anyone tried Gleevec?

jillpls
jillpls Member Posts: 238
edited March 2014 in Leukemia #1
Hi I'm new to this board, but not new to cancer. I have colorectal cancer and am expected to get into a clinical trial using Gleevec. So, I thought I'd ask around to see if anyone here has ever tried it. Thank you so much for any information you can pass out. We are all in the battle together

Comments

  • tf168wife
    tf168wife Member Posts: 21
    #2
    Gleevec
    Jill - the only thing I know about Gleevec is that it is given to people with Chronic Mylegenous Leukemia, and apparently it has been very successful putting many into remission. I have a new friend who has CML (I have CLL) who takes Gleevec and she said she has to take it the rest of her life. Sorry I couldn't be more helpful, but I know that there are quite a few people on this forum who have CML and are taking Gleevec, so hopefully they will also respond with more information.
  • Oscar0914
    Oscar0914 Member Posts: 32
    #3
    Gleevec
    Jill,
    I was on Gleevec for 10 months about 4 years ago for CML. I will give you a couple of good web sites you can go and read posts and comments of people with CML who have been on it for a long time. As far as CML is concerned people usually do have to remain on it indefinitely. With Gleevec it is best to take it with your largest meal of the day and a large glass of water. As with most medications there are side effects but most get easier over time. Your doctor should be able to help you out with when and how to take it. American Cancer Society, Leukemia and Lymphoma Society have great web sites as well as Novartis that makes Gleevec.
    Here are a couple of other web sites to get patient responses.
    www.newcmldrug.com
    http://health.dir.groups.yahoo.com/group/CML2/?v=1&t=directory&ch=web&pub=groups&sec=dir&slk=1
    I hope this helps you out.
    Chuck
  • jdoug34
    jdoug34 Member Posts: 4
    #4
    Gleevec
    Hi I'm new to this board too. I have been on Gleevec treatment for CML since January 15 this year, 2009. 400mg daily. I have had excellent results so far and though not in complete remission, I have had a partial remission. ( haemotologic and cytogenetic but not yet molecular). Side effects are apparent but not too intrusive on quality of life. I believe I will be on gleevec for life as it is not a cure but allows the disease to be managed in a chronic state. Monitoring is very regular for the first few years as some people can develop resistance to gleevec and need to be treated with different drugs. Hope this helps. Keep well.
  • debbbie
    debbbie Member Posts: 2
    #5

  • njeanne
    njeanne Member Posts: 2
    #6
    Gleevec
    I have been on Gleevec since March 2000. I have probably used it longer that almost anyone since I was in the second clinical trial. I have CML and it saved my life. I do have side effects. Drink lots of water and take it with a meal. I even take an anti-acid with mine because it causes me to have an upset stomach if I don't eat enough or the correct things. I also have cramps. I find ice is best for these and, of course, exercise and proper diet none of which do I do properly. I expect to be on it for the rest of my life. I am 73 and was too old to have a bone marrow transplant and interferon caused terrible side effects and didn't work. I consider Gleevec a miracle drug that gave me life and allows me to continue to lead and active and normal life. I am eternally grateful to Dr. Druker and Navaris for development of this drug. Best of luck to you with your treatment.
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #7
    tf168wife said:

    Gleevec
    Jill - the only thing I know about Gleevec is that it is given to people with Chronic Mylegenous Leukemia, and apparently it has been very successful putting many into remission. I have a new friend who has CML (I have CLL) who takes Gleevec and she said she has to take it the rest of her life. Sorry I couldn't be more helpful, but I know that there are quite a few people on this forum who have CML and are taking Gleevec, so hopefully they will also respond with more information.

    Gleevec is used for:
    Newly
    Gleevec is used for:

    Newly diagnosed adult and pediatric patients with Philadelphia chromosome positive chronic myeloid leukemia (Ph+ CML) in chronic phase.

    Adult patients with relapsed or refractory Philadelphia chromosome + acute lymphoblastic leukemia (Ph+ ALL).

    Ph+ CML in blast crisis, accelerated phase, or chronic phase after failure of interferon-alpha therapy.

    Adult patients with myelodysplastic/myeloproliferative diseases (MDS/MPD) associated with PDGFR gene rearrangements.

    Gastrointestinal stromal tumors that are C-kit positive.

    Note: If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.
  • jhughes2234
    jhughes2234 Member Posts: 2
    #8
    Hi, I'm new to this board
    Hi, I'm new to this board too. My husband has a very very rare form of Leukemia. Acute Myeloid Leukemia with inversion 16, also philadelphia translocation BUT at the minor breakpoint. Usually its at the major breakpoint which would mean he has CML. So, he is the first patient (35yrs old) with these particular gene abnormalities to be treated with high dose chemo then Gleevec. He was diagnosed in May 2009. He went into remission in June 2009. He's been on Gleevec since October 2009. He takes it with a large glass of water before bed. He used to take an anti nausea pill with it but just handles it now. (He hates taking pills) His WBC count is always just at the tip of being in the normal range ie. 4.5-5.0 He feels tired more often than before and he seems to catch colds much easier than before. He takes 400mg daily. We don't even know if this will help keep him in remission but will do what it takes. I have read many great things about Gleevec. However since it is a fairly new drug, none of us know the longterm effects of taking it. Good luck to and your family, hope this helps!
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #9
    jhughes2234 said:

