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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
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
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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
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
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
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
in
Leukaemia Support
3 years ago
Update to ? Tocilizumab
I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and
I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and
Hiland
in
PMRGCAuk
3 years ago
WARWICK's ASCT Journey Begins Today...
Post by MPN-MATE Admin » Mon Feb 08, 2021 4:23 pm Hey everyone... :D As the subject of this Post is about Warwick's Allogenic Stem Cell Transplant journey, he will come back as he progresses through each stage of this journey to share the experience w/ ALL MPNers, who might have an interest... I met
Post by MPN-MATE Admin » Mon Feb 08, 2021 4:23 pm Hey everyone... :D As the subject of this Post is about Warwick's Allogenic Stem Cell Transplant journey, he will come back as he progresses through each stage of this journey to share the experience w/ ALL MPNers, who might have an interest... I met
socrates_8
in
MPN Voice
3 years ago
Has anyone had more than one FISH test?
I’ve been on IB for two years and 17p deleted and was wondering if the genetic mutations could change? I asked my oncologist and he said if I did the stem cell transplant he would request it but have any of you had a second test?
I’ve been on IB for two years and 17p deleted and was wondering if the genetic mutations could change? I asked my oncologist and he said if I did the stem cell transplant he would request it but have any of you had a second test?
steve_canada
in
CLL Support
3 years ago
Short Update on Ibrutinib + Idelalisib + Venetoclax "N of 1" trial after lower dose.
A update on my very surprising results when combining Ibrutinib + Idelalisib + Venetoclax. Initial Post with more detail: https://healthunlocked.com/cllsupport/posts/145327977/my-n-of-1-trial-with-ibrutinib-idelalisib-venetoclax-that-lead-to-remission-of-richters-in-three-weeks. I just had a second [
A update on my very surprising results when combining Ibrutinib + Idelalisib + Venetoclax. Initial Post with more detail: https://healthunlocked.com/cllsupport/posts/145327977/my-n-of-1-trial-with-ibrutinib-idelalisib-venetoclax-that-lead-to-remission-of-richters-in-three-weeks. I just had a second [
UniversallyPersonal
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
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
Quick Question to anyone previously shielding, over 70 and in Scotland
Hi all, It’s been a while since I’ve posted on the site but I’ve been keeping up to date with all your posts. I hope you’re all keeping safe and as well as you can. I have a question to anyone in their 70s who was/is officially shielding and lives in Scotland. Have you received your letter inviting
Hi all, It’s been a while since I’ve posted on the site but I’ve been keeping up to date with all your posts. I hope you’re all keeping safe and as well as you can. I have a question to anyone in their 70s who was/is officially shielding and lives in Scotland. Have you received your letter inviting
Froggie70
in
LUPUS UK
3 years ago
Richter's in Remission - 11 months post transplant
I've been away from HealthUnlocked for some time following my allogenic bone marrow transplant for Richter's Transformation 11 months ago at MDA Houston. I'm happy to report my transplant has been a success and I'm in complete remission from Richter's and I'm feeling great. I tolerated the transplant
I've been away from HealthUnlocked for some time following my allogenic bone marrow transplant for Richter's Transformation 11 months ago at MDA Houston. I'm happy to report my transplant has been a success and I'm in complete remission from Richter's and I'm feeling great. I tolerated the transplant
SarasotaPaul
in
CLL Support
3 years ago
Living in the USA with CLL and want to know where to sign up for your COVID-19 Vaccination? A State-by-State List
From MedPage Today: [i]Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.[/i] https://www.medpagetoday.com/infectiousdisease/covid19/90791 CLL Society's Official Statement:
Should I get the vaccine? Which
From MedPage Today: [i]Every state has posted information on its plan; many (though not all) list ways to sign up. Here are links to each state's vaccination web page.[/i] https://www.medpagetoday.com/infectiousdisease/covid19/90791 CLL Society's Official Statement:
Should I get the vaccine? Which
AussieNeil
Partner
in
CLL Support
4 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
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