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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
2 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
3 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
4 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
6 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
New Labs
Sorry it has been years since able to get on my technology. Finally feeling better. These are my latest results any suggestions. Currently taking Tirosint 75mcg. May 15,2024 TSH 3rd generation 1.710 (.4-4.5 uIU/ML) T3 Reverse. 16.5 (9.0-27.0mg/dl) T3 Free 2.40 (2.40-6.80 pg/ml) T3
Sorry it has been years since able to get on my technology. Finally feeling better. These are my latest results any suggestions. Currently taking Tirosint 75mcg. May 15,2024 TSH 3rd generation 1.710 (.4-4.5 uIU/ML) T3 Reverse. 16.5 (9.0-27.0mg/dl) T3 Free 2.40 (2.40-6.80 pg/ml) T3
Thyroid66
in
Thyroid UK
14 hours ago
Scary PSA results
I was diagnosed in October 2023 with Gleason 4+5=9. Tissue came from TURP. PSA was 11.8. PSMA Pet was negative for METS. Started ADT on November 9. Did 28 sessions of IMRT from Feb 12, 2024, to Mar 21, 2024. Nadir was .8 on Mar 26 and then the last two have been 1.5 and 3.1. RO said 2.8 was the
I was diagnosed in October 2023 with Gleason 4+5=9. Tissue came from TURP. PSA was 11.8. PSMA Pet was negative for METS. Started ADT on November 9. Did 28 sessions of IMRT from Feb 12, 2024, to Mar 21, 2024. Nadir was .8 on Mar 26 and then the last two have been 1.5 and 3.1. RO said 2.8 was the
7OaksTom
in
Advanced Prostate Cancer
15 hours ago
apalutamide vs. abiraterone
My husband has been recommended ADT + abiraterone + prednisone for two years. My friend who is an oncologist suggested apalutamide instead as it doesn't need to be supplements with prednisone and has less side effects. Wanted your opinion.
My husband has been recommended ADT + abiraterone + prednisone for two years. My friend who is an oncologist suggested apalutamide instead as it doesn't need to be supplements with prednisone and has less side effects. Wanted your opinion.
SherryKahn
in
Advanced Prostate Cancer
2 days ago
Test results
My latest blood tests have just come back. I’d be grateful for comments from the amazing admins please. At the moment I’m not feeling great, my last tests about 8 months ago showed my B12 to be low so I started taking a liquid B12 supplement sublingually. I’m not taking any iron supplements. I take vit
My latest blood tests have just come back. I’d be grateful for comments from the amazing admins please. At the moment I’m not feeling great, my last tests about 8 months ago showed my B12 to be low so I started taking a liquid B12 supplement sublingually. I’m not taking any iron supplements. I take vit
Fox123
in
Thyroid UK
2 days ago
SUV-Max
Hello , Ive been on Eligard , Zytiga , predizone 26 months . Im oligo with 1 tumor in pelvic lymph node that was radiated , then 25 fractions across the pelvic region . The tumor they radiated was at SUV-MAX 24 . All labs are good , not much of side effects . I thought about stopping the meds after
Hello , Ive been on Eligard , Zytiga , predizone 26 months . Im oligo with 1 tumor in pelvic lymph node that was radiated , then 25 fractions across the pelvic region . The tumor they radiated was at SUV-MAX 24 . All labs are good , not much of side effects . I thought about stopping the meds after
reconjj
in
Advanced Prostate Cancer
3 days ago
Dad 2nd BCR. Advice needed...
After a very late salvage radiation + 1 year Lupron. He has been off ADT for 1 year when PSA began to rise again. From 0.01 to 0.03 in less than 2 months then 0.05 after another 3 months. Is this indicative of an aggressive progression and metastasis? The oncologist said that the doubling time is not
After a very late salvage radiation + 1 year Lupron. He has been off ADT for 1 year when PSA began to rise again. From 0.01 to 0.03 in less than 2 months then 0.05 after another 3 months. Is this indicative of an aggressive progression and metastasis? The oncologist said that the doubling time is not
MsBoBo
in
Advanced Prostate Cancer
3 days ago
5 aRIs and PCa and recurrence.
