Search
Search
About
Log in
Join
Experiences with
Lymphocytic leukemia
Posts
Communities
3,090 public posts
Filter results
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
4 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
4 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
8 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
New Jama Article to do with CLL. Audio
utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jama&utm_content=etoc&utm_term=032123 "Chronic
lymphocytic
leukemia
(CLL) affects more than 200 000 people and is associated with >4000 deaths in the US annually.
utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jama&utm_content=etoc&utm_term=032123 "Chronic
lymphocytic
leukemia
(CLL) affects more than 200 000 people and is associated with >4000 deaths in the US annually.
Horsechestnut
in
CLL Support
1 year 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
8 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
8 months ago
Can anyone figure out my MRD
leukemia
(CLL).
leukemia
(CLL).
johnliston
in
CLL Support
1 year 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
Why white blood counts can be high or low. Could a high count be blood cancer, in particular Chronic Lymphocytic Leukemia (CLL)?
Here's the index to the rest: https://healthunlocked.com/cllsupport/posts/143482731/cll-for-dummies-index )
2) Newly diagnosed with Chronic
Leukemia
or Small
Lymphocytic
Lymphoma - CLL/SLL or just found us? This post is for you!
Here's the index to the rest: https://healthunlocked.com/cllsupport/posts/143482731/cll-for-dummies-index )
2) Newly diagnosed with Chronic
Leukemia
or Small
Lymphocytic
Lymphoma - CLL/SLL or just found us? This post is for you!
AussieNeil
Partner
in
CLL Support
1 year 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
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
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
5 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
5 months ago
Zanubrutinib
Zanubrutinib Is A New and Improved Medication For CLL https://www.survivornet.com/articles/zanubrutinib-is-a-new-and-improved-medication-for-chronic-
lymphocytic
-
leukemia
-cll/
Zanubrutinib Is A New and Improved Medication For CLL https://www.survivornet.com/articles/zanubrutinib-is-a-new-and-improved-medication-for-chronic-
lymphocytic
-
leukemia
-cll/
Juliette02
in
CLL Support
1 year 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
5 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
5 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
5 months ago
Newly diagnosed Myelofibrosis Stage 2
I was diagnosed with ET JAK2+ in 2016. I was on HU for many years but it started to lose its effectiveness. In May this year I had a bone marrow biopsy and it was discovered my ET has progressed to Stage 2 Myelofibrosis. I was put on Ruxolitinib which works well for me and is definitely a much better
I was diagnosed with ET JAK2+ in 2016. I was on HU for many years but it started to lose its effectiveness. In May this year I had a bone marrow biopsy and it was discovered my ET has progressed to Stage 2 Myelofibrosis. I was put on Ruxolitinib which works well for me and is definitely a much better
Searcher56
in
MPN Voice
9 months ago
Which other drugs are usually used alongside ruxolitinib when it's not having enough effect on its own?
I've been on ruxolitinib for 4 years for my pv. My white count has always been stubbornly high. Consultant has always brushed it off saying it goes with the condition. My last blood test, everything is fine except now my whites have reached an all time high of 45. The consultant mentioned the possibility
I've been on ruxolitinib for 4 years for my pv. My white count has always been stubbornly high. Consultant has always brushed it off saying it goes with the condition. My last blood test, everything is fine except now my whites have reached an all time high of 45. The consultant mentioned the possibility
MCW22
in
MPN Voice
9 months ago
1
...
8
9
10
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1940 results
MPN Voice
789 results
Leukaemia Support
168 results
View top 10 communities
Sort by
Most Relevant
Newest