    Hi, I'm new to this board
    Hi, I'm new to this board too. My husband has a very very rare form of Leukemia. Acute Myeloid Leukemia with inversion 16, also philadelphia translocation BUT at the minor breakpoint. Usually its at the major breakpoint which would mean he has CML. So, he is the first patient (35yrs old) with these particular gene abnormalities to be treated with high dose chemo then Gleevec. He was diagnosed in May 2009. He went into remission in June 2009. He's been on Gleevec since October 2009. He takes it with a large glass of water before bed. He used to take an anti nausea pill with it but just handles it now. (He hates taking pills) His WBC count is always just at the tip of being in the normal range ie. 4.5-5.0 He feels tired more often than before and he seems to catch colds much easier than before. He takes 400mg daily. We don't even know if this will help keep him in remission but will do what it takes. I have read many great things about Gleevec. However since it is a fairly new drug, none of us know the longterm effects of taking it. Good luck to and your family, hope this helps!

    you mentioned your husband
    you mentioned your husband was diagnosed in May 2009 and he went into remission in June 2009.
    is that right? Was his DR the famous Dr Leonard Bones McCoy from the orginal TV series Star Trek show.?

    http://www.technovelgy.com/graphics/content08/hypospray-McCoy.jpg
  • chemochick09
    chemochick09 Member Posts: 1
    #10
    HeartofSoul said:

    you mentioned your husband
    you mentioned your husband was diagnosed in May 2009 and he went into remission in June 2009.
    is that right? Was his DR the famous Dr Leonard Bones McCoy from the orginal TV series Star Trek show.?

    http://www.technovelgy.com/graphics/content08/hypospray-McCoy.jpg

    is that even possible?? to
    is that even possible?? to be in remission after one month?
  • jhughes2234
    jhughes2234 Member Posts: 2
    #11
    HeartofSoul said:

    you mentioned your husband
    you mentioned your husband was diagnosed in May 2009 and he went into remission in June 2009.
    is that right? Was his DR the famous Dr Leonard Bones McCoy from the orginal TV series Star Trek show.?

    http://www.technovelgy.com/graphics/content08/hypospray-McCoy.jpg

    He went thru high dose chemo
    He went thru high dose chemo for 5 weeks. His DR said once the leukemia cells have been wiped out with chemo, and dont come back, you are in remission. Per his bm biopsy in june 2009, he showed no new leukemia cells. I dont know if that is the "normal" way it happens. This is the first time we have ever dealt with cancer. All I know is its been almost a year and he is alive well & cancer free! So maybe HIS DR-Eric Safyan from UPMC is better than your star trek dr even. Or maybe, because of how rare his type of aml is- its a good rare rather than bad considering the circumstances. Just trying to help someone out asking about Gleevec, didnt know I would be challenged or made fun of.
  • rubow117
    rubow117 Member Posts: 2
    #12
    gleevec
    Hi, I'm new to this board. I have been on Gleevec since June, 2009. My oncologist says that as long as I stay on Gleevec I will be okay, although I have read that it is possible that, over time, it will stop working. I do have nausea when I take it so I'm also taking Kytril as well. I think Gleevec has saved my life and since my husband died of colon cancer a few years back I was thrilled that I could live to see my grandchildren. The only problem I have is that when I retire next year the cost of the drug will be approximately $900 per month (that includes the Kytril).But if I had to pay for it myself without a drug plan it would cost over $4,000 per month. Since I'm not considered below the povertry level I don't qualify for Medicaid and $900 a month will take a big bite out of my retirement. I shouldn't complain, at least I'm alive.
  • ReubenC
    ReubenC Member Posts: 16
    #13
    rubow117 said:

    gleevec
    Hi, I'm new to this board. I have been on Gleevec since June, 2009. My oncologist says that as long as I stay on Gleevec I will be okay, although I have read that it is possible that, over time, it will stop working. I do have nausea when I take it so I'm also taking Kytril as well. I think Gleevec has saved my life and since my husband died of colon cancer a few years back I was thrilled that I could live to see my grandchildren. The only problem I have is that when I retire next year the cost of the drug will be approximately $900 per month (that includes the Kytril).But if I had to pay for it myself without a drug plan it would cost over $4,000 per month. Since I'm not considered below the povertry level I don't qualify for Medicaid and $900 a month will take a big bite out of my retirement. I shouldn't complain, at least I'm alive.

    Treatment Costs
    rubow, I encourage you to contact your local Leukemia & Lymphoma Society Chapter. They have a program that you may be able to qualify for as long as you meet the next two requirements.
    1. Must have Health Insurance
    2. Yearly Income does not exceed 500% or the national poverty level, for one person that's about $74k a year.

    If so, you could qualify for up to a benefit of $5,000 through the Co-Pay program. This program is a reimbursement program that will pay claims related to your out-of-pocket costs for your medications related to treatment and even your insurance premiums. However given your numbers it would account for almost half of your yearly drug costs, which would put you in a better position then without it.

    The program does have some options to setup a direct bill too if you would need it, but you would have to ask them about doing that.

    If you currently meet the requirements above, you can actually apply for the program as early as now online, or call on Monday when the office opens. LLS works on a Fiscal Year from July to June, so if you are approved for FY11 (current fiscal year) you can actually backdate your claims to June of 2010.

    I recommend applying as soon as possible and filing your claims quickly and timely since claims are processed in the order they are received, and we are nearing a busier time of year which can cause a backlog in the processing.

    You can apply online at www.lls.org/copay or call (877) 557-2672. Please keep in mind the LLS website has just gone though a complete re-design and some of the links might not be fully functional just yet.

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