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Information for people in the UK on Tocilizumab (Ro-Actemra) injections
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Suzita76
in
PMRGCAuk
3 years ago
Low Oxygen Levels
I’m getting very worried about my oxygen levels. I have chronic hypersensitivity Pneumonitis with Fibrosis. On 24 hour oxygen and on lung transplant list. Trying to stay fit to help with the post operative recovery but the slightest activity now makes my SAT’s plummet. Despite using the oxygen, my levels
I’m getting very worried about my oxygen levels. I have chronic hypersensitivity Pneumonitis with Fibrosis. On 24 hour oxygen and on lung transplant list. Trying to stay fit to help with the post operative recovery but the slightest activity now makes my SAT’s plummet. Despite using the oxygen, my levels
mary1956
in
Lung Conditions Community Forum
3 years ago
AI used in battle against asbestos-linked cancer.
International genomics research led by the University of Leicester has used artificial intelligence (AI) to study an aggressive form of cancer, which could improve patient outcomes. Mesothelioma is caused by breathing asbestos particles and most commonly occurs in the linings of the lungs or abdomen
International genomics research led by the University of Leicester has used artificial intelligence (AI) to study an aggressive form of cancer, which could improve patient outcomes. Mesothelioma is caused by breathing asbestos particles and most commonly occurs in the linings of the lungs or abdomen
2greys
in
Lung Conditions Community Forum
3 years ago
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GPs report ‘perfect storm’ of problems leading to 20,000 drop in urgent referrals for lung cancer
Reluctance to attend hospital tests and come forward about symptoms could be contributing to delays in lung cancer diagnosis, a Cancer Research UK survey of GPs across the UK shows. The study of 1,000 GPs has helped to explain a decline in both diagnosis and treatment rates for the disease, with urgent
Reluctance to attend hospital tests and come forward about symptoms could be contributing to delays in lung cancer diagnosis, a Cancer Research UK survey of GPs across the UK shows. The study of 1,000 GPs has helped to explain a decline in both diagnosis and treatment rates for the disease, with urgent
2greys
in
Lung Conditions Community Forum
3 years ago
How was your treatment during 2020?
As you may know, Roy Castle Lung Cancer Foundation is a member of a worldwide network of patient advocacy organisations. This network, the Global Lung Cancer Coalition (GLCC), is the international 'voice' of lung cancer patients and comprises 41 non-government patient organisations from 30 nations. Now
As you may know, Roy Castle Lung Cancer Foundation is a member of a worldwide network of patient advocacy organisations. This network, the Global Lung Cancer Coalition (GLCC), is the international 'voice' of lung cancer patients and comprises 41 non-government patient organisations from 30 nations. Now
LorraineD
Roy Castle
in
The Roy Castle Lung Cancer Foundation
3 years ago
A fascinating podcast on the history and current state of stem cell regeneration.
Did you know humans make around 2 1/2 million red blood cells a second? Did you know the only the stem cell transplant that can currently be done is a bone marrow one? Did you know, at a guess, there have been something like 2 million bone marrow transplants to date. I came across this episode in the
Did you know humans make around 2 1/2 million red blood cells a second? Did you know the only the stem cell transplant that can currently be done is a bone marrow one? Did you know, at a guess, there have been something like 2 million bone marrow transplants to date. I came across this episode in the
Magentas
in
MPN Voice
3 years ago
Stem cell transplant saved me
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
patricih
in
Non Hodgkin's Lymphoma Friends
3 years ago
Feeling tired
Well hi everyone, just a wee update on my bronchoscopy 18th march, apparently consultant could not get near the tumor to get a biopsy so they washed the lungs with salt water sucked out the flush and sent it away for testing, the whole experience wasnt too bad, still bit of sore throat and windpipe
Well hi everyone, just a wee update on my bronchoscopy 18th march, apparently consultant could not get near the tumor to get a biopsy so they washed the lungs with salt water sucked out the flush and sent it away for testing, the whole experience wasnt too bad, still bit of sore throat and windpipe
Paulamg
in
Lung Conditions Community Forum
3 years ago
Don’t want Picc line
I have stage 4 lung cancer and had chemo therapy & immune therapy Cancer has started to grow and now I have to have chemo 😢 also given no choice , got to have a PICC LINE !!! I don’t want this my body my choice. But got told I wouldn’t be able to have chemo therapy without PICC LINE Has anyone else
I have stage 4 lung cancer and had chemo therapy & immune therapy Cancer has started to grow and now I have to have chemo 😢 also given no choice , got to have a PICC LINE !!! I don’t want this my body my choice. But got told I wouldn’t be able to have chemo therapy without PICC LINE Has anyone else
Swadlicote-
in
The Roy Castle Lung Cancer Foundation
3 years ago
A very personal St. Patrick's Day
St. Patrick's Day isn't just another holiday at GO2 Foundation. It's also the 17th anniversary of Bonnie being cancer free. Read the special message from Andrea and Danielle to Bonnie: "March 17, 2004, St. Patrick’s Day, became one of the most significant days in our lives. It is the day our mom, against
St. Patrick's Day isn't just another holiday at GO2 Foundation. It's also the 17th anniversary of Bonnie being cancer free. Read the special message from Andrea and Danielle to Bonnie: "March 17, 2004, St. Patrick’s Day, became one of the most significant days in our lives. It is the day our mom, against
Miranda_GO2
Partner
in
Lung Cancer Support
3 years ago
More than one in 10 patients with lung cancer do not know what type they have.
