CLL

teributterfly
teributterfly Member Posts: 5
edited March 2014 in Leukemia #1
I am starting Chemo, for CLL soon would like to get feedback, on what to expect
«13

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Lyndawithay
    Lyndawithay Member Posts: 14
    #3
    Hi I'm Phil, this is my wife's account, but she doesn't use it. She had CLL stage three found in December 2004. Started chemo one day after bone marrow test to confirmed that it was CLL. (Yes you can get results that fast if your oncologist wants it) . She had 5 rounds of Rituxan, Fludarabine, and Cytoxan (spelling) - the last round was 1/2 strength due to low blood numbers. At first she had all the expected side affects, but the doc added many pills and after the second round she had no side effects but a lot of extra pills to take. The Rituxan goes after the CD20 marker. She did not have CD38 or Zap70. If you have those then the treatment is harder. She is in REMISSION since may 2005. However they found that she also has non small cell lung cancer (NSCLC) for which she had 4 rounds of another chemo and is also in REMISSION for that. The doc is not even checking for the CLL - no bone marrow test - since the NSCLC is much worse. He has told us that the CLL will probably come back but it has been a year now and nothing has showed up. The NSCLC will also come back but so far she is in remission for about 3 months. It took 6mo for her blood to get back to near normal after the CLL chemo, but that was when the NSCLC chemo started and that sent it back down. She still gets shots every two weeks to build up her blood numbers. Do a search on the three chemo drugs I mentioned and you will find out a lot about CLL. ***** PHIL
  • library1j
    library1j Member Posts: 6
    #4
    I just signed in for the first time, trying to find someone else with CLL. I was diagnosed in December 2006. I was just wondering how you are doing and how your chemo treatments went?
  • daisybob
    daisybob Member Posts: 1
    #5
    library1j said:

    I just signed in for the first time, trying to find someone else with CLL. I was diagnosed in December 2006. I was just wondering how you are doing and how your chemo treatments went?

    Hey library1j,
    This is also my first time on this site. I was diagnosed in Jan. 2006. I'm still at a stage 1 and in the watch and wait. Its so hard to wait, I personally feel that it should be attacked while it is small and I might have a better chance. Does anyone out there know of any clinical trials right now for stage one. I do have enlarged lymph glands, tire easily, but white counts are still under 20,000. Anyway would like ot her from others, at times you feel all alone.
  • 60Patrick
    60Patrick Member Posts: 6
    #6
    library1j said:

    I just signed in for the first time, trying to find someone else with CLL. I was diagnosed in December 2006. I was just wondering how you are doing and how your chemo treatments went?

    Well, I guess this makes 3 of us! I was told by my GP back at Christmas of 2003 that I only had an infection. Then this April the lymphocytes were up again and when my GP sent the results up the ladder the hematologist didn't like the numbers. So much so that my GP called me in class on my cell phone to advise me, much to the caustic amusement of my students of the day(Hey, Sir, no cells in class, eh?!)From there I got referred to the dreaded oncologist. It's the only waiting room where they have juice and cookies and always call you by your first name. The flow cytometry confirmed CLL. The problem is it can have a good or a poor prognosis depending on certain types of chromosome damage; faith on the part of doctors in various tests to determine this vary from time to time and place to place. I'm paying for FISH testing on my own buck to check the chromosomes. My doctor is using "watch and wait", which I can understand. I just want to know more about what we're watching and waiting for! What's your lymphocyte count? Have you had flow cytometry or FISH testing? We may both be a long way from chemo(ugh!). Physically I'm okay. What's hard is telling people close to you that you think should know. They keep crying. Bye the way, have you heard from teributterfly?
  • 60Patrick
    60Patrick Member Posts: 6
    #7
    daisybob said:

    Hey library1j,
    This is also my first time on this site. I was diagnosed in Jan. 2006. I'm still at a stage 1 and in the watch and wait. Its so hard to wait, I personally feel that it should be attacked while it is small and I might have a better chance. Does anyone out there know of any clinical trials right now for stage one. I do have enlarged lymph glands, tire easily, but white counts are still under 20,000. Anyway would like ot her from others, at times you feel all alone.

