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Familial Polycythemia
Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few years ago for the Jak2 gene, it was negative & we were discharged. Our blood tests always show a red cell count around 5.6, Haemoglobin 160
Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few years ago for the Jak2 gene, it was negative & we were discharged. Our blood tests always show a red cell count around 5.6, Haemoglobin 160
Vicky_b
in
MPN Voice
5 months ago
anxiety help-feel stuck
new to the group and looking for just support because I feel hopeless when I have high anxiety. I worry I will lose my job and my loved ones won’t want to be around me. I started feeling anxious this weekend and I don’t really know the cause. But that fear of a panic attack has me avoiding and fear of
new to the group and looking for just support because I feel hopeless when I have high anxiety. I worry I will lose my job and my loved ones won’t want to be around me. I started feeling anxious this weekend and I don’t really know the cause. But that fear of a panic attack has me avoiding and fear of
Basketball1003
in
Anxiety and Depression Support
1 month ago
PSMA RESULTS
I’m five years Post surgery including removal of prostate & lymph nodes. Gleason 8 with Intraductal. Sepsis, DVT/PE after surgery which left me with chronic fatigue, brain fog and bad overactive bladder with incontinence. Four years post stereotactic radiotherapy to the left iliac area following a PSMA
I’m five years Post surgery including removal of prostate & lymph nodes. Gleason 8 with Intraductal. Sepsis, DVT/PE after surgery which left me with chronic fatigue, brain fog and bad overactive bladder with incontinence. Four years post stereotactic radiotherapy to the left iliac area following a PSMA
Bcgkelly
in
Advanced Prostate Cancer
8 months ago
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Metastasis Pain
Hello Brothers and Sisters , as I will be having a PSMA-Pet , Pyl coming up at my 2 yr mark soon I was wondering at what size a metastasis starts to cause pain . I had a pain under my my left rib cage at about 7 o'clock off and on for 14 months . I had a X-ray , ct-scan and a MRI all negative . The
Hello Brothers and Sisters , as I will be having a PSMA-Pet , Pyl coming up at my 2 yr mark soon I was wondering at what size a metastasis starts to cause pain . I had a pain under my my left rib cage at about 7 o'clock off and on for 14 months . I had a X-ray , ct-scan and a MRI all negative . The
reconjj
in
Advanced Prostate Cancer
8 months ago
Advice
Just started chemo again mastactiic high grade serious carcidoma on ovarian mass after 18m break recurrence had letter saying it spread I have chronic kidney disease ca123 195 right enlarged mass on ovary may have to have spleen removed not good read I am trying to decide as the letter says chemo
Just started chemo again mastactiic high grade serious carcidoma on ovarian mass after 18m break recurrence had letter saying it spread I have chronic kidney disease ca123 195 right enlarged mass on ovary may have to have spleen removed not good read I am trying to decide as the letter says chemo
PaumicB123
in
My Ovacome
8 months ago
Cap & kPa
Hi do anybody know anything about cap score? What shouldn't it be above & also for kPa. Can having moving gallstones cause stiffness in liver?? Gallstones are causing no pain ATM. Thanks
Hi do anybody know anything about cap score? What shouldn't it be above & also for kPa. Can having moving gallstones cause stiffness in liver?? Gallstones are causing no pain ATM. Thanks
Belleben
in
British Liver Trust
1 month ago
Dental Issues on Finesteride
Five weeks after starting on finesteride 5 mg I developed painfully sensitive teeth both top and bottom on left side of my mouth. Here's what a google search turned up: https://forum.propeciahelp.com/t/propecia-and-dental-problems/1254 https://www.ehealthme.com/ds/finasteride/toothaches/ I became
Five weeks after starting on finesteride 5 mg I developed painfully sensitive teeth both top and bottom on left side of my mouth. Here's what a google search turned up: https://forum.propeciahelp.com/t/propecia-and-dental-problems/1254 https://www.ehealthme.com/ds/finasteride/toothaches/ I became
fast_eddie
in
Fight Prostate Cancer
5 months ago
Vitamin D and Dementia
Vitamin D is a topic that gets a regular airing on this forum. In the context of CLL, here is a good place to review past posts https://healthunlocked.com/cllsupport/posts/149126536/recent-research-report?responses=149129259 (reply by Lankisterguy). Personally, the idea of dying with CLL just doesn't
Vitamin D is a topic that gets a regular airing on this forum. In the context of CLL, here is a good place to review past posts https://healthunlocked.com/cllsupport/posts/149126536/recent-research-report?responses=149129259 (reply by Lankisterguy). Personally, the idea of dying with CLL just doesn't
bennevisplace
in
CLL Support
5 months ago
V + O for R/R CLL post FCR
I sent this to skyshark based on some info he posted but I was[u] hoping for the whole group to chime in.[/u] I had 3 rounds of FCR in 2018 stopped because of profound neutropenia. I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started
I sent this to skyshark based on some info he posted but I was[u] hoping for the whole group to chime in.[/u] I had 3 rounds of FCR in 2018 stopped because of profound neutropenia. I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started
skipro
in
CLL Support
1 month ago
Panic disorder
suffering from panic disorder for long time. day's ago decided to face my fear . It's make me anxious all the time with less physical symptom . Any suggestions?
suffering from panic disorder for long time. day's ago decided to face my fear . It's make me anxious all the time with less physical symptom . Any suggestions?
Jahid9912
in
Anxiety and Depression Support
1 month ago
Chronic diarrhea after chemo; any suggestions?
