• Oscar0914's Avatar

    Oscar0914 wrote on kstarrgirl's wall

    Hi KS,
    I was diagnosed with CML 11/1/05. I had my 7 yr cancerversary in Nov. I am doing fairly well. I do have to take a oral form of chemo twice daily. There are some studies of people going off meds but about 70% relapse and have to go back on meds.
    How are you doing since your transplant?

  • Oscar0914's Avatar

    Oscar0914 wrote on kstarrgirl's wall

    Hi, Ks, Can I ask what type of Leukemia you have/had? It looks like you just had your one year anniversary from transplant. Congrats.

    1 Comment
    • kstarrgirl's Avatar
      kstarrgirl

      Hi Oscar - AML, which started as MDS. My one year anniversary is July 17! I just celebrate each month as a milestone. :) How about you?

      over 3 years ago
  • Oscar0914's Avatar

    Oscar0914 wrote on kayebee's wall

    Hi Kaye,
    Nothing real special about the Oscar0914 (my cats name and daughters bday), When I was first diagnosed there where not a lot of support groups out there so I joined the CSN chat room on the American Cancer Societies page. I was nervous of using my name but now with Face Book I use my real name most times.

    If you are on Face Book look up and join the CML Survivors Group and the CML Survivors and Caregivers "Closed" Group. I can add you to that group if you want. They both are great for info and just posting questions etc.? The only difference is the closed group your posts and comments don't show up on your home page or news feed, only members of the group can see it. That way you can be a little more open on that one.

    Email Greg again and I am sure he will try to have Sheila get back a hold of you. Greg is so busy he may have forgotten. If you look him up on Face Book it is Greg Stevens.

    From my experience the fatigue does get better with time. Don't be afraid to ask your Doc. CML really needs to be treated by a specialist. I am sure there are some good ones in your area. I am so glad too for the mild winter. I am in Northern Michigan and we have had the 2nd least snowfall this year since they have been keeping records. I ache more in the winter and with weather changes.

    Talk to you soon,
    Chuck

  • Oscar0914's Avatar

    Oscar0914 wrote on TinaS's wall

    Hi Tina,
    I too have CML, I was diagnosed Nov. 2005 and have been PCRU for 4 years now. I have been on Gleevec, Sprycel and now Tasigna for almost 4 years. I have many of the usual side effects but they do tend to taper off (at least for me) and from what I have heard from other CML patients.

    Feel free to give me a shout if you have any questions.

  • Oscar0914's Avatar

    Oscar0914 wrote on kayebee's wall

    Hi Kaybee,
    Nice to hear from you, things are going good for me right now. My last checkup all my bloodwork is right where it should be and I am still PCRU. Have you had a chance to talk to your oncologist about how many CML patients he has? If he can't answer your questions you have then you may want to find another doc. I drive 250 miles to see my specialist and I feel it is well worth it. I only have to go twice a year now and bloodwork every 2 months locally.

    I am not sure if I gave you the National CML Society but they have all kind of resources for CML patients. Greg is extremely helpful and will find the answers for you if you can't. http://www.nationalcmlsociety.org/

    If you have any questions I can help you with feel free to give me a shout.

    Talk to you soon,
    Chuck

    1 Comment
    • kayebee's Avatar
      kayebee

      Hi Oscar/Chuck,

      Thanks for getting back so soon. Great to hear from you and that your checkup went so well. Reinforces hope.

      I have not asked my oncologist about other CML patients. I'm planning to ask on my next visit since I am trying to connect with other CML people.

      You did give me the National CML Society web address and I found some interesting info. I expressed an interest in trying to connect with others in the Albany, NY area and I received e-mails (early January) from Greg and Sheila saying I would hear from someone, but I never did. I have not had a chance to get back to let them know. Everything takes so much time. Some days I have all I can do to keep up with the things I have to do with my job, home and family. Thank goodness for the mild winter this year!

      Again, thanks for your input, and I'll pray things keep going good for you.

      Kaye

      PS: Is there a story behind Oscar0914?

      over 4 years ago
  • Oscar0914's Avatar

    Oscar0914 wrote on kayebee's wall

    Kay,
    Have you tried drinking tonic water to help with the cramps. I had them terrible when I was on Gleevec. Also Gatorade helped me a little with the cramps. My jaw used to freeze up on me all the time when I was on Gleevec.

    Have you been to the website newcmldug.com, or nationalcmlsociety or there is a yahoo group CNL2? All of these are good sites for info. or to post questions and get answers from other CML patients.

    It does take a while to get used to the "lingo" of CML, I used to have to look up stuff after my doctors visits. Do you see a CML specialist? I drive about 240 miles to see my oncologist so I am glad I only have to go every 6 months now. I have a local oncologist also but I only go there for bloodwork as he only had 1 other CML patient that he was seeing.