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Help make a drug to treat post-transplant CMV available to patients in Canada
If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by completing our survey! You do not need to live in Canada to complete this survey. CLL Canada is working with a coalition of blood cancer patient
If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by completing our survey! You do not need to live in Canada to complete this survey. CLL Canada is working with a coalition of blood cancer patient
CLL_Canada_Group
in
CLL Support
2 years ago
What a couple of weeks…😡
Following double lung transplant assessments they have now discovered i have coronary stenosis but cannot make a final decision until a further report is prepared and discussed with the cardiologist. These tests are so thorough as only the fittest( ironic eh!) can be put forward. Depending on the grade
Following double lung transplant assessments they have now discovered i have coronary stenosis but cannot make a final decision until a further report is prepared and discussed with the cardiologist. These tests are so thorough as only the fittest( ironic eh!) can be put forward. Depending on the grade
Mrbojangles
in
Lung Conditions Community Forum
3 years ago
Jaw spasm & neck muscle problems?
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
AnnW22
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
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Sudden Lymph Node Enlargement
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
StrengthHopeLove
in
CLL Support
2 years ago
Radiotherapy burns
Hi guys After having my whole right lung removed I was doing very well and walking up to 20 minutes at a time. Since having 10 days of radiotherapy a couple of weeks after I have developed very shortness of breath and can’t walk a few yards without gasping for air I had a bronchoscope as there though
Hi guys After having my whole right lung removed I was doing very well and walking up to 20 minutes at a time. Since having 10 days of radiotherapy a couple of weeks after I have developed very shortness of breath and can’t walk a few yards without gasping for air I had a bronchoscope as there though
acedog
in
The Roy Castle Lung Cancer Foundation
3 years ago
6 monthly assessment
Quick update regarding a question I had a couple of months ago. I was worried that I would not be able to perform the walk test at my my 6 monthly check up for my lung transplant. I took your advise, gritted my teeth and increased my oxygen. I managed 4 minutes of slow walking, rested and then completed
Quick update regarding a question I had a couple of months ago. I was worried that I would not be able to perform the walk test at my my 6 monthly check up for my lung transplant. I took your advise, gritted my teeth and increased my oxygen. I managed 4 minutes of slow walking, rested and then completed
mary1956
in
Lung Conditions Community Forum
3 years ago
Confused
I have pf for the last 6 and half Yr its really confusing me or maybe I'm in denial my dr says I'm in the end stages and put me on 2.5ml of morphine, I havnt had a infection for ages now touch wood,I'm on oxygen wise 6lt and 2lt at rest ,I can't really read my breathing test but I think my last one was
I have pf for the last 6 and half Yr its really confusing me or maybe I'm in denial my dr says I'm in the end stages and put me on 2.5ml of morphine, I havnt had a infection for ages now touch wood,I'm on oxygen wise 6lt and 2lt at rest ,I can't really read my breathing test but I think my last one was
Dion50
in
Lung Conditions Community Forum
3 years ago
Can you get life insurance with advanced lung cancer?
My partner who is 42 years old has recently been diagnosed with stage 3/4 lung cancer which has spread to her lymph nodes. We don’t own our house and she doesn’t have life insurance, are there any companies out there who offer life insurance to someone who has an advanced lung cancer. Any information
My partner who is 42 years old has recently been diagnosed with stage 3/4 lung cancer which has spread to her lymph nodes. We don’t own our house and she doesn’t have life insurance, are there any companies out there who offer life insurance to someone who has an advanced lung cancer. Any information
Concernedhusband37
in
The Roy Castle Lung Cancer Foundation
3 years ago
Just wish this night mare was over
Hi a year ago last september i had a nasty chest infection took anitbiotics but a week later i started coughing up blood so dr sent me chest exray which came bk with 2cm shadow on top of right lung. Things moved quickly in the past year i have had 4 ct scans pet scan bronscopsy with wash sputum test
Hi a year ago last september i had a nasty chest infection took anitbiotics but a week later i started coughing up blood so dr sent me chest exray which came bk with 2cm shadow on top of right lung. Things moved quickly in the past year i have had 4 ct scans pet scan bronscopsy with wash sputum test
Pattyb56
in
Lung Cancer Support
3 years ago
Feeling a bit Hopeless
I have been on the lung transplant list for 18 months. I had one dry run 4 months ago, but I am wondering if I will ever get the call. Transplants are low, party because of Covid and only 30% of people on the list received a transplant in the year up to March, according to latest statistics. This has
I have been on the lung transplant list for 18 months. I had one dry run 4 months ago, but I am wondering if I will ever get the call. Transplants are low, party because of Covid and only 30% of people on the list received a transplant in the year up to March, according to latest statistics. This has
mary1956
in
Lung Conditions Community Forum
3 years ago
Hi I am new here, and want to join the team!
My name is Corrine, I am 67 married to a wonderful man, we have a daughter and four lovely grandchildren. I was diagnosed with stage 4 non small cell lung cancer on 28th June and still haven’t got over the shock so I hope to find some coping strategies from others who are either further down the road
My name is Corrine, I am 67 married to a wonderful man, we have a daughter and four lovely grandchildren. I was diagnosed with stage 4 non small cell lung cancer on 28th June and still haven’t got over the shock so I hope to find some coping strategies from others who are either further down the road
Cosmic54
in
The Roy Castle Lung Cancer Foundation
3 years ago
Starting tocilizumab
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
Sharitone
in
PMRGCAuk
3 years ago
Join the Virus Watch project ( in the UK)
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Suzita76
in
PMRGCAuk
3 years ago
Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
3 years ago
Suspected lung cancer
Hi guys, I have difficulty breathing for about 10 years now, some days is worse than others. It's very tight and heavy chest at all times, feels like breathing through the straw and like I need to keep getting satisfying deep breath. I don't have cough. I had X-ray, CT scan, normal scan, blood tests,
Hi guys, I have difficulty breathing for about 10 years now, some days is worse than others. It's very tight and heavy chest at all times, feels like breathing through the straw and like I need to keep getting satisfying deep breath. I don't have cough. I had X-ray, CT scan, normal scan, blood tests,
Markie9788
in
Lung Cancer Support
3 years ago
Suspected lung cancer
Hi guys, I have difficulty breathing for about 10 years now, some days is worse than others. It's very tight and heavy chest at all times, feels like breathing through the straw and like I need to keep getting satisfying deep breath. I don't have cough. I had X-ray, CT scan, normal scan, blood tests,
Hi guys, I have difficulty breathing for about 10 years now, some days is worse than others. It's very tight and heavy chest at all times, feels like breathing through the straw and like I need to keep getting satisfying deep breath. I don't have cough. I had X-ray, CT scan, normal scan, blood tests,
Markie9788
in
Lung Conditions Community Forum
3 years ago
One Very Successful Year and Counting
It was one year ago today I received my first immunotherapy infusion after being diagnosed with Stage IV non-small cell lung cancer. My initial scan three months later showed a 75-85% shrinkage in tumors and ten months into treatment I was told there was No Evidence of Disease. That is the state of
It was one year ago today I received my first immunotherapy infusion after being diagnosed with Stage IV non-small cell lung cancer. My initial scan three months later showed a 75-85% shrinkage in tumors and ten months into treatment I was told there was No Evidence of Disease. That is the state of
TomAnderson
in
Lung Cancer Support
3 years ago
Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
EPguy
in
MPN Voice
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
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