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CLL vs. MBL
Hi, I'm new here and am anxiously waiting a diagnosis based on a bone marrow biopsy and other tests. It sounds like I could have minimal involvement of a low level B-Cell lymphoproliferative disorder or MBL (monoclonal B-cell lymphocytosis). Can anyone shine a light on the differences between these two diseases and what…
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Emotional regulation
I was diagnosed with AML a few months before my 15th birthday in 1999. I’ve been blessed with this opportunity to continue life, but over the last several years, ~7, as things have changed and created a family, my emotional awareness and control has become not good. I have 3 kids, 11, 9, 7 and they are wonderful. I’m…
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T cell LGL leukemia
Hello everyone, so I’ve been trying to get to the bottom of my neutropenia. They picked it up in my routine blood work when I was pregnant. It’s been 3 yrs of limbo of not knowing what’s going on. My WBC and RBC are always low and my neutrophils are 150-400. I’ve had one bone marrow biopsy that showed the tcell gene…
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t-cell LGL leukemia... or not?
I'm sorry if I repeat this, I posted it 2 times as a comment on similar arguments, than I thought maybe is better to create a new topic. I'm new in the forum and I don't know how is better. Hallo, I'm a 43 y.o. male and I've been diagnosed of t-cell LGL leukemia... or maybe not! I can't still understand the mechanism of…
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Cyclophosphamide
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…
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LGL T-Cell Leukemia
I am a 38 year old female just recently diagnosed with LGLL. I have a 17mo old little girl, so the statistics of 10 year life span and no cure are very upsetting to me. This is such a rare disorder. I am trying to stay positive but since this is so rare, it limits research. I would love to hear anyone elses story who may…
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Plasma Cell Leukemia
I am trying to find out information on plasma cell leukemia. My husband has been battling Stage IV oropharyngeal cancer since July. We have had several setbacks and my 47 year old husband has gotten worse and worse. He has had to be in the hospital for hypercalcemia and acute kidney damage. We were called in last week and…
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No one in family cares
I'm 53, new to all of this , my grown children do not care , my mother does not believe me nor does she care and she's a MEDICIAL SOCIAL WORKER . It's hard .
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Looking for CML support groups in Portland Maine
I am lost. I don't know where to look in Maine. I was recently diagnosed with CML and just started treatment this week. Thanks, Julia
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Attending school during and after treatment
School was difficult to deal with. Side effects were not as well known, in 1980. I was treated just like everyone else. The Prednisone made me uncontrollable at times. So I was listed as having behavioral problems. I ended up in resource classes. This was probably the best thing to happen. It was great. I could learn at my…
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Childhood ALL Survivor now 31yrs old
Wondering if there is anyone out there who has been fortunate enough to survive and thrive after having ALL. I have been extremely fortunate in my life and am even married and expecting our first child aka ( alien nugget) in September. As lucky as I have been I still wonder what will be around the corner. I asked my OBGYN…
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My husband passed away 2 days ago
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…
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Ommaya Reservoir removal - Anyone experience this?
I received chemo back in 2004 both through a catheter and an ommaya reservoir. The catheter stopped working shortly after my chemo was finished, so it was removed. The ommaya reservoir remains in my head today. I am giving serious thought to having it removed, but I'm worried about scheduling 'elective' surgery. My doctor…
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Fighting for Camila
On December 31, 2016 our world was blessed with a 3rd child, a beautiful girl Camila. She has the dimples that make you want to smile and big glossy brown eyes that will brighten your day. She loves to go to school and loves to play with her sisters, cousins and friends. July 1, 2022, was the worst day of our lives as we…
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Costs of the CLL drug Imbruvica
I was diagnosed with CLL 5 years ago and for the last 2 years I’ve been on a drug called Imbruvica. It has worked wonders on my white cell count and I’m doing great on the drug so far. Unfortunately, I will be going on Medicare soon and I just found out the cost of the drug thru a part D plan! It’s $150,000 a year! I’m…
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CML--help me find someone
anyone out there with CML.......chronic myelogenous leukemia or know anyone....
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Return to Work Post Stem Cell Transplant
I am approaching my 100 days of isolation post stem cell transplant. I have had a great recovery with few side effects, no GVHD or other complications, no fatigue after about 20 days post transplant. My blood numbers have been referred to by my oncologist as “fantastic” throughout the 100 days. I travelled out of my home…
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AML Relapse Question
Hi Everyone, My husband was diagnosed with AML on 12/23/202. He had a BMT on 3/9/2021. He had quite a bit of complications including possible lung GVHD. The reason I said possible is because he had Covid at the beginning of the this year. He is on Prednisone to keep his lung conditions stablized. He was on oxygen for a…
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CLL
Does anyone here have CLL? My sister has it and she's looking for a CLL doctor. Unfortunately, she's in Alabama and as far as we've been able to determine, there are no CLL doctors in Alabama. Ash
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Hair Regrowth
Hey guys, I had a bone marrow transplant last year and my hair is taking a long time to grow back. The doctors say that most peoples come back thinner, another colour and really curly. Before my hair loss I had very thick, long wavy hair. It has since grown back a bit darker and straight. The top part of the hair still has…
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Caregiver questions
My husband was diagnosed with ALL in August & has been through 4 rounds of chemo but still has 20% cancer left. He doesn’t talk much, spends most of his time in bed, and never goes anywhere other than Dr appts. I’ve never gone through what he is & don‘t know if this is normal chemo side effect. We have 3 children & they…
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T-cell ALL and BMT
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…
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T-cell ALL poor prognosis
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…
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AML Leukemia
Would like to talk to some one with aml, especially if in the San antonio, TX area. I was diagnosed with aml 1 Dec 00 and had 3 chemo treatments. Presently am in remission. Bobby Sllen
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DIAGNOSIS OF "PRE-CANCEROUS" CONDITION - MBL
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…
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Caregivers of Leukemia Patients
My name is Vicki and I am a caregiver for my mother-in-law. She has lived with me and my husband now for over 3 years. She was diagnosed with a rare form of Leukemia,Large T cell. I just need to talk to someone who is doing and going through what I have been for 3 years.
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White Blood Count
I wonder if anyone can answer this question. My husband was diagnosed with CLL February 2013. When this horrible journey started, the WBC was 50,000. Mind you, in 2003 it was 20,000 - 30,000. But they did not know it was cancer. They thought it was his Crones Disease -they just thought it was high. So all that time we…
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Life after Acute Promyelocytic Leukemia
Hello. I finished treatment for APL almost 2 years ago. I still feel extreme fatigue. I was wondering how other survivors feel. Am I the only one that hasn't snapped back into my pre-leukemia self? I appreciate any input. Thank you. GM
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CML and reoccurring resistance to TKIs
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…
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Wondering about male fertility after bone marrow transplant
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