Chemotherapy roller coaster

kennethewood
kennethewood Member Posts: 10
edited March 2014 in Breast Cancer #1
I couldn't find much in the male breast cancer discussion area, so I thought I'd try this one.

I am a 56-year-old male that was diagnosed in January of this year. Had a modified radical mastectomy in February, and am now in chemotherapy. I asked my oncologist for the most aggressive chemotherapy plan that he can provide, so he put me on a clinical trial of Herceptin (trastuzumab), Docetaxel (taxotere) and Carboplatin (paraplatin). I get this chemo cocktail once every three weeks, and the Herceptin alone and weeks two and three in between. Along with the chemo cocktail I get steroids and other stuff to prevent nausea. Because I have had no nausea at all (lots of stomach and intestinal rumblings, but no nausea), my blood chemistry stays pretty much up there, and I look reasonably healthy, my oncologist says that I'm doing excellent so far. In fact, the hair loss stopped before was complete. My kids now say that I look like the nutty Professor.

This chemotherapy regimen puts me on a three-week roller coaster ride. About a day after the three drug chemotherapy, things began to decline. My specific problem is serious muscular aches and pains, to the point of being debilitating. My oncologist says that this is normal. Massive amounts of ibuprofen and Tylenol have helped somewhat. But, when I reported how much of these drugs I was taking to my oncologist he indicated that I was way over the edge in terms of the quantities I was taking and has insisted that I cut back to a more reasonable level.

After about a week and a half of relative misery, things turn around to the point where I feel better for the second half, week and a half period.

All in all, I really am doing well. No complete hair loss, no nausea, no mouth problems and a supporting a loving family.

Here's the real question -- does anyone have any suggestions as to what I could specifically do in the second half of this three-week cycle, in terms of diet, exercise, vitamins, supplements, herbals, or anything else that would better prepare me for entering the downward part of the cycle again?

I am at the halfway point of the fourth cycle in a nine cycle plan. I did notice that things get a little worse in terms of aches and pains from cycle to cycle. The doc says that these effects should level off soon. I certainly hope so, because if they don't, after the seventh round of chemo I will be crawling into his office on my hands and knees.

Thanks for reading this. Best of luck to all of my fellow cancer survivors out there.

Comments

  • bunnie
    bunnie Member Posts: 233
    Sorry to hear that you have such pain while going through all of this.If is bad enough dealing with cancer in the first plance and then having to deal with the pain.Sorry i cant be of any help and what you could do to ease the pain just wanted to welcome you to the board and say sorry you had to find your way here.Iam almost done for the second time on my chemo i have one more left and that will be this next thursday.when all is said and done i while have taken 12 rounds of chemo.three on one off then three more and so on.Best of luck to you.Bunnie(amy)
  • judiek
    judiek Member Posts: 71
    Hi Ken,

    I know what your going through and it isn't a lot of fun. I have been on avastin and taxol for 3 months and the aches and pains are getting worse. I also have to get 2 neupogen shots everyweek to keep my white count up. That too casues aches and pains. I finally complained this past week and my doctor has given me bextra. Bextra is in the same family as cellebrex and vioxx. It is helping me so far. I still have some aches but it is improving. I was also told it can take a couple of weeks to get into the system. Hope this helps and best of luck to you.

    Warmly,

    Judie
  • LyndaW
    LyndaW Member Posts: 6
    Ken, I am very sorry to hear that you are having so much pain, but I can definitely relate. I too had unbearable pain with my chemo. I was on a 12 week regiment of adriomyacin and cytoxin (a treatment every 3 weeks) which didn't cause me too much pain, until I had to take neupogen shots in between treatments to bring my white blood cell count back up - 8 shots each time. The bone and joint pain was absolutely debilitating, and my doctor ended up prescribing percocet for the pain. For three days following each treatment, I was drugged up on pain killers just to survive. After sugery, I was given 12 weeks of Taxol - weekly treatments, and the pain was even worse, and cumulative. I again found myself taking percocet just to get some relief from the pain and get some sleep. By my last treatment, I could not stand up or walk, my husband had to actually carry me to my last appointment. The good news is, the pain started to lessen, and eventually went away completely about six months after my last treatment. Now I feel great. I am not telling you this to scare you, but to let you know that you are not alone. Ask your doctor to prescribe something for pain - whether it be along the lines of celebrex (which did not work in my case) or percocet - so you can get through this. Your body needs time to recoup and heal after the treatments, and being in constant pain is not allowing you to do that. It is hard to lessen the chemo induced pain through diet or herbal rememdies (believe me, we tried everything suggested to us by docs, friends, family). Just remember, this is just a minor set back, and you will make it through this.....as my husband and I used to say...better living through chemistry! Hang in there - my prayers are with you.
  • jeancmici
    jeancmici Member Posts: 665 Member
    Hi Ken,

    The nerve of your doc to just tell you to cut down on the meds when he should be giving you better pain meds. Taxotere is the culprit - causing more bone pain than muscular pain. Percocet should be good since it combines oxycodone for serious pain and the extra boost of tylenol. I took lortabs for the 3-4 days of bone pain when I was having adjuvant treatment and found Darvocet good too.

