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Switch from Besremi to Ruxolitinib
Dear all After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep 2022) to 500 ug Bes and was at that dose for 9 months. I was CHR for the last 5 months of this period. My platelet count however crashed in Oct
Dear all After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep 2022) to 500 ug Bes and was at that dose for 9 months. I was CHR for the last 5 months of this period. My platelet count however crashed in Oct
gjh8733
in
MPN Voice
3 months ago
Itching and Hives
hello!! I was wondering if anyone has the same problems as me and can offer some advice! Since about age 9 (I am 26 now) I have been getting hives throughout my whole body every single day. My doctors can’t figure out what’s going on and no medication helps! I am on Plaquenil, Gabapentin, Zyrtec,
hello!! I was wondering if anyone has the same problems as me and can offer some advice! Since about age 9 (I am 26 now) I have been getting hives throughout my whole body every single day. My doctors can’t figure out what’s going on and no medication helps! I am on Plaquenil, Gabapentin, Zyrtec,
Shubertrachel
in
Fibromyalgia Action UK
4 months ago
New to MPN Voice
Hi, I'm in my upper 40s, diagnoses with PV several years ago. My platelets were just shy of 1.1M at the peak before starting Besremi in May 2023. At that time I was getting a phlebotomy about every 2.5 months to keep HCT below 45. Like others have said on this board, it seems the evidence is strong
Hi, I'm in my upper 40s, diagnoses with PV several years ago. My platelets were just shy of 1.1M at the peak before starting Besremi in May 2023. At that time I was getting a phlebotomy about every 2.5 months to keep HCT below 45. Like others have said on this board, it seems the evidence is strong
Luthorville
in
MPN Voice
4 months ago
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Itchy skin, scratchy eyes, heat and humidity…. 🤔
Good morning from Brisbane, Australia 👋🏻 I’ve got ET JAK2 pos and have started to get the itchies 😆 I have read that it’s common with PV but I wondered about ET? I’ve been trially contact lenses and my eyes aren’t so happy with them. I’ve tried a variety, some monthly’s, some dailies. My left eye
Good morning from Brisbane, Australia 👋🏻 I’ve got ET JAK2 pos and have started to get the itchies 😆 I have read that it’s common with PV but I wondered about ET? I’ve been trially contact lenses and my eyes aren’t so happy with them. I’ve tried a variety, some monthly’s, some dailies. My left eye
Pachena
in
MPN Voice
5 months ago
Help - What This Allergy or Asthma Can Be?
Hi guys, I need your help as my doctors do not give me much information or to be precise been with two allergy doctors, both gave me different opinions so i don't know what to do. Long story short, i'm a runner and after flu a year ago I started having issues with chest tightness during some of my runs
Hi guys, I need your help as my doctors do not give me much information or to be precise been with two allergy doctors, both gave me different opinions so i don't know what to do. Long story short, i'm a runner and after flu a year ago I started having issues with chest tightness during some of my runs
Desoo
in
Asthma Community Forum
6 months ago
Ra and ear problems
I have ra and am taking rinvoq. only recently started having some ear problems fluid on ears and a full feeling causing me to have trouble sleeping. I haven't had any signs of cold or allergies either. the doctor said to use Zyrtec which did not help and I was wondering if anyone has had any ear issues
I have ra and am taking rinvoq. only recently started having some ear problems fluid on ears and a full feeling causing me to have trouble sleeping. I haven't had any signs of cold or allergies either. the doctor said to use Zyrtec which did not help and I was wondering if anyone has had any ear issues
gnstric66
in
NRAS
7 months ago
Anxiety and A-Fib
I had anxiety over getting a Cochlear Implant done. I was taking Atarax on top of Zyrtec which causes QT Elongation. So I was diagnosed with AFIB and sent to the ER. Prescribed Metoprolol and a 81 mg aspirin. I didn't take the Metoprolol because it was on a Recall list by the FDA for 3 months as it
I had anxiety over getting a Cochlear Implant done. I was taking Atarax on top of Zyrtec which causes QT Elongation. So I was diagnosed with AFIB and sent to the ER. Prescribed Metoprolol and a 81 mg aspirin. I didn't take the Metoprolol because it was on a Recall list by the FDA for 3 months as it
FiberedOut555
in
AF Association
1 year ago
Update 7.6
Happy to say that the news remains favorable on all fronts. I reviewed my PV status with the MPN Specialist at Johns Hopkins. I remain in a complete hematologic response at 150mcg Besremi. Tolerance remains the same, with mild lymphopenia, borderline neutropenia, and mild itching. I switched to
Happy to say that the news remains favorable on all fronts. I reviewed my PV status with the MPN Specialist at Johns Hopkins. I remain in a complete hematologic response at 150mcg Besremi. Tolerance remains the same, with mild lymphopenia, borderline neutropenia, and mild itching. I switched to
hunter5582
in
MPN Voice
1 year ago
Does orgasm return post-ADT
I’m into my third month of ADT and have completely lost the ability to orgasm. I am LIVID. I was NEVER told of this side effect. In fact, I was told I’d likely have ED but orgasm would still be possible. Which is an outright lie. Has anyone had the ability to orgasm return after discontinuing ADT or
I’m into my third month of ADT and have completely lost the ability to orgasm. I am LIVID. I was NEVER told of this side effect. In fact, I was told I’d likely have ED but orgasm would still be possible. Which is an outright lie. Has anyone had the ability to orgasm return after discontinuing ADT or
PrettyUnhappyGuy
in
Prostate Cancer And Gay Men
13 hours ago
Sclerosis due to cancer or treatment?
