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Lymphocytic leukemia
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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
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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
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
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
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
Is it ok to smoke marijuana or to take edibles with cll?
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
Jessielab
in
CLL Support
6 months ago
Can anyone figure out my MRD
leukemia
(CLL).
leukemia
(CLL).
johnliston
in
CLL Support
1 year 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
10 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
10 months ago
constipation anyone ? Here’s a good solution
hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own because I like organic stuff and knowing what’s gone into my food. you could of course simply buy no sugar muesli and add 2 tablespoons ground
hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own because I like organic stuff and knowing what’s gone into my food. you could of course simply buy no sugar muesli and add 2 tablespoons ground
Loubprv
Volunteer
in
MPN Voice
10 months ago
Diagnosed 2015 complete CBC has changed
last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated. Fecal test normal no blood. I am exhausted no energy sleeping way too
last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated. Fecal test normal no blood. I am exhausted no energy sleeping way too
Pickleball11
in
MPN Voice
10 months ago
Should I be worried?
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Vindicatrix
in
CLL Support
7 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
venetoclax and obinutuzumab treatment for cll
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
dellkota
in
CLL Support
7 months ago
First six-month blood test, and my lymphocytes have gone down!
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
Jazzandblues
in
CLL Support
7 months ago
CLL Patients -- Venclexta
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
AlexCam
in
CLL Support
7 months ago
New to the group. Should I worry concerning my latest blood results?
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
povhgc
in
CLL Support
7 months ago
confused!!!
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
Dragonfly766
in
CLL Support
7 months ago
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