Hello - I just joined this network because I thought I could benefit from reading about other people's experiences, especially during early diagnosis.  I've Googled and learned a lot about MBL and CLL test results and numbers. I might not even eventually have CLL, but all of my test results so far make me feel like I might be on my way.  I would appreciate any comments or sharing of experiences people have had when they first found out they might have CLL. In August 2020 , because of fatigue, constant body aches, and just generally feeling lousy most of the time, my doctor ordered a ..read more

I am a 34 yr old father/husband who was diagnosed in 2018 with T-cell ALL. After 2 failed SCT and multiple targeted chem treatments, I was told I am out of options and given roughly 4-6 months to live. Has anyone else here been told this? If so, how have you been handling it? I am really having a hard time and could really use some advice/help.  Discussion boards:  Leukemia ..read more

Hello everyone,   I was diagnosed in 2019 and have failed to get my BCR ABL1 to 0.1. I started on Imatinib and then a standard dose of Sprycel. I'm currently on a high dose of sprycel, but my numbers are going up. I was tested for any additional mutations in 2020 (no new mutations or explanations for resistance) and just had the test redone (waiting on results). Depending on what we find I may be switched to Nilotinib. My oncologist has given me until the end of the year before refering me to Stanford or a different health system. I've been taking my medication as prescribed (at the same ..read more

I have splenic marginal zone lymphoma, was treated with rituximab (which kills all B lymphocytes), last dose on Dec 9th, 2020.  I had a first Pfizer shot on Jan 24, 2021, and the second three weeks later.  There is a study going on which is testing for antibodies, and titers, after vaccination in people with leukemia and lymphoma.     https://www.ciitizen.com/LLSCOVIDStudy/?utm_campaign=LLS%20National%20Patient%20Registry&utm_medium=email&_hsmi=116026146&_hsenc=p2ANqtz-8PSs3z09E1zBPKQi45sIDgO_0RWcoDXMphNVx9s8-NB4rrcc0bNJWFOROIBPPTrtPwY2QIs-dOAhTD853ReeDcN0 ..read more

Just found and joined this forum, my name is Bruce and I have acute lymphoblastic leukemia Philadelphia Positive  December 2016.    BCR/ABL by PCR was negative for p210 and p190 assays, but was positive for rare e1-a3 variant   This is one of the presumptive diseases caused by Agent Orange and cantaminated camp Jejune drinking water. At the end of 2016 I was experiencing bad pain all over so finally went to the DR he gave me a blood test and found my platelet level had dropped to just 12 and 3 months before was 386. So he sent me to the hospital that same day where I had a ..read more

Diag with Stage 1 CLL in August - Still wrapping my head around things - Curious to hear of any data from studies, or even anyone's anecdotal data, re best type of climate for someone with CLL - Idea was to move to FL about this time in my life, just turned 60, but really we could move anywhere - just wondering about climate effects on daily living as well as long term affects - any info is greatly appreciated - and good luck to all on this site - Thanks  Discussion boards:  Leukemia ..read more

Has anyone got any success stories of getting pregnant after having AML and a bone marrow transplant or their partner having it and getting them pregnant after it?  my fiancé's doctor has said it won't ever happen but I'm praying there a small chance it could some day  Discussion boards:  Leukemia ..read more

Our adult son was recently diagnosed with acute T-cell lymphoblastic leukemia and underwent one month inpatient Hyper-CVAD induction chemo with methotrexate (both infusions and spinal intrathecal) plus pegaspargase. Initially his hemoglobin was very low (4) with WBC through the roof, so received packed RBC transfusions and platelets, and a combination of antibiotics. There has been some mention of a bone marrow transplant, but no specifics were given. We are unable to travel to be with him due to the COVID restrictions, and our own health. And because he is an adult, we have had only very lit ..read more

Hi, everyone!  By way of background, I'm a 31-year-old male and was diagnosed about two months ago with AML. I achieved remission after my second round of chemotherapy and am now gearing up for a transplant. I have a younger sibling who is a half-match and am told that I don't have any suitable unrelated matches. I've sought opinions from two different hospitals: one is recommending using my sibling as the donor (haploidentical transplant), while the other wants to use unrelated cord blood. Does anyone have experience with either method (or been in a situation where they've had to make a ..read more

My husband just passed away 2 days ago. I am numb, broken-hearted, and unable to sleep. I found my way to this forum searching for any semblance of comfort. I am hoping that writing this will be a therapeutic relief for me. My husband was diagnosed with the rare and aggressive mixed phenotype acute leukemia at 34yrs old on February 20, 2018. You think you can prepare yourself for the worst, but you can’t. I am a broken mess of devastation, anger, regret, and sorrow. His only hope was a bone marrow transplant. Everything was ready to go, had the donor and doctor, but due to many health obstacl ..read more