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CAR T versus Stem Cell transplant for Richter's
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
profrich
in
CLL Support
5 years ago
remembering Chris Dwyer
Many in our community including myself owe much to Chris Dwyer. His death came not so much as a shock to me but a sadness in losing such a fellow warrior who had been through so much while giving so much. He had been long-suffering with so many assaults from various treatments and crippling infections
Many in our community including myself owe much to Chris Dwyer. His death came not so much as a shock to me but a sadness in losing such a fellow warrior who had been through so much while giving so much. He had been long-suffering with so many assaults from various treatments and crippling infections
ThreeWs
in
CLL Support
5 years ago
I am new here was diagnosed yesterday with Polycythaemia vera KAK2 positive I am still in shock.
Would like to hear from others with my condition.
Would like to hear from others with my condition.
Chez1947
in
MPN Voice
5 years ago
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Upcoming Educational Forums and Kipps on ROR1
I invite you to attend our free CLL Society Patient and Caregiver Educational Forums. Featured speakers will present the very latest advances in CLL research, clinical trials, treatment options including CAR-T, patient perspectives, and tips to become an effective self-advocate. I will be at all 4 of
I invite you to attend our free CLL Society Patient and Caregiver Educational Forums. Featured speakers will present the very latest advances in CLL research, clinical trials, treatment options including CAR-T, patient perspectives, and tips to become an effective self-advocate. I will be at all 4 of
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Essential Thrombocythaemia
I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of
I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of
Bobthecob
in
MPN Voice
5 years ago
Introducing myself
Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My
Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My
Skyfli
in
CLL Support
5 years ago
Need your help on out of pocket cost for treatment plus to say hi to everyone
Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed
Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed
Bowie1957
in
CLL Support
5 years ago
Seeking phycological support? How to access Leukaemia Care's Ann Ashley counselling fund
In todays difficult time there are ways to help cope with the additional psychological challenges you may be experiencing when living with a leukaemia diagnosis during Covid times. We’re providing access to private counselling services through the provision of grants, so that leukaemia patients and
In todays difficult time there are ways to help cope with the additional psychological challenges you may be experiencing when living with a leukaemia diagnosis during Covid times. We’re providing access to private counselling services through the provision of grants, so that leukaemia patients and
NicoleLeukaemiaCare
in
Leukaemia Support
5 years ago
Having b-pll
a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and Lymphoma site. If you go a third of the way down on the page under available funding they consider b-pll a subtype of cll. https://www.lls.org/
a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and Lymphoma site. If you go a third of the way down on the page under available funding they consider b-pll a subtype of cll. https://www.lls.org/
Hidden
in
CLL Support
5 years ago
Can a PV Patient Turn Myelofibrosis So Fast?
I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy
I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy
Fifty2018
in
MPN Voice
5 years ago
imbruvica/gazyva or imbruvica/venclexta
I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL because there are so few b-pll patients not enough to get drug indications approved. Conventional pre novel drug era drugs are mostly resistant. i have been on Imbruvica for 3 months and have had dramatic improvement. I
I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL because there are so few b-pll patients not enough to get drug indications approved. Conventional pre novel drug era drugs are mostly resistant. i have been on Imbruvica for 3 months and have had dramatic improvement. I
Hidden
in
CLL Support
5 years ago
Need to know about any DSide Effects when on Venetalax/ rituximab
Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they
Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they
roszika
in
CLL Support
5 years ago
CG-806... starts the long trek..
CG-806 is an oral, first-in-class small molecule inhibitor of all known forms of FLT3 and BTK kinases being developed for the treatment of patients with select hematologic malignancies, including chronic
lymphocytic
leukemia
(CLL/SLL) and non-Hodgkin’s lymphomas, as well as for patients with relapsed
CG-806 is an oral, first-in-class small molecule inhibitor of all known forms of FLT3 and BTK kinases being developed for the treatment of patients with select hematologic malignancies, including chronic
lymphocytic
leukemia
(CLL/SLL) and non-Hodgkin’s lymphomas, as well as for patients with relapsed
Cllcanada
Top Poster CURE Hero
in
CLL Support
5 years ago
So scared and new to this board
I’m scared. Petechiae (tiny) all over stomach and legs. Slight elevated HCT (44.7) and RBC are high normal. Been referred to hematology and oncology for further workup in two weeks! My stomach also feels swollen and tender. Does it sound like I have cancer? I’m so scared
I’m scared. Petechiae (tiny) all over stomach and legs. Slight elevated HCT (44.7) and RBC are high normal. Been referred to hematology and oncology for further workup in two weeks! My stomach also feels swollen and tender. Does it sound like I have cancer? I’m so scared
MochaMommy23
in
MPN Voice
5 years ago
Been awhile!
