Confused with CML. Help!

dfernand
dfernand Member Posts: 7
edited March 2014 in Leukemia #1
Hi, I am 35 years old, mom of 4 kids and I was diagnosed with CML 10 months ago. I think I have taken it pretty well but my husband seems terrified but frustrated. Since I look fine when I am having night sweats or small amounts of joint pain, or even fatigue, my husband looks upset because I am not doing things around the house. Do I need to look sick in order to get some help from him and the kids? He keeps saying I need to join a support group to deal with this. I will have my 12 month biopsy in October 2009 to see if I am in remission. I take Gleevec. I am still having nausea at night after I take my gleevec at night and still having night sweats and pain in my bones or joints. It is a bit frustrating cuz some days I am really energetic and then I go back to laying in a bed with fatigue or pain. My last appointment was confusing. Some tests showed my cancer cells have multiplied but my white cell count was still in normal range (even though they keep climbing). For now the signals are mixed (some good news and some bad). How do we deal mith mixed test results?

Delia

Comments

  • Plecofan
    Plecofan Member Posts: 12 Member
    #2
    Good Luck
    Hi Delia,

    I'm sorry you're having nausea and joint pain. I know exactly what you're going through. I would get your family to sit down together and let them know you need help on your bad days. I'm sure they would be glad to help. If you're confused about what's going on, I would let your doctor know that you need clarification, and take your time and keep asking questions until you get all the info you need. It would be a good idea for your husband or someone to go with you and take notes. They may also have questions that you don't think of. I did this and got a much better understanding of my leukemia. I hope that your biopsy results are good and you go into remission. Also, stay positive and lean on God. It'll help you get through this.

    Jason
  • dfernand
    dfernand Member Posts: 7
    #3
    Plecofan said:

    Good Luck
    Hi Delia,

    I'm sorry you're having nausea and joint pain. I know exactly what you're going through. I would get your family to sit down together and let them know you need help on your bad days. I'm sure they would be glad to help. If you're confused about what's going on, I would let your doctor know that you need clarification, and take your time and keep asking questions until you get all the info you need. It would be a good idea for your husband or someone to go with you and take notes. They may also have questions that you don't think of. I did this and got a much better understanding of my leukemia. I hope that your biopsy results are good and you go into remission. Also, stay positive and lean on God. It'll help you get through this.

    Jason

    Good Luck
    Thanks Jason,
    We've had the sit down and talked about it but everyone seems to forget rather quickly. My husband came with me to my last biopsy and the results visit. I found out a day later that he was crying behind the door while I was scheduling my next appointment with the nurse. I am not sure he can handle this. I have a 17 yr old high school senior and I feel bad because I do not have the energy to do all the prepping for her senior year and college digging she needs to get done. I have asked my husband to help me with that. They hae such a bad relationship, they can't even work on this together. I keep praying they begin to help one another so I can rest when I need to.
  • proudmommy
    proudmommy Member Posts: 8 Member
    #4
    dfernand said:

    Good Luck
    Thanks Jason,
    We've had the sit down and talked about it but everyone seems to forget rather quickly. My husband came with me to my last biopsy and the results visit. I found out a day later that he was crying behind the door while I was scheduling my next appointment with the nurse. I am not sure he can handle this. I have a 17 yr old high school senior and I feel bad because I do not have the energy to do all the prepping for her senior year and college digging she needs to get done. I have asked my husband to help me with that. They hae such a bad relationship, they can't even work on this together. I keep praying they begin to help one another so I can rest when I need to.

    CML
    I know how you feel I too have went through the same thing with gleevec joint pain, nausea,etc. These side effects will go away in due time. I take zofran for nausea with my gleevec. This really helps. Just keep the faith and stay strong. I was dx feb. 08. I am 28 years old with 2 children. I am in complete remission and doing really well. I am also working full time. Don't give up they have other drugs besides gleevec if it doesnt work, plus some that are in clinical trials. Take Care



    Dorian
  • jennymotta
    jennymotta Member Posts: 3
    #5
    Bone pain and sweats.
    Eight years ago my sister had CML. She had a bone marrow transplant. She also experiences sweats. A lot at first, I think I remembering the doctors saying it was from the meds, her body is sweating out all the cancerous white blood cells. She had bone pain too, after the transplant. All I can say about that is, I think that it is normal for someone that has CML. Sorry I couldn't help more. I was her donor. I'm trying to advocate for more people to register on the bone marrow registry. We started a website called cancersreality.com. I'm working on putting video of our story along with helpful tips for people like you that are going through this. Take care. - Jenny
  • chemoforlife4pam
    chemoforlife4pam Member Posts: 1
    #6
    CML and Gleevac side effects

    This is to answer Delia.  I have all the same side effects in a really big way.  I can feel your pain.  I live alone with my dog and cats.  Your husband has to realize that you are absolutely a HERO continuing to take care of 4 children with CML and on Gleevac.  He should get help for you a few days a week so you can just stay in bed and get your strength back.  I can say one thing that might encourage you, I find when I go out and do something instead of sitting around thinking about it all day, the Gleevac gets through my system faster. So stay active as you are definitely doing now!  Your doctor can also set you up with a pallitive care specialist and put you on Zofran for the nausea;  pain is relieved and so is the depression and fatigue with Tramadol.  I use Oxycodone if I'm having bad joint pain, but find that the Tramadol alone can keep me up and living a normal life.  Some of joint pain you're having is the irregular cells still creeping through the joints from the bone barrow at times.  They say it can compare to a Sickle Cell Crisis.  So don't be confused.  The side effects  and symptoms are not in your head, some days will be better than others, and you are doing fabulously.  YOU ARE A HERO.  You have inspired me!

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