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(Originally posted by Hunter) "Recent forum presented by our friends at MPN Advocacy & Education International"
Hunter found this presentation: https://healthunlocked.com/mpnvoice/posts/148836859/boston-mpn-patient-caregiver-program-presented-by-mpn-advocacy-education-international Great find. I went through the videos and have some notes/comments. I figured a top post should be most helpful. --
Dr. Raagit
Hunter found this presentation: https://healthunlocked.com/mpnvoice/posts/148836859/boston-mpn-patient-caregiver-program-presented-by-mpn-advocacy-education-international Great find. I went through the videos and have some notes/comments. I figured a top post should be most helpful. --
Dr. Raagit
EPguy
in
MPN Voice
2 years ago
myelofibrosis
Does anyone on here know if mf should always be treated,main symptom is fatigue, slightly enlarged spleen and slight anaemia ( for 3 years)not sure about the watch and wait approach.
Does anyone on here know if mf should always be treated,main symptom is fatigue, slightly enlarged spleen and slight anaemia ( for 3 years)not sure about the watch and wait approach.
glyndale
in
MPN Voice
2 years ago
EXTREME bone pain with Neupogen injections, advise welcome!
Has anyone experienced extreme pain with Neupogen GCSF injections? My husband has received 2 out of 4 injections and is in agonizing bone pain. His specialist recommended a hot bath, Claritin, and Tylenol. I also have a heating pad on his back. Just wondering how long this will last and how he is going
Has anyone experienced extreme pain with Neupogen GCSF injections? My husband has received 2 out of 4 injections and is in agonizing bone pain. His specialist recommended a hot bath, Claritin, and Tylenol. I also have a heating pad on his back. Just wondering how long this will last and how he is going
lisakc1
in
CLL Support
1 year ago
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ALC is still going up
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Moonmyst
in
CLL Support
1 year ago
Exercise is the fountain of youth
I always loved the natural high that exercise brings but I never really knew how totally therapeutic it is. I was always the Captain in Team Sports growing up & just generally active. Things slowed down during college & never got added to my ‘adult’ life of creating a career & family. Anyway, after
I always loved the natural high that exercise brings but I never really knew how totally therapeutic it is. I was always the Captain in Team Sports growing up & just generally active. Things slowed down during college & never got added to my ‘adult’ life of creating a career & family. Anyway, after
CoachVera55
in
CLL Support
1 year ago
Having to start treatment
CLL with no mutations. Numbers are very high and I have no visible symptoms. I'm going to need to start treatment. The two options I am being told are Ibrutinib or Venetoclax. I am a healthy person not overweight I'm on no medication I'm 60 years old are there any thoughts on which medication. And has
CLL with no mutations. Numbers are very high and I have no visible symptoms. I'm going to need to start treatment. The two options I am being told are Ibrutinib or Venetoclax. I am a healthy person not overweight I'm on no medication I'm 60 years old are there any thoughts on which medication. And has
Mog811
in
CLL Support
1 year ago
Blood tests results
My dad has chronic lymphomatic
leukaemia
(however u spell it) I'm always frightened that I may have genetically inherited something. Any adive would be appreciated thank you. 😕💕
My dad has chronic lymphomatic
leukaemia
(however u spell it) I'm always frightened that I may have genetically inherited something. Any adive would be appreciated thank you. 😕💕
Coffeemum
in
Fibromyalgia Action UK
2 years ago
how good is jakafi?? Pros and cons?
hi everyone I’m about to start taking jakafi due to tomorrow, any input/suggestions for pmf patient like me, with splenomegaly and portal vein thrombosis (monthly ligation since march last year), jak2+, dmm3ta+ Hope to get feedback from the community! thanks a bunch!
hi everyone I’m about to start taking jakafi due to tomorrow, any input/suggestions for pmf patient like me, with splenomegaly and portal vein thrombosis (monthly ligation since march last year), jak2+, dmm3ta+ Hope to get feedback from the community! thanks a bunch!