    Dear Daisybob: a good site for current developments or clinical trial resources is "CLL Topics" which can be googled. Stage one is like the calm before the storm. I wish the doctors would spell out more clearly what we watch and wait for, and what will then be done, so we had a definite image in our heads instead of, as in my case, a sort of a foggy field in evening twilight. My count is not as high as yours, but we're on the same track.
  • library1j
    library1j Member Posts: 6
    #8
    60Patrick said:

    Well, I guess this makes 3 of us! I was told by my GP back at Christmas of 2003 that I only had an infection. Then this April the lymphocytes were up again and when my GP sent the results up the ladder the hematologist didn't like the numbers. So much so that my GP called me in class on my cell phone to advise me, much to the caustic amusement of my students of the day(Hey, Sir, no cells in class, eh?!)From there I got referred to the dreaded oncologist. It's the only waiting room where they have juice and cookies and always call you by your first name. The flow cytometry confirmed CLL. The problem is it can have a good or a poor prognosis depending on certain types of chromosome damage; faith on the part of doctors in various tests to determine this vary from time to time and place to place. I'm paying for FISH testing on my own buck to check the chromosomes. My doctor is using "watch and wait", which I can understand. I just want to know more about what we're watching and waiting for! What's your lymphocyte count? Have you had flow cytometry or FISH testing? We may both be a long way from chemo(ugh!). Physically I'm okay. What's hard is telling people close to you that you think should know. They keep crying. Bye the way, have you heard from teributterfly?

    Hi Patrick,
    Sorry that your counts are higher. At last check, mine were at 19,000. I also found out that I have a marker called CD38 at 56%. I haven't heard from anyone with CLL that can tell me much about the marker. Have you heard from your FISH testing?
  • beth51
    beth51 Member Posts: 5
    #9
    library1j said:

    Hi Patrick,
    Sorry that your counts are higher. At last check, mine were at 19,000. I also found out that I have a marker called CD38 at 56%. I haven't heard from anyone with CLL that can tell me much about the marker. Have you heard from your FISH testing?

    library1j, there is an excellent article at annals.org (site for Annals of Internal Medicine) that explains everything about early-stage CLL, from diagnosis to prognosis, very thoroughly. I know you will find it very helpful, as I did. Here is the link: http://www.annals.org/cgi/reprint/145/6/435.pdf
  • library1j
    library1j Member Posts: 6
    #10
    beth51 said:

    library1j, there is an excellent article at annals.org (site for Annals of Internal Medicine) that explains everything about early-stage CLL, from diagnosis to prognosis, very thoroughly. I know you will find it very helpful, as I did. Here is the link: http://www.annals.org/cgi/reprint/145/6/435.pdf

    Hi Beth,
    Thanks. The site was very helpful. I would still like to hear from someone that has the CD38 marker. Has it caused a quicker progression of the disease? Does anyone out there have a personal experience with it or a realative with it?
  • 60Patrick
    60Patrick Member Posts: 6
    #11
    library1j said:

    Hi Beth,
    Thanks. The site was very helpful. I would still like to hear from someone that has the CD38 marker. Has it caused a quicker progression of the disease? Does anyone out there have a personal experience with it or a realative with it?

    I've been out of touch with the site. Sorry about that. All other things equal, a high CD38 increases the chances of a swifter progression of CLL to treatment stage.(http://cll.acor.org/cllfaq/answers/24.html)
    Another quote:
    True, low CD38 expression was still an indicator of good prognosis, and patients with high CD38 expression typically had more aggressive disease and poorer survival odds. But the two indicators did not track each other exactly, and that was a disappointment.(http://clltopics.org/PI/Type.htm)
    I hope this is helpful, and good luck to you all.M y own personal CD38 levels are low; still, you need larger numbers of cases to get patterns.
  • TimothyCLL
    TimothyCLL Member Posts: 1
    #12
    60Patrick said:

    I've been out of touch with the site. Sorry about that. All other things equal, a high CD38 increases the chances of a swifter progression of CLL to treatment stage.(http://cll.acor.org/cllfaq/answers/24.html)
    Another quote:
    True, low CD38 expression was still an indicator of good prognosis, and patients with high CD38 expression typically had more aggressive disease and poorer survival odds. But the two indicators did not track each other exactly, and that was a disappointment.(http://clltopics.org/PI/Type.htm)
    I hope this is helpful, and good luck to you all.M y own personal CD38 levels are low; still, you need larger numbers of cases to get patterns.

