Revlimid, is it maintenance the system for me?

rmaitral
rmaitral Member Posts: 24
in Multiple Myeloma #1
This is a big question. In 2002 I had plasmacytoma on T-7 and T-8. After radiation of the cancer, I was in full remission. Had to have my back rebuild so in 2003 I had back surgery and it all was very successful. In 2009, I had re-occurring plasmacytoma in a different location, this time on my right hip. After radiation of the cancer, I was advised I was in full remission in early 2010. After several months of feeling better, pain returned and in November I was diagnosed with MM (Poems). Revlimid, chemo, and stem cell were my treatment in 2011. Now I take Revlimid 10 mg daily as my maintenances treatment. Besides the high cost, there is new report of possible secondary cancer caused by the Revlimid. My main concern is the side effects. I know that they are under control but I have most of them. I’ve been on 10 mg daily for over a year. I have skin rash, diarrhea, stomach pain, nausea, tiredness, weakness, and headache, shortness of breath, back pain and ec't. They are all under control but it is very hard to do much because I’m limited by the side effects.

What is the risk if I stop? Will I feel better and get some of my strength back. I have read that many patients are taking Revlimid and don’t had any of the side effect. I’ve had my share and feel like the treatment is holding my body from healing. If this is the best it will be then I can accept it. If I can feel better and do more without the issues, I would love to have that back to that.

I’m not sure if there is an answer but any information would be great.

Comments

  • jennifrp
    jennifrp Member Posts: 1
    #2
    Hi Rmaitral,

    I'm currently having the exact same dilemma. I was diagnosed in 2006 and have had auto transplants (in 2007 & 2011). After my first transplant I was in CR for 2 years and watch and wait for another year before I decided to do the 2nd transplant. I'm now in CR again and have been on 10 mg of Rev maintenance since 2011. A week ago I told my doctor that I wanted a month break and he hesitantly agreed. Now that I feel 'normal' again, I don't want to go back on. I'm tired of being tired, being nauseous, having stomach problems and feeling depressed. My MM is not aggressive. I'm about 80% sure that I'll be telling my onc that I'm done with meds for a while. I don't want to stay on Rev until disease progression so they can pump more drugs into me and I'll just feel worse. I don't want to live like that.

    I think this is a personal choice since this disease attacks everyone differently, I think all decisions should be made differently. And the one thing I've learned is to follow my instincts and don't regret the decisions I've made.

    I'm sure that's not the medical answer you're looking for...
  • jjranchguy
    jjranchguy Member Posts: 9
    #3
    rmaitral
    I had my stem cell transplant in April of 2010. Two months after that my doctor put me on a 14 day on and 14 day off with revlimid. Now there is no signs of the protein. He is now dropping the dose to 7 on and 21 off.
    I know the side-effects are hell, but it beats the alternative. I hope things start to improve.
  • rmaitral
    rmaitral Member Posts: 24
    #4
    Update 12/7/12
    I’m still taking the Revlimid. I slowly got off my pain medication over several months. Was feeling good and exercising three day a week. Then the pain has returned. After many test, nothing was found. My cancer is in remission and no new spots on my pet scan. That is good but the pain is increasing. They are trying Gabapentin but it doesn’t seem to work. I’m on 1200mg and they want me to get to 1800mg and see it works. That will take about six more days. By mid day the pains drains me and even thinking is hard. I’m lucky because I can get a good night rest and start in the morning minimal pain.

    I’m working with a Neurological Specialists but she has not been able to determine why I’m having pain. The pain is over my entire body and is like the pain I had before each cancer activity. My next step will be going back to my Pain Management Doctor and start a new plan of controlling the pain and being able to function.

    Cancer is not an easy life to live and is very hard on my wife and family. My wife has to see me in pain and not be able to help. I’m so thankful of her, my family and friend for their support and understanding.

    I wish everyone a Happy Holiday and a healthy and good New Year.
  • jjranchguy
    jjranchguy Member Posts: 9
    #5
    rmaitral said:

    Update 12/7/12
    I’m still taking the Revlimid. I slowly got off my pain medication over several months. Was feeling good and exercising three day a week. Then the pain has returned. After many test, nothing was found. My cancer is in remission and no new spots on my pet scan. That is good but the pain is increasing. They are trying Gabapentin but it doesn’t seem to work. I’m on 1200mg and they want me to get to 1800mg and see it works. That will take about six more days. By mid day the pains drains me and even thinking is hard. I’m lucky because I can get a good night rest and start in the morning minimal pain.

    I’m working with a Neurological Specialists but she has not been able to determine why I’m having pain. The pain is over my entire body and is like the pain I had before each cancer activity. My next step will be going back to my Pain Management Doctor and start a new plan of controlling the pain and being able to function.

    Cancer is not an easy life to live and is very hard on my wife and family. My wife has to see me in pain and not be able to help. I’m so thankful of her, my family and friend for their support and understanding.

    I wish everyone a Happy Holiday and a healthy and good New Year.

    Glad you are in remission.
    I have found that if I don't over do things the pain is not too bad. I am thankful that I was able to retire early. I have been doing ranch work, which allows me to rest when I need.
    When I was in the early stages, a patient that was in remission for 5 years told me that she retired and was resting in between her activities. She said it was the best thing.
    I agree. I hope your pain is alleviated.
    Have a Merry Christmas and a Happy New Year.
  • shelleybean
    shelleybean Member Posts: 2
    #6

    I was diagnosed in 2008 with MM.  Auto transplant in 2009.  Good partial remission for 3 years.  Had another auto transplant this past May 2012.  Received exact same response of a very good partial remission.  Attempted to go on Revlimid maintainance and got shingles so bad it almost did me in.  I was in the hospital for a week as they couldn't seem to get it under control and I thought the pain was going to plain stop my heart.  I just had my 6 month post transplant visit and my numbers are even better than 3 months ago.  I do have ongoing nerve pain in which I use a combination of Fentanyl patches and Oxycodone.  2 12mcg pain patches that I change every 48 hrs. (not the 72 as it says they should work) and I take 5mg of Oxycodone 3 times per day.  All in all you probably know this is very little pain medicine.  But, it seems to keep my pain in check and I feel like I have no restrictions in living my life.  As for whether or not you should stay on Revlimid....hmmm. for me it was a quality of life issue.  I wanted it all and am willing to take the chance at this point.  Some people are content being in the house living a very low key life.  I want to be able to go out and do things like taking the dog for a long walk, doing the grocery shopping and having the energy to put the groceries away and cook dinner.  I do need about 10 hours of sleep every night and a nap of about an hour in the afternoon.  I have no interest in going back on revlimid.  But, I am the type of person that gets all the "rare" side effects of every drug they give me.  You do what you feel in your gut is the right thing to do.  I put a lot of faith in God to back me on the decisions I make and then move forward, never looking back.  Today is a good day and that's enough for me right now.

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