T-Cell Prolymphocytic - CLL ----- Please - Am I all alone???

BevH
BevH Member Posts: 1
edited September 2011 in Leukemia #1
Everything I can find online about T-Cell is very negative. Is there anyone out there that has had a positive result to treatment? After only 3 weeks of Compath infusions I am feeling very noticably better than I did 2 months ago. Will it continue or should I be waiting for the other shoe to drop?
My children and friends have been very supportive but it help to talk to others.

Comments

  • catwink22
    catwink22 Member Posts: 281
    #2
    MSNBC article
    Hi Bev,
    I just came across this article on MSNBC today 9-13-11, here is the link, but I don't want you to think this is an advertisement, so I copied the first paragraph also.

    http://www.msnbc.msn.com/id/44498065/ns/health-the_new_york_times/#.Tm-PEuzbzNw

    "PHILADELPHIA — A year ago, when chemotherapy stopped working against his leukemia, William Ludwig signed up to be the first patient treated in a bold experiment at the University of Pennsylvania. Mr. Ludwig, then 65, a retired corrections officer from Bridgeton, N.J., felt his life draining away and thought he had nothing to lose.

    Doctors removed a billion of his T-cells — a type of white blood cell that fights viruses and tumors — and gave them new genes that would program the cells to attack his cancer. Then the altered cells were dripped back into Mr. Ludwig’s veins.

    At first, nothing happened. But after 10 days, hell broke loose in his hospital room. He began shaking with chills. His temperature shot up. His blood pressure shot down. He became so ill that doctors moved him into intensive care and warned that he might die. His family gathered at the hospital, fearing the worst.

    A few weeks later, the fevers were gone. And so was the leukemia."

    I wish I could have more information for you and your treatment specifically, but I thought this might be encouraging news. I am truly hopeful for all the cancers that this is a breakthrough we've been praying for.
    Best Wishes!
    Cat
  • sgail
    sgail Member Posts: 1
    #3
    T- Cell Prolymphocyctic Leukemia
    BevH:

    You are right just about everything you read is negative on T-cell P L.

    However my T-cell was discovered early because of my Prostate cancer PSA and blood work

    June 2010. There is no doubt is it T-cell Prolymphocytic Leukemia. I went on Campath

    around September of 2010 for 12 weeks - 3 shots a week. Only one bad day of a high fever when they upped doage from 10 to 30 ml. Anyway. I drew blood every month for the next 6 and doctor felt happy with where we where. I feel great I do get a little tired and and disease in the bone marrow is there but hasn't progressed much itf at all since last year

    Most of the Bllod work is in the normal range.slightly lower WBD, but most things in the mid range normal. I don't know how long I will feel okay. I just have taken this thing as a process that I have to deal with , but now I rarely think about it except when I decide to look up information on the disease and honestly, I am a lot better off NOT doing that. Bev I tryly believe the key is how you feel. If you have no pain and can do justs about everything normally you have to take that for what it is worth. and just keep it monitored. Dr. says no matter eventually I need to consider bone marrow or stem cell. I personally do not like htat idea , hence I do not think about it and , any way we are not looking at it now and I doubt I will find a donor anyway, so i do not worry about it. If the Campath is working. That is great it has been 16 months since I was diagnozed and and 8 months since the last campath shot. So Bev hopefully, you will continue to respond well to the campath after the fact as I have. No guarantees, but you are not alone. And even if you were this a journey that you and I have to take. What are the alternatives. You have a supportive family and that makes a big difference. I have my wife, but I keep it very very light and hence she is find. You just take every day like it is a NORMAL day, don't get caught up in the crap about treat everyday like it is your last. First of all that is crazy an would send you to the luny bin anyway. As long as you feel good, respect the diease but do not pay hommage to it. Live your life as normally as you can. My prayers are with you

    Sincerely

    Steve
  • Sky@zt4
    Sky@zt4 Member Posts: 3
    edited September 2019 #4
    T cell pro-lymphocytic Leukemia

    Hi, you are not alone, my long time partner, of 20 years has been diagnosed with T cell pro lymphocytic leukemia he has 6 more weeks left of treatment with Campath and is feeling and doing better, but once the Campath is completed , Dr. are saying his disease will come back. He would need a bone marrow transplant, to Help increase his odds of the disease not coming back. Has anyone had a bone marrow transplant after treatment for T cell pro lymphocytic leukemia? I am really scared for him, I know this is a rare form of leukemia. I noticed that these comments are from 2011, I’m hoping and praying if you are there, you are living your life today, disease free. 

    sincerely Fran

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