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Another HSCT question….
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
krikri1989ho
in
CLL Support
3 years ago
Long term tocilizumab use
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
christine2715
in
PMRGCAuk
3 years ago
Husband Update
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
TM76
in
MPN Voice
3 years ago
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More on Covid vaccines and the inmunocompromised.
Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06, 2021, How effective are Covid vaccines if your immune system is compromised by HIV, cancer or a recent organ transplant? Faced with very little
Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06, 2021, How effective are Covid vaccines if your immune system is compromised by HIV, cancer or a recent organ transplant? Faced with very little
Iupiter
in
CLL Support
3 years ago
Fatigue and very hot flushes
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
AnniesRyder5
in
PMRGCAuk
3 years ago
Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
krikri1989ho
in
CLL Support
3 years ago
Vaccine efficacy for COPD and immune compromised people
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
macnsyl
in
Lung Conditions Community Forum
3 years ago
Hi, is it possible to still have PA even though my parietal cell and intrinsic factor antibody are negative and my b12 is low?
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Rocky213
in
Pernicious Anaemia Society
3 years ago
Introduction of myself, PMF, from China
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
merlisa
in
MPN Voice
3 years ago
Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
Suzita76
in
PMRGCAuk
3 years ago
Recently diagnosed with MF
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
67Red
in
MPN Voice
3 years ago
Tocilizumab
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
AncientMariner
in
PMRGCAuk
3 years ago
A further update on the old taper journey ...
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
LemonZest11
in
PMRGCAuk
3 years ago
mpal leukaemia
Hi Would really love to hear from anyone who has experience with this rare type of leukaemia. My son was diagnosed in December 2020 and is about to undergo a bone marrow transplant
Hi Would really love to hear from anyone who has experience with this rare type of leukaemia. My son was diagnosed in December 2020 and is about to undergo a bone marrow transplant
su0906
in
Leukaemia Support
3 years ago
“I think we’ll cure leukemia in my lifetime”
“Is there anything else you’d like to share about leukemia treatment? I'm very excited because I think we’ll cure leukemia in my lifetime. We’ve already come so far. For example, before 2000, patients with Philadelphia chromosome-positive acute lymphoblastic leukemia had a survival rate of 10%. Targeted
“Is there anything else you’d like to share about leukemia treatment? I'm very excited because I think we’ll cure leukemia in my lifetime. We’ve already come so far. For example, before 2000, patients with Philadelphia chromosome-positive acute lymphoblastic leukemia had a survival rate of 10%. Targeted
Manouche
in
MPN Voice
3 years ago
Had anyone had the Covid antibody test?
Saw a webinar in which it was suggested that a fairly small study showed people taking tocilizumab, mycophenelate, predisilone or methatrixate might only be covered 35-55% for the Covid vaccine. I am taking three of these. It recommended an antibody test - it was the SARS COVID anti spike test I think
Saw a webinar in which it was suggested that a fairly small study showed people taking tocilizumab, mycophenelate, predisilone or methatrixate might only be covered 35-55% for the Covid vaccine. I am taking three of these. It recommended an antibody test - it was the SARS COVID anti spike test I think
christine2715
in
PMRGCAuk
3 years ago
Butterfingers! Feeling frustrated and poor.
I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth. Since being on
I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth. Since being on
Hidden
in
PMRGCAuk
3 years ago
WARWICK'S ASCT ~ LATEST UPDATE...
Evening all... :-) Below I have Posted Warwick's latest Update on his Stem Cell Transplant journey... Best wishes all, stay safe & well... Steve
[i]Re: WARWICK's ASCT Journey Begins Today...[/i]
Post by Warwick » Fri May 21, 2021 10:09 am Hello everybody I am now at day 86 post transplant
Evening all... :-) Below I have Posted Warwick's latest Update on his Stem Cell Transplant journey... Best wishes all, stay safe & well... Steve
[i]Re: WARWICK's ASCT Journey Begins Today...[/i]
Post by Warwick » Fri May 21, 2021 10:09 am Hello everybody I am now at day 86 post transplant
socrates_8
in
MPN Voice
3 years ago
A day of surprises
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
ConniesDad
in
MPN Voice
3 years ago
Information for people in the UK on Tocilizumab (Ro-Actemra) injections
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Suzita76
in
PMRGCAuk
3 years ago
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