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The 2024 Global Patient Survey invites CLL patients and caregivers to share their experiences
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
CLLerinOz
Administrator
in
CLL Support
5 months ago
Antiinflammatory medications with Jakafi
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
sbs_patient
in
MPN Voice
9 months ago
New MF drugs in development by Incye
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
CanadaG
in
MPN Voice
9 months ago
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Engaging Conversations: Chats with MPN Specialists
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
Manouche
in
MPN Voice
9 months ago
watch and wait.
Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK. Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50. I
Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK. Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50. I
T7374
in
CLL Support
5 months ago
Beta 2 Microglobulin
Hi. I'm considering getting a Beta 2 Microglobulin blood test done. I have CLL and on W&W. Has anyone else had this done?
Hi. I'm considering getting a Beta 2 Microglobulin blood test done. I have CLL and on W&W. Has anyone else had this done?
ColSte
in
CLL Support
5 months ago
Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
pvdm
in
MPN Voice
9 months ago
A potential game-changer for CAR T cell therapy: mutations in cancer engineered to beat cancer
CAR T therapy has been successful in some acute blood cancers. Response rates, however, are considerably lower in CLL and solid tumours, with T cell exhaustion and antigen escape being shared issues. A potentially game-changing advance in solid tumour CAR T technology may therefore be relevant to CAR
CAR T therapy has been successful in some acute blood cancers. Response rates, however, are considerably lower in CLL and solid tumours, with T cell exhaustion and antigen escape being shared issues. A potentially game-changing advance in solid tumour CAR T technology may therefore be relevant to CAR
bennevisplace
in
CLL Support
5 months ago
CLL diagnosis
Hello all, I have just been diagnosed with CLL, because of a blood test in preparation for knee replacement surgery! I have a no symptoms other than mild fatigue. The encologist said this disease doesn’t mean that it’s the end. Some people go for years without symptoms. I am in good health and stay fit
Hello all, I have just been diagnosed with CLL, because of a blood test in preparation for knee replacement surgery! I have a no symptoms other than mild fatigue. The encologist said this disease doesn’t mean that it’s the end. Some people go for years without symptoms. I am in good health and stay fit
Tonightweride
in
CLL Support
5 months ago
Hematocrit and CLL
Is it typical to have high hematocrit with CLL?I was diagnosed in 2020 with a favorable prognosis. I see oncologist each 4 months. It's the longest interval she permits. My last appointment I had: WBC 15.0 HCT 51% My MD has suggested possibly (about a year ago but nothing since then) taking hydroxyurea
Is it typical to have high hematocrit with CLL?I was diagnosed in 2020 with a favorable prognosis. I see oncologist each 4 months. It's the longest interval she permits. My last appointment I had: WBC 15.0 HCT 51% My MD has suggested possibly (about a year ago but nothing since then) taking hydroxyurea
Jessielab
in
CLL Support
5 months ago
Bone pain
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
Tipsy2023
in
MPN Voice
9 months ago
Ruxolitinib not working so well
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
Searcher56
in
MPN Voice
9 months ago
Generic version of Jakafi for PV ?
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Innessant
in
MPN Voice
9 months ago
Cll back after 4yrs
Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Daisy1993
in
CLL Support
6 months ago
Does anyone have CLL and MDS?
I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica
I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica
DaveCll
in
CLL Support
6 months ago
To Trial or not to Trial?
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
SunnyCA
in
CLL Support
6 months ago
Immune system changes during BTKi treatment
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Fogey
in
CLL Support
6 months ago
switch from jakafi (RUX) to Ojjara/momelotinib
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
Bainbridge
in
MPN Voice
9 months ago
MRD Results
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
spi3
in
CLL Support
6 months ago
Venetoclax
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
JoeMcDote
in
CLL Support
6 months ago
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