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SCT journey update No.2
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
LFCLove
in
MPN Voice
5 months ago
Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
5 months ago
HSCT early in MS
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
BettysMom
in
My MSAA Community
5 months ago
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Stem Cell transplant register search goes on…
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
LFCLove
in
MPN Voice
5 months ago
Glad to see more and more players are jumping into the stem cell therapy
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
Farooqji
in
Cure Parkinson's
6 months ago
Carbimazole & Antithyroid arthritis
Hello, I’m a 33 year old woman, I was diagnosed with an overactive thyroid around 2months ago, was put on 15mg carbimazole a day. Started with a painful mouth ulcer so stopped medication & waited to see my consultant for advice as I didn’t know how bad the mouth ulcer had to be, he advised me to go back
Hello, I’m a 33 year old woman, I was diagnosed with an overactive thyroid around 2months ago, was put on 15mg carbimazole a day. Started with a painful mouth ulcer so stopped medication & waited to see my consultant for advice as I didn’t know how bad the mouth ulcer had to be, he advised me to go back
Abimilne
in
Thyroid UK
1 year ago
Stem cell transplant
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
A7x1823eb
in
AMN EASIER
6 months ago
carbimazole & antithyroid arthritis
Hello, I’m a 33 year old woman, I was diagnosed with an overactive thyroid around 2months ago, was put on 15mg carbimazole a day. Started with a painful mouth ulcer so stopped medication & waited to see my consultant for advice as I didn’t know how bad the mouth ulcer had to be, he advised me to go back
Hello, I’m a 33 year old woman, I was diagnosed with an overactive thyroid around 2months ago, was put on 15mg carbimazole a day. Started with a painful mouth ulcer so stopped medication & waited to see my consultant for advice as I didn’t know how bad the mouth ulcer had to be, he advised me to go back
Abimilne
in
NRAS
1 year ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
PhysAssist
in
MPN Voice
6 months ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
6 months ago
biochemical recurrence after RP. +post leukemia
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
junkwerc
in
Prostate Cancer Network
6 months ago
High BLood Pressure, Kidney failure, cause discovered
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
phebamom
in
High Blood Pressure Support
6 months ago
Good sats - so why so breathless?
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
Timberman
in
Lung Conditions Community Forum
6 months ago
Time flies... when you're having babies!
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
7 months ago
One year stem cell transplant anniversary
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
Scaredy_cat
in
MPN Voice
7 months ago
have you had trouble getting approved for stem cell transplant?
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
Plasmapool
in
MPN Voice
7 months ago
Successfully treated my Multiple Myeloma and now in remission from both MM and PCA
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
swwags
in
Advanced Prostate Cancer
9 months ago
Immune Responses + Autoimmune Myelofibrosis
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
LongETinUS
in
MPN Voice
9 months ago
behcets, mouth ulcers and gum disease
has anyone here with behcets experienced poor oral health? i found it was never an issue for me until recently, i went to the dentist and she said that i had gingivitis. ive yet to go back as it was a bit traumatic, but has anyone had experience with "poor oral health" being linked to behcets i.e your
has anyone here with behcets experienced poor oral health? i found it was never an issue for me until recently, i went to the dentist and she said that i had gingivitis. ive yet to go back as it was a bit traumatic, but has anyone had experience with "poor oral health" being linked to behcets i.e your
jaquarius
in
Behçet's UK
1 year ago
Start of my stem cell journey 0.3.1 ambulatory care
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
Grizly
in
MPN Voice
10 months ago
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