    Going with Campath (chemo) for CLL, I caught CMV anyone else?????
  • library1j
    library1j Member Posts: 6
    #13
    TimothyCLL said:

    Going with Campath (chemo) for CLL, I caught CMV anyone else?????

    Timothy,
    What is CMV?
  • 60Patrick
    60Patrick Member Posts: 6
    #14
    library1j said:

    Hi Patrick,
    Sorry that your counts are higher. At last check, mine were at 19,000. I also found out that I have a marker called CD38 at 56%. I haven't heard from anyone with CLL that can tell me much about the marker. Have you heard from your FISH testing?

    FISH
    My FISH results are normal. Of course a #13 deletion would have been good news. However, one might want to read the "FISHing in murky waters" article at the CLL topics website.There is also a big CLL convention in Niagara Falls ON on April 24-26 2009 if you're interested.
  • SandeeG
    SandeeG Member Posts: 2
    #15
    daisybob said:

    Hey library1j,
    This is also my first time on this site. I was diagnosed in Jan. 2006. I'm still at a stage 1 and in the watch and wait. Its so hard to wait, I personally feel that it should be attacked while it is small and I might have a better chance. Does anyone out there know of any clinical trials right now for stage one. I do have enlarged lymph glands, tire easily, but white counts are still under 20,000. Anyway would like ot her from others, at times you feel all alone.

    Stage 1 CLL
    Hi. I'm new to the site. I have Stage 1 CLL and just last week found out that my count has gone to 20,000 from 12,000 just last July when I was diagnosed. I just want to meet people who are in the same boat as I am and feel like I am not alone. I've kind of given up hope that I will live very long and need help getting past that. From what I read, I will be lucky to live 15 years and I am only 48. Any reply would be appreciated.
  • virginiapi
    virginiapi Member Posts: 1
    #16
    SandeeG said:

    Stage 1 CLL
    Hi. I'm new to the site. I have Stage 1 CLL and just last week found out that my count has gone to 20,000 from 12,000 just last July when I was diagnosed. I just want to meet people who are in the same boat as I am and feel like I am not alone. I've kind of given up hope that I will live very long and need help getting past that. From what I read, I will be lucky to live 15 years and I am only 48. Any reply would be appreciated.

    Don't despair!
    Hi, SandeeG. I was diagnosed with CLL in 2002. Still in watch-and-wait. Have no symptoms except elevated WBC. My WBC has been running around 60,000 (with one spike to 80,000 due to a severe bladder infection a couple of years ago). However, my test last week showed a jump to 110,000 (in 3-weeks). My oncologist wants to hold off and test again in two months - then look at treatment possibilites if it's still going up. I know what you are going through, and I want to tell you to hang in there. You are not alone. Statistics are scary, but a large number of patients never need treatment at all. Just a couple of things: Make sure you have a doctor whom you trust completely. Even then, you should get a second opinion. My doctor encouraged this, and even set it up for me. The doctors at Duke Medical Center were in complete agreement with my doctor after extensive examinations there, which makes me feel that I am getting the right care (this matters A LOT!). I'm not a doctor, but I'm in your corner. If I can help you in any way please call on me.
  • bkblpp
    bkblpp Member Posts: 1
    #17
    What to expect with CLL
    Hi,

    I've had CLL for probably more than 10 years. I see a hematologist/oncologist about every three months or so. Sometimes more often, sometimes less often. I've received chemo maybe about 6 times over the years and and due to be on it again by the end of this year or earlier. I take leukerin which is a pill usually for a couple of months, with checks from the doctor during. So far it has worked and brought down my white count. I have no ill effects from it. Sometimes I take 2 a day, or 1 a day or 1 every other day, whatever the doctor says.

    I've also had a melanoma removed about 8 years ago, get checked every year for any reoccurance. I've also had two breast biopsies, but they were only cysts.

    It can be scary when you first learn about this, but I am very used to it. Most likely I will not die from it, but from something else. Nevertheless, I need to get checked regularly and eventually may be on a more potent medicine.

