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Cutaneous T cell lymphoma (CTCL)
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Lymphoma Questions
Hi All, Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high. The study is here: https://www.sciencedirect.com/science/article/abs/pii/S0896841121000561 It seems to suggest that the higher
Hi All, Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high. The study is here: https://www.sciencedirect.com/science/article/abs/pii/S0896841121000561 It seems to suggest that the higher
Insomniacette
in
LUPUS UK
3 years ago
Three and a half years with Mantle cell lymphoma
I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant. After my transplant I had
I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant. After my transplant I had
GT97
in
CLL Support
3 years ago
B12 Testing
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
Pain12345
in
Pernicious Anaemia Society
3 years ago
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I have had both doses of the Pfizer vaccine, while they applauded me after I got my 2nd dose, 90 days later I found that I have no immunity!
I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which
I took Ibrutinib prior to January 20 when it gave me AFib and a few other problems, then stated Venetoclax in July of 2020, and in August started the first of six doses of Rituxan. It would seem that Rituxan is the main culprit, as in my research I found that no immunity was created in cases which
KevinCLLITP
in
CLL Support
3 years ago
Shingrix OK For Immunocompromised Adults
This article was posted today on CLLSLL groups.io and is reposted here with permission from Dr. Furman https://groups.io/g/CLLSLL/message/31608?reply=1 [i] Re: Shingrix OK For Immunocompromised Adults [/i] [i]From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT[/i] [i]-[/i] [i]Shingles is the result
This article was posted today on CLLSLL groups.io and is reposted here with permission from Dr. Furman https://groups.io/g/CLLSLL/message/31608?reply=1 [i] Re: Shingrix OK For Immunocompromised Adults [/i] [i]From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT[/i] [i]-[/i] [i]Shingles is the result
lankisterguy
Volunteer
in
CLL Support
3 years ago
Newbie
Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Akita1963
in
Anxiety and Depression Support
3 years ago
Tocilizumab treatment extension, and latest PET-CT scan results
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Suzita76
in
PMRGCAuk
3 years ago
Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets?
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Yamaha1871
in
ITP Support Association
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
3 years ago
Another HSCT question….
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
krikri1989ho
in
CLL Support
3 years ago
Long term tocilizumab use
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
christine2715
in
PMRGCAuk
3 years ago
Husband Update
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
TM76
in
MPN Voice
3 years ago
Pies!
Whilst I was moaning on about all the restaurants that have given up on GF items on their menus I was thinking too of brighter things. Pies! I love a pork pie and cornish pasty, steak pie. I could go on but you get the picture. I have found an online outlet that sells the lot, all delicious and I want
Whilst I was moaning on about all the restaurants that have given up on GF items on their menus I was thinking too of brighter things. Pies! I love a pork pie and cornish pasty, steak pie. I could go on but you get the picture. I have found an online outlet that sells the lot, all delicious and I want
Kim1950
in
Gluten Free Guerrillas
3 years ago
Doctor wants to start Venetoclax today but recent blood work shows evidence of AIHA but Doctor still says start Ven
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
Palmetto
in
CLL Support
3 years ago
More on Covid vaccines and the inmunocompromised.
Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06, 2021, How effective are Covid vaccines if your immune system is compromised by HIV, cancer or a recent organ transplant? Faced with very little
Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06, 2021, How effective are Covid vaccines if your immune system is compromised by HIV, cancer or a recent organ transplant? Faced with very little
Iupiter
in
CLL Support
3 years ago
Fatigue and very hot flushes
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
AnniesRyder5
in
PMRGCAuk
3 years ago
Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
krikri1989ho
in
CLL Support
3 years ago
ANXIETY SUFFERER ALONG WITH LUPUS
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Goinglong10
in
LUPUS UK
3 years ago
Vaccine efficacy for COPD and immune compromised people
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
macnsyl
in
Lung Conditions Community Forum
3 years ago
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