Dan39
in
MPN Voice
2 years ago
Some good Clonoseq results
I just wanted to share that I received some positive news from Clonoseq blood test. This is a blood test for MRD. It did not detect any CLL. So, my doctor has scheduled a bone marrow biopsy to do further testing. If that too comes back negative, I will be able to go off treatment. I started my
I just wanted to share that I received some positive news from Clonoseq blood test. This is a blood test for MRD. It did not detect any CLL. So, my doctor has scheduled a bone marrow biopsy to do further testing. If that too comes back negative, I will be able to go off treatment. I started my
Kvb-texas
in
CLL Support
1 year ago
WBC rising
After 2 years in remission post B+R my white count is starting to go up. In Aug. it was 7.925, Dec 8 was 11.78, and last week was 15.05. I have to go for another CBC next week. I am also noticing periods of feeling a little out of breath with little exertion. I'm scared that this might be heading
After 2 years in remission post B+R my white count is starting to go up. In Aug. it was 7.925, Dec 8 was 11.78, and last week was 15.05. I have to go for another CBC next week. I am also noticing periods of feeling a little out of breath with little exertion. I'm scared that this might be heading
Moonmyst
in
CLL Support
1 year ago
New Study re: Myelofibrosis: Predictors of Anemia Response to Momelotinib Therapy in Myelofibrosis and Impact on Survival
Synopsis: TAKE-HOME MESSAGE In this retrospective study, the authors identified the predictors of anemia response and its impact on outcomes in 72 patients with myelofibrosis treated with momelotinib. Nearly half of the patients with anemia responded to therapy, including those with transfusion dependence
Synopsis: TAKE-HOME MESSAGE In this retrospective study, the authors identified the predictors of anemia response and its impact on outcomes in 72 patients with myelofibrosis treated with momelotinib. Nearly half of the patients with anemia responded to therapy, including those with transfusion dependence
PhysAssist
in
MPN Voice
2 years ago
CLL Staging
Hello. My husband, Simon, was diagnosed with CLL several years ago and has been closely monitored. On his last visit to his consultant he was told that he needs to start treatment. Either Rituximab or Venetoclax. My husband is always dismissive of his condition and does not want to discuss with me
Hello. My husband, Simon, was diagnosed with CLL several years ago and has been closely monitored. On his last visit to his consultant he was told that he needs to start treatment. Either Rituximab or Venetoclax. My husband is always dismissive of his condition and does not want to discuss with me
Rocky0181
in
CLL Support
1 year ago
A tip for Australians with Chronic Lymphocytic Leukemia trying to access pneumococcal vaccination through the National Immunisation Program
What a morning I've had to get my third pneumococcal vaccine. I'll share the details here as the solution I found could help others with CLL in Australia who are having difficulty accessing these vaccines through the National Immunisation Program (NIP). In Australia, since 1 July 2020, it's standard
What a morning I've had to get my third pneumococcal vaccine. I'll share the details here as the solution I found could help others with CLL in Australia who are having difficulty accessing these vaccines through the National Immunisation Program (NIP). In Australia, since 1 July 2020, it's standard
CLLerinOz
Administrator
in
CLL Support
1 year ago
Durability of Ruxolitinib for PV, Dr V in Targeted Oncology interview
A few weeks ago there was some discussion on there was some discussion on her re the durability of Rux for PV. Below is a answer to that from Dr V in a interview with Targeted Oncolgy in Nov 2022 In polycythemia vera, ruxolitinib is valuable as a second-line choice when things don't go well with hydroxyurea
A few weeks ago there was some discussion on there was some discussion on her re the durability of Rux for PV. Below is a answer to that from Dr V in a interview with Targeted Oncolgy in Nov 2022 In polycythemia vera, ruxolitinib is valuable as a second-line choice when things don't go well with hydroxyurea
ainslie
in
MPN Voice
2 years ago
Could you share your leukaemia diagnosis story?
