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Cutaneous T cell lymphoma (CTCL)
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CCL - Debilitating exhaustion
I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for
I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for
PAgrandmom
in
CLL Support
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
2 years ago
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Creatinine elevated on CLL
I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this situation? Any suggestions? Thank you
I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this situation? Any suggestions? Thank you
farber
in
CLL Support
2 years ago
Dostarlimab - Check point inhibitor
Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who had Colorectal cancer. Now all the patients have been cured and all treatment stopped. The best part was that the new drug had minimal side effects
Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who had Colorectal cancer. Now all the patients have been cured and all treatment stopped. The best part was that the new drug had minimal side effects
nuji
in
CLL Support
2 years ago
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
O&V treatment - a positive update from ‘The Kitchen’
Hello everyone, Cycle #2 of O was a pleasure, I was treated to a relaxing aromatherapy reflexology session. Hats off to Guy’s Cancer Centre, you really know how to look after your guests…if you could possibly provide champagne and canapés next time, that would really tick the box 😉 So today was the
Hello everyone, Cycle #2 of O was a pleasure, I was treated to a relaxing aromatherapy reflexology session. Hats off to Guy’s Cancer Centre, you really know how to look after your guests…if you could possibly provide champagne and canapés next time, that would really tick the box 😉 So today was the
Miu48
in
CLL Support
2 years ago
Parietal Cell Antibody test refused by GP
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
Needleandthread44
in
Pernicious Anaemia Society
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
Waiting for Pirtobrutinib
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
KLWC
in
CLL Support
2 years ago
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
Large B-Cell Lymphoma
My 81 year old wife has been diagnosed with Large B-Cell Lymphoma. Her first diagnosis was follicular NHL (2021) and her first treatment was 6 rounds of R-CHOP (July-December 2021) . Her petscan after 4 rounds looked very promising, but her petscan after the full 6 treatments indicated that her lymphoma
My 81 year old wife has been diagnosed with Large B-Cell Lymphoma. Her first diagnosis was follicular NHL (2021) and her first treatment was 6 rounds of R-CHOP (July-December 2021) . Her petscan after 4 rounds looked very promising, but her petscan after the full 6 treatments indicated that her lymphoma
ronsolo306
in
Non Hodgkin's Lymphoma Friends
2 years ago
CAR T-Cell Use Possible in Metastatic Castration-Resistant Prostate Cancer
A few years off but one to keep an eye on. CAR T-Cell Use Possible in Metastatic Castration-Resistant Prostate Cancer March 7, 2022 Nichole Tucker In an interview with Targeted Oncology, Tanya Dorff, MD, discussed the exploration of chimeric antigen receptor T-cell therapy in prostate cancer, including
A few years off but one to keep an eye on. CAR T-Cell Use Possible in Metastatic Castration-Resistant Prostate Cancer March 7, 2022 Nichole Tucker In an interview with Targeted Oncology, Tanya Dorff, MD, discussed the exploration of chimeric antigen receptor T-cell therapy in prostate cancer, including
Scout4answers
in
Advanced Prostate Cancer
3 years ago
Novel COVID-19 Vaccine Shows Promise for People with Leukemia and Lymphoma
Following on from https://healthunlocked.com/cllsupport/posts/private/147878379/hope-for-a-universal-t-cell-vaccine-against-sarbecoviruses-i.e.-sars-cov-1-sars-cov-2-and-all-variants-sars-cov-3-and-so-on?responses=147880773&utm_source=notification&utm_medium=email&utm_campaign=email_individual_response
Following on from https://healthunlocked.com/cllsupport/posts/private/147878379/hope-for-a-universal-t-cell-vaccine-against-sarbecoviruses-i.e.-sars-cov-1-sars-cov-2-and-all-variants-sars-cov-3-and-so-on?responses=147880773&utm_source=notification&utm_medium=email&utm_campaign=email_individual_response
bennevisplace
in
CLL Support
2 years ago
Update on “20 years old and Scared”
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091
in
MPN Voice
2 years ago
EVOLVE trial for high risk chronic lymphocytic leukemia - CLL patients will test an early treatment intervention Vs watch and wait
'[i]The goal of the S1925 [EVOLVE] trial is to find out if early treatment can help people with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) live longer and have a better quality of life.[/i]' '[i]Studies show that early treatment using older chemotherapy drugs doesn’t help
'[i]The goal of the S1925 [EVOLVE] trial is to find out if early treatment can help people with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) live longer and have a better quality of life.[/i]' '[i]Studies show that early treatment using older chemotherapy drugs doesn’t help
CLLerinOz
Administrator
in
CLL Support
2 years ago
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