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update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
10 months ago
Surgery and immuno suppressants
Hi everyone. I am due to have minor surgery on my wrist and have been asked by my surgeon to cease taking mycophenolate for a week before and a week after my operation (I presumed because of possible risk of infection?). I spoke to my rheumatologist about this and she considered it unnecessary to stop
Hi everyone. I am due to have minor surgery on my wrist and have been asked by my surgeon to cease taking mycophenolate for a week before and a week after my operation (I presumed because of possible risk of infection?). I spoke to my rheumatologist about this and she considered it unnecessary to stop
cheeselover342
in
Scleroderma & Raynaud's UK (SRUK)
10 months ago
New to Peginterferon - Any suggestions to help with bowel cramps?
I have only had 2 injections so far and experiencing frequent bowel cramps. I was kinda, expecting this as I do have some bouts of IBS following associated problems from stage 4 endometriosis. This was found and treated 10 years ago, after many years of suffering. As a result, I experience IBS and,
I have only had 2 injections so far and experiencing frequent bowel cramps. I was kinda, expecting this as I do have some bouts of IBS following associated problems from stage 4 endometriosis. This was found and treated 10 years ago, after many years of suffering. As a result, I experience IBS and,
Lyndjs
in
MPN Voice
10 months ago
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Lipoid pneumonia
Earlier this year I had serious nose bleeds resulting in hospital admissions and cautery. Subsequently seen by ENT consultant who advised daily insertion of Vaseline into nostrils to prevent them drying out and possible further bleeds. Since then I found on the internet (various reputable sites)
Earlier this year I had serious nose bleeds resulting in hospital admissions and cautery. Subsequently seen by ENT consultant who advised daily insertion of Vaseline into nostrils to prevent them drying out and possible further bleeds. Since then I found on the internet (various reputable sites)
FormerT
in
Lung Conditions Community Forum
10 months ago
Drugs.com FDA Investigating Serious Risk of T-cell Malignancy Following BCMA-Directed (CAR) T cell Immunotherapies
https://newsletters.drugs.com/l/HXdBAPWpNu8924jmwPHb3VvA/LQCEtlvhvlnyLNQoIP4Gfw/jLVV3dtGc2BI8hLRqrMq892g [i]"Although the overall benefits of these products continue to outweigh their potential risks for their approved uses, FDA is investigating the identified risk of T cell malignancy with serious
https://newsletters.drugs.com/l/HXdBAPWpNu8924jmwPHb3VvA/LQCEtlvhvlnyLNQoIP4Gfw/jLVV3dtGc2BI8hLRqrMq892g [i]"Although the overall benefits of these products continue to outweigh their potential risks for their approved uses, FDA is investigating the identified risk of T cell malignancy with serious
JerrysGirl3
in
CLL Support
10 months ago
Night sweats
Hi all , last night I woke up with night sweats , I’m 70 so it’s not the menopause ! Is it connected to ET jak 2 pos . I also have a condition where my Bp drops when standing up called POTs , orthostatic hypotension also I’m starting on Ferritin pills for low iron . See Gp again Thursday he sees me
Hi all , last night I woke up with night sweats , I’m 70 so it’s not the menopause ! Is it connected to ET jak 2 pos . I also have a condition where my Bp drops when standing up called POTs , orthostatic hypotension also I’m starting on Ferritin pills for low iron . See Gp again Thursday he sees me
Birdlady2021
in
MPN Voice
1 year ago
Covid question
I’ve avoided Covid up until now. My partner and I picked it up in Cuba. Started with what we thought was food poisoning, the dreaded diarrhea. It’s now been 14 days. We’ve had chills, fevers, fatigue and daily diarrhea. I’m at the final three months of V treatment so was advised to start the antiviral
I’ve avoided Covid up until now. My partner and I picked it up in Cuba. Started with what we thought was food poisoning, the dreaded diarrhea. It’s now been 14 days. We’ve had chills, fevers, fatigue and daily diarrhea. I’m at the final three months of V treatment so was advised to start the antiviral
Cottager1989
in
CLL Support
9 months ago
Webinar: What causes photopsia and photophobia in patients with Stargardt and what impact does it have on their lives?