I recently developed sclerosis in my left hip area...painful to sit on a hard surface. PSMA tech wrote 'sclerosis developed consistent with treatment'. Oncologist seems unconcerned. I've read that sclerosis can sometime happen when ADT reduces tumor size, which means the bone has to adjust. The recent
I recently developed sclerosis in my left hip area...painful to sit on a hard surface. PSMA tech wrote 'sclerosis developed consistent with treatment'. Oncologist seems unconcerned. I've read that sclerosis can sometime happen when ADT reduces tumor size, which means the bone has to adjust. The recent
CoastalTex
in
Advanced Prostate Cancer
14 hours ago
2nd pBAT cycle results: AR upregulation? Double strand breaks? Darolutamide?
Started 2nd pBAT cycle on 4-22-24 with a PSA of 0.62 measured 2 days earlier. All 6 injections were 50 mg eod of T propionate with .625 mg letrozole every 5th day as an aromatase inhibitor. The hiT cycle was cut short by 2 injections because of a plan to SBRT treat a pelvic lymph node chain that lit
Started 2nd pBAT cycle on 4-22-24 with a PSA of 0.62 measured 2 days earlier. All 6 injections were 50 mg eod of T propionate with .625 mg letrozole every 5th day as an aromatase inhibitor. The hiT cycle was cut short by 2 injections because of a plan to SBRT treat a pelvic lymph node chain that lit
Ichthus316
in
Fight Prostate Cancer
15 hours ago
The 2024 Advanced Prostate Cancer Consensus Conference (APCCC) meeting-- Chock full of Testosterone...
Greetings FPC Forum Dwellers, Marnie passed me some solid information on the APCCC...and it is all about testosterone... I got you looking now !!! First, the warmup with a case study and the message that when it comes to testosterone recovery, short term ADT can take 18 months and long term ADT to 2
Greetings FPC Forum Dwellers, Marnie passed me some solid information on the APCCC...and it is all about testosterone... I got you looking now !!! First, the warmup with a case study and the message that when it comes to testosterone recovery, short term ADT can take 18 months and long term ADT to 2
NPfisherman
in
Fight Prostate Cancer
20 hours ago
Estrogen for Bone Health in PCa patient.
