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Cutaneous T cell lymphoma (CTCL)
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Question on PMR and Temporal Arteritis
Does anyone know: would an MRI show Temporal Arteritis or would a person need a biopsy to determine if Temporal Arteritis was present? Asking for a person newly diagnosed with PMR and in the ER dept was told she had Temporal Arteritis. Yesterday she went to the rheumatologist and was told she definitely
Does anyone know: would an MRI show Temporal Arteritis or would a person need a biopsy to determine if Temporal Arteritis was present? Asking for a person newly diagnosed with PMR and in the ER dept was told she had Temporal Arteritis. Yesterday she went to the rheumatologist and was told she definitely
Musiclady18
in
PMRGCAuk
6 months ago
PV & Gene Editing for Sickle cell anemia
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
ERei
in
MPN Voice
10 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
3 months ago
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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
3 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
3 months ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
3 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
3 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
4 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
4 months ago
Richter’s Transformation
A reminder to everyone going through the treatment process. Currently, Richter's cancer is not considered an incurable cancer or one with a poor prognosis. It is currently considered an aggressive lymphoma. Mortality is the same as that of diffuse large B-cell lymphoma. The greater the tumor uptake,
A reminder to everyone going through the treatment process. Currently, Richter's cancer is not considered an incurable cancer or one with a poor prognosis. It is currently considered an aggressive lymphoma. Mortality is the same as that of diffuse large B-cell lymphoma. The greater the tumor uptake,
Priss69
in
CLL Support
1 year 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
4 months ago
Patients with higher apolipoprotein A-I levels at greater risk for giant cell arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
perceptual63
in
PMRGCAuk
6 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
4 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
4 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
4 months ago
Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len ++++++++++++++++++++++++++++ Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len ++++++++++++++++++++++++++++ Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
lankisterguy
Volunteer
in
CLL Support
1 year ago
Clinical trial with monoclonal antibodies?
I've been asked to participate in a clinical trial in which I get an infusion of monoclonal antibodies. The team is wanting to know if this would help those with blood cancers have higher resistance to Covid. Any thoughts? I will discuss with my doctor but wanted more feedback.
I've been asked to participate in a clinical trial in which I get an infusion of monoclonal antibodies. The team is wanting to know if this would help those with blood cancers have higher resistance to Covid. Any thoughts? I will discuss with my doctor but wanted more feedback.
Tangolover
in
CLL Support
1 year 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
5 months ago
high monocytes
am at end of cycle 3 of o+v Today monocytes 31% I did need neupogen shot - wbc 1.6 and anc .6 does anyone know if this monocyte number is cause for concern, has anyone had this kind of thing before? This no has never been above 20 for me since I started treatment. I have had zero side effects.
am at end of cycle 3 of o+v Today monocytes 31% I did need neupogen shot - wbc 1.6 and anc .6 does anyone know if this monocyte number is cause for concern, has anyone had this kind of thing before? This no has never been above 20 for me since I started treatment. I have had zero side effects.
SurfSurf
in
CLL Support
1 year 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
5 months ago
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