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Momelotinib for Myelofibrosis
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Cazbolac
in
MPN Voice
4 months ago
copper coil
has anyone experienced horrible headaches with the ten year copper coil. I’m only a few weeks in and they said it will take a few months to settle but I thought that would be bleeding or cramps but not migraines? It’s non hormonal so I’m not sure why it wd give me headaches but I also have painful twinges
has anyone experienced horrible headaches with the ten year copper coil. I’m only a few weeks in and they said it will take a few months to settle but I thought that would be bleeding or cramps but not migraines? It’s non hormonal so I’m not sure why it wd give me headaches but I also have painful twinges
Avagrac
in
BASHH
1 year ago
Bleeding after Laparoscopy
Hi all, Please note this maybe to much info .... Apologies. Sorry for the question. I know there is a few topics regarding Laparoscopy but just want to understand if what's happening is normal. I had my laparoscopy 3 weeks ago. All the incisions have healed well and from surgery side of things I'm
Hi all, Please note this maybe to much info .... Apologies. Sorry for the question. I know there is a few topics regarding Laparoscopy but just want to understand if what's happening is normal. I had my laparoscopy 3 weeks ago. All the incisions have healed well and from surgery side of things I'm
AMJ88
in
Endometriosis UK
1 year ago
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Feeling deflated after first appointment with Gynaecology! Yet another ultrasound! 😢
Hi I’m completely new to the group, joined after my urology doctor referred me to gynaecology to have a laparoscopy to investigate endometriosis. Since then I have researched a lot and convinced I have endometriosis! Everything I have been through the last 3 years points to endo. (I didn’t know about
Hi I’m completely new to the group, joined after my urology doctor referred me to gynaecology to have a laparoscopy to investigate endometriosis. Since then I have researched a lot and convinced I have endometriosis! Everything I have been through the last 3 years points to endo. (I didn’t know about
Gingerlove195
in
Endometriosis UK
1 year ago
Severe Period Pains
Our daughter who has FA (16yrs) started getting severe cramps when she gets her period about a year ago. She started her periods when she was 11. She & her brother were just diagnosed with FA in Nov 22. She's previously passed out with the pain from cramps & mentioned severe shooting pains traveling
Our daughter who has FA (16yrs) started getting severe cramps when she gets her period about a year ago. She started her periods when she was 11. She & her brother were just diagnosed with FA in Nov 22. She's previously passed out with the pain from cramps & mentioned severe shooting pains traveling
Hidden
in
Ataxia UK
1 year 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
4 months ago
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
4 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
4 months 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
4 months ago
Mirena coil/ still have periods
I’ve already had a coil before and I had it in for almost 4 years and it stopped working with that coil I had absolutely no issues infact I was like a new woman for 4 years. Then I had another 1 fitted last year in September and even upto this point now it’s not settled I’m having periods ever 2 weeks
I’ve already had a coil before and I had it in for almost 4 years and it stopped working with that coil I had absolutely no issues infact I was like a new woman for 4 years. Then I had another 1 fitted last year in September and even upto this point now it’s not settled I’m having periods ever 2 weeks
Coral07
in
Endometriosis UK
1 year 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
4 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
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
Coming off the Mirena coil and Pregabalin to try for a baby - advice
So my fiancé and I are planning to try for a baby soon, I am super excited but also very nervous about coming off the Mirena coil (which I have had since being diagnosed with endo in 2019) and my medication Pregabalin (which I have been taking for 2 years now at a dose of 225mg twice a day). My endo
So my fiancé and I are planning to try for a baby soon, I am super excited but also very nervous about coming off the Mirena coil (which I have had since being diagnosed with endo in 2019) and my medication Pregabalin (which I have been taking for 2 years now at a dose of 225mg twice a day). My endo
gkbear
in
Endometriosis UK
1 year 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
5 months ago
copper coil, irregular period
i got the coil inserted 2ish months ago and got my period as normal, it lasted two weeks long and was a lot more painful/heavier. This doesn’t worry me however my second cycle seems a lot longer, my Flo app is saying I’m 6 days late, was just wondering if anyone else has experienced irregular periods
i got the coil inserted 2ish months ago and got my period as normal, it lasted two weeks long and was a lot more painful/heavier. This doesn’t worry me however my second cycle seems a lot longer, my Flo app is saying I’m 6 days late, was just wondering if anyone else has experienced irregular periods
Daisynails28
in
BASHH
1 year ago
Hormone therapy for Endometriosis
Hello, I hope you're all doing ok. I was wondering if anyone has any advice, tips or experience in hormone therapy for endometriosis. Long story short I was diagnosed with stage 4 endometriosis 5 years ago, I had a lap in Dec 2018 to remove endometrioma and check my tubes. In Nov 2019 I had a bowel
Hello, I hope you're all doing ok. I was wondering if anyone has any advice, tips or experience in hormone therapy for endometriosis. Long story short I was diagnosed with stage 4 endometriosis 5 years ago, I had a lap in Dec 2018 to remove endometrioma and check my tubes. In Nov 2019 I had a bowel
Violet89
in
Endometriosis UK
1 year ago
Doctor won't test for Endometriosis
I'm in my early 30's and started getting painful periods when I was 17. Pain in my stomach, back, down my legs and generally feeling sick. It was quite severe, to the point where I would throw up so I went to the Doctor at age 17 and was told I would grow out of it. Now in my 30's I've gone back to the
I'm in my early 30's and started getting painful periods when I was 17. Pain in my stomach, back, down my legs and generally feeling sick. It was quite severe, to the point where I would throw up so I went to the Doctor at age 17 and was told I would grow out of it. Now in my 30's I've gone back to the
K833
in
Endometriosis UK
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
5 months ago
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