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Stem cell mobilization
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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
B12 Testing
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
Pain12345
in
Pernicious Anaemia Society
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
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“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
Tocilizumab treatment extension, and latest PET-CT scan results
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Suzita76
in
PMRGCAuk
3 years ago
Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
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
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
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
A fascinating podcast on the history and current state of stem cell regeneration.
Did you know humans make around 2 1/2 million red blood cells a second? Did you know the only the stem cell transplant that can currently be done is a bone marrow one? Did you know, at a guess, there have been something like 2 million bone marrow transplants to date. I came across this episode in the
Did you know humans make around 2 1/2 million red blood cells a second? Did you know the only the stem cell transplant that can currently be done is a bone marrow one? Did you know, at a guess, there have been something like 2 million bone marrow transplants to date. I came across this episode in the
Magentas
in
MPN Voice
3 years ago
Stem cell transplant saved me
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
patricih
in
Non Hodgkin's Lymphoma Friends
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
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
Help make a drug to treat GvHD available to patients
You can help make a drug to treat GvHD available to patients in Canada, regardless of where you live. CLL Canada, along with an alliance of 8 other blood cancer organizations, is preparing patient input submissions for the Canadian Agency for Drugs and Technologies (CADTH) and Institut national d'excellence
You can help make a drug to treat GvHD available to patients in Canada, regardless of where you live. CLL Canada, along with an alliance of 8 other blood cancer organizations, is preparing patient input submissions for the Canadian Agency for Drugs and Technologies (CADTH) and Institut national d'excellence
CLL_Canada_Group
in
CLL Support
3 years ago
Auto Stem Cell transplant?
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
skinkade
in
Non Hodgkin's Lymphoma Friends
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
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
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