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Cutaneous T cell lymphoma (CTCL)
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Are you due to receive a biologic therapy in the next two weeks? Would you be happy to appear on TV?
Hi everyone, We've been contacted by a producer who is working on a Channel 4 programme for the documentary series, Dispatches. The programme is investigating how a potential US-UK trade deal could affect the availability of biologic treatments on the NHS. As part of the show, they would like to feature
Hi everyone, We've been contacted by a producer who is working on a Channel 4 programme for the documentary series, Dispatches. The programme is investigating how a potential US-UK trade deal could affect the availability of biologic treatments on the NHS. As part of the show, they would like to feature
Paul_Howard
LUPUS UK
in
LUPUS UK
5 years ago
Oncoplex Cancer Gene Panel test
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
t2aa
in
CLL Support
5 years ago
Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
Jm954
Administrator
in
CLL Support
5 years ago
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Troponin levels elevated
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Jalola
in
British Heart Foundation
5 years ago
Bone Marrow Transplant.
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Seifert_09
in
AMN EASIER
5 years ago
Parents Advisory Board
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
Update on previous post but cannot find it 🙄
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Pamela60
in
PMRGCAuk
5 years ago
Imbruvica follow-up
Hi there, I’m a member for almost 1 year already of this great community, so far just reading about experiences and trying to keep positive about my husband’s evolution, diagnosed in June 2017 with Small B Mantle Cell Non Hodgkin Lymphoma. Since September 2018 on Imbruvica, after RCHOP and Radiotherapy
Hi there, I’m a member for almost 1 year already of this great community, so far just reading about experiences and trying to keep positive about my husband’s evolution, diagnosed in June 2017 with Small B Mantle Cell Non Hodgkin Lymphoma. Since September 2018 on Imbruvica, after RCHOP and Radiotherapy
AdrianNS
in
Non Hodgkin's Lymphoma Friends
5 years ago
Parietal cell antibody test
I know I'm repeating myself but want to be clear. Is it correct that if you test negative for this it's reliable? I've not had the intrinsic factor test. I'm asking as I'm getting the vibe as one year in now the surgery want to decrease my B12 injections. B12 was put on my latest blood form after
I know I'm repeating myself but want to be clear. Is it correct that if you test negative for this it's reliable? I've not had the intrinsic factor test. I'm asking as I'm getting the vibe as one year in now the surgery want to decrease my B12 injections. B12 was put on my latest blood form after
Nackapan
in
Pernicious Anaemia Society
5 years ago
Radium-223 in Clinical Practice. Video
Phillip J. Koo
, MD, FACS Division Chief of Diagnostic Imaging at the Banner MD Anderson Cancer Center in Arizona. with
Neal Shore
, MD, the Medical Director of the Carolina Urologic Research Center. 10 minute discussion [1]. First part talks up the safety profile of radium-223 based on 5
Phillip J. Koo
, MD, FACS Division Chief of Diagnostic Imaging at the Banner MD Anderson Cancer Center in Arizona. with
Neal Shore
, MD, the Medical Director of the Carolina Urologic Research Center. 10 minute discussion [1]. First part talks up the safety profile of radium-223 based on 5
pjoshea13
in
Advanced Prostate Cancer
5 years ago
What are the-major-findings-of-the-united-kingdom-prospective-Diabetes-study-ukpds??
UKPDS has been conducting studies on Diabetes since 1977 and during last 42 years they have generated 93 original research papers based upon their trial studies on large number of Diabetes. It is a Bible on diabetes .. giving below few links.....the first link gives the brief summary ... and the second
UKPDS has been conducting studies on Diabetes since 1977 and during last 42 years they have generated 93 original research papers based upon their trial studies on large number of Diabetes. It is a Bible on diabetes .. giving below few links.....the first link gives the brief summary ... and the second
namaha
Administrator
in
Diabetes India
5 years ago
CLL, Spleen Recovery+recommendations
Hi All, I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL. I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least. I had my first dose of Gazyva or
Hi All, I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL. I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least. I had my first dose of Gazyva or
SCE2AUX
in
CLL Support
5 years ago
Today’s WSJ essay on the abject failure of medical science’s progress in dealing with this family of diseases and what must change.
