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Cutaneous T cell lymphoma (CTCL)
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BONE MARROW TRANSPLANT
Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT on Thursday 2nd February 2023. I am both privileged and excited about my journey and have no fear or doubts. Special thanks to all of you,
Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT on Thursday 2nd February 2023. I am both privileged and excited about my journey and have no fear or doubts. Special thanks to all of you,
kevinbros
in
MPN Voice
2 years ago
Vitamin K2 for bones - how much, how frequent?
Hi, I have random question for anyone on here who is taking Vitamin K2 to support their calcium/magnesium/D3 intake for bones compromised by coeliac and/or allergic or intolerant to dairy. I do take a dropper type of K2 (oil based) which is pricey, and looking at cheaper brands that are pill based (basic
Hi, I have random question for anyone on here who is taking Vitamin K2 to support their calcium/magnesium/D3 intake for bones compromised by coeliac and/or allergic or intolerant to dairy. I do take a dropper type of K2 (oil based) which is pricey, and looking at cheaper brands that are pill based (basic
Hidden
in
Gluten Free Guerrillas
2 years ago
CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
lankisterguy
Volunteer
in
CLL Support
2 years ago
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Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
lankisterguy
Volunteer
in
CLL Support
2 years ago
Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
sequeluk
in
PMRGCAuk
2 years ago
Half (3 areas) of my cancer cells are gone!!!!
Hello! I want to share some good news. I am on Watch and Wait. I only do non traditional practices like eating cactus, ginger, tumeric, green drinks (celery, kale, cucumbers, cactus, sometimes with fruits , etc. If you read my post, I have tried CBD, Inositol, I PRAY A Lot. I was diagnosed in 2017
Hello! I want to share some good news. I am on Watch and Wait. I only do non traditional practices like eating cactus, ginger, tumeric, green drinks (celery, kale, cucumbers, cactus, sometimes with fruits , etc. If you read my post, I have tried CBD, Inositol, I PRAY A Lot. I was diagnosed in 2017
BLP1211
in
Non Hodgkin's Lymphoma Friends
2 years ago
Preparations afoot for my stem cell transplant
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
Scaredy_cat
in
MPN Voice
2 years ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
2 years ago
Had a blood test at GP's, not for CLL
I was called to my GP's for a blood test related to my new heart medication. I also had an Echocardigram and a 24 hour monitoring tape. Surprise, surprise no one seems to know where they have sent the results. I have telephoned every department I can think of but no one admits to knowing anything!!
I was called to my GP's for a blood test related to my new heart medication. I also had an Echocardigram and a 24 hour monitoring tape. Surprise, surprise no one seems to know where they have sent the results. I have telephoned every department I can think of but no one admits to knowing anything!!
kitchengardener2
in
CLL Support
2 years ago
GP refusing to offer IFAB Test
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
cloudspotting
in
Pernicious Anaemia Society
2 years ago
Does Covid boost ALS?
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
JDG45
in
CLL Support
2 years ago
Stem Cell Transplant (stc) after care
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Scaredy_cat
in
MPN Voice
2 years ago
COVID: Staying Safe As The Virus Evolves - LLS Podcast / CLL Society’s COVID-19 Update December 5th, 2022 / Dec 15 2022 end Antibody Study
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
lankisterguy
Volunteer
in
CLL Support
2 years ago
Husband's Ventoclax Ramp Up Goes Smoothly!
Here in California, the temperature reached 120 degrees on the first day of my husband's Ventoclax Ramp Up. Our power went out, and without AC, it was definitely a day to remember! On the positive side, he followed his specialist's instructions, labs followed by ventoclax medication, followed by more
Here in California, the temperature reached 120 degrees on the first day of my husband's Ventoclax Ramp Up. Our power went out, and without AC, it was definitely a day to remember! On the positive side, he followed his specialist's instructions, labs followed by ventoclax medication, followed by more
lisakc1
in
CLL Support
2 years ago
2022 American College of Rheumatology Classification Criteria for Giant Cell Arteritis
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
Exflex
in
PMRGCAuk
2 years ago
COVID update: Who remains at higher risk? by LLS.org
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
lankisterguy
Volunteer
in
CLL Support
2 years ago
Son in Canada looks to Germany for treatment
Our 56 year old son started with colon cancer, which progressed to lung cancer and now a tumor has been discovered by his sciatica nerve. He has been continually been sent for more radiation treatments that don't seem to be working. He has heard of a doctor in Germany who uses different techniques
Our 56 year old son started with colon cancer, which progressed to lung cancer and now a tumor has been discovered by his sciatica nerve. He has been continually been sent for more radiation treatments that don't seem to be working. He has heard of a doctor in Germany who uses different techniques
CCgroup
in
CLL Support
2 years ago
Good News Train
Hello CLLers Due to my very aggressive ALC doubling every 3 months and massive abdominal lymph nodes, my H/O thought I might have large cell lymphoma on top of my relapsing CLL. I was scheduled for abdominal lymph node biopsy on Sept 7th, but as luck would have, it saw my CLL Specialist on August 24th
Hello CLLers Due to my very aggressive ALC doubling every 3 months and massive abdominal lymph nodes, my H/O thought I might have large cell lymphoma on top of my relapsing CLL. I was scheduled for abdominal lymph node biopsy on Sept 7th, but as luck would have, it saw my CLL Specialist on August 24th
Big_Dee
in
CLL Support
2 years ago
trisomy 12 dx with cll
cll and trisomy 12. Any information will help alleviate fears
cll and trisomy 12. Any information will help alleviate fears
Pokerplayer1
in
CLL Support
2 years ago
Tocilizumab
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Hidden
in
PMRGCAuk
2 years ago
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