Just Diagnosed

lostinspace
lostinspace Member Posts: 2
edited March 2014 in Leukemia #1
Hello,

I am new here and I was just diagnosed with Leukemia. I am not sure which kind yet though the doctors are running more test to be sure of the severity. I have read a few of your stories and my thouhts and prayers are for you. I am really scarred. What was it like for you guys when yu first found out? Did you have to have therapy for it right away? What were your symptoms before you went into chemo, and then after? Well, thanks for reading this. I hope you have a wonderful day.

Comments

  • flo1960
    flo1960 Member Posts: 2
    #2
    I was diagnosed in January 2007 with Chronic Lymphocytic Leukemia. It has been difficult to find out much information or to find another woman to talk with about how I feel. My white blood cell count went down each 3 month check, but the last time it went up a 200 points. Since the count is still so low, the Dr. recommends just to watch and wait. That is very hard for me to do. My husband is wonderful. I have not been able to find a support group near our home. My advice is just to try to find someone who has it and ask everything you can. I dont get much information from my hemotologist as to what to expect or at what point I should have chemo, etc. All the same questions you are having. I say I put my health in God's hands but I do worry. Good luck to you.
  • lostinspace
    lostinspace Member Posts: 2
    #3
    flo1960 said:

    I was diagnosed in January 2007 with Chronic Lymphocytic Leukemia. It has been difficult to find out much information or to find another woman to talk with about how I feel. My white blood cell count went down each 3 month check, but the last time it went up a 200 points. Since the count is still so low, the Dr. recommends just to watch and wait. That is very hard for me to do. My husband is wonderful. I have not been able to find a support group near our home. My advice is just to try to find someone who has it and ask everything you can. I dont get much information from my hemotologist as to what to expect or at what point I should have chemo, etc. All the same questions you are having. I say I put my health in God's hands but I do worry. Good luck to you.

    Thank you. Sorry to hear about your story. That is so sad that no one will give you the info you need. I am here to talk to you any time if you need someone to talk to. I hope that by now you have received the info you may need. I hope you are doing ok and get better. Take care.
  • library1j
    library1j Member Posts: 6
    #4
    flo1960 said:

    I was diagnosed in January 2007 with Chronic Lymphocytic Leukemia. It has been difficult to find out much information or to find another woman to talk with about how I feel. My white blood cell count went down each 3 month check, but the last time it went up a 200 points. Since the count is still so low, the Dr. recommends just to watch and wait. That is very hard for me to do. My husband is wonderful. I have not been able to find a support group near our home. My advice is just to try to find someone who has it and ask everything you can. I dont get much information from my hemotologist as to what to expect or at what point I should have chemo, etc. All the same questions you are having. I say I put my health in God's hands but I do worry. Good luck to you.

    Hi Flo,
    I am a 53 year-old woman that was diagnosed with cll last November. I, too, haven't been able to find out a lot about cll. I know I am in the first stage and my white cell count last time was 19,000. I have to have a blood test every six months at the Cancer Center near my home.My oncologist is just taking a "wait and watch" approach. I have a marker called CD38 at 56%.This concerns me the most because I have read that the marker could cause my disease to progress more quickly and make treatment more difficult.
    Good luck to Butterflywings. Have you heard what type of leukemia you have since your 11/30/2007 post?
  • flo1960
    flo1960 Member Posts: 2
    #5
    library1j said:

    Hi Flo,
    I am a 53 year-old woman that was diagnosed with cll last November. I, too, haven't been able to find out a lot about cll. I know I am in the first stage and my white cell count last time was 19,000. I have to have a blood test every six months at the Cancer Center near my home.My oncologist is just taking a "wait and watch" approach. I have a marker called CD38 at 56%.This concerns me the most because I have read that the marker could cause my disease to progress more quickly and make treatment more difficult.
    Good luck to Butterflywings. Have you heard what type of leukemia you have since your 11/30/2007 post?

    My white cell count was 19,500 when I was first diagnosed in January 2007, since that time it has dropped to now it is 13,800. The hemotologist said this is not unusual. I have never heard of a marker.....now I know to ask about that - Thank you.
    In November 2006, I went to the emergency room with severe back pain and I fainted....but I had to find another general practioner to delve farther into my symptoms and discovered the leukemia. I see the hemotologist again in February. I was going every 3 months but the last time she made the appt for 6 months, but then I see my general practioner at 3 months. We live in a small town in Illinois but when, and if, the cll progresses I want to go to M.D. Anderson in Houston. Thank you for responding, it does help to talk to someone who understands.
  • beth51
    beth51 Member Posts: 5
    #6
    flo1960 said:

    I was diagnosed in January 2007 with Chronic Lymphocytic Leukemia. It has been difficult to find out much information or to find another woman to talk with about how I feel. My white blood cell count went down each 3 month check, but the last time it went up a 200 points. Since the count is still so low, the Dr. recommends just to watch and wait. That is very hard for me to do. My husband is wonderful. I have not been able to find a support group near our home. My advice is just to try to find someone who has it and ask everything you can. I dont get much information from my hemotologist as to what to expect or at what point I should have chemo, etc. All the same questions you are having. I say I put my health in God's hands but I do worry. Good luck to you.

