GailB's Journey with Slow Growing, Chronic Lymphocytic Leu...

Patient: Leukemia > Chronic Lymphocytic Leukemia (CLL) > Slow Growing

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 60

  1. 1
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    over 5 years ago
    GailB's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The chemo last year 2011 was not to bad. The last 2 rounds were the worse and made it almost impossible to work. It took nearly 6 months to feel normal again only to have the SLL came back. The CLL has stayed in remission.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  2. 2
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    over 5 years ago
    GailB's Avatar

    Other

    Decision Point

    Got a 2nd opinion this year when SLL showed up. Now I am more confused than ever. One recommendation is to wait for awhile longer then do Chemo again Dr. does not believe in Stem Cell Transplant. He also believes that I will live a long life with this disease. 2nd opinion is to do a Stem Cell Transplant before the CLL comes back to give me the best chance to survive, since I am Zap 70+ and CD 38+ and have the aggressive form of the disease. I can't find any info on Stem Cell Transplants and CLL.

    1 Comment
  3. 3
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 4 years ago
    GailB's Avatar

    Fatigue (tiredness)

    Side Effects

    I am hoping that this will go away but so far it has not since I was diagnosed in 2010. The SLL showed back up at my 6 month checked up after completing 6 rounds of FCR so my body has never had a chance to heal itself. 6 Rounds of Treanda and Rituxin made the fatigue horrible. I am now 6 weeks out from the last round and the fatigue is getting better. It is of course not going away as fast as I would like but as long as it is going away that is all that matters.

    0 Comments
  4. 4
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 4 years ago
    GailB's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    Thankful that it just comes and goes and does not stay all the time.

    1 Comment
  5. 5
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 4 years ago
    GailB's Avatar

    Chemo brain

    Side Effects

    Not sure exactly what this is. But focusing and concentrating is very difficult these days. i have to write things down to remember. Takes me longer to do things than it use to.

    0 Comments
  6. 6
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 4 years ago
    GailB's Avatar

    No Stem Cell Transplant

    Decision Point

    2013 After going to John Hopkins last fall decided to never go back to MD Anderson as John Hopkins agreed with my local Dr. did 6 rounds of Treanda and Retuxin

    0 Comments
  7. 7
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 4 years ago
    GailB's Avatar

    Drug or Chemo Therapy

    Held out until January by sheer determination. Did 6 rounds of Treanda and Rituxin. Started out great and actually had some days that I actually felt like my old self but that only lasted for the first 2 rounds. 2 days after the 3rd round I got a very bad eye infection along with shingles in my eye. That took me out for 10 days flat on my back in bed. Finished the next 3 rounds without any other problems. I was doing my Chemo on Thurs. & Fri. and by Sun. the muscle weakness would set in and with each round it would be worse. I am 6 wks. out from the last round and am slowly regaining my strength. The spirit is willing but the body is not.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    1 Comment
  8. 8
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    almost 3 years ago
    GailB's Avatar

    Other Care

    This person has yet to add any details about this experience.

    0 Comments
  9. 9
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 1 month ago
    GailB's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Well my CLL is just not cooperative at all. Did not get a long remission after doing the Treanda & Retuxin. Held out as long as possible and got multiple opinions and in the Fall of 2016 started doing Imbruvica but that only pushed the CLL so far back and then we were not making and head way only holding it where it was, so in May started on Venteclax and made great head way in my bone marrow and blood but Lymph nodes were only getting minimally smaller. I decided to go ahead and do a Stem Cell Transplant when I achieved MRD or CR if it looked like that was going to be possible. My brother is a perfect match for me and that was one of the reasons that I decided to do it. Never got that far as I was offered me an opportunity to do a trial so that is what I am going to do. If it does not work the Stem Cell Transplant will still be an option.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  10. 10
    • GailB
    • Experience with Slow Growing, Chronic Ly...
    about 1 month ago
    GailB's Avatar

    Car Engineered NK 2016-0641 MD Anderson

    Clinical Trial

    I go next week to do this. They will be taking Natural Killer Cells from and Umbilical Cord and Genetically Reengineer them to Kill the CLL. The thing that worries me the most is that they have only done it to 2 other people. The first one was in July and has done very well. The second person got the cells last week during Hurricane Harvey and they are doing fine. The goal of this trial is to actually cure the CLL or at the minimum give me an extended remission. Hoping for the cure but will settle for 2-3 yrs remission something I have not been able to achieve since I was diagnosed in 2011

    0 Comments