jalise Member Posts: 4 Member
edited February 8 in Leukemia #1

Hello there,

I have LGL Leukemia and im wondering if anyone can share their experience with oral cyclophosphamide. I’m going to start it here soon and was wondering how people handled it. I took methotrexate before and my side effects were mild, just really tired and little nausea. Cyclophosamide seems to have a longer list of side effects, so I’m curious. I’m hoping I don’t lose my hair on this one.

thanks everyone!


  • po18guy
    po18guy Member Posts: 1,377 Member

    Sorry to hear this. I can offer only very general experience, as I received the cyclofosfamide (Cytoxan) in 2008, but only as part of a 5-drug combo. Therefore, it is really difficult to segregate the effects out. I survived those five drugs at max doses and went immediately into three additional dose-intensive drugs, making it a four month saturation. The oral forms of the drugs "tend" to produce milder cumulative side effects, as there is less bio-availability of the drug. Although this may be of little help, I have now received 21 anti-cancer drugs and seem to be in possession of most of my faculties. Even if you experience hair loss, it might be helpful to balance that against what untreated leukemia will do. In the end, I consider all of this to be the "cost of living."

  • jalise
    jalise Member Posts: 4 Member

    Thanks so much for your response. This whole process of getting diagnosed has been so confusing and it’s hard to anticipate or plan what will come. Im definitely grateful that have a good care team , the adjustment to what my life looks like now has just been a little overwhelming, but I do have a life with this diagnosis! Do you have LGL or a different type of leukemia?

  • po18guy
    po18guy Member Posts: 1,377 Member

    It is always good to learn about your diagnosis. The Leukemia and Lymphoma Society has great teaching resources.

  • Neda55
    Neda55 Member Posts: 5 Member
    edited March 8 #5

    My father was diagnosed with T-LGLL last year in mid-August. He is 79, at the time of diagnosis he did not have any symptoms, but his CBC was abnormal. He started on Methotrexate (MTX )15 mg /weekly and after the first dose he had a huge drop on his Hbg (from 8.1 to 5.3). He has been on MTX for 4 months and his doctor increased his dosage from 10 mg to 20 mg after 2.5 month. While he has been on MTX he also gets blood transfusions every 2 or 3 weeks depending on his HGb level (he gets that when his HGB below 8).

    Even though his doctor added Aranesp injection 200 mcg every other week for the last 2 months, his Hgb has not shown any improvement. He is very dependent on blood transfusions which he hates a lot and his doctor is also concerned about the Iron overload.

    Last month he showed some partial improvement on MTX (Has not had any transfusions for one month) but then his Hgb dropped from 8.1 to 6.5 in 1 week.

    I would really like to know if any of you have the same story and how/ what you did to help with Anemia caused by T-LGLL. Is it too soon to change to Cytoxan?