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No antibodies after Covid vaccine - read this
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…
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Brucecav
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…
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Climate
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…
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T-Cell Large Granular Lymphocytic Leukemia
I was diagnosed 2 years ago with T-Cell Large Granular Lymphocytic Leukemia. I am 44 years old and haven't found a whole lot of information. I am on a weekly low-dose (12.5 mg) of Methotrexate and have pretty much plateaued. I would love to hear from someone who is in the same situation.
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T-cell lymphocytic leukemia
Hi, my long term partner was disgnosed with T-cell lymphocytic leukemia, which is a rare blood cancer, he has been getting treatment with Campath and is now going into remission, then follows a bone marrow transplant, is there anyone out there, who has T-cell lymphocytic leukemia, and being treated or has had bone marrow…
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Food as medicine
Has anyone tried any alternative methods to heal with AML while going through the standard treatments? If so can you share what has worked.
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recurrence of cml
My grandkids maternal grandma has a recurrence of cml after chemo, full body radiation and BMT after 7.5 years. She is presently taking Gleeved. Can anyone give me any info on this disease and possibly a NEW book I can purchase for her? Thank you so much for any help Dyana
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34y/o and I just found out a few days ago I have CML.
My stoach started hurting real bad about 2 onths ago, and I went to the er. They said I was just constipated and set me home. But the paid never went away so I went and saw another doctor. This time, they did blood work. The results came back, and I was told I needed to see an Ouncolagist. I didnt even know what kinda…
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24 year old females diagnosed with Chronic Myelogenous Leukemia...
Hi, I'm new here... I have just been diagnosed with Chronic Myelogenous Leukemia... I am terrified, and very confused. I am just hoping for some support.... and to hear some success stories from people who have fought this battle before... Ryan
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Angry Survivor
I am trying to help my dear friend whose husband is a five-year survivor of leukemia. His doctors recently told him that he may live another ten years, and for some reason, he has become very angry with her (not others), saying very unkind things, being distant and cold. Naturally, she is crushed. Does anyone know of this…
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Unrelated Cord Blood vs. Haploidentical Transplant
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…
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cll side effects
my mom, 80 years old, was diagnosed with stage 4 cll - she has had her initial chemo and is now undergoing maintenance chemo - she has developed a side effect that both her oncologist and dermatologist say they have never seen before - the problem starts as a small red discoloration that over the course of a day or so…
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T-Cell Prolymphocytic - CLL ----- Please - Am I all alone???
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…
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T-cell pro lymphocytic leukemia
Hi, everyone my long time partner 65 yrs old, Of 20 years, was diagnosed with T-cell pro lymphocytic leukemia, he is almost completed his course of treatment, on Campath and is in remission and has done well, on the Campath, he will soon get another bone marrow test, to see if all cancer cells have gone, then they will go…
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A story of hope & IMETELSTAT - Treatment for MDS & MF
Hello Patients, Survivors, Caregivers, Family Members and Medical Professionals of cancer. I am here to tell the story of my best friend who passed away several years ago from various forms of sarcoma. By the time it was over probably too many to even keep track of. This is not only a story of sorrow but most importantly…
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AML with FLT3 marker
I was diagnosed July 26, 2012. Had SCT from fully matched sibling on December 21 and am now almost 4 months post transplant with no complications. But the FLT3 has me very worried. From what I read it's almost certain to reactivate the AML even after a transplant. The doctor considering putting me on Nexavar as a…
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Looking for ALL PH Positive adults for suggestions
Hello, Lately diagnosed with ALL PH Positive. Looking for suggestions from those who are victims of same disease undergoing treatment or in remission. Would like to learn from experiences in order to be prepared better.
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Looking for ALL survivors who had 2nd transplant
Hello, I decided to finally reach out for some support from other survivors. It’s been hard to find other ALL survivors, but I hope to hear something. I got ALL in July 2012, age 57. Thought I had fibromyalgia, but not so. After a stem cell transplant from related donor in Jan.2013, the ALL returned in July 2017. So, after…
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Prognosis of 65yrs old male acute leukemia with 17%blasts
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ALL ph+ at 65yrs
Hi - new to this group as my mum has just been diagnosed & stared chemo on a 21 day cycle. I would love to hear of others in a similar age group who have battled this. My mums prognosis isn't good due to her age but she seems to be handling the chemo fine. The main issue seems to be the steroids making her manic and has…
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32 year old male...27 year survivor of Acute Lymphocytic Leukemia, Null cell
Hi, My name is Freddie, I am 27 year survivor of ALL. I am new to this site. I will give a few brief details of when I was diagnosed, and the amount of time I was on chemotherapy, I am not sure if the amount of time is the same today as it was in 1981. I was diagnosed on August 27, 1981. I was put in to remission in…
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Graft vs Host Disease
Hi, I'd be interested in hearing from people who are experiencing this, particularl of the mouth. Treatments haven't been successful and research tells me there is no cure and that I'm at a significant risk for oral cancer. Thoughts? Advice? Experineces?
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inversion 3 survivors?
Any AML Inversion 3 survivors out there? I need remission stories and hospitals being treated ASAP. Thanks!!
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yet to be confirmed
i have yet to be comfirmed but biopsy is in the works to find out type and what treatment i guess wbc has been out of wack for going on 3 yrs now and finaly got a dr that sees the patten and waiting on hemotollgy oncology appointment as we speark but i already was informed there will be a marrow biopsy im a 2 time survivor…
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MONOMAC SYNDROME
Hi there im steve I have been recently been told I have MONOMAC syndrome ie immune deficiency. And will need to get a bone marrow transplant to save me getting leukemia down the line, questions I have are how long after cemo are everyone back to work? I am 31. Also how long do u feel crap for ie being sick etc, know…
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New diagnosed CLL waiting for staging 48 year old female
I am a young one I am told ... to get this so that really freaks me out ... my WBC has been high for a year and my atypical lymphocytes 27% .. went to hemotology oncologist and he is sure i have CLL lower stages.. and slow growing i pray. he took 10 vials of blood from me to determine i dont have any aggressive subsets...…
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CLL and Lgl
Good morning. I’m hoping some on this board can assist. Two years ago I was diagnosed with Cll. I also have Lupus, RA,asthma, and low iGg levels. I had a recent hospitalization and am now going to Dana-Farber. My questions are these: 1) is ther anyone out there have similar conditions? Can/would you share some experiences;…
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16 YR Survivor of Acute Monocytic Leukemia-Chronic Pain and Fatigue
My name is Chris. I was diagnosed with AML M5 october 1999, just after my 13th birthday, had full body radiation with chemo and had a perfect match for a transplant from my only brother and received a transplant just after Y2K. Things were alright for the years following, save for removal of a few skin cancers that had to…
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Sprycel Copay Support
With this post, I hope to find out what experience others have had with regard to copay financial support when on Medicare Part D prescription drug insurance plans. My wife takes daily 100MG doses of Sprycel (dasatinib) to control Chronic Myeloid Leukemia (CML). She is insured through my employer and we receive copay…
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New to this adventure
Hi there, I was recently diagnosed with leukemia, and still dumb founded about it. I'm in the hospital trying to get my blood numbers better so I can start chemo. 9 years ago I had a rare and aggressive small cell uterine cancer and the treatments that saved my life now have resulted in leukemia. I'm scared about going…