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Personal Sleep PR
This is the first time I have passed 8 hours of sleep in the almost 8 years of keeping track. I usually score 80 or 81. 89 is an all time record for me. So what happened. First off, I could feel my RLS earlier in the evening. Little things were beginning to trigger my RLS, nothing strong but
This is the first time I have passed 8 hours of sleep in the almost 8 years of keeping track. I usually score 80 or 81. 89 is an all time record for me. So what happened. First off, I could feel my RLS earlier in the evening. Little things were beginning to trigger my RLS, nothing strong but
WideBody
in
Restless Legs Syndrome
11 months ago
Has anyone navigated Medicare while trying to get the TPIAT?
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Skye_MC
Administrator
in
Chronic Pancreatitis Support
11 months ago
Travel and Ibrance
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
Artesa
in
SHARE Metastatic Breast Cancer
5 months ago
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stem cell for et?
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Preacherswife
in
MPN Voice
5 months ago
AXSL1 gene mutation
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
merlisa
in
MPN Voice
5 months ago
Colon cancer secondary to CLL
I had posted that I was diagnosed with stage 3 colon cancer and I’ve since had the mass successfully removed. Out of 16 lymph nodes analyzed 1 had cancer. So it’s off to chemo therapy in two weeks. For three months. Is there anyone in the group who’s experiencing this ? And does anyone have experience
I had posted that I was diagnosed with stage 3 colon cancer and I’ve since had the mass successfully removed. Out of 16 lymph nodes analyzed 1 had cancer. So it’s off to chemo therapy in two weeks. For three months. Is there anyone in the group who’s experiencing this ? And does anyone have experience
angelikab
in
CLL Support
1 year ago
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
angry about kidney transplant?
I received a kidney transplant about a year ago. I was donated a live one. However, I was very uncertain about transplant, and feel like I was pushed into having one due to other people’s insistence, amongst other things. As such, I am very resentful and angry. additionally, everyone treats my donor
I received a kidney transplant about a year ago. I was donated a live one. However, I was very uncertain about transplant, and feel like I was pushed into having one due to other people’s insistence, amongst other things. As such, I am very resentful and angry. additionally, everyone treats my donor
Asertfev
in
Kidney Transplant
1 year ago
worried I have a Colon Cancer
hi there, I am a 25 year old male - been pretty active my whole life. as of late my stools have been quite soft and thin (see picture above) I will say my diet has been absolutely terrible and some days I don’t get enough fiber for sure. But the other day I had a slight bit of red blood when I wiped
hi there, I am a 25 year old male - been pretty active my whole life. as of late my stools have been quite soft and thin (see picture above) I will say my diet has been absolutely terrible and some days I don’t get enough fiber for sure. But the other day I had a slight bit of red blood when I wiped
Sonyfanboy23
in
Colon Cancer Connected
1 year ago
AF Medications
I have had AF for a few months now, I have also attended A & E four times recently with palpations and chest pains. Each time they have given me either, sometimes both, potassium or magnesium intravenously. I have also had a kidney transplant (4 years ago). They cannot give me any more medication
I have had AF for a few months now, I have also attended A & E four times recently with palpations and chest pains. Each time they have given me either, sometimes both, potassium or magnesium intravenously. I have also had a kidney transplant (4 years ago). They cannot give me any more medication
Mismarswe
in
AF Association
1 year 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
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
5 months 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
Desensitization for second transplant (cadaver )
Hi all Anyone who has experience with desensitization procedure for carrying out second kidney transplant? I want to know the process and expected results. My crossmatch came positive or weak positive 7 times and I want to consider desensitization procedure now.
Hi all Anyone who has experience with desensitization procedure for carrying out second kidney transplant? I want to know the process and expected results. My crossmatch came positive or weak positive 7 times and I want to consider desensitization procedure now.
ashok5085
in
Kidney Transplant
1 year ago
update
just wanted to let you all know i had my kidney transplant from my live donor (older brother) on June 21st everything’s going okay and my GFR is 101% our hla was a perfect match, they said the only way things could get better is if we were identical twins 🙌🏼
just wanted to let you all know i had my kidney transplant from my live donor (older brother) on June 21st everything’s going okay and my GFR is 101% our hla was a perfect match, they said the only way things could get better is if we were identical twins 🙌🏼
renalrose
in
Kidney Dialysis
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
Dave Barry: A journey into my colon - and yours
A plagiarised version of an article by Dave Barry, published in the Miami Herald in 2008, appeared in one of my newsfeeds recently. I thought I'd share it here, as the message for 50-74 year-olds: [i]
screen yourself for colorectal cancer
[/i], is as relevant today as it was fifteen years ago.
A plagiarised version of an article by Dave Barry, published in the Miami Herald in 2008, appeared in one of my newsfeeds recently. I thought I'd share it here, as the message for 50-74 year-olds: [i]
screen yourself for colorectal cancer
[/i], is as relevant today as it was fifteen years ago.
bennevisplace
in
CLL Support
1 year ago
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