More than one in 10 patients with lung cancer do not know what type of tumour they have, according to data from a 17-country study carried out by the Global Lung Cancer Coalition (GLCC) to be presented at the European Lung Cancer Conference (ELCC). Nearly one in five patients surveyed did not feel involved
More than one in 10 patients with lung cancer do not know what type of tumour they have, according to data from a 17-country study carried out by the Global Lung Cancer Coalition (GLCC) to be presented at the European Lung Cancer Conference (ELCC). Nearly one in five patients surveyed did not feel involved
2greys
in
Lung Conditions Community Forum
3 years ago
Help make a drug to treat GvHD available to patients
You can help make a drug to treat GvHD available to patients in Canada, regardless of where you live. CLL Canada, along with an alliance of 8 other blood cancer organizations, is preparing patient input submissions for the Canadian Agency for Drugs and Technologies (CADTH) and Institut national d'excellence
You can help make a drug to treat GvHD available to patients in Canada, regardless of where you live. CLL Canada, along with an alliance of 8 other blood cancer organizations, is preparing patient input submissions for the Canadian Agency for Drugs and Technologies (CADTH) and Institut national d'excellence
CLL_Canada_Group
in
CLL Support
3 years ago
Auto Stem Cell transplant?
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
skinkade
in
Non Hodgkin's Lymphoma Friends
3 years ago
FEV1%
Evening everyone, hope all is well. As posted before, they found a lung nodule back in Jan 2020, due to Covid nothing really happened. In Nov 2020 anothe CT scan showed no movement in shape or size, however due to me having one removed and a large Bullie removed in October 2018, all from same lung
Evening everyone, hope all is well. As posted before, they found a lung nodule back in Jan 2020, due to Covid nothing really happened. In Nov 2020 anothe CT scan showed no movement in shape or size, however due to me having one removed and a large Bullie removed in October 2018, all from same lung
1968
in
Lung Conditions Community Forum
3 years ago
Stage 3 Lung Cancer
Hi everyone, I’ve spent the last couple of months looking through various forums online and finally plucked up the courage to post today. My dad turned 60 this year and has recently been diagnosed last month with stage 3 lung cancer. It’s one tumour on the right side of his lung and his lymph nodes
Hi everyone, I’ve spent the last couple of months looking through various forums online and finally plucked up the courage to post today. My dad turned 60 this year and has recently been diagnosed last month with stage 3 lung cancer. It’s one tumour on the right side of his lung and his lymph nodes
HopefulAnnie101
in
The Roy Castle Lung Cancer Foundation
3 years ago
FDA Updates Approval for Lobrena to First Line Treatment for Advanced NSCLC Patients with Changes in ALK
On March 3rd, 2021, the Food and Drug Administration (FDA) approved Lobrena (lorlatinib) for the first line treatment of non-small cell lung cancer (NSCLC) which has spread outside of the lungs that has a change in ALK identified by an FDA approved test. The FDA based their approval on the results of
On March 3rd, 2021, the Food and Drug Administration (FDA) approved Lobrena (lorlatinib) for the first line treatment of non-small cell lung cancer (NSCLC) which has spread outside of the lungs that has a change in ALK identified by an FDA approved test. The FDA based their approval on the results of
Miranda_GO2
Partner
in
Lung Cancer Support
3 years ago
Spinal Fusion-break Identified while being on the Lung Transplant List.
Good evening all, I have been listed on the Lung Transplant List for over 2 1/2 years now. They noticed right at the start of my evaluation that I had the start of osteoporosis which they put down to years of taking prednisolone. Even though I had this they were still happy to list me. I have recently
Good evening all, I have been listed on the Lung Transplant List for over 2 1/2 years now. They noticed right at the start of my evaluation that I had the start of osteoporosis which they put down to years of taking prednisolone. Even though I had this they were still happy to list me. I have recently
Joseph260268
in
Lung Conditions Community Forum
3 years ago
Seeking information & support re Pancoast Tumour.
I am a newbie and am wondering if there might be others out there in the same position? I have recently been diagnosed with a Pancoast tumour in my right lung. Biopsies & tests have shown the staging to be T4 N2. I have been told that this is non-operable and can only be treated on a palliative basis
I am a newbie and am wondering if there might be others out there in the same position? I have recently been diagnosed with a Pancoast tumour in my right lung. Biopsies & tests have shown the staging to be T4 N2. I have been told that this is non-operable and can only be treated on a palliative basis
Jillyjonks
in
Lung Cancer Support
3 years ago
Dad diagnosed with stage 4 small cell
Hi everyone My dad has recently been diagnosed with stage 4 small cell lung cancer. He has an 11.5cm tumour in his lung. so far we know the cancer has spread to the lymph nodes and the liver. He is not very well he has lost his voice, doesn’t have much appetite, can’t walk very far. He is either in bed
Hi everyone My dad has recently been diagnosed with stage 4 small cell lung cancer. He has an 11.5cm tumour in his lung. so far we know the cancer has spread to the lymph nodes and the liver. He is not very well he has lost his voice, doesn’t have much appetite, can’t walk very far. He is either in bed
LouG83
in
The Roy Castle Lung Cancer Foundation
3 years ago
Chest infection and back on full ventilator - Covid
Hello everyone, My dad has been on a ventilator due to covid for nearly 7 weeks now, the last week they have been weaning him off the ventilator and sedation, he has done so well with his breathing they have put him on a high flow oxygen (via his trachy) so a form of non invasive ventilation and been
Hello everyone, My dad has been on a ventilator due to covid for nearly 7 weeks now, the last week they have been weaning him off the ventilator and sedation, he has done so well with his breathing they have put him on a high flow oxygen (via his trachy) so a form of non invasive ventilation and been
Doggie1233
in
ICUsteps
3 years ago
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