I am under treatment for Prostrate Cancer since mid 2019. Gleason 9-10 when detected with 250 PSA. Pet CT showed all contained in prostrate but with one ECE and seminal vesicles involvement. No spread visible to lymph nodes or anywhere in the body. Treatment was conventional ADT using Firmagon for 4
I am under treatment for Prostrate Cancer since mid 2019. Gleason 9-10 when detected with 250 PSA. Pet CT showed all contained in prostrate but with one ECE and seminal vesicles involvement. No spread visible to lymph nodes or anywhere in the body. Treatment was conventional ADT using Firmagon for 4
binati
in
Advanced Prostate Cancer
1 day ago
Brachytherapy boost HDR vs LDR +/- ADT
A bit of my background: 50 years old, Gleason score of 4+3, a PSA of 11, decipher is low, and possible extracapsular extension. 1) I know what LDR and HDR do, but what are the differences in terms of their long-term side effects? 2) Should I include ADT for a better outcome and what percentage improvement
A bit of my background: 50 years old, Gleason score of 4+3, a PSA of 11, decipher is low, and possible extracapsular extension. 1) I know what LDR and HDR do, but what are the differences in terms of their long-term side effects? 2) Should I include ADT for a better outcome and what percentage improvement
Infamous9597
in
Advanced Prostate Cancer
2 days ago
1 Yr on pBAT Results
Hi fellow warriors. After one year of Orgovyx and Darolutamide and still hormone sensitive i decided to change to a testosterone propionate BAT protocol (Russ' Protocol) Here is a graph of my PSA numbers. all the peaks were taken after or during high T cycle. The Highest Peak is 2.46 and lowest 0.03
Hi fellow warriors. After one year of Orgovyx and Darolutamide and still hormone sensitive i decided to change to a testosterone propionate BAT protocol (Russ' Protocol) Here is a graph of my PSA numbers. all the peaks were taken after or during high T cycle. The Highest Peak is 2.46 and lowest 0.03
KocoPr
in
Fight Prostate Cancer
3 days ago
Improved chances of success with ADT?
I'm a Gleason 4+3, group T2C. I completed five sessions of SBRT but the radiation oncologist says staying on Lupron for six months total will improve the odds of success. What I see online, though, is that ADT only improves the odds of success by 1-2 percentage points. If that's the case, it's not worth
I'm a Gleason 4+3, group T2C. I completed five sessions of SBRT but the radiation oncologist says staying on Lupron for six months total will improve the odds of success. What I see online, though, is that ADT only improves the odds of success by 1-2 percentage points. If that's the case, it's not worth
ADT-first-timer
in
Advanced Prostate Cancer
4 days ago
Mortality Risk Up for Cancer Survivors With Elevated Loneliness
Especially with men on ADT with the attendant mood swings, depression, fat gain, & loss of libido, I can see how that could occur. https://www.practiceupdate.com/news/45931/2/1?elsca1=emc_enews_daily-digest&elsca2=email&elsca3=practiceupdate_onc&elsca4=oncology&elsca5=newsletter&rid=MjgxNTg3Njk1MzQzS0&
Especially with men on ADT with the attendant mood swings, depression, fat gain, & loss of libido, I can see how that could occur. https://www.practiceupdate.com/news/45931/2/1?elsca1=emc_enews_daily-digest&elsca2=email&elsca3=practiceupdate_onc&elsca4=oncology&elsca5=newsletter&rid=MjgxNTg3Njk1MzQzS0&
dockam
in
Advanced Prostate Cancer
4 days ago
Enzalutamide Plus 5-Alpha Reductase Inhibitors for Castrate-Sensitive Prostate Cancer
Phase II trial exploring the combination of enzalutamide with five alpha-reductase inhibitors (ARIs) for castrate-sensitive prostate cancer. Driven by observations from geriatric oncology, the study seeks alternatives to androgen deprivation therapy (ADT) for older, frail men who struggle with its side
Phase II trial exploring the combination of enzalutamide with five alpha-reductase inhibitors (ARIs) for castrate-sensitive prostate cancer. Driven by observations from geriatric oncology, the study seeks alternatives to androgen deprivation therapy (ADT) for older, frail men who struggle with its side
God_Loves_Me
in
Advanced Prostate Cancer
4 days ago
blood results
hello, can you tell me how my bloods look? On NDT 1 3/4 am 1 1/2 pm. All well except constant hair loss which is really worrying me now. I will be doing my hormones next month so will add them.
hello, can you tell me how my bloods look? On NDT 1 3/4 am 1 1/2 pm. All well except constant hair loss which is really worrying me now. I will be doing my hormones next month so will add them.
TheresaGreen1967
in
Thyroid UK
4 days ago
Signifficant PSA LEVELS
I'm an 81 year old man who has had an enlarged prostate for several months. PSA tests levels 9.1 and 8.1 (several months apart). My Father died of prostate cancer, which had spread to other parts of his body. Follwing a Digital Anal test, my prostate was reported as "smoothly enlarged and sulcus palpable
I'm an 81 year old man who has had an enlarged prostate for several months. PSA tests levels 9.1 and 8.1 (several months apart). My Father died of prostate cancer, which had spread to other parts of his body. Follwing a Digital Anal test, my prostate was reported as "smoothly enlarged and sulcus palpable
apttony
in
Prostate Cancer Network
4 days ago
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