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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
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
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Mouth ulcer
Help. I’m currently on methotrexate and have.a large mouth ulcer. I’ve tried anbesol, bonjela and got cordolsyl mouth wash but nothing seems to shift it. I get a drs prescription is the next thing . Just wondered if any kind person could point me in the next direction. Thanks
Help. I’m currently on methotrexate and have.a large mouth ulcer. I’ve tried anbesol, bonjela and got cordolsyl mouth wash but nothing seems to shift it. I get a drs prescription is the next thing . Just wondered if any kind person could point me in the next direction. Thanks
Pinksupersec
in
NRAS
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
Sore mouth, ulcers, avastin.
Had avastin added to my carbo/taxol regime two weeks a go. For the last 10 days I ha ve had a painful, sore burning mouth and ulcers on my tongue. I’ve been using the mouthwashes from the hospital, which haven’t really helped but sting a lot! Anyone else suffer with this and how long does it last?
Had avastin added to my carbo/taxol regime two weeks a go. For the last 10 days I ha ve had a painful, sore burning mouth and ulcers on my tongue. I’ve been using the mouthwashes from the hospital, which haven’t really helped but sting a lot! Anyone else suffer with this and how long does it last?
Artyrose
in
My Ovacome
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
Sore mouth
Hi, woke up this morning with sore lips inside, top is mouth ulcers right across and bottom red and sore, never had mouth ulcers before, is it from prednisolone or just one of those things? Has anyone else had this?
Hi, woke up this morning with sore lips inside, top is mouth ulcers right across and bottom red and sore, never had mouth ulcers before, is it from prednisolone or just one of those things? Has anyone else had this?
Hidden
in
PMRGCAuk
4 years ago
Unexplained Mouth pain
Hi I have lupus and sjögrens syndrome and have had pain in my mouth located in my gums for more than 7 months now. My dentist first suspected that it was some kind of chronic gingivitis and that it was a side effect of my medication Benlysta, which I paused. However, since then the symtoms are getting
Hi I have lupus and sjögrens syndrome and have had pain in my mouth located in my gums for more than 7 months now. My dentist first suspected that it was some kind of chronic gingivitis and that it was a side effect of my medication Benlysta, which I paused. However, since then the symtoms are getting
Kahina
in
LUPUS UK
4 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
Signs of B12 deficiency in the mouth
Hi All, I posted most of this on another thread but thought I'd start my own thread in case someone found it useful. Sometimes the route to diagnosis of B12 deficiency can involve other health professionals besides GPs. If you have a GP who won't listen to your concerns about B12 deficiency maybe other
Hi All, I posted most of this on another thread but thought I'd start my own thread in case someone found it useful. Sometimes the route to diagnosis of B12 deficiency can involve other health professionals besides GPs. If you have a GP who won't listen to your concerns about B12 deficiency maybe other
Sleepybunny
in
Pernicious Anaemia Society
4 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
Can this really just be anxiety
Iv been feeling rough again this week. Convinced it's something more than anxiety. I have a sore throat which dr reckons is from reflux. He also says I have ibs. My throat is red, as yellow spots and is swollen. I get tingling inside my mouth especially lip area, some of this now has ulcers. Cant have
Iv been feeling rough again this week. Convinced it's something more than anxiety. I have a sore throat which dr reckons is from reflux. He also says I have ibs. My throat is red, as yellow spots and is swollen. I get tingling inside my mouth especially lip area, some of this now has ulcers. Cant have
Den64
in
Anxiety Support
4 years ago
Fluoride toothpaste
Hi I’m using Durophat 5000 toothpaste , my teeth are weak despite calcium supplements I’m using this toothpaste to protect my precious teeth , I get a dry mouth due to RA too . As I apply the Durophat topically to 2 particular teeth to add more protection I’m wondering if it’s inhibiting my Liothyronine
Hi I’m using Durophat 5000 toothpaste , my teeth are weak despite calcium supplements I’m using this toothpaste to protect my precious teeth , I get a dry mouth due to RA too . As I apply the Durophat topically to 2 particular teeth to add more protection I’m wondering if it’s inhibiting my Liothyronine
Hidden
in
Thyroid UK
4 years ago
Any advice for dealing with extreme anxiety of having to remove and replace hormonal coil?
So I had the mirena coil fitted about 2 years ago. Although everything has been great, I had an absolutely horrific insertion (I lost consciousness on the bed and vomited afterwards from the pain). I’m normally able to brush this experience off but tonight I’ve just been filled with this horrific sense
So I had the mirena coil fitted about 2 years ago. Although everything has been great, I had an absolutely horrific insertion (I lost consciousness on the bed and vomited afterwards from the pain). I’m normally able to brush this experience off but tonight I’ve just been filled with this horrific sense
Niahn
in
Endometriosis UK
4 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
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
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