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Experiences with
Cutaneous T cell lymphoma (CTCL)
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Derealisation / dissociation disorder
Hi guys, So my journey started May 2016 I lost my mother aged 28. After months of excruciating grief I got a terrible virus (labrynthitis) in December last year which by January hadn't gone. In January 2017 I got a dissociation disorder. This presented itself as derealisation. It's hard to explain
Hi guys, So my journey started May 2016 I lost my mother aged 28. After months of excruciating grief I got a terrible virus (labrynthitis) in December last year which by January hadn't gone. In January 2017 I got a dissociation disorder. This presented itself as derealisation. It's hard to explain
wowserclo
in
Thyroid UK
7 years ago
I refused Chemo 2 months ago and I am trying the natural path
Call me crazy but after alot of research and many nights up late thinking about my situation I decided to tell the pros at MD Anderson that I would wait instead of starting a clinical trial that they recommended. I really don't know how all of this will turn out but I have faith that I have made the
Call me crazy but after alot of research and many nights up late thinking about my situation I decided to tell the pros at MD Anderson that I would wait instead of starting a clinical trial that they recommended. I really don't know how all of this will turn out but I have faith that I have made the
BCTexas
in
CLL Support
7 years ago
Verastem, with Phase 3 Results, to Request FDA Approve Oral Duvelisib to Treat Advanced CLL and SLL
Verastem’s duvelisib was seen to outperform Arzerra (ofatumumab) in a Phase 3 trial of patients with relapsed or refractory chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL), the company announced. The oral therapy nearly halved the risk of disease progression or death, and held
Verastem’s duvelisib was seen to outperform Arzerra (ofatumumab) in a Phase 3 trial of patients with relapsed or refractory chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL), the company announced. The oral therapy nearly halved the risk of disease progression or death, and held
wmay13241
in
CLL Support
7 years ago
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Stem Cell Transplant research
Graft-versus-host disease successfully prevented : https://www.sciencedaily.com/releases/2017/04/170418094535.htm
Graft-versus-host disease successfully prevented : https://www.sciencedaily.com/releases/2017/04/170418094535.htm
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
7 years ago
More seizures!!
Hi all thought i would bring you up to date as not posted for a while. After having a seizure in feb I was told it could be a one off, no such luck as had another in june again at night and almost the same time as before! They kept me in hospital for a few days so I could see the Neurologist, bit of
Hi all thought i would bring you up to date as not posted for a while. After having a seizure in feb I was told it could be a one off, no such luck as had another in june again at night and almost the same time as before! They kept me in hospital for a few days so I could see the Neurologist, bit of
jlyndauk2002
in
PMRGCAuk
7 years ago
discovering your own sickle cell as it is not anyone else's
I have had sickle cell all my life 45 years but only did I discover it in the last few years mainly just an ache in the lower region and then later when I was doing boot camp exercises. I had been seeing a physio for 2 years and always monthly I had my lower section re-adjusted but then it moved to upper
I have had sickle cell all my life 45 years but only did I discover it in the last few years mainly just an ache in the lower region and then later when I was doing boot camp exercises. I had been seeing a physio for 2 years and always monthly I had my lower section re-adjusted but then it moved to upper
kilincli
in
Sickle Cell Society
7 years ago
Rituximab vs abatacept-- any thoughts?
I end my rheumatologist suspect that Enbrel has stopped working for me. She suggested changing to rituximab or abatacept. Anyone here have experience with this change? Did you have good results?
I end my rheumatologist suspect that Enbrel has stopped working for me. She suggested changing to rituximab or abatacept. Anyone here have experience with this change? Did you have good results?
shareasmile
in
LUPUS UK
7 years ago
surgery
I have sickle cell anemia homozygous and it is killing me I wish to undergo a bone marrow transplant surgery but as you my know it very expensive thus I am writing to ask is there an organizations that would fund my surgery . please enlighten me .
I have sickle cell anemia homozygous and it is killing me I wish to undergo a bone marrow transplant surgery but as you my know it very expensive thus I am writing to ask is there an organizations that would fund my surgery . please enlighten me .
Hidden
in
Sickle Cell Society
7 years ago
Balooning lymph nodes
Male 62y, 7.5 years since diagnosis, last wbc at 60k which was 20k higher than about 18 months previously. Lymph node swellings in neck and shoulders have increased at an alarming pace in the last couple of months after being progressively stable for the last 3-4 years, although generally I still feel
Male 62y, 7.5 years since diagnosis, last wbc at 60k which was 20k higher than about 18 months previously. Lymph node swellings in neck and shoulders have increased at an alarming pace in the last couple of months after being progressively stable for the last 3-4 years, although generally I still feel
Redlion
in
CLL Support
7 years ago
Lymphoma?
