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Update on failing Pirtobrutinib and BTK Degrader Trial
I got a call from Upenn yesterday afternoon from the NP of the btk degrader trial. Very unexpected as I was told it had been pushed back to July. Turns out I met her, Kaitlin when she was working with Dr. Mato and I was his patient in 2015. She remembered me and was very caring and easy to talk to.
I got a call from Upenn yesterday afternoon from the NP of the btk degrader trial. Very unexpected as I was told it had been pushed back to July. Turns out I met her, Kaitlin when she was working with Dr. Mato and I was his patient in 2015. She remembered me and was very caring and easy to talk to.
ReneeSusan
in
CLL Support
2 months ago
here’s what I use
Neupro patch 24 h 6mg, Tramadol 50 mg at night, Gabapentin 100 mg, Tylenol 500 mg, temazepam 30mg at bedtime, Iron 325 mg 3 x’s a week. Magnesium 500 mg at night. Works pretty good though I’m augmenting. I
Neupro patch 24 h 6mg, Tramadol 50 mg at night, Gabapentin 100 mg, Tylenol 500 mg, temazepam 30mg at bedtime, Iron 325 mg 3 x’s a week. Magnesium 500 mg at night. Works pretty good though I’m augmenting. I
maribarosay
in
Restless Legs Syndrome
2 months ago
stressed out
I’ve been having headaches every single day for over a month. I’ve seen the dr twice he said there’s nothing alarming and he will just monitor me, I take Tylenol every 4-5hrs which I didn’t know it was only supposed to be every 6 hrs, I’m not sure what’s causing these headaches. It might be stress considering
I’ve been having headaches every single day for over a month. I’ve seen the dr twice he said there’s nothing alarming and he will just monitor me, I take Tylenol every 4-5hrs which I didn’t know it was only supposed to be every 6 hrs, I’m not sure what’s causing these headaches. It might be stress considering
Icantwaittobemeagain
in
Anxiety and Depression Support
2 months ago
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Should it take this long to taper with PMR/GCA?
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
Bummed24
in
PMRGCAuk
2 months ago
Dosage Awareness
The American Liver Foundation is a proud partner in the Know Your Dose campaign, which is led by the Acetaminophen Awareness Coalition. The initiative seeks to raise awareness and promotes four simple steps for safe acetaminophen use. Follow these four steps to help you take acetaminophen safely
The American Liver Foundation is a proud partner in the Know Your Dose campaign, which is led by the Acetaminophen Awareness Coalition. The initiative seeks to raise awareness and promotes four simple steps for safe acetaminophen use. Follow these four steps to help you take acetaminophen safely
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
3months Post-HD Brachytherapy
Follow up from my previous post & many thanks to the helpful advice from members here. I scheduled a teleconference with Dr Albert Chang at UCLA in November, scheduling is 3 months out so treatments were Feb.3 and 6. Normally a week apart but since I flew in they did 3days apart. We stayed at the Luskin
Follow up from my previous post & many thanks to the helpful advice from members here. I scheduled a teleconference with Dr Albert Chang at UCLA in November, scheduling is 3 months out so treatments were Feb.3 and 6. Normally a week apart but since I flew in they did 3days apart. We stayed at the Luskin
Muggs1
in
Prostate Cancer Network
3 months ago
Arthritis without NSAIDS
My arthritis has gotten very annoying. I can't be on my feet for very long. Stage 4 Renal disease for a while now and tylenol really doesn't do much.
My arthritis has gotten very annoying. I can't be on my feet for very long. Stage 4 Renal disease for a while now and tylenol really doesn't do much.
Zinnia70
in
Kidney Disease
3 months ago
Can eye of newt and toe of frog help cure my cll?