Hello lovely ladies; unfortunately my disease came back after 2.5 years and 70 cm of my small intestines had to be removed with surgery. 6 cycle of chemo is given. 4 finished so far. But i'm experiencing terrible diarrhea. Everyday more than 10 (sometimes 18) visits to restroom and pain during after
Hello lovely ladies; unfortunately my disease came back after 2.5 years and 70 cm of my small intestines had to be removed with surgery. 6 cycle of chemo is given. 4 finished so far. But i'm experiencing terrible diarrhea. Everyday more than 10 (sometimes 18) visits to restroom and pain during after
Sybil71
in
My Ovacome
5 months ago
h pylori treatment
hello I’d like to hear from anyone who has successfully eradicated helicobacter pylori with either a natural or antibiotic protocol. I’m on low dose NDT with Dr Frey and have thyroid nodules (biopsy tested benign) Tested positive for h pylori via a breath test in October and was offered quadruple
hello I’d like to hear from anyone who has successfully eradicated helicobacter pylori with either a natural or antibiotic protocol. I’m on low dose NDT with Dr Frey and have thyroid nodules (biopsy tested benign) Tested positive for h pylori via a breath test in October and was offered quadruple
Crankyoldbag
in
Thyroid UK
5 months ago
Here we go.......
FULL DISCLOSURE, LONG POST Had a TRUS biopsy end of September after AS of a rising PSA. Had a 3T MRI in November 2021 which showed a PIRADS 3 left base and PIRADS 2 right mid, prostate volume 40mL. 4K in August of this year was 57.1 with PSA of 7.8. DICIPHER from biopsy was .84. Clinical stage
FULL DISCLOSURE, LONG POST Had a TRUS biopsy end of September after AS of a rising PSA. Had a 3T MRI in November 2021 which showed a PIRADS 3 left base and PIRADS 2 right mid, prostate volume 40mL. 4K in August of this year was 57.1 with PSA of 7.8. DICIPHER from biopsy was .84. Clinical stage
ToolBeltZia
in
Prostate Cancer Network
8 months ago
Colpermin
what’s your opinion on Peppermint Oil Capsules against Buscopan Undecided on Buscopan, got a recent flare up after a break of a couple of month Sure it’s stress related
what’s your opinion on Peppermint Oil Capsules against Buscopan Undecided on Buscopan, got a recent flare up after a break of a couple of month Sure it’s stress related
Almostthere12
in
IBS Network
1 month ago
B12 patches
At present I get B12 injection every 8 weeks, however I feel I need more as I am still suffering all the symptoms of B12 deficency/PA. I have found OmniCo B12 patches (high strength) on Amazon. It says the B12 is Methylcobalamin. Has anyone tried them? are they antgood. I, and am sure others would
At present I get B12 injection every 8 weeks, however I feel I need more as I am still suffering all the symptoms of B12 deficency/PA. I have found OmniCo B12 patches (high strength) on Amazon. It says the B12 is Methylcobalamin. Has anyone tried them? are they antgood. I, and am sure others would
Whiskymack
in
Pernicious Anaemia Society
5 months ago
If you have a Chat GPT 4 account, please read
If you have a (paid) Chat GPT 4 account, please be so kind as to try out the two GPT's that I built and are now in the public GPT area Patient Navigator, developed to help patients find payment assistance programs. https://chat.openai.com/g/g-GlKean217-patient-navigator and Clinical Trial Navigator
If you have a (paid) Chat GPT 4 account, please be so kind as to try out the two GPT's that I built and are now in the public GPT area Patient Navigator, developed to help patients find payment assistance programs. https://chat.openai.com/g/g-GlKean217-patient-navigator and Clinical Trial Navigator
Darryl
Partner
in
Advanced Prostate Cancer
8 months ago
everything feels weird
hi, I had a panic attack February last year and I’ve never been the same since. I’m now struggling with depression and anxiety , everyday feels a struggle to get through. Everything looks and feels totally different from what it was like before the panic attack and I am constantly thinking about it.
hi, I had a panic attack February last year and I’ve never been the same since. I’m now struggling with depression and anxiety , everyday feels a struggle to get through. Everything looks and feels totally different from what it was like before the panic attack and I am constantly thinking about it.
Lgns
in
Anxiety and Depression Support
1 month ago
for our 'newest' members....
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
DonnaBoll
Administrator
in
PBC Foundation
1 month ago
Severe reaction to Targinact - please help
Thanks everyone for your help with my last post re: Targinact. I think I am having severe side-effects from the drug, all of which are listed in the leaflet. I thought I was ill due to a seasonal flu/cold, but I now think the sickness, shaking, diarrhoea, nausea, rapid breathing and complete loss of
Thanks everyone for your help with my last post re: Targinact. I think I am having severe side-effects from the drug, all of which are listed in the leaflet. I thought I was ill due to a seasonal flu/cold, but I now think the sickness, shaking, diarrhoea, nausea, rapid breathing and complete loss of
Claire_lc
in
Restless Legs Syndrome
5 months ago
reassurance needed please
I’m a 33 year old female, went recently for ct scan on kidney as was having a bit of pain. Came back all clear for kidneys and other organs but a large low density area measuring 5x7 cm was found on liver, radiologists suggested : could be focal fat, cyst or other lesion. I am terrified and haven’t eaten
I’m a 33 year old female, went recently for ct scan on kidney as was having a bit of pain. Came back all clear for kidneys and other organs but a large low density area measuring 5x7 cm was found on liver, radiologists suggested : could be focal fat, cyst or other lesion. I am terrified and haven’t eaten
Hannahthom
in
British Liver Trust
8 months ago
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