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Cutaneous T cell lymphoma (CTCL)
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11q and 17p
I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided. I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had
I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided. I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had
Joffre1
in
CLL Support
3 years ago
Clinical trial with Acalabrutinib and Obinutuzumab
I have the opportunity to be part of a clinical trial. The purpose of the study is to understand if early intervention (people on W&W in the high or very high risk group of needing treatment in the next 2 years but current protocol would not yet be treated) of CLL/SLL using targeted therapy will lead
I have the opportunity to be part of a clinical trial. The purpose of the study is to understand if early intervention (people on W&W in the high or very high risk group of needing treatment in the next 2 years but current protocol would not yet be treated) of CLL/SLL using targeted therapy will lead
Reflectionofsky
in
CLL Support
3 years ago
Journey update: LVV/GCA, tocilizumab and exercise
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
DeepThought2
in
PMRGCAuk
3 years ago
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Covid vaccine & PMR
Having had my vaccine today, I asked the nurse if my antibodies would produce equally as well as someone who didn’t have autoimmune issues. She said probably not but the only way to find out that would be to have an antibody test after the 2nd vaccine. I have thyroid issues, hashimotos, and PMR, has
Having had my vaccine today, I asked the nurse if my antibodies would produce equally as well as someone who didn’t have autoimmune issues. She said probably not but the only way to find out that would be to have an antibody test after the 2nd vaccine. I have thyroid issues, hashimotos, and PMR, has
Daisy1624
in
PMRGCAuk
3 years ago
post stem cell transplant covid question
I am now approaching 21 months post transplant (MF) and feeling well. My last consultation and bloods was about 3 months ago. I've only had phone consultations since March last year and so I'm hoping my next appointment, due in June, will be face to face at the QE B'ham where I had the transplant. I'm
I am now approaching 21 months post transplant (MF) and feeling well. My last consultation and bloods was about 3 months ago. I've only had phone consultations since March last year and so I'm hoping my next appointment, due in June, will be face to face at the QE B'ham where I had the transplant. I'm
Dodders
in
MPN Voice
3 years ago
Stem cell replacement
Has anyone traveled down the road of having stem cell/bone marrow transplant? I have MF It looks like it maybe a possibility for me.
Has anyone traveled down the road of having stem cell/bone marrow transplant? I have MF It looks like it maybe a possibility for me.
Grizly
in
MPN Voice
3 years ago
CAR-T THERAPY FAIL
Hi folks, We've just had the sad news today that my husband's CAR-T therapy treatment has failed. He has Mantel Cell Lymphomia. To say we are very sad about this is an understatement. We both had high hopes for this treatment and saw it as the last opportunity to be clear of the cancer. He went
Hi folks, We've just had the sad news today that my husband's CAR-T therapy treatment has failed. He has Mantel Cell Lymphomia. To say we are very sad about this is an understatement. We both had high hopes for this treatment and saw it as the last opportunity to be clear of the cancer. He went
pollyg2016
in
Non Hodgkin's Lymphoma Friends
3 years ago
Update after 6th RCHOP for follicular NHL
Hi, I had my PET scan last week after my 6th cycle of RCHOP. It came back clear with not activity, so I'm officially in now in remission! Have to get a shot of Rituximab in belly every 3 months for 2 years. This is for maintenance to make sure it doesn't come back. A 15 minute jab. Chemo is a feared
Hi, I had my PET scan last week after my 6th cycle of RCHOP. It came back clear with not activity, so I'm officially in now in remission! Have to get a shot of Rituximab in belly every 3 months for 2 years. This is for maintenance to make sure it doesn't come back. A 15 minute jab. Chemo is a feared
Russ70
in
Non Hodgkin's Lymphoma Friends
3 years ago
Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.
« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs
« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs
Manouche
in
MPN Voice
3 years ago
Update after BMB
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
Androg
in
MPN Voice
3 years ago
Questions about stents and support
Update and questions I haven't posted on here for a while for many reasons (including the whole COVID thing) but as I'm still trying to get my head round stuff and had questions, I'm hoping there are some of you out there who can offer me some ideas/support. I'm currently seen at the Brompton, where
Update and questions I haven't posted on here for a while for many reasons (including the whole COVID thing) but as I'm still trying to get my head round stuff and had questions, I'm hoping there are some of you out there who can offer me some ideas/support. I'm currently seen at the Brompton, where
SomersetJo
in
British Heart Foundation
3 years ago
Britain is launching a study to examine whether patients with immunosuppressed conditions have a less effective immune response to Covid-19
Just read this and felt it might be of interest, especially to those in the UK (you could take part). "Study launched into Covid-19 vaccine response among cancer patients DPA, Mar 03, 2021, Britain is launching a study to examine whether patients with immunosuppressed conditions have a less effective
Just read this and felt it might be of interest, especially to those in the UK (you could take part). "Study launched into Covid-19 vaccine response among cancer patients DPA, Mar 03, 2021, Britain is launching a study to examine whether patients with immunosuppressed conditions have a less effective
Iupiter
in
CLL Support
3 years ago
What are Tocilizumab and Sarilumab treatments for COVID?