Hi everyone, Alex here from
Leukaemia
Care. 👋 September is Blood Cancer Awareness Month and we will be running our Spot
Leukaemia
campaign, which aims to raise awareness of the signs and symptoms of
leukaemia
.
Hi everyone, Alex here from
Leukaemia
Care. 👋 September is Blood Cancer Awareness Month and we will be running our Spot
Leukaemia
campaign, which aims to raise awareness of the signs and symptoms of
leukaemia
.
LCAlex
Administrator
in
Leukaemia CARE
2 years ago
CANCER CURE! Little girl's leukemia UNDETECTABLE after 6 months! (Treatment is applicable to OTHER diseases!)
[/i] [i]"All other treatments for Alyssa's
leukaemia
had failed."[/i] [i]"So doctors at Great Ormond Street Hospital used "base editing" to perform a feat of biological engineering to build her a new living drug."[/i] [i]"[/i][u][i]
Six months later the cancer is undetectable
[/i][/u][i]."
[/i] [i]"All other treatments for Alyssa's
leukaemia
had failed."[/i] [i]"So doctors at Great Ormond Street Hospital used "base editing" to perform a feat of biological engineering to build her a new living drug."[/i] [i]"[/i][u][i]
Six months later the cancer is undetectable
[/i][/u][i]."
PDWarrior1900
in
Cure Parkinson's
1 year ago
LDN Dosing for Cancer - General Guide
It can be used for all cancer types except
leukaemia
and lymphoma. I highly recommend running a Maintrac test every 3-6 months to monitor for early signs of recurrence (it provides an early warning before tumours form).
It can be used for all cancer types except
leukaemia
and lymphoma. I highly recommend running a Maintrac test every 3-6 months to monitor for early signs of recurrence (it provides an early warning before tumours form).
Shewulf
Administrator
in
LDN Research Trust
1 year ago
Is my body killing my embryos?
I'm 41... conceived a son through IVF in 2019 (an angel - my mum died of
leukaemia
in the middle of that cycle - I can't believe he was ok). From that cycle, I produced three more good quality blastocysts (grade B). These were put in the freezer.
I'm 41... conceived a son through IVF in 2019 (an angel - my mum died of
leukaemia
in the middle of that cycle - I can't believe he was ok). From that cycle, I produced three more good quality blastocysts (grade B). These were put in the freezer.
rainbowbaby8320
in
Fertility Network UK
1 year ago
The Leukemia & Lymphoma Society - - COVID Updates: Where We Are and Where We Go From Here
COVID Updates: Where We Are and Where We Go From Here https://youtu.be/0aUhKTfOVUI We invite you to learn more about: How COVID-19 has evolved Safety tips for immunocompromised patients Current treatment advances Living with COVID through the end of 2022 and beyond https://youtu.be/0aUhKTfOVUI
COVID Updates: Where We Are and Where We Go From Here https://youtu.be/0aUhKTfOVUI We invite you to learn more about: How COVID-19 has evolved Safety tips for immunocompromised patients Current treatment advances Living with COVID through the end of 2022 and beyond https://youtu.be/0aUhKTfOVUI
lankisterguy
Volunteer
in
CLL Support
1 year ago
CLL relapse
Hello to everyone.My mother has CLL. She is 66 now (diagnozed at the age of 62). She is taking Bendamustine monotherapy and was in remission about 3 years after treatment. Now she has one enlarged lymphnode in her armpit, her hematologist said that CLL is slowly coming back. Leukocites 7.7 Lymphocites
Hello to everyone.My mother has CLL. She is 66 now (diagnozed at the age of 62). She is taking Bendamustine monotherapy and was in remission about 3 years after treatment. Now she has one enlarged lymphnode in her armpit, her hematologist said that CLL is slowly coming back. Leukocites 7.7 Lymphocites
Taupe7
in
CLL Support
1 year ago
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