Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Taxotere, Carboplatin and Herceptin

1569570572574575627

Comments

  • lovewins
    lovewins Member Posts: 570
    edited February 2014

    ddgm...It is different for everyone.  Typically the 3rd day after treatment which for you would have been today is the hardest from what I have seen here on these threads.  My first treatment was hard for me because I was learning how to combat the SE.  My last treatment was my easiest.  One mistake I made was taking a lot of hot showers which gave me hand/foot syndrome which is when the palms of your hands peel and are wrinkly as well as the bottom of your feet.  I still have it PFC 5 weeks out and it is annoying.  Also the big C and big D were hard for me so it was learning how to balance that as well.   Also the chemo made me very emotional, I can see it more now that it is behind me. I wish you the best as you go thru your treatment, try to eat and drink a little bit every few hours.  You will get thru this.

  • naiviv
    naiviv Member Posts: 308
    edited February 2014

    DDgm

    We all respond differently . Just take it easy and stay on top of any SE's. Hopefully you'll have none.

    My exp was with my #1,2,3 SE's didn't kick in till day 1.5-2 days later and lasted about 10-12 days.  With #4,5 they started same day in the evening and last about the same 10-12 days.  With #5 I am also very tired. But I will say SE are  not fun but doable. By #2 if you had any in #1 you'll know how to deal with them.  I have managed to get to the office several times a week and take care of 3 kids and house, other days its been kids off to school and back to bed.

    I wish you the best and pray you have no se's.

    Vivian

  • oranje_mama
    oranje_mama Member Posts: 79
    edited February 2014

    I've been away for a little while, thought I'd check back in and let you know how my trip went.  We canceled our trip to Canada, because we decided it was just too much (flights, altitude, different country/language).  Then Amy (on this board) so generously offered us a stay in a condo in the VA mountains & that's what we did!  We went for a long weekend (3 nights), and had a fabulous time.  It was my last weekend of cycle #2, which meant I was feeling really good.  I went skiing both days but consciously took it easy (no black runs).  I wanted to update in case there is someone searching the site for guidance on what's "possible" during chemo - everyone is of course different, but I would say the things that made the greatest difference were:

    1) going at the very end of the chemo cycle when I was feeling good

    2) taking it easy (not pushing it), plenty of rest

    3) scaling back ambition - not doing ALL the things that you might otherwise do in a day

    4) driving distance (not too far) - I was able to bring my humidifier for instance which has been a lifesaver for me with all the terrible dryness

    Of course to come down from that high (!) I had TCH#3 on Thursday and it really kicked my butt this time.  Just very fatigued.  I went for a walk on Sunday but it was all I could do to put one foot in front of the other.  Sooooo glad to be at the halfway point.  But I find myself kind of down and I don't think the next treatments are going to be easy.  It's such a slog, isn't it.

    Editing to say that I really need to change my profile pic!  I do not have this hair now.  It took a long time, but most of my hair fell while we were away (Day 14-17 after #2).

  • 2ndtime4me
    2ndtime4me Member Posts: 51
    edited February 2014

    Oranje mama.  So glad you had a good time. I just had round # 2 and I can not walk a flight of steps without being out of breath. I dread the weakness getting worse. All my hair is gone now too. I did a pixie cut first and it did make it easier to transition to Baldness.

  • lovewins
    lovewins Member Posts: 570
    edited February 2014

    hang in there girls...of course everyone is different but my last chemo was the easiest.  II pray you all have light se.

  • atlbc
    atlbc Member Posts: 7
    edited February 2014

    I am 7 days past my 1st  TCH.  I had minimal SE.  The Claritin really workrd for the Neulasta pain.  I did have a little lower back soreness.  5 more to go.

  • 2ndtime4me
    2ndtime4me Member Posts: 51
    edited February 2014

    I seemed to be the only one NOT getting Neulasta. My 

    Dr. Is trying to see if I do ok without it. I am so far but this is only rd# 2 . They told me it is expensive. 