USA: 2014 - present 2014: Spleen upper limits of normal; Liver mild enlargement; shotty lymph nodes at axillary and mediastinal; multiple renal cyst seen bilaterally; diverticulosis in the sigmoid colon without vidence of inflammation; Zap-70+; deletions at 11q24 and 13q14; unmutated IgVH. WBC from Aug
USA: 2014 - present 2014: Spleen upper limits of normal; Liver mild enlargement; shotty lymph nodes at axillary and mediastinal; multiple renal cyst seen bilaterally; diverticulosis in the sigmoid colon without vidence of inflammation; Zap-70+; deletions at 11q24 and 13q14; unmutated IgVH. WBC from Aug
tedrog
in
CLL Support
5 years ago
Has anyone been on the combination therapy of Venetoclax, Ibrutinib and Obinutuzumab?
I was wondering if I could hear from someone who has had the combination of Venetoclax, Ibrutinib and Obinutuzumab (Gazyva). My CLL is completely resistant to Chemo and actually continued to spread while I was on FCR. Basically I have a rare c-myc mutation for CLL that has a poor prognosis. I have
I was wondering if I could hear from someone who has had the combination of Venetoclax, Ibrutinib and Obinutuzumab (Gazyva). My CLL is completely resistant to Chemo and actually continued to spread while I was on FCR. Basically I have a rare c-myc mutation for CLL that has a poor prognosis. I have
Time17
in
CLL Support
5 years ago
what does p53 abnormal 50 percent mean
does it mean 50 percent missing? i have p17 deleted but p53 says abnormal 50 percent. does that mean mutated or missing I had fish,flow, and immunohistochemical. the above was under FISH. And as i've said before they decided on b-pll by process of elimination of others. my b-pll diagnosis was not
does it mean 50 percent missing? i have p17 deleted but p53 says abnormal 50 percent. does that mean mutated or missing I had fish,flow, and immunohistochemical. the above was under FISH. And as i've said before they decided on b-pll by process of elimination of others. my b-pll diagnosis was not
Hidden
in
CLL Support
5 years ago
Ibrutanib and sleep issues
Day 5 on ibrutanib. Really having issues with sleeping. I wake after two hours and have restless leg type symptoms and cannot get back to sleep. Have tried melatonin but hadn't really helped. I am a Waldenstrom patient with associated amyloidosis but there are slot of commonalities with CLL.
Day 5 on ibrutanib. Really having issues with sleeping. I wake after two hours and have restless leg type symptoms and cannot get back to sleep. Have tried melatonin but hadn't really helped. I am a Waldenstrom patient with associated amyloidosis but there are slot of commonalities with CLL.
Tomogrady1
in
CLL Support
5 years ago
Cll and my mutation
I switched doctors after 8 years of recurring cll....imbruvica zydelig rhituxin with all plus others...just wasn’t working (for me). My new doctor was surprised that the old never did a bone marrow test (it doesn’t hurt like the old days). Well that and a genetic test revealed I had tp53 mutated gene
I switched doctors after 8 years of recurring cll....imbruvica zydelig rhituxin with all plus others...just wasn’t working (for me). My new doctor was surprised that the old never did a bone marrow test (it doesn’t hurt like the old days). Well that and a genetic test revealed I had tp53 mutated gene
chemosuxs
in
CLL Support
5 years ago
New to this site. Introduction
I was diagnosed with CLL 6 years ago. I am watching and waiting. I just found this forum last week and started really looking at things today. I was diagnosed when I was 36 I am now 42. Needles to say that I have been trying to live life right. Eating and exercising while watching my WBC steadily increase
I was diagnosed with CLL 6 years ago. I am watching and waiting. I just found this forum last week and started really looking at things today. I was diagnosed when I was 36 I am now 42. Needles to say that I have been trying to live life right. Eating and exercising while watching my WBC steadily increase
Tdcpride
in
CLL Support
5 years ago
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