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Watch & Wait versus the risk of Richter’s
I am newly diagnosed. No “B symptoms”. I have probably had this for a few years already given that my lymphocytes have been sufficiently high to “qualify”. So time to play Tevye (forgive the brief intrusion by Michael Buble): On the one hand, so long as I am feelin’ good, I can continue to W&W. On the
I am newly diagnosed. No “B symptoms”. I have probably had this for a few years already given that my lymphocytes have been sufficiently high to “qualify”. So time to play Tevye (forgive the brief intrusion by Michael Buble): On the one hand, so long as I am feelin’ good, I can continue to W&W. On the
Luap001
in
CLL Support
3 years ago
Blood work suddenly normal
Hello everyone, I was just diagnosed this Feb as stage 0 and on watch and wait. When I had my first follow up appointment with my Hematologist last week, the blood work wasn’t ready. We have a program at the hospital where I can see the blood work as soon as it’s ready and I was really shocked. My Abs
Hello everyone, I was just diagnosed this Feb as stage 0 and on watch and wait. When I had my first follow up appointment with my Hematologist last week, the blood work wasn’t ready. We have a program at the hospital where I can see the blood work as soon as it’s ready and I was really shocked. My Abs
Can2021
in
CLL Support
3 years ago
Update after BMB
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
Androg
in
MPN Voice
3 years ago
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Hydroxyurea side effects?
I have PV and I am Jak2+.Currently on Phlebotomy and baby aspirin.I usually have Phlebotomy about every 6 weeks to keep my Hematocrit below 45.Platelets around 600. Hemoglobin 13 and WBC on high side at 1750. I am considering Hydroxyurea or Busulfan oral. I know this has been discussed previously but
I have PV and I am Jak2+.Currently on Phlebotomy and baby aspirin.I usually have Phlebotomy about every 6 weeks to keep my Hematocrit below 45.Platelets around 600. Hemoglobin 13 and WBC on high side at 1750. I am considering Hydroxyurea or Busulfan oral. I know this has been discussed previously but
Ridenez
in
MPN Voice
3 years ago
Are CLL patients are kept in priority for COVID vaccination?
My wife is living with CLL and she is 50 years old now and she is under w & w condition. We live in Ontario, Canada. She has to go to Asia in May 2021 for a month. So far my knowledge is a concern, I do not know about the special privileges for vaccination to CLL people in Canada. I heard the government
My wife is living with CLL and she is 50 years old now and she is under w & w condition. We live in Ontario, Canada. She has to go to Asia in May 2021 for a month. So far my knowledge is a concern, I do not know about the special privileges for vaccination to CLL people in Canada. I heard the government
Sagarcanada
in
CLL Support
3 years ago
Interferon-alpha for treating polycythemia vera yields improved myelofibrosis-free and overall survival
« Interferon-alpha (rIFNα) is the only disease-modifying treatment for polycythemia vera (PV), but whether or not it prolongs survival is unknown. This large single center retrospective study of 470 PV patients compares the myelofibrosis-free survival (MFS) and overall survival (OS) with rIFNα to two
« Interferon-alpha (rIFNα) is the only disease-modifying treatment for polycythemia vera (PV), but whether or not it prolongs survival is unknown. This large single center retrospective study of 470 PV patients compares the myelofibrosis-free survival (MFS) and overall survival (OS) with rIFNα to two
Manouche
in
MPN Voice
3 years ago
New Diagnosis? Questions
Hi All Forgive me for the stupid question. I am newly diagnosed with CLL (?) I have a Flow Symmetry saying I have B-Cell CLL. Looked online at my just-in results from the FISH test that say: Negative So...it's Friday night, I won't be able to speak to my Doctor for several days, and wondering if its
Hi All Forgive me for the stupid question. I am newly diagnosed with CLL (?) I have a Flow Symmetry saying I have B-Cell CLL. Looked online at my just-in results from the FISH test that say: Negative So...it's Friday night, I won't be able to speak to my Doctor for several days, and wondering if its
Tracibfine
in
CLL Support
3 years ago
NICE Approves Acalabrutinib (Calquence) for specified groups of CLL patients in England
Thanks to Peggy4 for posting this yesterday, here's a bit more detail. NICE has determined that Acalabrutinib will be available to CLL patients in the following groups: * previously treated CLL patients. *untreated patients with 17p deletion or TP53 mutations. *untreated patients who are unsuitable
Thanks to Peggy4 for posting this yesterday, here's a bit more detail. NICE has determined that Acalabrutinib will be available to CLL patients in the following groups: * previously treated CLL patients. *untreated patients with 17p deletion or TP53 mutations. *untreated patients who are unsuitable
Jm954
Administrator
in
CLL Support
3 years ago
Explosion of Data Come From Innovative Combos in CLL The progress made with novel combination regimens is unprecedented
Video recaps of significant papers presented at 25th Annual International Congress on Hematologic Malignancies: Focus on Leukemias, Lymphomas, and Myeloma https://view.email.onclive.com/?qs=ff210df8480d97f58576ac91cdadf53c1fd145046e64fc78cf45bc7553ec3156d53abae8b515df5cf36766d4c9e951bec7d45f1a446b46c0dd951e09c41d66e9ce3a477ab6193e23e24fd6710b3aa35f
Video recaps of significant papers presented at 25th Annual International Congress on Hematologic Malignancies: Focus on Leukemias, Lymphomas, and Myeloma https://view.email.onclive.com/?qs=ff210df8480d97f58576ac91cdadf53c1fd145046e64fc78cf45bc7553ec3156d53abae8b515df5cf36766d4c9e951bec7d45f1a446b46c0dd951e09c41d66e9ce3a477ab6193e23e24fd6710b3aa35f
lankisterguy
Volunteer
in
CLL Support
3 years ago
The Leukemia & Lymphoma Society (USA) Co-Pay Assistance Program provides up to $8,000 annually for CLL Patients' treatment expenses
http://view.e.lls.org/?qs=a2e7081f17eb653ddea40444656a1770bfdf0f4e301505d8af5f4f9cf3bf65ec8be0b13ac15508469314a0fe254f1b095390f32d492221fe510c3b354e19f49d&utm_source=sfmc&utm_medium=email&utm_campaign=CLL+Copay+Email&utm_term=Web+Version&utm_id=130124&sfmc_id=223991984 Financial Assistance with Chronic
http://view.e.lls.org/?qs=a2e7081f17eb653ddea40444656a1770bfdf0f4e301505d8af5f4f9cf3bf65ec8be0b13ac15508469314a0fe254f1b095390f32d492221fe510c3b354e19f49d&utm_source=sfmc&utm_medium=email&utm_campaign=CLL+Copay+Email&utm_term=Web+Version&utm_id=130124&sfmc_id=223991984 Financial Assistance with Chronic
lankisterguy
Volunteer
in
CLL Support
3 years ago
Cannabis and CLL?
Alternative treatment of CLL? I have been reading about the story of cannabis and its treatment on CLL. I will tell you why I am interested to know about this? since my wife is under W & W condition of CLL so I have been exploring different alternative methods so that I could stop her progression?
Alternative treatment of CLL? I have been reading about the story of cannabis and its treatment on CLL. I will tell you why I am interested to know about this? since my wife is under W & W condition of CLL so I have been exploring different alternative methods so that I could stop her progression?
Sagarcanada
in
CLL Support
3 years ago
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
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
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
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
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