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Genetic Mutation Driven lung Cancer Support
As our last online support group for genetically mutated lung cancer was so succesful we are starting up a new group. We provide a safe space for peer support and a chance to make true connections with others who understand. Our groups are hosted by trained facilitators and this group will run weekly
As our last online support group for genetically mutated lung cancer was so succesful we are starting up a new group. We provide a safe space for peer support and a chance to make true connections with others who understand. Our groups are hosted by trained facilitators and this group will run weekly
ConnectRoyCastle
Administrator
in
The Roy Castle Lung Cancer Foundation
1 year ago
I think, I get over Behçet disease.
Hello, I'm Josaphat from Madagascar. My first symptom for Behçet disease appeared in Mars 2020. I had sores in my mouth. After that It started to appear my genital. I consulted doctor for many times and they always suggested me to use either antibiotics or aciclovir. With time, my situation became worse
Hello, I'm Josaphat from Madagascar. My first symptom for Behçet disease appeared in Mars 2020. I had sores in my mouth. After that It started to appear my genital. I consulted doctor for many times and they always suggested me to use either antibiotics or aciclovir. With time, my situation became worse
BaolahyJosaphat
in
Behçet's UK
1 year ago
immuno stopped due to inflammation
morning everyone , I’m currently on immunotherapy ( only had two so far) but this month I’ve developed a cough , chest infection, the hospital checked and say there is inflammation and infection in my lungs , either as a result of immunotherapy or previous radiotherapy… they’ve stopped my immunotherapy
morning everyone , I’m currently on immunotherapy ( only had two so far) but this month I’ve developed a cough , chest infection, the hospital checked and say there is inflammation and infection in my lungs , either as a result of immunotherapy or previous radiotherapy… they’ve stopped my immunotherapy
mishamilo53
in
The Roy Castle Lung Cancer Foundation
1 year ago
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Diagnosed with Adenosquamous lung cancer
hi all First of all just wanted to say a big thank you to all that have posted on here and those that have replied - it's been a great help and a great resource ... I've been diagnosed with T4 N3 M1b Adenosquamous lung cancer ("predominantly adenocarcinoma with some squamous features" according
hi all First of all just wanted to say a big thank you to all that have posted on here and those that have replied - it's been a great help and a great resource ... I've been diagnosed with T4 N3 M1b Adenosquamous lung cancer ("predominantly adenocarcinoma with some squamous features" according
beesgood
in
The Roy Castle Lung Cancer Foundation
1 year ago
Never rains just pours….😡😡
Now being tested for rheumatoid arthritis due to extremely painful ankles, knee and wrists. Hopefully if positive this new addition to the family will get on well with my IPF but as long as the lung transplant can proceed I’m cool. 🤪🤪 Stay safe xx
Now being tested for rheumatoid arthritis due to extremely painful ankles, knee and wrists. Hopefully if positive this new addition to the family will get on well with my IPF but as long as the lung transplant can proceed I’m cool. 🤪🤪 Stay safe xx
Mrbojangles
in
Lung Conditions Community Forum
1 year ago
lungwort
I was recently diagnosed with lung cancer and I’m having radiotherapy at this time. My daughter saw a supplement called Lungwort which she thought might help me. I bought it but I’m now a bit worried about taking it in case it does me harm. My question is - has anyone with a lung condition tried it
I was recently diagnosed with lung cancer and I’m having radiotherapy at this time. My daughter saw a supplement called Lungwort which she thought might help me. I bought it but I’m now a bit worried about taking it in case it does me harm. My question is - has anyone with a lung condition tried it
deni-123red_
in
Lung Conditions Community Forum
1 year ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
1 year ago
Newswire Spring 2023 - my thoughts
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
tangocharlie
in
PMRGCAuk
1 year ago
Lung cancer concern
Please help following a chest infection that wouldn't clear I've had s CT scan the area has grown its 4cm biopsy will be in the following days. I'm terrified I can't eat, sleep I'm convinced its cancer and I won't survive. I already have copd. Im 48 I'm just in dispair. Any advice would be appreciated
