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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
4 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
4 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
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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
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
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
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
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
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
9 months ago
diagnosed in Feb. with atrial flutter at ED
Chronic
lymphocytic
leukemia
and doing well. I have had a Holter, stress test, and echocardiogram.
Chronic
lymphocytic
leukemia
and doing well. I have had a Holter, stress test, and echocardiogram.
PRM54
in
AF Association
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
5 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
9 months 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
5 months ago
FDA Approves Zanubrutinib for Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphom
with chronic
lymphocytic
leukemia
or small
lymphocytic
lymphoma.
with chronic
lymphocytic
leukemia
or small
lymphocytic
lymphoma.
lankisterguy
Volunteer
in
CLL Support
1 year ago
Zanubrutinib vs. Ibrutinib Patient Power Video by Dr. Jennifer Brown MD PHD
https://www.patientpower.info/chronic-
lymphocytic
-
leukemia
/2022-ash-conference-report-cll-btk-inhibitors-update?
https://www.patientpower.info/chronic-
lymphocytic
-
leukemia
/2022-ash-conference-report-cll-btk-inhibitors-update?
lankisterguy
Volunteer
in
CLL Support
1 year 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
6 months ago
Statin use, survival and incidence of thrombosis among older patients with polycythemia vera and essential thrombocythemia
Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET. https://onlinelibrary.wiley.com/doi/10.1002/cam4.6528
Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET. https://onlinelibrary.wiley.com/doi/10.1002/cam4.6528
Manouche
in
MPN Voice
9 months 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
6 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
6 months ago
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