Flashing lights in vision (photopsia) or discomfort due to bright light or glare (photophobia) is often experienced by patients with Stargardt. However, little is understood about what causes these symptoms, their prevalence or the impact they can have on people’s lives. Omar Mahroo, consultant ophthalmologist
Flashing lights in vision (photopsia) or discomfort due to bright light or glare (photophobia) is often experienced by patients with Stargardt. However, little is understood about what causes these symptoms, their prevalence or the impact they can have on people’s lives. Omar Mahroo, consultant ophthalmologist
Carol_MacularSociety
Partner
in
Macular Society
10 months ago
Vitamin B2 Deficiency Can Cause B6 Toxicity! PWP Are Commonly Deficient In B2.
Vitamin B6 recycling. Image credit https://www.frontiersin.org/files/Articles/276491/fneur-08-00333-HTML/image_m/fneur-08-00333-g002.jpg From: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2017.00333/full Vitamin B6 is a coenzyme required for over 100 different biochemical transformations
Vitamin B6 recycling. Image credit https://www.frontiersin.org/files/Articles/276491/fneur-08-00333-HTML/image_m/fneur-08-00333-g002.jpg From: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2017.00333/full Vitamin B6 is a coenzyme required for over 100 different biochemical transformations
park_bear
in
Cure Parkinson's
10 months ago
Macular Hole
Hi, long term PMR/GCA sufferer been on 4mg for long enough and staying there! However I developed a macular hole which needed surgery. Has anyone else had this problem, is there likely any association of cause with GCA /PMR or Pred? Surgery done now and I have to wait and see how successful it is.
Hi, long term PMR/GCA sufferer been on 4mg for long enough and staying there! However I developed a macular hole which needed surgery. Has anyone else had this problem, is there likely any association of cause with GCA /PMR or Pred? Surgery done now and I have to wait and see how successful it is.
doubtfully
in
PMRGCAuk
10 months ago
Newly diagnosed; so scared, confused, and depressed
Hello. I'm so glad to have found this supportive and helpful community! I apologize for the long post. I first noticed when I received routine bloodwork results a year ago that my eGFR was flagged as low at 80. Since I didn't know what an eGFR was, I started researching and was alarmed to read that
Hello. I'm so glad to have found this supportive and helpful community! I apologize for the long post. I first noticed when I received routine bloodwork results a year ago that my eGFR was flagged as low at 80. Since I didn't know what an eGFR was, I started researching and was alarmed to read that
GracieMom
in
Kidney Disease
1 year ago
iron deficiency
Hi all , just found out my blood tests show low in iron ,is this common with ET etc first time I have this I take sodium tablets also because was very low and vitamin. D so taking it long term ! I wonder if it’s all part of the condition ? Or the hydroxycarbamide or my age I’m 70 now 😀
Hi all , just found out my blood tests show low in iron ,is this common with ET etc first time I have this I take sodium tablets also because was very low and vitamin. D so taking it long term ! I wonder if it’s all part of the condition ? Or the hydroxycarbamide or my age I’m 70 now 😀
Birdlady2021
in
MPN Voice
1 year ago
Bring PSA from 6.7 to 3.1 in 4 weeks by pure water fast (3wks) and vegan diet (1 wk).
Note from moderator: NO ONE SHOULD ATTEMPT THE SUGGESTIONS IN THIS POST WITHOUT FIRST CONSULTING WITH YOUR UROLOGIST AND/or ONCOLOGIST. READ ALL OF THE COMMENTS BELOW THE POST. THE WISDOM AND CONCERN OF OUR COMMUNITY IS THE ONLY REASON THIS POST REMAINS PUBLISHED, I have prostate cancer, and I
Note from moderator: NO ONE SHOULD ATTEMPT THE SUGGESTIONS IN THIS POST WITHOUT FIRST CONSULTING WITH YOUR UROLOGIST AND/or ONCOLOGIST. READ ALL OF THE COMMENTS BELOW THE POST. THE WISDOM AND CONCERN OF OUR COMMUNITY IS THE ONLY REASON THIS POST REMAINS PUBLISHED, I have prostate cancer, and I
DADICIDAD
in
Advanced Prostate Cancer
1 year ago
Diazepam Stomach Cramps
I’ve had numerous attempts at getting off Diazepam with sometimes a couple of years clean . Anyway this year I started taking them again. I had gone up to 40mg a day. I had considered that a low amount , one of my episodes I was taking a lot more than that. At 40mg I started a very slow taper dropping
I’ve had numerous attempts at getting off Diazepam with sometimes a couple of years clean . Anyway this year I started taking them again. I had gone up to 40mg a day. I had considered that a low amount , one of my episodes I was taking a lot more than that. At 40mg I started a very slow taper dropping
dexter92
in
Anxiety and Depression Support
10 months ago
Just need to talk.