    I have several other medical problems, the worst being orthopedic. Keep up your courage and be good to yourself.
  • tf168wife
    tf168wife Member Posts: 21
    #18
    SandeeG said:

    Stage 1 CLL
    Hi. I'm new to the site. I have Stage 1 CLL and just last week found out that my count has gone to 20,000 from 12,000 just last July when I was diagnosed. I just want to meet people who are in the same boat as I am and feel like I am not alone. I've kind of given up hope that I will live very long and need help getting past that. From what I read, I will be lucky to live 15 years and I am only 48. Any reply would be appreciated.

    Stage 1 CLL
    Sandee - so happy to meet you. I'm Dori, and I have a very similar story. I am also 48 and was diagnosed with CLL last November. I am not in any treatment, as I am fairly symptom free. My WBC count is 24,000, up from 19,000 in November, so I think that is pretty good. So when were you diagnosed? How do you feel? Please don't give up hope - talk to me.
  • tf168wife
    tf168wife Member Posts: 21
    #19
    bkblpp said:

    What to expect with CLL
    Hi,

    I've had CLL for probably more than 10 years. I see a hematologist/oncologist about every three months or so. Sometimes more often, sometimes less often. I've received chemo maybe about 6 times over the years and and due to be on it again by the end of this year or earlier. I take leukerin which is a pill usually for a couple of months, with checks from the doctor during. So far it has worked and brought down my white count. I have no ill effects from it. Sometimes I take 2 a day, or 1 a day or 1 every other day, whatever the doctor says.

    I've also had a melanoma removed about 8 years ago, get checked every year for any reoccurance. I've also had two breast biopsies, but they were only cysts.

    It can be scary when you first learn about this, but I am very used to it. Most likely I will not die from it, but from something else. Nevertheless, I need to get checked regularly and eventually may be on a more potent medicine.

    I have several other medical problems, the worst being orthopedic. Keep up your courage and be good to yourself.

    what to expect
    bkblpp - thank you for the posting. To those of us newly diagnosed, it is a lot to take in. WBC, flow cymetry, FISH, staging, chromozones, etc. it can be alot. And to be honest, I really have to pay attention to what I should and shouldn't....pay attention to! I know symptoms are worse than counts. It is still encouraging to have someone lay things out for you from time to time and I guess personally, I want to know what I am in for!
  • tf168wife
    tf168wife Member Posts: 21
    #20
    virginiapi said:

    Don't despair!
    Hi, SandeeG. I was diagnosed with CLL in 2002. Still in watch-and-wait. Have no symptoms except elevated WBC. My WBC has been running around 60,000 (with one spike to 80,000 due to a severe bladder infection a couple of years ago). However, my test last week showed a jump to 110,000 (in 3-weeks). My oncologist wants to hold off and test again in two months - then look at treatment possibilites if it's still going up. I know what you are going through, and I want to tell you to hang in there. You are not alone. Statistics are scary, but a large number of patients never need treatment at all. Just a couple of things: Make sure you have a doctor whom you trust completely. Even then, you should get a second opinion. My doctor encouraged this, and even set it up for me. The doctors at Duke Medical Center were in complete agreement with my doctor after extensive examinations there, which makes me feel that I am getting the right care (this matters A LOT!). I'm not a doctor, but I'm in your corner. If I can help you in any way please call on me.

    update
    Hi Virginiapi! Just wondering how you are feeling? You have had CLL for 7 years and are still symptom-free? Except for the WBC, of course. I was just diagnosed last November, and my WBC is pretty much the same as it was then, however, everything else is changing. The neutrophil to lymphocyte ratio, RBC, platelets, but even my kidney functions - creatinine and potassium are low. Anyway, I'm very tired, and odd things keep happening - like lightheadedness, or pain in my legs. Anyway, just wondering if all of these things are just the normal flow of CLL.
    Please let us know how you come out at your next appt, ok?
  • toomuchfun
    toomuchfun Member Posts: 1
    #21
    library1j said:

    I just signed in for the first time, trying to find someone else with CLL. I was diagnosed in December 2006. I was just wondering how you are doing and how your chemo treatments went?

    I was told that I have CLL
    I was told that I have CLL this past Febuary and have gone through 8 chemo treatments so far. The doctor is very happy with the way my blood count is going back to normal. I have read that with this leukemia it will alwys be there is that true. Also due to the cost of my medical insursance, I pay for Cobra now i need to find some place to help cover the cost of this.

Discussion Boards