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Sad news
It has taken me some time to write this... but I hope my husband’s journey with MPN is perceived overall a message hope to others. He was diagnosed with PV aged 46 and had a great quality of life for 28 years ,needing only phlebotomy -initially weekly but eventually every six weeks or so . He progressed
It has taken me some time to write this... but I hope my husband’s journey with MPN is perceived overall a message hope to others. He was diagnosed with PV aged 46 and had a great quality of life for 28 years ,needing only phlebotomy -initially weekly but eventually every six weeks or so . He progressed
Fika500
in
MPN Voice
3 years ago
Anti inflammatory eating..
Morning.. I am a MF patient, (52 working full time), and for a while have been interested in how nutrition can help me. I can be very good about a varied diet, and then get bored of it, or the perceived effort of planning and doing etc.... However lockdown has made eating well harder, shopping online
Morning.. I am a MF patient, (52 working full time), and for a while have been interested in how nutrition can help me. I can be very good about a varied diet, and then get bored of it, or the perceived effort of planning and doing etc.... However lockdown has made eating well harder, shopping online
Mrs_Average
in
MPN Voice
3 years ago
ET OR MYELOFIBROSIS
Hi! I am new to this. You guys Who have ET, did you have any raising levels in LDH? Or anything else other than high platelets? How is the prognosis with prefibrotic myelofibrosis? Do everyone get myelofibrosis? Thank you!
Hi! I am new to this. You guys Who have ET, did you have any raising levels in LDH? Or anything else other than high platelets? How is the prognosis with prefibrotic myelofibrosis? Do everyone get myelofibrosis? Thank you!
Johan2021
in
MPN Voice
3 years ago
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CLL under W&W and Covid Vaccine
I live in B.C. Canada and I am trying to figure out if I qualify for the Covid vaccine at the time of the "clinically extremely vulnerable" phase. I have CLL and I am on W&W. Under the clinically extremely vulnerable it says "People with cancers of the blood or bone marrow such as leukemia, lymphoma
I live in B.C. Canada and I am trying to figure out if I qualify for the Covid vaccine at the time of the "clinically extremely vulnerable" phase. I have CLL and I am on W&W. Under the clinically extremely vulnerable it says "People with cancers of the blood or bone marrow such as leukemia, lymphoma
TheMah
in
CLL Support
3 years ago
BRUIN Study: phase 1/2 study of Pirtobrutinib (formerly Loxo 305) in relapsed or refractory B-cell malignancies
Patients discontinue BTKi's due to resistance and intolerance. We evaluated the safety and efficacy of Pirtobrutinib (working name; formerly known as LOXO-305), a highly selective, reversible BTK inhibitor, in these patients. The study started recruiting November 16, 2018 and follow up is expected to
Patients discontinue BTKi's due to resistance and intolerance. We evaluated the safety and efficacy of Pirtobrutinib (working name; formerly known as LOXO-305), a highly selective, reversible BTK inhibitor, in these patients. The study started recruiting November 16, 2018 and follow up is expected to
Jm954
Administrator
in
CLL Support
3 years ago
CLL FISH tests results
I have been diagnosed and joined the CLL club recently. I have been doing my research here and also with Dr. Google etc. I just got my FLOW and FISH test results and it is very complicated. I am hoping someone here can give me the layman terms and what the results mean. I have a follow up appointment
I have been diagnosed and joined the CLL club recently. I have been doing my research here and also with Dr. Google etc. I just got my FLOW and FISH test results and it is very complicated. I am hoping someone here can give me the layman terms and what the results mean. I have a follow up appointment
controlsct
in
CLL Support
3 years ago
First Time Post: CLL in full relapse mode + vaccines and Calquence next line of defense.
Hi all - my name is Tim and Im from Seattle. This is my first post here though I’ve been following HealthUnlocked for my CLL diagnosis back in 2018. Unfortunately my leukemia is back after nearly 2 years of remission with FCR. I’ve undergone the typical CLL tests and was ‘relieved’ to find it had not
Hi all - my name is Tim and Im from Seattle. This is my first post here though I’ve been following HealthUnlocked for my CLL diagnosis back in 2018. Unfortunately my leukemia is back after nearly 2 years of remission with FCR. I’ve undergone the typical CLL tests and was ‘relieved’ to find it had not
TimDeeSeattle
in
CLL Support
3 years ago
Ricther Transformation - Derek May has left us.
Hello everyone. It is always my turn to deliver the bad news. Tonight Derek May left us. Two weeks ago Derek made the difficult decision to continue treatment or discontinue it. Derek underwent a cell transplant and had graft-versus-host complications. He was in treatment but his body could not bear
Hello everyone. It is always my turn to deliver the bad news. Tonight Derek May left us. Two weeks ago Derek made the difficult decision to continue treatment or discontinue it. Derek underwent a cell transplant and had graft-versus-host complications. He was in treatment but his body could not bear
Priss69
in
CLL Support
3 years ago
Possible Richter’s Transformation?
My husband had tonsilitis In late December early January and seems to have recover from that. Then, unfortunately, he was in contact with someone positive for Covid and contracted It. He had a difficult time of it he wasn’t hospitalized but came close. During his quarantine, when he was almost finished
My husband had tonsilitis In late December early January and seems to have recover from that. Then, unfortunately, he was in contact with someone positive for Covid and contracted It. He had a difficult time of it he wasn’t hospitalized but came close. During his quarantine, when he was almost finished
hsouter
in
CLL Support
3 years ago
How to request test for chromosome 17p deletion, TP 53 mutation; unmutated immunoglobulin heavy chain variable region (IgHV) in Canada?
