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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
8 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
11 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
8 months ago
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Newly diagnosed
So I have had chronic lymphatic
leukaemia
for 6 years and recently diagnosed with prostate cancer.Father died from it and brother also has just had his prostate removed. .I’ve scored3/3 on Gleason, MRI showed a small area of shadow from which they took 17 and 2 active from that.
So I have had chronic lymphatic
leukaemia
for 6 years and recently diagnosed with prostate cancer.Father died from it and brother also has just had his prostate removed. .I’ve scored3/3 on Gleason, MRI showed a small area of shadow from which they took 17 and 2 active from that.
Stacky66
in
Prostate Cancer Network
1 year 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
11 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
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
11 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
11 months ago
March 2023 Treatment Update Webinars
THIS WEEK: ‘Latest advances in the treatment of acute myeloid
leukaemia
(AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic
leukaemia
(CLL)’ - Monday 27th @ 7pm ‘Latest advances in the treatment of chronic myeloid
leukaemia
(CML)’ - Tuesday
THIS WEEK: ‘Latest advances in the treatment of acute myeloid
leukaemia
(AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic
leukaemia
(CLL)’ - Monday 27th @ 7pm ‘Latest advances in the treatment of chronic myeloid
leukaemia
(CML)’ - Tuesday
LCAlex
in
Leukaemia Support
2 years 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
11 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
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
9 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
9 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
1 year 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
1 year 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
9 months ago
Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
AussieNeil
Partner
in
CLL Support
9 months ago
AI and CLL
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
MovingForward4423
in
CLL Support
9 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
1 year ago
How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
CLLerinOz
Administrator
in
CLL Support
10 months ago
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