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited February 2014

    2ndtime - I never had Neulasta at all. My doc wanted to wait to see if I needed it also. By the third one, they wanted to schedule it but I pressed them to wait. And my counts squeaked through. Then on the final 3 tx, I insisted they wait also, and each time my counts barely made it.  It was stressful waiting to see what the number would be, but I had read enough about the challenges of the shots on this board, that i wanted to try.

    Also, I work from home and am not around children or many other people, so I was not concerned about my resistance being so low during that time. Otherwise I would have taken it. Neutropenia is no picnic either.

  • lovewins
    lovewins Member Posts: 570
    edited February 2014

    I have always wondered about the shots.  I had 6 of them and they were like 10,000!  I was amazed.  I always thought they made me feel like I got hit by a truck.  But I never did it without them so I will never know.  I did have to wait because of my counts 1 time for 1 week.  It is mind blowing to think of all the money being made off breast cancer.  I really hope they find out what is causing it...it just seems like too many of us get it.

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited February 2014

    oranje, You went skiing? Wow - I'm so impressed! It's amazing how it can affect people so differently. I thought I was doing good just to get a walk in. I'm done with my chemo and feeling pretty good. Herceptin seems to cause some bone pain and weight gain though. Hang in there ladies.

  • specialk
    specialk Member Posts: 9,261
    edited February 2014

    slowdeepbreaths - how quickly are you getting your Herceptin only infusions? On my first H only they went rather quickly and I had a lot of pain afterward (when combined with the TC they infused over 90 minutes) so I asked them to slow down the infusion to 90 minutes again, per advice from this thread, and the pain subsided.

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited February 2014

    SpecialK, They've been doing it in 30 minutes. I read your advice on another thread, and will ask them today to change it to 90 min. Thanks for the suggestion.

  • m1970
    m1970 Member Posts: 261
    edited February 2014

    Ddgm1003 - both times I did chemo the first treatment was the worst.  Side effects hit day 2-3, peak a few days after that and then get better.

    orange - so glad you were able to get away!  I heard the snow was great this past weekend/Monday, we so rarely get powder in VA.

    atlbc - you can do this!  congrats on getting through the first one, the worst part should be over.

    So I had a MUGA scan last Friday and I will get the results when I go in for treatment Friday.  I feel that my heart hurts more than it did and whenever I get a cough I wheeze and my chest hurts.  It is really subtle but still I'm concerned.  I don't want to set myself up for congestive heart failure, especially since I had different opinions about whether I really had an OVER expression of HER2.  I was reading somewhere, maybe here, that there were studies that were comparing survival rates for shorter treatment of herceptin vs. standard now (1 year).  Back when I first was diagnosed the standard was to do Herceptin every week.  What a pain!  Now it is higher doses every three weeks.  My local BS (the one that did my lumpectomy and nodes, but not my mastectomy) said there was a study that said Herceptin helped patients that didn't even have HER2, so that's why he stuck with his recommendation.  I've taken a Herceptin break already because of decrease in heart function, but they say my heart even decreased 10% or whatever the number was is still very good.  Well I don't want to loose any function!  I don't feel like I can do what I used to do.  I want to do strenuous hikes and multiday backpacking trips again.  I wish I could have a crystal ball and know what health issue is going to plague me in the future so I can make better decisions now.

  • naiviv
    naiviv Member Posts: 308
    edited February 2014

    Marsha,

    Just a thought in case you decide to continue H... I am doing herceptin weekly. I asked about the every three weeks for when I finish TCH and It was my Onc's opinion that weekly is less taxing on the heart.  She was explaining how important it was for HER+++ and she mentioned it's use in BC even for non +++.

    I am keeping weekly. I had MUGA before beginning chemo, just had echo at 3 months. My EF is about the same, but I asked for a copy of echo report and didn't read till I got home and it said mild evidence of mitral valve and tricuspid regurgitation. Not sure if that showed on MUGA or not. Have I always had it or is it new. She did not mention it, so I am trying to forget it, until I see her again next week.

    Best of luck with your decisions,

    Vivian

  • LindaKR
    LindaKR Member Posts: 1,304
    edited February 2014

    2ndtime, I didn't get neulasta either, my MO waited to see if my counts would rebound enough, and they always did!

