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Immunodeficiencies and defective immune system
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Does the pill/coil halt progression?
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my
Sophhh
in
Endometriosis UK
9 months ago
11 months Post SCT
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
Billarina
in
CLL Support
25 days ago
SCT journey update No.4
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive
LFCLove
in
MPN Voice
1 month ago
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ASXL1 mutation 39% Worried about MF turning into leukemia
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
merlisa
in
Fight MPN
1 month ago
Continued Journey
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
FiArt12X
in
CLL Support
2 months ago
Continued Journey
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
FiArt12X
in
CLL Support
2 months ago
Myelofibrosis- GVHD graft, versus, host, disease.
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
2 months ago
Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
2 months ago
Continued Journey
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
FiArt12X
in
CLL Support
2 months ago
SCT journey update No.3
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
LFCLove
in
MPN Voice
2 months ago
Borderline TSH during cancer treatment
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
spongecat
in
Thyroid UK
2 months ago
continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
3 months ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
3 months ago
Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
3 months ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
3 months ago
New member - Post ET MF (Australia)
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
Hatchie
in
MPN Voice
3 months ago
Stem cell transplant (SCT) 15 months on
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
Scaredy_cat
in
MPN Voice
3 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
3 months ago
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
4 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
4 months ago
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