    I am stage iv now and need stronger stuff so take the percocet or just plain oxycodone.

    When I was in the hospital for a lumpectomy on Jan 2, 2001, I was in a comprehensive cancer institute and the same day there were two men there for breast surgery - a young man and a middle aged man.

    Good Luck to you.
    Jean
  • KLLONG
    KLLONG Member Posts: 8
    I too had much pain especially with the doxetaxil. My doctor gave me Bextra 20 mg. I didn't need it everyday just five days after treatment, by then I would not have as much pain. He also told me that even though I was in pain I needed to keep moving everyday, don't just lay around that would make it worse. Hope this helps. Hang in there you're almost done!! I had 8 rounds of chemo every two weeks and when it's all over it is well worth the roller coaster.

    Karen
  • Mich1417
    Mich1417 Member Posts: 37 Member
    Hi Ken! I'm also on the Taxotere, with Adriamycin, and Cytoxin with the neupogen shot 24 hours after chemo. I blame the Taxotere and neupogen for my pain. I can only tell you what worked for me. I'm 36 and was in excellent shape before my dx. I was planning on doing an Ironman race this year, and I am an aerobics instructor. I'm not tooting my own horn here, just want to let you know that I still am in fairly good shape. I pumped up my workout schedule in the week and a half before my next chemo, and that definitely did it for me. I had a much better go of the next chemo cycle. I also just started to go for a short walk on my worst day (2 days after chemo). I take 4 classes per week and lift weights in one of those classes. I found it helped me. I take Juice Plus, although I'm being very bad about remembering to take it! Hmmmm....chemo brain!
    Good luck!
  • billandpatty
    billandpatty Member Posts: 86
    Ken

    Welcome

    You're brave ... to get into this discussion board with all women! ... Sorry you're having to deal with breast cancer and pain. I'm a 4 year survivor. I also had pain in my joints -- I was 47 and felt 80+. I was told to not take any ibuprofen during my treatments (A/C). Like others are saying, your doctor should give you another alternative for pain. The effects from the treatments are culmulative, so as you get closer to the end of treatments, you're more tired, etc...don't get discouraged -- you're doing great! ... keep going and then give your body a chance to heal from these attacks of medicine to make you better (can you believe that they almost kill you to make you better??!!).

    Time does heal you. And you can help yourself by staying active (I walked everyday and after the chemo went to an exercise class that I still attend). Get out when you can, try not to get isolated (it sounds like your kids won't let you be too serious and that's good -- a sense of humor gets us all through this).

    This stuff is a roller coaster -- ride it and enjoy the moments that are calm and you feel well. (keep a journal, if you like) When it's all over, you'll get to look back and be amazed at what you were able to get through. ... we can all do it. And you're in a good place here on-line anytime you need encouragement or a laugh ... we'll all take care of you!

    Patty
  • Ronee33
    Ronee33 Member Posts: 25
    Ken,
    Chemo sucks. Plain and simple. I also had the chemo rollercoaster ride. I was able to work every day but the day of chemo and the day after chemo. And this is how I did it -- 1) Lots of water the day of chemo and the few days after chemo. Flush that toxin as quickly as you can out of your system. 2) I took walks every day. Some days for a half an hour and some days for 10 minutes because it hurt. 3) Ice and heat pads. 4) Most importantly for me - I ate well. I ate no junk food. I ate lots of proteins - meat and eggs and cheese, with lots of vegetables and fruits. Even when I felt like having junk food, I made myself eat healthy. My side effects from chemo completely disappeared within a month of finishing. Good luck!
  • martyzl
    martyzl Member Posts: 196
    Welcome Ken!
    I took up to 70 pills/capsules a day during and just after chemo. That was tough to swallow!!! Herbs, vitamins, etc. I got through 5 months of heavy chemo in quite good shape in '02. I tried to keep walking, as far as comfort would allow and also took one yoga class a week. Key there being listen to your body...

    My homeopath gave me a list of herbs and vitamins to take which I will gladly pass along to you if you'd like to run it by your Onc. My own Onc. was very impressed with how I came through everything and had no problems with me taking all these things. *smiles* I still take some of the herbs and such and my immune system seems to be stronger than before. In fact, during chemo, I avoided catching my young daughters' colds and the flu! That was the first winter I'd not been sick in my life!

    Please feel free to write to me at zenhound@cac.net if you'd like the list. I'll gladly share it with you.

    Be well and enjoy. You'll be up and running before you know it! Meanwhile.. you could go with some wild colour or I suppose just shave what hairs you have left! *wink*

    Marty in Michigan
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    A word of caution in regard to vitamins: there is some controversy currently over whether antioxidants impair chemotherapy. Discuss any changes with the oncologist.
  • mom62
    mom62 Member Posts: 604 Member
    Ken,
    Sorry to hear you are in so much pain. When I was on Taxol I would get muscle and joint pain 3 days after treatment for about 5 days. It was so bad I could barely walk. I was on the couch every minute I could be taking Percocet. I was working through the whole thing, but it wasn't easy, but al least it got my mind off the pain for a little while. I heard Vioxx works well too. Good luck to you in finishing your treatments.

    Terry