    I was just diagnosed with CLL Stage 0 just 3 weeks ago. I had all the latest prognositic testing done at Mayo, which revealed a 13q deletion as the sole abnormality. I'm still awaiting the IvGh gene mutation status. The best resource I can share is clltopics.org, which is an incredible web site filled with amazing articles and help. It is so good to meet you two, flo1960 and butterflywings. I am a very young 51 yr old wife & mom of two. I am trying very hard to be brave about this, but the watch & wait thing is agonizing to me also. Flo1960, are you being treated thru a CLL Consortium hospital?
  • beth51
    beth51 Member Posts: 5
    #7
    flo1960 said:

    My white cell count was 19,500 when I was first diagnosed in January 2007, since that time it has dropped to now it is 13,800. The hemotologist said this is not unusual. I have never heard of a marker.....now I know to ask about that - Thank you.
    In November 2006, I went to the emergency room with severe back pain and I fainted....but I had to find another general practioner to delve farther into my symptoms and discovered the leukemia. I see the hemotologist again in February. I was going every 3 months but the last time she made the appt for 6 months, but then I see my general practioner at 3 months. We live in a small town in Illinois but when, and if, the cll progresses I want to go to M.D. Anderson in Houston. Thank you for responding, it does help to talk to someone who understands.

    Hi library1j and flo1960. It's so awesome to find women who share my situation and I wish you both the very best. I have found it incredibly helpful going to clltopics.org. On the home page, there is a CLL Primer for newly diagnosed which tells of all the latest tests available for accurate diagnosis and prognosis. My WBC was 36,000 when I was first diagnosed in Nov. '07. The 2nd test it was down to 24,000. I understand the counts fluctuate all the time. This is because the CLL cells can be gathering in your lymph nodes as well as floating around in the peripheral blood. They're still there, they're just moving around I guess.
  • Gezelda
    Gezelda Member Posts: 1
    #8
    Hi, I too was diagnosed this year only with CML there are so many different types of Leukemia but I guess we all have one thing in common, we are all scared and want to know more. I just switched Doctors today. I really liked my doctor but I never really got the information I needed from him. The new doctor sat and told me everything I wanted to know. Answered all my questions. He seems to be a very caring person. I know how all of you feel and Butterflywings I hope you have found out more by now and are a little more secure [ if that is possible] I will pray for you. God Bless all of you with Leukemia.
  • library1j
    library1j Member Posts: 6
    #9
    Gezelda said:

    Hi, I too was diagnosed this year only with CML there are so many different types of Leukemia but I guess we all have one thing in common, we are all scared and want to know more. I just switched Doctors today. I really liked my doctor but I never really got the information I needed from him. The new doctor sat and told me everything I wanted to know. Answered all my questions. He seems to be a very caring person. I know how all of you feel and Butterflywings I hope you have found out more by now and are a little more secure [ if that is possible] I will pray for you. God Bless all of you with Leukemia.

    It's so nice to hear from other women with cll.I try not to talk about it much because I don't want to worry my family, but the fear is still there and I am grateful to hear from other women on this site with the same problems. I tire very easily and I'm not sure if that is from the cll or the stress that I put myself through because of it. Do most of you suffer from fatigue and, if so, do you have any special pointers on how to deal with it?
  • possibility
    possibility Member Posts: 1
    #10
    Darling I am so sorry for your fear and pain. my mother is fighting leukemia right now. I am very new to this but what I've noticed is teaching hospitals r on their game, support is paramount, and u must FIGHT. And when it hurts the most, fight MORE. My most sincere and loving hugs to you. Never give up.
  • franmuso
    franmuso Member Posts: 4
    #11
    possibility said:

    Darling I am so sorry for your fear and pain. my mother is fighting leukemia right now. I am very new to this but what I've noticed is teaching hospitals r on their game, support is paramount, and u must FIGHT. And when it hurts the most, fight MORE. My most sincere and loving hugs to you. Never give up.

    i just wanted to piggyback on this ladies note. i am preparing for a stem cell transplant for aml this week at NY Presby Hosp. this web sit is a good starting place and has been recommended by the staff although difficult at times, do all you can to stay positive.

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