Search
Search
About
Log in
Join
Experiences with
Mantle cell lymphoma (MCL)
Posts
Communities
1,685 public posts
Filter results
One year stem cell transplant anniversary
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
Scaredy_cat
in
MPN Voice
7 months ago
Tocilizumab
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
Noni71
in
PMRGCAuk
9 months ago
How often to Self Inject
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
MrJustatip
in
Pernicious Anaemia Society
10 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
have you had trouble getting approved for stem cell transplant?
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
Plasmapool
in
MPN Voice
7 months ago
Tocilizumab in the UK
I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired
I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired
WaltzG
in
PMRGCAuk
9 months ago
Colon cancer secondary to CLL
I had posted that I was diagnosed with stage 3 colon cancer and I’ve since had the mass successfully removed. Out of 16 lymph nodes analyzed 1 had cancer. So it’s off to chemo therapy in two weeks. For three months. Is there anyone in the group who’s experiencing this ? And does anyone have experience
I had posted that I was diagnosed with stage 3 colon cancer and I’ve since had the mass successfully removed. Out of 16 lymph nodes analyzed 1 had cancer. So it’s off to chemo therapy in two weeks. For three months. Is there anyone in the group who’s experiencing this ? And does anyone have experience
angelikab
in
CLL Support
1 year ago
Adrenals
Morning everyone. This is my first post on here. I was diagnosed with GCA in August 2022 and have been tapering down the Prednisolone to 5mg. I also take Tocilizumab and Methotrexate as I’ve had a difficult time with the Prednisolone so many side effects. How do I know if my adrenal glands are working
Morning everyone. This is my first post on here. I was diagnosed with GCA in August 2022 and have been tapering down the Prednisolone to 5mg. I also take Tocilizumab and Methotrexate as I’ve had a difficult time with the Prednisolone so many side effects. How do I know if my adrenal glands are working
Noni71
in
PMRGCAuk
10 months ago
There’s no point to this post
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Bramble2000
in
PMRGCAuk
10 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
10 months ago
Should I switch SSRIs?
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Griffo_
in
Thyroid UK
1 year ago
Need help understanding results
My bf is newly diagnosed and doesn’t have next doctor’s appt for a few days. He just got the results for the CLL FISH panel and I’m trying to get a preliminary sense of what the implications may be. Thanks for any help! “RESULT: POSITIVE FISH RESULT for TRISOMY 12 and DELETION of 13q14.3; NEGATIVE FISH
My bf is newly diagnosed and doesn’t have next doctor’s appt for a few days. He just got the results for the CLL FISH panel and I’m trying to get a preliminary sense of what the implications may be. Thanks for any help! “RESULT: POSITIVE FISH RESULT for TRISOMY 12 and DELETION of 13q14.3; NEGATIVE FISH
karmacrepe
in
CLL Support
1 year ago
Successfully treated my Multiple Myeloma and now in remission from both MM and PCA
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
swwags
in
Advanced Prostate Cancer
9 months ago
CLL is a lymphoid stem cell cancer so why are my myleloid stem cell products falling so much?
I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with minimal side effects. ALC coming down from >200,000 to less than 30,000 after 9 months in April. Going to Dana Farber next week. My question is: if CLL is a lymphocyte cancer and lymphocytes come from lymphoid stem cells
I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with minimal side effects. ALC coming down from >200,000 to less than 30,000 after 9 months in April. Going to Dana Farber next week. My question is: if CLL is a lymphocyte cancer and lymphocytes come from lymphoid stem cells
CaptRon1976
in
CLL Support
1 year ago
Colon cancer as secondary cancer
Hi I just got diagnosed with colon cancer last week and I am lucky I will have the operation to remove it on Tuesday - a very good Kaiser surgeon got me in quickly. It's not clear if it has advanced - I hope not- so we will see. I had a CT scan for the CLL in March when they saw something in the colon
Hi I just got diagnosed with colon cancer last week and I am lucky I will have the operation to remove it on Tuesday - a very good Kaiser surgeon got me in quickly. It's not clear if it has advanced - I hope not- so we will see. I had a CT scan for the CLL in March when they saw something in the colon
angelikab
in
CLL Support
1 year ago
Benefits of knowing your illness/condition/disease to help others as well as yourself
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
123-go
in
PMRGCAuk
10 months ago
Immune Responses + Autoimmune Myelofibrosis
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
LongETinUS
in
MPN Voice
9 months ago
Latest bloodwork
My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions about some elements. I have been on a low dose of (140mg) for the past 5 years and was previously treated with FCR in 2013. I will see my oncologist
My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions about some elements. I have been on a low dose of (140mg) for the past 5 years and was previously treated with FCR in 2013. I will see my oncologist
rubberlegs68
in
CLL Support
1 year ago
A case study post bariatric surgery
For anyone who has access to twitter, this case study posted yesterday might be of some interest. Probably as much for the discussion as the original case. (Don't get too excited! It is just another case where the origination of the problem doesn't get blamed. As I see it, the cause was iatrogenic and
For anyone who has access to twitter, this case study posted yesterday might be of some interest. Probably as much for the discussion as the original case. (Don't get too excited! It is just another case where the origination of the problem doesn't get blamed. As I see it, the cause was iatrogenic and
helvella
in
Pernicious Anaemia Society
1 year ago
Tooth extraction and tocilizumab
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
WaltzG
in
PMRGCAuk
11 months ago
Start of my stem cell journey 0.3.1 ambulatory care
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
Grizly
in
MPN Voice
10 months ago
1
...
6
7
8
...
85
Next page
10
20
30
40
50
60
70
80
Filter results
Clear filters
Posted in
All communities
CLL Support
555 results
PMRGCAuk
202 results
MPN Voice
130 results
View top 10 communities
Sort by
Most Relevant
Newest