The REMPA-CPAP Clinical trial results show that the drugs reduced the risk of death by 24% for critically ill patients and reduced the time spent in intensive care by up to 10 days. In light of these results, the UK government has said that supplies of tocilizumab are already available in hospitals
The REMPA-CPAP Clinical trial results show that the drugs reduced the risk of death by 24% for critically ill patients and reduced the time spent in intensive care by up to 10 days. In light of these results, the UK government has said that supplies of tocilizumab are already available in hospitals
Jm954
Administrator
in
CLL Support
3 years ago
How Can I Cure Leg Wasting ?
Pls , I Am 29 years old now and a Sickle Cell Patient too. When I was 19 years, my hip joint started to pain me and I attended to the hospital, they told me the hip is reducing so I have to wear crutches to walk and I did that for a year. However when I used the crutches for a year the pain reduced
Pls , I Am 29 years old now and a Sickle Cell Patient too. When I was 19 years, my hip joint started to pain me and I attended to the hospital, they told me the hip is reducing so I have to wear crutches to walk and I did that for a year. However when I used the crutches for a year the pain reduced
WarriorChild_
in
Sickle Cell Society
3 years ago
Re: WARWICK's ASCT Journey Begins Today...
Afternoon all... Warwick has managed to POST a reply on MATES, and if any of you can, I am sure that he would love to say hi... He's not feeling terribly himself Eight (8) days into his Stem Cell Transplant, but he did manage to
[i]POST[/i]
the message below on MATES, and so I Posted here again
Afternoon all... Warwick has managed to POST a reply on MATES, and if any of you can, I am sure that he would love to say hi... He's not feeling terribly himself Eight (8) days into his Stem Cell Transplant, but he did manage to
[i]POST[/i]
the message below on MATES, and so I Posted here again
socrates_8
in
MPN Voice
3 years ago
Friday 15th January, 2pm Webinar - COVID-19 vaccines – your questions answered
Two of our partner charities - Leukaemia Care and Lymphoma Action are to host this joint webinar for those living with lymphoma and leukaemia.
Date: Friday 15 January
Time: 2pm
The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with
Two of our partner charities - Leukaemia Care and Lymphoma Action are to host this joint webinar for those living with lymphoma and leukaemia.
Date: Friday 15 January
Time: 2pm
The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with
Jm954
Administrator
in
CLL Support
3 years ago
Tocilizumab extension
Hi I wrote a couple of weeks ago asking if anyone had been told that their tocilizumab was being extended. I’ve heard nothing from rheumatology or G.P but today I’ve had a txt from the company that deliver the injections to say they are delivering early March. Not sure if it’s the normal 8 weeks supply
Hi I wrote a couple of weeks ago asking if anyone had been told that their tocilizumab was being extended. I’ve heard nothing from rheumatology or G.P but today I’ve had a txt from the company that deliver the injections to say they are delivering early March. Not sure if it’s the normal 8 weeks supply
Devoid
in
PMRGCAuk
3 years ago
Webinar 9.30am, Wednesday 3rd March - Acute promyelocytic leukaemia (APL) treatment update
Please join us for the 1st in our series of free treatment updates in acute leukaemia. This webinar will update on how APL is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions. The
Please join us for the 1st in our series of free treatment updates in acute leukaemia. This webinar will update on how APL is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions. The
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
3 years ago
Good end to a bad year... My MRD Results are in!
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
MikeHoff
in
CLL Support
3 years ago
Nervous
Sorry I'm going a bit off piste but I feel very scared. My husband has had trouble with his mobility and memory for a couple of years and yesterday got a diagnosis of Normal postural Hydrocephalus. He has been advised to have a lumber puncture to drain some fluid to see if it temporarily improves with
Sorry I'm going a bit off piste but I feel very scared. My husband has had trouble with his mobility and memory for a couple of years and yesterday got a diagnosis of Normal postural Hydrocephalus. He has been advised to have a lumber puncture to drain some fluid to see if it temporarily improves with
Suet3942
in
PMRGCAuk
3 years ago
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