to leave work by 10:30 when I threw up - despite the Zofran. Threw up twice that day and then the constipation took a complete 180. I'd say days 4 and 5 were definitely the worst. I spent most of day 4 trying to sleep just to avoid having to feel sick. I was back at work day 5 and felt pretty crummy all day, but it was doable. After that I was a bit tired but not enough to keep me from my regular routine. I was able to start eating pretty normally on about day 7 (in MUCH smaller portions). I haven't had any weird taste issues although I have developed a couple of sores in my mouth that make eating a dream! Mostly I'm feeling back to normal right now - I mean other than the mouth thing. A few odd little things I've noticed that are annoying, but aren't making me miserable are my eyes and nostrils are really dry and I have an odd rash - mostly just a spot here and there that is dry and itchy. And a bit of acne which may be unrelated but I haven't had any for years so I don't know. No noticeable hair loss yet so I am just waiting on that. Should be any day now.

    My next treatment is next Thursday. I requested they move it up a day so my worst days will hopefully be over a weekend to avoid missing work as much as possible. Working through this is a MUST although I have been warned that it will be tough.

    Right now my surgeon is recommending a mastectomy since the cancer is multi-focal on the right side. She said I should consider bilateral even though they haven't confirmed any cancer in the left (although I go for MRI guided biopsies on that side Friday since they found several suspicious areas in the last MRI). She's recommending the bilateral primarily for cosmetic reasons since gravity and aging doesn't work the same on the new and the original equipment. So I'm looking forward to that fun little event early next year.

    I'm still trying to see the silver lining to all of this... saving money on hair care products, not having to shave for several months, the fact that everyone feels obligated to be nice to you because "she has cancer", perky new tatas that will stay that way for quite a while.... But honestly, this whole thing is a real bear. I never would have imagined being in this position, but here I am.

    On the bright side, I have my daughter home for a few days right now! She came home and surprised me Sunday. Talk about falling apart! I think I cried for an hour. She's in the Army and I wasn't expecting to see her until Christmas. I LOVE getting to go curl up with her in the mornings before I go to work. I think I needed to see her more than I knew.

    You ladies have got this!! It sucks, but we are all going to make it through this. And then imagine the stories we will have!

  • Varilee
    Varilee Member Posts: 1
    edited March 2018

    Hello, I am new to this. Just had my first chemo on Tuesday, February 28, 2018. Not feeling very good ... throat is swollen and sore. No energy and I passed out while in the bathroom last night. Not sure if I should call the clinic

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited March 2018

    Varilee - Yes, call the clinic! Passing out is not normal. Any number of things could be going on.

    Wishing you the best ...

  • Fairchild
    Fairchild Member Posts: 206
    edited September 2018

    Hey, y'all, I am also on Herceptin, Perjecta, Taxofera, and Carboplatin (excuse sp!). I have just had the first infusion and beginning the next day had a really hard time. Was incredibly nauseated...lost 11 lbs in 7 days, which I didn't think was possible. Even water tasted awful. Everything tasted awful. The only things I managed to consume for 11 days were toast, grits, dry cereal without sugar-- and water. It was really bad. My doctor tried calling in medicine in rub-in form, so that I didn't have to swallow it, but it didn't help. I also had a little mild diarrhea. Also had horrendous bone pain, neurological pain in all of my healing surgery sites (all closed at this point), and most other SE except for swelling. Then after 11 days the SE cleared and I could eat again! For the next round, we are going to try a patch for nausea, and I'm going to consider trying medical mj, since really, dropping this much weight this fast is scary. I hope you guys are doing better with this combo than I am!

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