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Leukemia & Lymphoma Society (USA) provides a LLS Clinical Trial Nurse Navigator to assist you throughout the entire clinical trial process
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
lankisterguy
Volunteer
in
CLL Support
2 years ago
Ibrutinib Resistance
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Adel1
in
CLL Support
2 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
2 years ago
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BTK inhibitor challenges by Dr. Nicole Lamanna
Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for Medical Professionals, using Med-Speak at a rapid pace, so I have pasted the transcript below. - Nicole Lamanna, MD: With the advent of the BTK [Bruton
Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for Medical Professionals, using Med-Speak at a rapid pace, so I have pasted the transcript below. - Nicole Lamanna, MD: With the advent of the BTK [Bruton
lankisterguy
Volunteer
in
CLL Support
2 years ago
At a Dialysis Crossroads
I have to decide whether to get a fistula in my arm and go with hemodialysis, or go with peritoneal dialysis. I spent a couple of hours in a center talking to a couple of nurses about peritoneal dialysis and it sounds like a bad choice given its near constant presence in your life. With hemodialysis
I have to decide whether to get a fistula in my arm and go with hemodialysis, or go with peritoneal dialysis. I spent a couple of hours in a center talking to a couple of nurses about peritoneal dialysis and it sounds like a bad choice given its near constant presence in your life. With hemodialysis
MP11
in
Kidney Dialysis
2 years ago
46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Flitzebogen
in
CLL Support
2 years ago
Macular oedema and steroids
I have diabetic macular oedema and my opthamologist said today that although my eyes are not getting any worse my right eye maybe needs some laser. She said she thought it wasn’t the diabetes that was the problem, I am in remission with a hba1c of 37 but the steroids. Any thoughts on this please. My
I have diabetic macular oedema and my opthamologist said today that although my eyes are not getting any worse my right eye maybe needs some laser. She said she thought it wasn’t the diabetes that was the problem, I am in remission with a hba1c of 37 but the steroids. Any thoughts on this please. My
Koalajane
in
PMRGCAuk
2 years ago
Statement from NHS digital acknowledging CLL error in PCR codes
“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement
“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement
Bartlet
in
CLL Support
2 years ago
CLL patient cured a decade after gene therapy
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
WinJ3
in
CLL Support
2 years ago
Blood cancer uk explain why some CLLers are finally getting priority PCR tests
❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test 📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told
❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test 📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told
Bartlet
in
CLL Support
2 years ago
ME/CFS discussed in terms of thyroid dysfunction
Interesting papers are coming in, in droves almost. This downloadable paper discusses links between thyroid function in critical illness and ME/CFS. Title and Abstract here:
PERSPECTIVE article
Front. Med., 08 March 2022 | https://doi.org/10.3389/fmed.2022.818728
Perspective: Drawing
Interesting papers are coming in, in droves almost. This downloadable paper discusses links between thyroid function in critical illness and ME/CFS. Title and Abstract here:
PERSPECTIVE article
Front. Med., 08 March 2022 | https://doi.org/10.3389/fmed.2022.818728
Perspective: Drawing
diogenes
in
Thyroid UK
2 years ago
can't get a letter for a priority PCR with CLL.
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
CrazyDaisy68
in
CLL Support
2 years ago
Skin Tag / Polyp Removal - Eggs Collected Today
Hi I had my eggs collected today. Feeling a bit tender! I’m 40 with 7.7 AMH and they collected 7 eggs so I am happy with that. They wanted to check a skin tag and today referred me to have it removed. (My embryos will be frozen) Waiting on updates to know grade & how many with be frozen. Question
Hi I had my eggs collected today. Feeling a bit tender! I’m 40 with 7.7 AMH and they collected 7 eggs so I am happy with that. They wanted to check a skin tag and today referred me to have it removed. (My embryos will be frozen) Waiting on updates to know grade & how many with be frozen. Question
LolaMax
in
Fertility Network UK
3 years ago
Tacrolimus?
Hi guys, Can anyone tell me if 14mg of tacrolimus everyday after 3 months post transplant is normal? I know from other consultants that I have slight rejection. I have 1 consultant who will not give me an answer to "what are my blood results". He says everything is fine and there is nothing to worry
Hi guys, Can anyone tell me if 14mg of tacrolimus everyday after 3 months post transplant is normal? I know from other consultants that I have slight rejection. I have 1 consultant who will not give me an answer to "what are my blood results". He says everything is fine and there is nothing to worry
Zukosmile07
in
British Liver Trust
2 years ago
Evidence omicron risk is higher for blood cancer patients
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
Bartlet
in
CLL Support
2 years ago
Clinical trials for Richter's transformation
Hello. I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them. We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they
Hello. I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them. We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they
Priss69
in
CLL Support
2 years ago
DOES IVERMECTIN SLOW CLL
I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got covid and took ivermectin for a few days and my lymphocyte count went down from 30k to about 26.5k. I thought maybe a coincidence. Doing some
I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got covid and took ivermectin for a few days and my lymphocyte count went down from 30k to about 26.5k. I thought maybe a coincidence. Doing some
mleo123
in
CLL Support
2 years ago
Spring, and unusual weather
Think here in Midlands have early spring, my prunus cherry tree is in full bloom, pigeons eating flowers, hardy fuchsias in leaf, whilst snowdrops crocus etc still flowering beautifully. Lucky not to have had flooding where I live. Blue tits have been going into their box since before Christmas, can
Think here in Midlands have early spring, my prunus cherry tree is in full bloom, pigeons eating flowers, hardy fuchsias in leaf, whilst snowdrops crocus etc still flowering beautifully. Lucky not to have had flooding where I live. Blue tits have been going into their box since before Christmas, can
Morrison10
in
Lung Conditions Community Forum
2 years ago
Priority PCR test and SNOMED coding
Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are
Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are
Greencyclist
in
CLL Support
3 years ago
Prednisolone
Has anyone managed to come off Prednisolone 8 yrs after transplant and just manage on Tacrolimus alone?
Has anyone managed to come off Prednisolone 8 yrs after transplant and just manage on Tacrolimus alone?
Tracy1654
in
Kidney Transplant Patient Support
2 years ago
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