Please help following a chest infection that wouldn't clear I've had s CT scan the area has grown its 4cm biopsy will be in the following days. I'm terrified I can't eat, sleep I'm convinced its cancer and I won't survive. I already have copd. Im 48 I'm just in dispair. Any advice would be appreciated
tracyball1
in
Lung Cancer Support
1 year ago
First timer. Anyone taking Mychophenolate
Hello all. Have been getting the benefit reading all the posts from all you lovely fellow sufferers but have been reluctant for no real reason to posts my own. So here goes. Is anyone taking or any experience of Mychophenolate as a steroid sparing medication for GCA. I've been prescribed it as I need
Hello all. Have been getting the benefit reading all the posts from all you lovely fellow sufferers but have been reluctant for no real reason to posts my own. So here goes. Is anyone taking or any experience of Mychophenolate as a steroid sparing medication for GCA. I've been prescribed it as I need
Puffin3
in
PMRGCAuk
1 year ago
Transplant delays and oxygen referrals
First things first, huge apologies for not getting back to those that left a comment on my last post which was now more than 2 months ago. It's safe to say that a lot has happened since then so hold on to your hats! After getting over the disappointment of a third transplant call not working out and
First things first, huge apologies for not getting back to those that left a comment on my last post which was now more than 2 months ago. It's safe to say that a lot has happened since then so hold on to your hats! After getting over the disappointment of a third transplant call not working out and
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
1 year ago
Kras g12c
i was diagnosed with stage IIIA nsclc Nov 2023. Im currently doing carboplatin/paclitaxel 7 rounds 1x weekly and 37 daily radiation treatment. I have been fortunate to not have any side effects other than severe acid reflux and fatigue. This past week found out i have BRCA2, and Kras g12c and STK11
i was diagnosed with stage IIIA nsclc Nov 2023. Im currently doing carboplatin/paclitaxel 7 rounds 1x weekly and 37 daily radiation treatment. I have been fortunate to not have any side effects other than severe acid reflux and fatigue. This past week found out i have BRCA2, and Kras g12c and STK11
DJL10
in
Lung Cancer Support
1 year ago
Vancouver liquid biopsy NGS for lung cancer?
Hi all, I first signed up to this support group when my Mum was diagnosed NSCLC in 2018, she sadly passed away in 2021 after trying Iressa (~1yr), chemo (~1yr), and Tagrisso (~10m). Unfortunately, my ~70yr old uncle who lives in Vancouver had a CT scan last week that showed a change (from one year
Hi all, I first signed up to this support group when my Mum was diagnosed NSCLC in 2018, she sadly passed away in 2021 after trying Iressa (~1yr), chemo (~1yr), and Tagrisso (~10m). Unfortunately, my ~70yr old uncle who lives in Vancouver had a CT scan last week that showed a change (from one year
waterchestnut
in
Lung Cancer Support
1 year ago
Tapering with new issues ongoing
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
arvine
in
PMRGCAuk
1 year ago
Tapering while new issues
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
arvine
in
Pain Concern
1 year ago
What is the difference between these two tests?
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Tigerlilly81
in
Pernicious Anaemia Society
1 year ago
Hot flashes?
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Merryfield
in
PMRGCAuk
1 year ago
length of time for biopsy results
Hi, had a partial lung lobectomy and lymph node removal, was told biopsy results would be back in 7-10 days. It’s now been 41 days and I’ve heard nothing. When I contact various people I’m just being told this length of timeframe is not uncommon.. this does not sound right to me… Anyone else had to wait
Hi, had a partial lung lobectomy and lymph node removal, was told biopsy results would be back in 7-10 days. It’s now been 41 days and I’ve heard nothing. When I contact various people I’m just being told this length of timeframe is not uncommon.. this does not sound right to me… Anyone else had to wait
Hidden
in
Lung Conditions Community Forum
2 years ago
Can you 'demand' Tocilizumab for GCA?
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
tweety_pie
in
PMRGCAuk
1 year ago
Bone Marrow Transplant
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
sicklecellnews
in
Sickle Cell Society
1 year ago
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