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Neutropenia whilst on Tocilizumab
Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked
Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked
Magsters123
in
PMRGCAuk
4 months ago
Qualifying for Tocilizumab
Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would
Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would
Golfers1
in
PMRGCAuk
4 months ago
Time flies... when you're having babies!
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
8 months ago
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Tagrisso vs Erlotinib
Hi All, Dad had results of liquid biopsy and EGFR positive, Oncologist has recommended Erlotinib ( NHS treatment). We understand that his diagnosis T4 N2 M0 is non curative but trying to balance quality of life and length; chemo and a standard biopsy were deemed not tolerable for my 89 yr old dad. Silly
Hi All, Dad had results of liquid biopsy and EGFR positive, Oncologist has recommended Erlotinib ( NHS treatment). We understand that his diagnosis T4 N2 M0 is non curative but trying to balance quality of life and length; chemo and a standard biopsy were deemed not tolerable for my 89 yr old dad. Silly
Adaughter
in
The Roy Castle Lung Cancer Foundation
1 year ago
Coopersmummy7
Hi,I am new to this awful condition.Had nearly a year of being undiagnosed and finally rushed into hospital Dec.22 with GCAand loss of sight in one eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am
Hi,I am new to this awful condition.Had nearly a year of being undiagnosed and finally rushed into hospital Dec.22 with GCAand loss of sight in one eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am
Angelsmummy
in
PMRGCAuk
5 months ago
Colonoscopy
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Babciboys
in
PMRGCAuk
3 months ago
Venetoclax
Hi everyone , I am so glad with this site. My name is Anja, 67 years old , and I live in the Netherlands. I was diagnosed with CLL in september 2010. In 2012 I got FCR for six rounds. After that I was stuffy and it occurred that I had heart failure because of the chemo therapy. It took me years
Hi everyone , I am so glad with this site. My name is Anja, 67 years old , and I live in the Netherlands. I was diagnosed with CLL in september 2010. In 2012 I got FCR for six rounds. After that I was stuffy and it occurred that I had heart failure because of the chemo therapy. It took me years
jroon08
in
CLL Support
9 days ago
Continued Journey
This is day +67 for me since by Bone Marrow Transplant. Happy Labor Day here in the USA. I had been cruising along with a few seemingly minor issues. GI tract at times has been an issue especially with bowel movements. As I was weened off the steroid Prednisone I have recently been put on the steroid
This is day +67 for me since by Bone Marrow Transplant. Happy Labor Day here in the USA. I had been cruising along with a few seemingly minor issues. GI tract at times has been an issue especially with bowel movements. As I was weened off the steroid Prednisone I have recently been put on the steroid
FiArt12X
in
CLL Support
14 days ago
Still Hangin in There
Hi everyone. 9+ years on (take a peek at my bio.) Stage IV pca. I'm still hormone sensitive with undetectable PSA. Living life and enjoying my time with friends and family. In November I will enter year 2 of multiple myeloma DX. Have been through induction but not needing a stem cell transplant
Hi everyone. 9+ years on (take a peek at my bio.) Stage IV pca. I'm still hormone sensitive with undetectable PSA. Living life and enjoying my time with friends and family. In November I will enter year 2 of multiple myeloma DX. Have been through induction but not needing a stem cell transplant
swwags
in
Advanced Prostate Cancer
14 days ago
Richter's and Novel Treatments/Combinations
We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones
We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones
Jm954
Administrator
in
CLL Support
28 days ago
Vasculitus, a promising road ahead- let’s hope so!
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00094-8/fulltext?dgcid=raven_jbs_aip_email ‘…Biologics have come to the forefront as glucocorticoid-sparing agents. After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00094-8/fulltext?dgcid=raven_jbs_aip_email ‘…Biologics have come to the forefront as glucocorticoid-sparing agents. After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination
Exflex
in
PMRGCAuk
5 months ago
Nintedanib
Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update
Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update
Bonchops10
in
Living with Interstitial Lung Disease (ILD)
11 months ago
PV & Gene Editing for Sickle cell anemia
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
ERei
in
MPN Voice
9 months ago
11 months Post SCT
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
Billarina
in
CLL Support
2 months ago
Waiting game
Hi everyone, I don't have the flu jab, mainly because I have so much pain in my arm and it makes me feel so unwell, doctor not happy as I have severe COPD, not had the jab for last 3 years, touch wood do not suffer from colds flu etc. No covid follow ups either. Call me stupid, but we all do what is
Hi everyone, I don't have the flu jab, mainly because I have so much pain in my arm and it makes me feel so unwell, doctor not happy as I have severe COPD, not had the jab for last 3 years, touch wood do not suffer from colds flu etc. No covid follow ups either. Call me stupid, but we all do what is
purdeyspringer
in
Lung Conditions Community Forum
11 months ago
Lupron cost!!!