  • oranje_mama
    oranje_mama Member Posts: 79
    edited February 2014

    Marsha, hoping that you hear good news on your heart.  The hardest part is when you fall in the gray area, isn't it?  How to know whether risks outweigh benefits? 

    Yes, I did go skiing and the snow was really good.  My energy level is dramatically different at different points in the cycle.  By the end of the three weeks, I feel almost normal.  I did take it easy on skiing, didn't do as many runs (or as difficult) as I normally would have, but it felt great.  Also because with the ski helmet on, I look just like everyone else.  I guess I liked looking normal too.  We went swimming - I brought a bathing cap to wear - and my older daughter asked why - she had actually forgotten that I had BC for the weekend.  Awesome.  I can't say that I completely *forgot* but I sure did not think about it as much.

    Right now, still in a low point.  My infusion is Thursday, Neulasta Friday, and by Saturday I'm lying in bed for the rest of the weekend.  On Sunday I dragged myself out for a walk and could barely put one foot in front of the other.  Had to rest mid-walk.  Monday I rested about half the day in bed.  Tuesday I worked more or less a full day from home.  Will do the same today.  I likely won't go into the office again till Friday - Thursday I have Herceptin and it doesn't seem worth the additional trip to the office.  

    I sometimes feel like I'm not "doing well" with chemo.  All these stories of infusion on Thursday and back to work on Monday.  That's just not me.  I guess if I had to I could make myself do it but my work is very flexible/accomodating, so it's not necessary.  I also feel like I want to save my energy/enthusiasm for my kids at the end of the day and not be completely wiped out by then.  Plus, just the comfort factor of having my own bathroom at home and kitchen.  My taste buds stay away for a good 10+ days.

    On the Neulasta shot - the cost is crazy.  My doctor is billing insurance $5000 per shot!  I became concerned because my insurance hasn't paid this yet (it's in that column of pending/not paid).  My doctor's billing coordinator says that there's an administrative issue and that it should be covered.  I sure hope so.  Otherwise a $30K bill at the end of this?!!!

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited February 2014

    oranje, fatigue is part of this whole thing. Just do what you can. I had so many "Scenic Detours" in my cancer "Journey" it was ridiculous. I couldn't go back to work at all. Everyone is different and no one wins any prizes for the worst time or the easiest! It just is what it is for you..No one here will judge. Just get through any way you can. Much love. 

  • naiviv
    naiviv Member Posts: 308
    edited February 2014

    Oranje.

    Neulasta has a patient assistance program in the event the insurance doesn't pay.  You oncology program should be familiar with it, but it is usually not offered from what I have heard...Only if someone inquires. It will help with copays and deductible.

    V

    Edited to add....So does herceptin and most drugs that are still under patent. Message me if you need more info.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited February 2014

    oranje_mama - I couldn't work at all either.  Response to chemo really varies from person to person.  I think it depends on your genetics.  Be easy on yourself. 

  • Viji
    Viji Member Posts: 89
    edited February 2014

    I could not work or even think of going to work, especially after treatment 3 and 4. I felt like I was dying a slow death.

  • OneTexasDay
    OneTexasDay Member Posts: 84
    edited February 2014

    For those who have add TCH with a port, my tx is done on 3/20, my reconstruction prob July and will have Herceptin through all of 2014. My port really isn't causing me a problem and I have never been told I have any prob with my veins   

    Did you wait until herceptin was done to remove port or did you get after TC or in conjunction with reconstruction in between?  Very curious to hear you experiences.  

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited February 2014

    Stephanie - I waited till H was over and had the port removed a month later. It was a very simple outpatient procedure, with only numbing to the area (I was awake). No big deal at all and I was thrilled to have it gone.  But it was also a Godsend during treatment. It was so good not to have to be stuck and find a vein each time. However, I had a friend who did TCH and a year of H with no port at all - she had good veins and it was never a problem. They switched between two veins on the back of her hand, alternating each time she went in.

