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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
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
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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
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
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
reduced intensity transplant
If your over 50 and need a stem cell transplant it most likely will be low intensity. It also goes by mini-transplant or RIC transplant. It is NOT a standard stem cell transplant. all your cells are not replaced. you keep most of your own blood cells and have donor cells added to fight your cancer cells
If your over 50 and need a stem cell transplant it most likely will be low intensity. It also goes by mini-transplant or RIC transplant. It is NOT a standard stem cell transplant. all your cells are not replaced. you keep most of your own blood cells and have donor cells added to fight your cancer cells
Hidden
in
CLL Support
5 years ago
Worried about financial ruin...
New here - freshly diagnosed, glad to find this resource. My only real concern (more like terror, actually) is financial. I'll get to that in a moment... So, I've been self-watching my condition for a while now. In the fall of 2017 I suddenly developed a WBC of 13.5 and abs lymphocytes of 8250 at
New here - freshly diagnosed, glad to find this resource. My only real concern (more like terror, actually) is financial. I'll get to that in a moment... So, I've been self-watching my condition for a while now. In the fall of 2017 I suddenly developed a WBC of 13.5 and abs lymphocytes of 8250 at
TampaSteve
in
CLL Support
5 years ago
Rebooting the San Diego CLL Support Group this Wednesday, April 3
Hi, We are pleased to announce that Wednesday April 3rd, 2019 at 4 PM we will have the first San Diego CLL Society Support and Education Meeting at the public Library in University City, see the address below: 4155 Governor Drive San Diego, CA 92122 https://www.sandiego.gov/public-library/locations
Hi, We are pleased to announce that Wednesday April 3rd, 2019 at 4 PM we will have the first San Diego CLL Society Support and Education Meeting at the public Library in University City, see the address below: 4155 Governor Drive San Diego, CA 92122 https://www.sandiego.gov/public-library/locations
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Ibrutinib. To take or not?
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Benny12
in
CLL Support
5 years ago
Anyone with CLL, MDS/MPN ?
My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so
My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so
Mimi4times
in
CLL Support
5 years ago
Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)
Hello everyone, I've just read this interesting finding: https://medicalxpress.com/news/2019-02-vitamin-d-immune-cells-bone.html?utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter In short, myelofibrosis is stimulated by excessive signaling from vitamin D and immune cells known as macrophages
Hello everyone, I've just read this interesting finding: https://medicalxpress.com/news/2019-02-vitamin-d-immune-cells-bone.html?utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter In short, myelofibrosis is stimulated by excessive signaling from vitamin D and immune cells known as macrophages
amalekh
in
MPN Voice
5 years ago
Red cell mass test
Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is the same as the MCV result you get on a normal FBC? Somebody told me it was but for some reason I thought this was its own separate test?
Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is the same as the MCV result you get on a normal FBC? Somebody told me it was but for some reason I thought this was its own separate test?
RedSunrise
in
MPN Voice
5 years ago
Waiting for BMB results (gulp)
Between 10 to 20% of MF patients may develop
acute
myeloid
leukaemia
(AML), a type of blood and bone marrow cancer that progresses rapidly." http://www.mpnvoice.org.uk/about-mpns/questions-about-mpns/myelofibrosis.aspx Still adjusting to the PV Jak2 diagnosis at age 50: PLT 646 (down from 865 in a
Between 10 to 20% of MF patients may develop
acute
myeloid
leukaemia
(AML), a type of blood and bone marrow cancer that progresses rapidly." http://www.mpnvoice.org.uk/about-mpns/questions-about-mpns/myelofibrosis.aspx Still adjusting to the PV Jak2 diagnosis at age 50: PLT 646 (down from 865 in a
ilovetoastwithbutter
in
MPN Voice
5 years ago
Feeling numb
Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department
Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department
1-12-32
in
CLL Support
5 years ago
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