We live in Brampton, Ontario in Canada. My wife diagnosed with CLL in Dec 2020. We did not have the opportunity to talk to a hematologist in person and appointment only by phone and the Hematologist said it is CLL and nothing to be worried just the w & w situation. When I start questioning further
We live in Brampton, Ontario in Canada. My wife diagnosed with CLL in Dec 2020. We did not have the opportunity to talk to a hematologist in person and appointment only by phone and the Hematologist said it is CLL and nothing to be worried just the w & w situation. When I start questioning further
Sagarcanada
in
CLL Support
3 years ago
Does green tea extract (EGCG can) reduce WBC in CLL?
I have read some positive things about green tea extract to treat CLL so our Hematologist said just W & W but we could not stop and search about the CLL and its alternative methods of treatment from food and tea etc. Finally, we found that EGCG is useful to reduce the WBC or postpone development symptoms
I have read some positive things about green tea extract to treat CLL so our Hematologist said just W & W but we could not stop and search about the CLL and its alternative methods of treatment from food and tea etc. Finally, we found that EGCG is useful to reduce the WBC or postpone development symptoms
Sagarcanada
in
CLL Support
3 years ago
Critical with covid
This, together with RA, LGL
Leukaemia
and Fibromyalgia has been very difficult. Now 6 weeks ago I started with the worst flare up I have ever had. Nothing is touching the pain and swelling in many of my joints. I can barely function and I am feeling very low.
This, together with RA, LGL
Leukaemia
and Fibromyalgia has been very difficult. Now 6 weeks ago I started with the worst flare up I have ever had. Nothing is touching the pain and swelling in many of my joints. I can barely function and I am feeling very low.
anneileen
in
NRAS
3 years ago
Organic apple cider vinegar "unpasteurized and unfiltered" ?
I am starting to use a very small quantity (spoons full ) of organic apple cider vinegar to spice-up vegetable puree. Can I use the "organic apple cider vinegar" which "unpasteurized and unfiltered" ? I have CLL under near normal CBC control with IMBRUVICA. Also, what if any benefit would any small
I am starting to use a very small quantity (spoons full ) of organic apple cider vinegar to spice-up vegetable puree. Can I use the "organic apple cider vinegar" which "unpasteurized and unfiltered" ? I have CLL under near normal CBC control with IMBRUVICA. Also, what if any benefit would any small
janvog
in
CLL Support
3 years ago
Webinar - 6pm Tuesday 15th December - "Accessing your GP"
Dear friends please join us for this free webinar
Leukaemia
Care and Lymphoma Action are hosting this webinar to bring GPs and those affected by blood cancers together to share perspectives of how to make best use of Primary Care services during the current pandemic.
Dear friends please join us for this free webinar
Leukaemia
Care and Lymphoma Action are hosting this webinar to bring GPs and those affected by blood cancers together to share perspectives of how to make best use of Primary Care services during the current pandemic.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
3 years ago
Chlorambucil
I had Chlorambucil along with Rituximub infusions which put me in remission for 2 years. The only side effects were nausea. They tried me initially on Obinutzumib but I had anaphylaxis and it was terminated. Hope this helps. Jan x
I had Chlorambucil along with Rituximub infusions which put me in remission for 2 years. The only side effects were nausea. They tried me initially on Obinutzumib but I had anaphylaxis and it was terminated. Hope this helps. Jan x
JanChas
in
CLL Support
3 years ago
Leukemia diagnosis
I am confused .I was told I had leukemia .I now have a diagnosis of lymphoproliferative disorder .anybody got any answers please
I am confused .I was told I had leukemia .I now have a diagnosis of lymphoproliferative disorder .anybody got any answers please
Mariacat01
in
CLL Support
3 years ago
Antibody test
I just got my 2nd covid vaccination, Moderna. I would like to get an antibody test in a few weeks to make sure it did the job since they don't know yet whether the vaccine will work with CLL. Has anyone else done/ considered this idea? Is it even feasible?
I just got my 2nd covid vaccination, Moderna. I would like to get an antibody test in a few weeks to make sure it did the job since they don't know yet whether the vaccine will work with CLL. Has anyone else done/ considered this idea? Is it even feasible?
PerfectPurple
in
CLL Support
3 years ago
Thalassemia beta trait and elevated platelets
I was referred to a haematologist last year as the blood test results from my annual health screen came back with some abnormal results. I have thalassemia trait so my blood results are never normal but my GP noted that my platelets were elevated at 489. I looked back at some older blood tests and
I was referred to a haematologist last year as the blood test results from my annual health screen came back with some abnormal results. I have thalassemia trait so my blood results are never normal but my GP noted that my platelets were elevated at 489. I looked back at some older blood tests and
nutter1234
in
MPN Voice
3 years ago
3 x Articles from 'The Conversation'
[u]
Coronavirus might become endemic – here’s how.
[/u] Endemic viruses are those that have constant presence within a geographical area. Such viruses are all around us, though they vary by location. Examples in Europe and North America include the rhinovirus (a cause of the common cold) and influenza
[u]
Coronavirus might become endemic – here’s how.
[/u] Endemic viruses are those that have constant presence within a geographical area. Such viruses are all around us, though they vary by location. Examples in Europe and North America include the rhinovirus (a cause of the common cold) and influenza
2greys
in
Lung Conditions Community Forum
3 years ago
Any one know ......
Hi due to have my pneumonia vacination next week it's been 8 years since my last vaccination back in 2013 and they only gave me the adult one pneumovax 23 ( pnn23) then I phoned up my GPs to book this and Spoke to the practice nurse explained it's been 8 years since my last one and I wanted the
Hi due to have my pneumonia vacination next week it's been 8 years since my last vaccination back in 2013 and they only gave me the adult one pneumovax 23 ( pnn23) then I phoned up my GPs to book this and Spoke to the practice nurse explained it's been 8 years since my last one and I wanted the
stewie
in
CLL Support
3 years ago
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