    I would see if your onc and/or surgeon has any strong feelings about it and then decide.

    And - congrats on being almost done. 3/20 is very soon!

  • moonflwr912
    moonflwr912 Member Posts: 5,938
    edited February 2014

    Stephanie, I still have my port in! LOL. .If you have it in you have to get it flushed every 6 to 8 weeks. It wasn't a problem for me as I ended up needing magnesium infusions since PFC. So i get it flushed almost every 3 weeks. So during my exchange surgery I left it in. Since its so easy to take out I can wait till I don't need any ivs. 

    Much love to all. 

  • LindaKR
    LindaKR Member Posts: 1,304
    edited February 2014

    I tried to work during chemo, I did between MX and chemo, each treatment it was harder, until I just couldn't work at all, and still haven't been able to go to work, I'm permanent disability because of all of the side effects, I am the rare case, so don't worry, it probably will NOT happen to you.  

    I kept my port until the end of herceptin, then got it out in the office too, didn't feel a thing, but was a little sore after the numb wore off.  I know a lot of people keep there and just have them flushed, my friend still has her, and she's almost 3 years out, she's a hard draw though, so it makes it much easier to have her labs done.  I went somewhere different than she did, and they didn't ever use my port to draw blood, only put things in.  

  • minustwo
    minustwo Member Posts: 13,356
    edited February 2014

    I'll keep my port as long as they let me.  Chemo started last April, surgery in Sept, more chemo & starting yesterday, more Herceptin for a year.  Since I have a power port, they use it every time they draw blood and also for any tests that require contrast (breast MRI or PET/CT).  It's such a wonderful invention.

  • specialk
    specialk Member Posts: 9,261
    edited February 2014

    onetexas - I still have my port - I have it flushed every six weeks - and I am 2 1/2 years out from last TC and 2 years from last Herceptin.  My MO initially wanted me to keep it in case it was needed for early recurrence.  He said at my last appointment in December that I can remove it if I wish, but since it was placed during BMX I have no scar - it is subclavian so it is up high, just under the hollow of my throat, and removal will leave a visible scar in any neckline.  Because I have a number of visible scars from skin cancer removal I have been reluctant to remove my port.

  • Brwneyedgirl
    Brwneyedgirl Member Posts: 70
    edited February 2014

    update - day three after chemo I felt like I had been run over by a truck.  The body aches at night have made sleeping difficult.  However, everyday I have felt better.  This is day 6 after chemo.  Now just fighting intermittent intestinal issues.   I hope I do not have too much fatigue next week.  I know everyone is different, but I have been going to work every day.  Next time I might take a couple of days off after treatment.  Especially day 3 after.  Hope everyone is doing well. 

  • m1970
    m1970 Member Posts: 261
    edited February 2014

    ddgm2003. Hang in there. 

    Onetexasday. I have 6 months of Herceptin left to go and I had my port removed 2 weeks ago in my stage 2 reconstruction surgery. It became very painful to access and I refused to let them use it again. It also had made a very wide scar and I wanted my plastic surgeon to fix it. It would have been handy otherwise but my MO said Herceptin doesn't wreck the veins like the other chemo. I'm so glad to have it out. I figured the sooner I have it out the sooner that scar will heal. It's healing from surgery but it already hurts less than it did when the port was installed. 

  • 2ndtime4me
    2ndtime4me Member Posts: 51
    edited February 2014

    Hi Lovely Ladies

    I have been in hospital since Thursday with Febrile Neutropenia. Wow have I been sick! I have to stay awhile until my counts stabilize. I had fevers of 101- 103 + . this happened after Rd  2  I was not getting Neulasta but will be getting it now. Getting all kinds of IV antibiotics.  I can not believe anyone works thru chemo. I got this sick and have been staying home except for errands. I do have kids who could be bringing home germs. I have 4 more scarey rounds to go. I hope Neulasta works wonders for me.

  • Viji
    Viji Member Posts: 89
    edited February 2014

    2ndtime, sorry to hear about your troubles. Hope they take good care of you so you are back home in no time. Hang in there, dear.