I’m recurrent in prostate bed with three negative PSMA PET scans and essentially unchanged size of enhancing nodule over 18 months on three MRIs DUT and FIN began when PSA reached 0.36. In six weeks dropped to 0.26 after beginning DUT and FIN. they are affecting sensitivity of the PSMA scans. After
I’m recurrent in prostate bed with three negative PSMA PET scans and essentially unchanged size of enhancing nodule over 18 months on three MRIs DUT and FIN began when PSA reached 0.36. In six weeks dropped to 0.26 after beginning DUT and FIN. they are affecting sensitivity of the PSMA scans. After
LowT
in
Advanced Prostate Cancer
3 days ago
is this what CR looks like?
Starting Nov 20 last year, I began a relugolix on-cycle. Here’s the PSA readings from that point: Nov 20 : 3.10 Jan 8: 0.31 Feb 27: 0.13 Apr 15: 0.08 So up to this point, the PSA is dropping nicely, as it always has with on-cycles; and as I would expect, since I’ve been a strong responder
Starting Nov 20 last year, I began a relugolix on-cycle. Here’s the PSA readings from that point: Nov 20 : 3.10 Jan 8: 0.31 Feb 27: 0.13 Apr 15: 0.08 So up to this point, the PSA is dropping nicely, as it always has with on-cycles; and as I would expect, since I’ve been a strong responder
lokibear0803
in
Advanced Prostate Cancer
4 days ago
Ndt and iodine supplement?
Hello everyone! I started treatment with NDT in t4 6 micrograms and t3 1.4 in December 2023. I tolerate it well and I'm happy about it! From my analysis done this month it turns out that my ft4 is 0.98 and ft3 is 2.69 and the tsh is 1.34... How do you find these analyses? My endocrinologist wants to
Hello everyone! I started treatment with NDT in t4 6 micrograms and t3 1.4 in December 2023. I tolerate it well and I'm happy about it! From my analysis done this month it turns out that my ft4 is 0.98 and ft3 is 2.69 and the tsh is 1.34... How do you find these analyses? My endocrinologist wants to
darkacademia
in
Thyroid UK
4 days ago
Help with labs please? desperate, house bound primarily
Hello, could anyone please help me with interpreting labs? I am on 25mg hydrocortisone for adrenals. 12 hours fasted, except for a tiny sip of diet coke (i wasn't thinking, i barely swallowed it though). No meds, no biotin. Please any advice? TSH 3,38 mU/L Ref: 0,27 - 4,20 T4-total° 8,9 µg/dL Ref
Hello, could anyone please help me with interpreting labs? I am on 25mg hydrocortisone for adrenals. 12 hours fasted, except for a tiny sip of diet coke (i wasn't thinking, i barely swallowed it though). No meds, no biotin. Please any advice? TSH 3,38 mU/L Ref: 0,27 - 4,20 T4-total° 8,9 µg/dL Ref
ratqueenxo
in
Thyroid UK
5 days ago
Bench mark blood tests before switching to NDT
I would welcome any comments or advice on these results and on the process of switching from levothyroxine to NDT. Thank you! Hypothyroidism I have been taking levothyroxin 100 mg for over 30 years since my early 40s. (This is my only medication. Otherwise I keep healthy with yoga, regular exercise
I would welcome any comments or advice on these results and on the process of switching from levothyroxine to NDT. Thank you! Hypothyroidism I have been taking levothyroxin 100 mg for over 30 years since my early 40s. (This is my only medication. Otherwise I keep healthy with yoga, regular exercise
Hipp0cratix
in
Thyroid UK
5 days ago
Results from 4 Genomic labs
3 years ago we received a Foundation ONE Report giving us the report he has CDK12 mutation. He has been on Lupron, NUBEQA, and Zytiga. Over time they have failed. Recently, 4 lymph nodes were removed for thorough testing to make sure C had not mutated into Neuroendocrine. It had not. Actually, the
3 years ago we received a Foundation ONE Report giving us the report he has CDK12 mutation. He has been on Lupron, NUBEQA, and Zytiga. Over time they have failed. Recently, 4 lymph nodes were removed for thorough testing to make sure C had not mutated into Neuroendocrine. It had not. Actually, the
JolleySprings
in
Advanced Prostate Cancer
5 days ago
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