[i]Double, double toil and trouble;[/i] [i]Fire burn and caldron bubble.[/i] [i]Fillet of a fenny snake,[/i] [i]In the caldron boil and bake;[/i] [i]Eye of newt and toe of frog,[/i] [i]Wool of bat and tongue of dog,[/i] [i]Adder's fork and blind-worm's sting,[/i] [i]Lizard's leg and howlet's wing
[i]Double, double toil and trouble;[/i] [i]Fire burn and caldron bubble.[/i] [i]Fillet of a fenny snake,[/i] [i]In the caldron boil and bake;[/i] [i]Eye of newt and toe of frog,[/i] [i]Wool of bat and tongue of dog,[/i] [i]Adder's fork and blind-worm's sting,[/i] [i]Lizard's leg and howlet's wing
cajunjeff
in
CLL Support
3 months ago
Pain Spreading/Getting Worse
Hello All, I made a post a week or so ago about my pelvic pain. My symptoms started in December 2023. It started with UTI symptoms and persistant arousal. By January I was getting burning pain in my clitoris, urethra, and vagina, and some stabbing sensations, as well as feeling like there was something
Hello All, I made a post a week or so ago about my pelvic pain. My symptoms started in December 2023. It started with UTI symptoms and persistant arousal. By January I was getting burning pain in my clitoris, urethra, and vagina, and some stabbing sensations, as well as feeling like there was something
Kat791
in
Pelvic Pain Support Network
3 months ago
Does NSAIDS reduce ADT effectiveness?
Hello I have a question about taking NSAIDS while on ADT - up to now I have only used tylenol - I had read somewhere that NSAIDS subtract some effectiveness of the hormone therapy and I have avoided it - but with the amount of inflammation after 8 months, I would like to use some - primarily to let
Hello I have a question about taking NSAIDS while on ADT - up to now I have only used tylenol - I had read somewhere that NSAIDS subtract some effectiveness of the hormone therapy and I have avoided it - but with the amount of inflammation after 8 months, I would like to use some - primarily to let
jackwfrench
in
Advanced Prostate Cancer
3 months ago
Had the ablation.
Monday I had the procedure under general anesthesia-safely and successfully. The did give IV cortef at the start of the procedure. Since they needed to intubate my throat is sore for days but my ears-especially the right one are achy. I was debating why aching now; pollen count is moderate,and my jaw
Monday I had the procedure under general anesthesia-safely and successfully. The did give IV cortef at the start of the procedure. Since they needed to intubate my throat is sore for days but my ears-especially the right one are achy. I was debating why aching now; pollen count is moderate,and my jaw
Karenjaninaz
in
PMRGCAuk
3 months ago
US Senator Joe Lieberman died from MF
Just read this in Wall St Journal. Reproduced below from: https://www.yale64.org/remembrances/lieberman.htm since the WSJ version is in a paywall. -- His son calls the prior condition old fashioned MPD. I assume it was PV, suggests his Dr may have been likewise old fashioned and maybe he didn't
Just read this in Wall St Journal. Reproduced below from: https://www.yale64.org/remembrances/lieberman.htm since the WSJ version is in a paywall. -- His son calls the prior condition old fashioned MPD. I assume it was PV, suggests his Dr may have been likewise old fashioned and maybe he didn't
EPguy
in
MPN Voice
3 months ago
General Headache Question
Hi all, I have two GCA-related questions.... Question 1: If a GCA patient has a headache and they take extra prednisone (thinking it a flare) and the headache goes away, is that evidence that the headache was in fact inflammatory in nature? Question 2: If a GCA patient has a headache and they take
Hi all, I have two GCA-related questions.... Question 1: If a GCA patient has a headache and they take extra prednisone (thinking it a flare) and the headache goes away, is that evidence that the headache was in fact inflammatory in nature? Question 2: If a GCA patient has a headache and they take
montebello
in
PMRGCAuk
3 months ago
Influenza A while on W & W,-- the price for not wanting a vaccine
I decided to put my pride and lack of articulate writing skills aside to share a my learning experience . It was in Jan of 23 when I was told over the phone of my CLL Dx. I walked around in a panicky daze. First I went to Mr Google. (BIG MISTAKE !) I started clearing out the house and giving things
I decided to put my pride and lack of articulate writing skills aside to share a my learning experience . It was in Jan of 23 when I was told over the phone of my CLL Dx. I walked around in a panicky daze. First I went to Mr Google. (BIG MISTAKE !) I started clearing out the house and giving things
Sillysand
in
CLL Support
4 months ago
Rib pain after breathing test
On 22nd I took respiratory test. Ribs in area of LUNG SURGERY in 2019 are very painful upon effort; front, side, and back. I'm taking tylenol and rubbing creams with little improvement. Any one experience this after test?