LEUPROLIDE ACETATE INJECTION (45mg) 6 Month Description/Modifier Billing Code J9217 Provider billed the plan $35,367.50 Total cost (amount the plan approved) $1,896.00 Your share $379.20 🤨 20% HORMONAL CHEMOTHERAPY ADMINISTRATION $0 🤡
LEUPROLIDE ACETATE INJECTION (45mg) 6 Month Description/Modifier Billing Code J9217 Provider billed the plan $35,367.50 Total cost (amount the plan approved) $1,896.00 Your share $379.20 🤨 20% HORMONAL CHEMOTHERAPY ADMINISTRATION $0 🤡
Still_in_shock
in
Advanced Prostate Cancer
3 hours ago
ESMO 2024 - UpFrontPSMA: randomized study of sequential 177Lu-PSMA-617 and Docetaxel vs Docetaxel in metastatic prostate cancer
Data about overall survival seems immature to me, it seems like there is a slight advantage for the sequential therapy, not very significant, but both arms at 36 months are far away from having reached the median. So I think we have to wait for that parameter. The study enrolled 130 patients with de
Data about overall survival seems immature to me, it seems like there is a slight advantage for the sequential therapy, not very significant, but both arms at 36 months are far away from having reached the median. So I think we have to wait for that parameter. The study enrolled 130 patients with de
Maxone73
in
Advanced Prostate Cancer
7 hours ago
ESMO 2024: phase 1/2 trial of oral masofaniten (EPI-7386) plus Enzalutamide compared to Enzalutamide alone in men with mCRPC
This looks promising. The trial enrolled 18 patients who were on androgen deprivation therapy but had not received prior AR pathway inhibitors; some had received chemotherapy in the hormone-sensitive setting. Patients were treated with escalating doses of Masofaniten (EPI-7386), up to 600 mg twice daily
This looks promising. The trial enrolled 18 patients who were on androgen deprivation therapy but had not received prior AR pathway inhibitors; some had received chemotherapy in the hormone-sensitive setting. Patients were treated with escalating doses of Masofaniten (EPI-7386), up to 600 mg twice daily
Maxone73
in
Advanced Prostate Cancer
6 hours ago
ESMO 2024: TAMARACK, a randomized phase 2 trial of the B7-H3 targeting ADC Vobramitamab for metastatic CRPC
My sensation is that it is too early to say ho well it works, but SE look pretty harsh! The trial enrolled 181 men with mCRPC who had previously received one androgen receptor pathway inhibitor. Participants were randomized to receive vobramitamab at either 2.0 mg/kg or 2.7 mg/kg every four weeks. The
My sensation is that it is too early to say ho well it works, but SE look pretty harsh! The trial enrolled 181 men with mCRPC who had previously received one androgen receptor pathway inhibitor. Participants were randomized to receive vobramitamab at either 2.0 mg/kg or 2.7 mg/kg every four weeks. The
Maxone73
in
Advanced Prostate Cancer
6 hours ago
ESMO 2024: BMS-986365 in heavily pretreated patients with mCRPC
Ok, I am not so impressed with this new molecule, but here it is. BMS-986365 is designed to inhibit androgen receptor (AR) activity through a dual mechanism of degrading the receptor and blocking its function, aiming to overcome resistance to standard AR pathway inhibitors like enzalutamide and abiraterone
Ok, I am not so impressed with this new molecule, but here it is. BMS-986365 is designed to inhibit androgen receptor (AR) activity through a dual mechanism of degrading the receptor and blocking its function, aiming to overcome resistance to standard AR pathway inhibitors like enzalutamide and abiraterone
Maxone73
in
Advanced Prostate Cancer
7 hours ago
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