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Day +99
Hello friends, Well I am almost at 100 days post transplant and feeling surprisingly well under the circumstances. My check ups have been reduced to once a week and my blood counts are slowly improving. Hb currently at 89 and platelets at 46 so my donor cells are working hard and I haven't needed a
Hello friends, Well I am almost at 100 days post transplant and feeling surprisingly well under the circumstances. My check ups have been reduced to once a week and my blood counts are slowly improving. Hb currently at 89 and platelets at 46 so my donor cells are working hard and I haven't needed a
Otterfield
in
MPN Voice
1 year ago
Off patent drug possibility for Covid. Ursodeoxycholic acid (UDCA), an approved liver disease drug, reduces ACE2 levels on lab-grown cells
There seems to be a deal of excitement in certain media areas about research involving UK, European and US researchers on a covid treatment drug. The one in question is an off patent drug ursodeoxycholic acid currently used to treat liver damage so a re-purposing rather than development of a new drug
There seems to be a deal of excitement in certain media areas about research involving UK, European and US researchers on a covid treatment drug. The one in question is an off patent drug ursodeoxycholic acid currently used to treat liver damage so a re-purposing rather than development of a new drug
Eucalyptus22
in
CLL Support
1 year ago
LET’S GET READY FOR WORLD CLL DAY ON 1 SEPTEMBER!
Every 1 September, the global CLL community unites to raise awareness about chronic
lymphocytic
leukemia
and give those affected by a diagnosis of CLL a much needed voice.
Every 1 September, the global CLL community unites to raise awareness about chronic
lymphocytic
leukemia
and give those affected by a diagnosis of CLL a much needed voice.
HAIRBEAR_UK
Founder Admin
in
CLL Support
2 years ago
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Looking for more wholistic answers to dealing with ITP
Hi, I am newly diagnosed since Aug. 2022 with ITP and have had two crashes with platelet levels in the single digits twice now. Last week they put me on a short dose of dexamethasone which helped and now I am getting Nplate injections weekly for a month. From everything I have read, I cannot find
Hi, I am newly diagnosed since Aug. 2022 with ITP and have had two crashes with platelet levels in the single digits twice now. Last week they put me on a short dose of dexamethasone which helped and now I am getting Nplate injections weekly for a month. From everything I have read, I cannot find
bonandmick
in
ITP Support Association
1 year ago
Lymphatic Drainage by Vibration Platforms
The attached article reports apoptosis of cancer cells by low frequency vibration (not CLL & experiment was in-vitro) Vibration platforms claim multiple fold increase in lymphatic circulation and drainage. Lymphatic drainage is good for CLL. Can there be a small chance that vibration platforms
The attached article reports apoptosis of cancer cells by low frequency vibration (not CLL & experiment was in-vitro) Vibration platforms claim multiple fold increase in lymphatic circulation and drainage. Lymphatic drainage is good for CLL. Can there be a small chance that vibration platforms
nuji
in
CLL Support
1 year ago
(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
1 year 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
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
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
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
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
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
PI3K inhibitors (idelalisib,copanlisib, duvelisib, parsaclisib, umbralisib, zandelisib, ACP-319) in CLL: where do we go from here?
[i]"Phosphatidylinositol 3-kinase (PI3K) inhibitors are effective in chronic
lymphocytic
leukemia
(CLL).
[i]"Phosphatidylinositol 3-kinase (PI3K) inhibitors are effective in chronic
lymphocytic
leukemia
(CLL).
CLLerinOz
Administrator
in
CLL Support
2 years 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
Ever wondered what difference achieving better than uMRD4 means to your likely overall survival? German CLL SG are finding out - CLL11 trial
leukemia
(CLL) is limited to MRD 10-4.
leukemia
(CLL) is limited to MRD 10-4.
AussieNeil
Partner
in
CLL Support
2 years ago
Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic
lymphocytic
leukemia
after it returned.
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic
lymphocytic
leukemia
after it returned.
lankisterguy
Volunteer
in
CLL Support
2 years ago
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