On 22nd I took respiratory test. Ribs in area of LUNG SURGERY in 2019 are very painful upon effort; front, side, and back. I'm taking tylenol and rubbing creams with little improvement. Any one experience this after test?
Lyubov
in
Lung Conditions Community Forum
4 months ago
help: suboxone
Hello, there’s good news and bad news. The good news is that I haven’t had RLS for months. The bad news is since taking Suboxone I’ve developed the most insane muscle pain I can barely function. To get out of bed I barely have the strength to roll my body, and even lifting my leg up, causes an immense
Hello, there’s good news and bad news. The good news is that I haven’t had RLS for months. The bad news is since taking Suboxone I’ve developed the most insane muscle pain I can barely function. To get out of bed I barely have the strength to roll my body, and even lifting my leg up, causes an immense
Marlayna67
in
Restless Legs Syndrome
4 months ago
chemo pain advice
Hi everyone- my husband had is first infusion of Taxotere last Thursday and it’s been really rough on him. He had steroids and as soon as those wore off the pain started. He’s on triplet therapy. Stage 4 with Mets. First he had hiccups for 36-48 straight and now getting on and off. Joint and what
Hi everyone- my husband had is first infusion of Taxotere last Thursday and it’s been really rough on him. He had steroids and as soon as those wore off the pain started. He’s on triplet therapy. Stage 4 with Mets. First he had hiccups for 36-48 straight and now getting on and off. Joint and what
Sunnysailor
in
Advanced Prostate Cancer
4 months ago
Stress
I now understand that stress caused my flare. Work issues and my son's divorce both hit this fall and continued through February. Thus the jump in pain and consequently having to jump up from 2 years of 4.5 mg to 15. I am understanding this condition more and more every day. I am determined to keep
I now understand that stress caused my flare. Work issues and my son's divorce both hit this fall and continued through February. Thus the jump in pain and consequently having to jump up from 2 years of 4.5 mg to 15. I am understanding this condition more and more every day. I am determined to keep
Maggieart
in
PMRGCAuk
4 months ago
Schedule
After a couple of years at 4.5 mg, the pain came back. I finally relented and went to my rheumatologist. This has been my schedule: 7 days at 15 mg (felt great - no pain - got my life back) 4 days at 12.5 mg (still feeling good) 1 day at 12 3 days at 10 (began feeling a little pain) 1 day at 9.5
After a couple of years at 4.5 mg, the pain came back. I finally relented and went to my rheumatologist. This has been my schedule: 7 days at 15 mg (felt great - no pain - got my life back) 4 days at 12.5 mg (still feeling good) 1 day at 12 3 days at 10 (began feeling a little pain) 1 day at 9.5
Maggieart
in
PMRGCAuk
4 months ago
How risky is taking ibuprofen while on Xarelto?
I've got some pain in finger joints due to osteoarthritis and would love to be able to take an occasional ibuprofen. I know it's not recommended but Tylenol does nothing for this pain. Am wondering what the risk is.
I've got some pain in finger joints due to osteoarthritis and would love to be able to take an occasional ibuprofen. I know it's not recommended but Tylenol does nothing for this pain. Am wondering what the risk is.
Goldenre
in
Atrial Fibrillation Support
4 months ago
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