An apparent extension of a highly recommended book that I had read some 8 plus years ago,,,”The Emperor of All Maladies”,,,Now a Ken Burns PBS documentary. The thrust of both books being that intensive treatment of the vast majority of cancers has for many years(4,000 in the case of “The Emperor of
An apparent extension of a highly recommended book that I had read some 8 plus years ago,,,”The Emperor of All Maladies”,,,Now a Ken Burns PBS documentary. The thrust of both books being that intensive treatment of the vast majority of cancers has for many years(4,000 in the case of “The Emperor of
Sxrxrnr1
in
Advanced Prostate Cancer
5 years ago
Clinical trial to test potential new therapy for giant cell arteritis
Well... at least they're looking for options! https://medicalxpress.com/news/2019-09-clinical-trial-potential-therapy-giant.html
Well... at least they're looking for options! https://medicalxpress.com/news/2019-09-clinical-trial-potential-therapy-giant.html
Hidden
in
PMRGCAuk
5 years ago
Lymphoma Canada’s 3rd Annual National Conference for lymphoma patients Saturday, September 21, 2019 8:00am - 5:00pm Hilton Toronto
Register today for Lymphoma Canada’s 3rd Annual National Conference for lymphoma patients, caregivers, and healthcare professionals. https://mailchi.mp/lymphoma/5xojdggiv0-2556149?e=7b399e8498 Saturday, September 21, 2019 8:00am - 5:00pm Hilton Toronto 145 Richmond St. West, Toronto, ON M5H 2L2
Register today for Lymphoma Canada’s 3rd Annual National Conference for lymphoma patients, caregivers, and healthcare professionals. https://mailchi.mp/lymphoma/5xojdggiv0-2556149?e=7b399e8498 Saturday, September 21, 2019 8:00am - 5:00pm Hilton Toronto 145 Richmond St. West, Toronto, ON M5H 2L2
lankisterguy
Volunteer
in
CLL Support
5 years ago
Stem cell transplant for Myelofibrosis
After 12 years with PV and then 2 years with MF I explained in a letter to my consultant that were the decision to have a transplant entirely mine it is what I would wish for. I'd been on Jakavi for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats
After 12 years with PV and then 2 years with MF I explained in a letter to my consultant that were the decision to have a transplant entirely mine it is what I would wish for. I'd been on Jakavi for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats
Dodders
in
MPN Voice
5 years ago
Done with Lutetium
I completed five of the six infusions in the VISION clinical trial before I was excluded due to low hemoglobin. The initial and main cause of the low hemoglobin was my bone marrow transplant in late 2017, but the level continued dropping. Lutetium reduced my PSA by about 300 per infusion, in a linear
I completed five of the six infusions in the VISION clinical trial before I was excluded due to low hemoglobin. The initial and main cause of the low hemoglobin was my bone marrow transplant in late 2017, but the level continued dropping. Lutetium reduced my PSA by about 300 per infusion, in a linear
Beauxman
in
Advanced Prostate Cancer
5 years ago
Mother has Giant Cell Arteritis - what does the future hold?
Having just been through a week of hospital after my mother has lost most her sight in one eye and is being treated for Giant Cell Arteritis - can anyone who has been through this tell me how the years play out after diagnosis? At the moment she’s terrified. Thank you zxxx
Having just been through a week of hospital after my mother has lost most her sight in one eye and is being treated for Giant Cell Arteritis - can anyone who has been through this tell me how the years play out after diagnosis? At the moment she’s terrified. Thank you zxxx
TheSmartestGiant70
in
PMRGCAuk
5 years ago
CT scan results after 3 cycles BR
Hello all, My dad (12 trisomy and unmutated) has finished his 3rd BR cycle. The CT scan shows a reduction of the lymph nodes by 50%-60% (the biggest lymph node was 15 cm in his belly). The hematologist was happy with the results. What do you guys think about the results? We have 3 rounds left, is complete
Hello all, My dad (12 trisomy and unmutated) has finished his 3rd BR cycle. The CT scan shows a reduction of the lymph nodes by 50%-60% (the biggest lymph node was 15 cm in his belly). The hematologist was happy with the results. What do you guys think about the results? We have 3 rounds left, is complete
TOFK
in
CLL Support
5 years ago
Marginal zone lymphoma Facebook support group
https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the members on this site who have been diagnosed with a combo of CLL and mzl or mzl. This is a rarer lymphoma with much less research done so it is
https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the members on this site who have been diagnosed with a combo of CLL and mzl or mzl. This is a rarer lymphoma with much less research done so it is
Judyanne
in
CLL Support
5 years ago
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