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Cutaneous T cell lymphoma (CTCL)
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Tapering
Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a
Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a
Noni71
in
PMRGCAuk
7 months ago
stem cell transplant survival with MF
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
Scaredy_cat
in
MPN Voice
5 months ago
Aortitis
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
Dance62
in
PMRGCAuk
7 months ago
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Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
5 months ago
On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
5 months ago
swollen armpit prevnar 20
hello group, I’m relatively newly diagnosed with SLL (June 2022). Mild disease so far; watch and wait. Favorable genetic markers so far (t12/18 mutated). 46 yr female in good shape. Normal blood work. I recently had the prevnar 20 vax per CLL specialist. On day 2 post vax the lymph node in my right
hello group, I’m relatively newly diagnosed with SLL (June 2022). Mild disease so far; watch and wait. Favorable genetic markers so far (t12/18 mutated). 46 yr female in good shape. Normal blood work. I recently had the prevnar 20 vax per CLL specialist. On day 2 post vax the lymph node in my right
Capecodlover34
in
CLL Support
1 year ago
The Bone-Marrow-Transplant Revolution
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
Hidden
in
CLL Support
5 months ago
Stem cell transplant
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
Leighcox85
in
MPN Voice
6 months ago
Platelets dropped after obinituzumab and won't rise even after transfusion 🚨
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
BMFCDRW
in
CLL Support
6 months ago
Human stem cell transplantation for Parkinson’s disease: A systematic review
Interestinghttps://www.researchgate.net/publication/379454508_Human_stem_cell_transplantation_for_Parkinson's_disease_A_systematic_review_of_in_situ_survival_and_maturation_of_progenitors_derived_from_human_embryonic_or_induced_stem_cells_in_Parkinsonian_models
Interestinghttps://www.researchgate.net/publication/379454508_Human_stem_cell_transplantation_for_Parkinson's_disease_A_systematic_review_of_in_situ_survival_and_maturation_of_progenitors_derived_from_human_embryonic_or_induced_stem_cells_in_Parkinsonian_models
Farooqji
in
Cure Parkinson's
6 months ago
Momelotinib for Myelofibrosis
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Cazbolac
in
MPN Voice
6 months ago
Travel and Ibrance
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
Artesa
in
SHARE Metastatic Breast Cancer
6 months ago
stem cell for et?
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Preacherswife
in
MPN Voice
6 months ago
AXSL1 gene mutation
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
merlisa
in
MPN Voice
6 months ago
SCT journey update No.2
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
LFCLove
in
MPN Voice
6 months ago
HSCT early in MS
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
BettysMom
in
My MSAA Community
7 months ago
Stem Cell transplant register search goes on…
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
LFCLove
in
MPN Voice
7 months ago
Glad to see more and more players are jumping into the stem cell therapy
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
Farooqji
in
Cure Parkinson's
7 months ago
Stem cell transplant
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
A7x1823eb
in
AMN EASIER
7 months ago
Acalabrutinib treatment going well
I have been on one dose daily of Acalabrutinib for 4 weeks now and am doing quite well. The fatigue has improved quite a lot, although I won't be running any marathons, and I don't feel sick every day. So a good response in my opinion. Headaches and some muscle discomfort daily but Tylenol dampens
I have been on one dose daily of Acalabrutinib for 4 weeks now and am doing quite well. The fatigue has improved quite a lot, although I won't be running any marathons, and I don't feel sick every day. So a good response in my opinion. Headaches and some muscle discomfort daily but Tylenol dampens
sandybeaches
in
CLL Support
1 year ago
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