hi there, Since, I really have no idea what I’m doing and having an ileostomy complicates things like I can’t just drink water I have to drink isotonic drinks etc. Anyway, I have stents due to hydronephrosis. My egfr was 22, then 20 in hospital last year. I have nephrostomy’s for a while. last week
hi there, Since, I really have no idea what I’m doing and having an ileostomy complicates things like I can’t just drink water I have to drink isotonic drinks etc. Anyway, I have stents due to hydronephrosis. My egfr was 22, then 20 in hospital last year. I have nephrostomy’s for a while. last week
AndreaBabyC
in
Kidney Disease
1 year ago
Radium-223 and [177Lu]Lu-PSMA
Has anyone here from Canada had experience with either of the two PSMA treatments. I was all excited about this until I looked into it a bit more and the results seem to be very mixed not to mention the cost of upwards of $27K per treatment (5 or 6 treatments seems to be typical). I have completed 8
Has anyone here from Canada had experience with either of the two PSMA treatments. I was all excited about this until I looked into it a bit more and the results seem to be very mixed not to mention the cost of upwards of $27K per treatment (5 or 6 treatments seems to be typical). I have completed 8
westjl2
in
Advanced Prostate Cancer
7 months ago
ketchup
can anyone with experience taking Radium 223 tell me the experience they went thru. I am staring on the 8th and want to know if there were side effects and if you managed to do all 6 doses. Cheers
can anyone with experience taking Radium 223 tell me the experience they went thru. I am staring on the 8th and want to know if there were side effects and if you managed to do all 6 doses. Cheers
catsup
in
Advanced Prostate Cancer
7 months ago
Sinemet Plus 25mg/100mg tablets Side effects?
My brother takes Sinemet plus 25mg/100mg tablets - One and a half tablets at 8am, 11am, 2pm, 5pm and 8pm. Half Sinemet CR 25mg/100mg tablets - one taken at bedtime. I have noticed after taking Sinemet plus he is unable to get out of chair or bed for up to an hour, dizziness and sleepiness. His vision
My brother takes Sinemet plus 25mg/100mg tablets - One and a half tablets at 8am, 11am, 2pm, 5pm and 8pm. Half Sinemet CR 25mg/100mg tablets - one taken at bedtime. I have noticed after taking Sinemet plus he is unable to get out of chair or bed for up to an hour, dizziness and sleepiness. His vision
Sarah106
in
Cure Parkinson's
10 months ago
wheat in cosmetics
I’m recently diagnosed with coeliac disease. I’m following a gluten free diet but have noticed that a product I bought to promote hair growth contains wheat germ amongst many other ingredients. As this product needs to be massaged into the scalp should I not use it?
I’m recently diagnosed with coeliac disease. I’m following a gluten free diet but have noticed that a product I bought to promote hair growth contains wheat germ amongst many other ingredients. As this product needs to be massaged into the scalp should I not use it?
Veggie2
in
Gluten Free Guerrillas
8 months ago
At the crossroads (again)
My profile is up to date, but, briefly, have failed chemo, ADT (am castrate resistant), failed Keytruda and now Pluvicto. Scans yest. & today show progression along with PSA rise. All my mets are in bone. So, my SOC choices are cabazataxel or radium 223. Other options are trial, which are a crapshoot
My profile is up to date, but, briefly, have failed chemo, ADT (am castrate resistant), failed Keytruda and now Pluvicto. Scans yest. & today show progression along with PSA rise. All my mets are in bone. So, my SOC choices are cabazataxel or radium 223. Other options are trial, which are a crapshoot
rsgdmd
in
Advanced Prostate Cancer
7 months ago
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