I've just seen Rheumy yesterday and it's the first time he's ever mentioned in 5yrs that I'm at increased risk of lymphoma. I'm useless when they just randomly say something and I'm like yeah ok. I didn't even ask why he thought this or what it was. He just said if I started getting night sweats and
I've just seen Rheumy yesterday and it's the first time he's ever mentioned in 5yrs that I'm at increased risk of lymphoma. I'm useless when they just randomly say something and I'm like yeah ok. I didn't even ask why he thought this or what it was. He just said if I started getting night sweats and
Ljay
in
LUPUS UK
7 years ago
Update to Specialist 1st visit
Hi everyone, Thank you for the support and information shared to my original post. As promised, I’m sharing what was explained to me by my referring hematologist regarding the letter sent her by the specialist. This is my experience and I want to be careful to not alarm any other forum members. This
Hi everyone, Thank you for the support and information shared to my original post. As promised, I’m sharing what was explained to me by my referring hematologist regarding the letter sent her by the specialist. This is my experience and I want to be careful to not alarm any other forum members. This
Cmg5935
in
MPN Voice
7 years ago
Myleofibrosis and acute myeloid leukaemia
I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a
I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a
Paul278mc
in
MPN Voice
7 years ago
Feedback please
How quickly do swollen lymph nodes respond to BR? What are your experiences in hair loss? Same re: side effects? I will be starting treatment soon. Thanks.
How quickly do swollen lymph nodes respond to BR? What are your experiences in hair loss? Same re: side effects? I will be starting treatment soon. Thanks.
4365jan
in
CLL Support
7 years ago
Sickle Cell Trait
I have just been diagnosed with Sickle Cell Trait.Either trait can have the same symptoms of the disease or I have full blown sickle cell anemia.Both sides of my family have Southern European ancestry. Detached retinas run in my dads side.I have week retinas with holes.I have been anemic and had severe
I have just been diagnosed with Sickle Cell Trait.Either trait can have the same symptoms of the disease or I have full blown sickle cell anemia.Both sides of my family have Southern European ancestry. Detached retinas run in my dads side.I have week retinas with holes.I have been anemic and had severe
Kimr4
in
Sickle Cell Society
7 years ago
Ibrutinib doing its job well
It's been a couple of months since I last posted and all is going well. WBC is coming down nicely and platelets, haemoglobin etc all in the healthy range. Joint pain is less often and I know that it will pass within a couple of days. Picking up on my exercise walking a local reservoir at pace (7.5k
It's been a couple of months since I last posted and all is going well. WBC is coming down nicely and platelets, haemoglobin etc all in the healthy range. Joint pain is less often and I know that it will pass within a couple of days. Picking up on my exercise walking a local reservoir at pace (7.5k
KAS8
in
CLL Support
7 years ago
Is my sickle cell acting up again?
I am 16 and have been diagnosed with sickle cell traits at child birth already, I was born three months early and have had trouble with breathing. I had my first crisis at the age of 1 and another at 7 I haven't been experiencing that many problems but I am an athlete and recovering hurts a lot but lately
I am 16 and have been diagnosed with sickle cell traits at child birth already, I was born three months early and have had trouble with breathing. I had my first crisis at the age of 1 and another at 7 I haven't been experiencing that many problems but I am an athlete and recovering hurts a lot but lately
NisaInnit
in
Sickle Cell Society
7 years ago
Is there a fix for Dermatitis Herpetiformis.
After living with DH for 3 years and being on Dapsone the same, I am wondering if anyone has a good practitioner who understands this condition and can help get to a solution. I'm very discouraged regarding my lack of progress, and the probability that taking Dapsone may be causing permanent damage
After living with DH for 3 years and being on Dapsone the same, I am wondering if anyone has a good practitioner who understands this condition and can help get to a solution. I'm very discouraged regarding my lack of progress, and the probability that taking Dapsone may be causing permanent damage
dwaage1
in
Gluten Free Guerrillas
7 years ago
MZL - DLB Cell LYMPHOMA
Hello All Just wondering if anyone else has had a similar experience to mine In December 2016 i was diagnosed with a MZL (abdominal Mass) stage 3, had treatment of 8 cycles of RCVP, mid term scan showed abdominal mass had shrunk by a third, at the end of the treatment the final scan was showing what
Hello All Just wondering if anyone else has had a similar experience to mine In December 2016 i was diagnosed with a MZL (abdominal Mass) stage 3, had treatment of 8 cycles of RCVP, mid term scan showed abdominal mass had shrunk by a third, at the end of the treatment the final scan was showing what
Blueb
in
Non Hodgkin's Lymphoma Friends
7 years ago
Advice
Hi folks - I've just been diagnosed though I think it's been going awhile - I'm 70 living in the wilds of Brittany and am trying to work out a regime which might deal with the problem naturally before I get sucked into pharma world. So far I've settled on raw garlic (just as well I'm on my own !) - milk
Hi folks - I've just been diagnosed though I think it's been going awhile - I'm 70 living in the wilds of Brittany and am trying to work out a regime which might deal with the problem naturally before I get sucked into pharma world. So far I've settled on raw garlic (just as well I'm on my own !) - milk
John-Searle
in
CLL Support
7 years ago
Digestive Enzymes
Hi all, Love all the care, information and support here at Health Unlocked. Brilliant! Does anyone take digestive enzymes (like Pepsin, Betaine hydrochloride) or apple cider vinegar to help sore tummies with any success? Or are we not supposed to? Ta.
Hi all, Love all the care, information and support here at Health Unlocked. Brilliant! Does anyone take digestive enzymes (like Pepsin, Betaine hydrochloride) or apple cider vinegar to help sore tummies with any success? Or are we not supposed to? Ta.
Lizzy71
in
PBC Foundation
7 years ago
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