CLL

minimac
minimac Member Posts: 1
edited March 2014 in Leukemia #1
Hi..I'm new on this site and I'm searching for other people that have CLL. I was diagnosed 18 months ago and am stage 0, no treatments to date and am clinically stable. My life is not changes except I have too many days where I'm down and the "what ifs and the will I be here in 5, 10 years etc." My husband and I have not shared this with our children, other family members or friends because I'm on the "watch and wait" trip. I would love to have and to support others who are on this path.

Comments

  • runabe
    runabe Member Posts: 48
    #2
    CLL
    Was just told I have CLL I am going to the DRS in two weeks to take more tests to see what stage I am in The one doctor thinks it is 0 I have adult children sat all down and told them I thaught it best to do it that way Have to wait for doctor appointment Oncologest/Hemotologist doctor I know how you are feeling Will get back and let you know
  • Montana Boy
    Montana Boy Member Posts: 3
    #3
    CLL for 3 years
    Hi,
    Sorry about your misfortune of your diagnosis. My husband is in Stage 4 with his CLL. He was diagnosed at the age of 64. Considered to be in his early stages. He had to have chemo 6-8 months after however. His white blood cells produced faster than most CLL patients. HIs is considered a more aggresive CLL.
    AFTer 6 months of treatment, he was fine again for about 18 - 20 months, and now have prescribed chemo again, because his Lymph glands, and spleen are enlarged. This chemo will be a little shorter, and a new chemo drug he didn't have before....He is 67 yrs. old now.....Did any of your Dr.s tell you that you could do a Bone Marrow TRansplant if needed, in the future??? If I can answer any more of your questions, feel free to ask.. Sincerely,.Montana Boy's wife
  • luv2cut1
    luv2cut1 Member Posts: 288
    #4
    Montana Boy said:

    CLL for 3 years
    Hi,
    Sorry about your misfortune of your diagnosis. My husband is in Stage 4 with his CLL. He was diagnosed at the age of 64. Considered to be in his early stages. He had to have chemo 6-8 months after however. His white blood cells produced faster than most CLL patients. HIs is considered a more aggresive CLL.
    AFTer 6 months of treatment, he was fine again for about 18 - 20 months, and now have prescribed chemo again, because his Lymph glands, and spleen are enlarged. This chemo will be a little shorter, and a new chemo drug he didn't have before....He is 67 yrs. old now.....Did any of your Dr.s tell you that you could do a Bone Marrow TRansplant if needed, in the future??? If I can answer any more of your questions, feel free to ask.. Sincerely,.Montana Boy's wife

    CLL Since 2000
    Hi,

    My husband was diagnosed with CLL in 2000. He was stage I. He gradually progressed and was about ready to need his first treatment when he was diagnosed with head and neck cancer in 2008. He was treated and had recurrence in 2009 and was treated again. CLL counts came down and so far he still hasn't had treatment for that. He is doing well and has his next CLL checkup in November.

    Overall, he has felt good with his CLL. He has an enlarged spleen and some large lymph nodes and his white count has gotten as high as 160K. Other than that, his life has gone on as normal. With so many new treatments out there, we are hoping for the best.

    A good site I have found is CLL Topics. I think it is clltopics.org. The site reviews many of the new therapies, clinical trials, and many other topics related to CLL. It is very informative and gives you places to go for additional, reliable information.

    I hope we can all support each other during this uncertain journey we face.

    Myka
  • Nelsoncville
    Nelsoncville Member Posts: 1
    #5
    luv2cut1 said:

    CLL Since 2000
    Hi,

    My husband was diagnosed with CLL in 2000. He was stage I. He gradually progressed and was about ready to need his first treatment when he was diagnosed with head and neck cancer in 2008. He was treated and had recurrence in 2009 and was treated again. CLL counts came down and so far he still hasn't had treatment for that. He is doing well and has his next CLL checkup in November.

    Overall, he has felt good with his CLL. He has an enlarged spleen and some large lymph nodes and his white count has gotten as high as 160K. Other than that, his life has gone on as normal. With so many new treatments out there, we are hoping for the best.

    A good site I have found is CLL Topics. I think it is clltopics.org. The site reviews many of the new therapies, clinical trials, and many other topics related to CLL. It is very informative and gives you places to go for additional, reliable information.

    I hope we can all support each other during this uncertain journey we face.

    Myka

    his treatment
    He was treated and had recurrence in 2009
    ______________________________

    Hi, how was he treated? Can you tell me which drug was used?

    Thanks. I am 52 and have CLL.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #6
    Nelsoncville said:

    his treatment
    He was treated and had recurrence in 2009
    ______________________________

    Hi, how was he treated? Can you tell me which drug was used?

    Thanks. I am 52 and have CLL.

    To Nelsoncville
    Hi,

    I now realize my post was confusing. My husband was treated for head and neck cancer in 2008 and had a recurrence of that in 2009. He still has not been treated for CLL. The treatment for head and neck cancer (Cisplatin, Erbitux and radiation the first time; and Surgery, Taxol, Carboplatin and radiation the second time) brought his CLL counts down somewhat. He goes in for a checkup in November and we will see where he is then. Where are you in your CLL journey?

    Myka
  • kreale
    kreale Member Posts: 1
    #7
    luv2cut1 said:

    CLL Since 2000
    Hi,

    My husband was diagnosed with CLL in 2000. He was stage I. He gradually progressed and was about ready to need his first treatment when he was diagnosed with head and neck cancer in 2008. He was treated and had recurrence in 2009 and was treated again. CLL counts came down and so far he still hasn't had treatment for that. He is doing well and has his next CLL checkup in November.

    Overall, he has felt good with his CLL. He has an enlarged spleen and some large lymph nodes and his white count has gotten as high as 160K. Other than that, his life has gone on as normal. With so many new treatments out there, we are hoping for the best.

    A good site I have found is CLL Topics. I think it is clltopics.org. The site reviews many of the new therapies, clinical trials, and many other topics related to CLL. It is very informative and gives you places to go for additional, reliable information.

    I hope we can all support each other during this uncertain journey we face.

    Myka

    Cll and secondary head and neck cancer

    Myka,

    My husband also has CLL (diagnosed in Feb of 2013) and has had a recent diagnosis of head and neck cancer (oropharyngeal cancer - Stage III -HPV+ , no nodal involvment). The docs are recommending radiation for his head and neck cancer, along with possible chemo.  We're concerned that chemo may compromise his immune system and his CLL (He has been in Watch & Wait with his CLL). My husband's primary CLL doc is at MD Anderson and is followed locally at Dana Farber.  He had decided to pursue treatment for his head and neck cancer at Mass General Hospital in Boston.

    Did your husband undergo radiation and chemo for his head and neck cancer? Was it HPV+? 

     

    Thanks for sharing your experience.

  • Joe Nash
    Joe Nash Member Posts: 2
    #8
    Nelsoncville said:

    his treatment
    He was treated and had recurrence in 2009
    ______________________________

    Hi, how was he treated? Can you tell me which drug was used?

    Thanks. I am 52 and have CLL.

    2014-10-10.  I'm 47 now. at

    2014-10-10.  I'm 47 now. at 41 they found me with cll stage 4. I had my spleen removed and Finished chemo in dec of 09. I found out last month I'm out of remission. Looking to start new drug next week. If you text me I'll get name of drug and let you know. 

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