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Cutaneous T cell lymphoma (CTCL)
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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
7 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
7 months ago
Anyone’s thoughts on milk thistle?https://thyroidpatients.ca/2022/01/16/milk-thistle-thyroid-transport/amp/
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
Joannak
in
Thyroid UK
1 year ago
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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
7 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
8 months ago
hot flushes
I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
Freshairfiend
in
PMRGCAuk
9 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
8 months ago
Not anemia? Lab results question.
It's been a couple months since my last iron infusion. Last week, I had labs drawn, and results included: [H] WBC (18.1), RDW (16.4), Platelets (614), Creatinine (1.04); [L] MCH (24.1), MCHC (30.5), Iron (22); [LL] Iron Saturation (7). Hemoglobin was just within normal range at 11.2, and
It's been a couple months since my last iron infusion. Last week, I had labs drawn, and results included: [H] WBC (18.1), RDW (16.4), Platelets (614), Creatinine (1.04); [L] MCH (24.1), MCHC (30.5), Iron (22); [LL] Iron Saturation (7). Hemoglobin was just within normal range at 11.2, and
hollywollydoodle
in
CLL Support
1 year ago
Charity request for help: GCA patients in England
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Fran_Benson
Partner
in
PMRGCAuk
9 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
8 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
8 months ago
up coming treatment with rituximab for pure red blood cell aplasia and CLL
Hi All I was diagnosed with CLL in 2019 and never had much issues with bloods only being slightly elevated and some under arm lymph nodes. The start of this year I was diagnosed with pure red blood cell aplasia, after taking Cyclosporine it bounced back a bit but after stopping the meds the red blood
Hi All I was diagnosed with CLL in 2019 and never had much issues with bloods only being slightly elevated and some under arm lymph nodes. The start of this year I was diagnosed with pure red blood cell aplasia, after taking Cyclosporine it bounced back a bit but after stopping the meds the red blood
Jimmy_9
in
CLL Support
1 year ago
Metoject
Hi folks 🤗🦋I have successfully transferred from oral to injectable Methotrexate after a few teething problems I think I actually got the hang of it last Sunday! 😹 I have three injections left and am wondering how we reorder it. I was contacted by email after the initial referral from dermy and I was
Hi folks 🤗🦋I have successfully transferred from oral to injectable Methotrexate after a few teething problems I think I actually got the hang of it last Sunday! 😹 I have three injections left and am wondering how we reorder it. I was contacted by email after the initial referral from dermy and I was
Krazykat26
in
LUPUS UK
1 year 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
1 year 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
9 months ago
Tocilizumab
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
Noni71
in
PMRGCAuk
10 months ago
Venetoclax for dummies
Venetoclax owes its origin to a lady named Eliza Hall, I bet AussieNeil has heard of her. Eliza was a lady from Melbourne Australia who married an Englishman named Walter Hall in 1874. Walter Hall and his two brothers arrived almost penniless in Australia in 1852, coming from England to search for
Venetoclax owes its origin to a lady named Eliza Hall, I bet AussieNeil has heard of her. Eliza was a lady from Melbourne Australia who married an Englishman named Walter Hall in 1874. Walter Hall and his two brothers arrived almost penniless in Australia in 1852, coming from England to search for
cajunjeff
in
CLL Support
1 year ago
How often to Self Inject
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
MrJustatip
in
Pernicious Anaemia Society
1 year ago
Tocilizumab in the UK
I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired
I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired
WaltzG
in
PMRGCAuk
11 months ago
Adrenals
Morning everyone. This is my first post on here. I was diagnosed with GCA in August 2022 and have been tapering down the Prednisolone to 5mg. I also take Tocilizumab and Methotrexate as I’ve had a difficult time with the Prednisolone so many side effects. How do I know if my adrenal glands are working
Morning everyone. This is my first post on here. I was diagnosed with GCA in August 2022 and have been tapering down the Prednisolone to 5mg. I also take Tocilizumab and Methotrexate as I’ve had a difficult time with the Prednisolone so many side effects. How do I know if my adrenal glands are working
Noni71
in
PMRGCAuk
11 months ago
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