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Cutaneous T cell lymphoma (CTCL)
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LLS.ORG (USA) WHAT ARE YOUR TOP PRIORITIES FOR 2023?
Dear Advocate, Whether it’s making sure every patient can afford health insurance that works for them or advancing better treatments, LLS is committed to working tirelessly to advance policies that serve the needs of blood cancer patients and their families. In 2023 we will continue to work closely
Dear Advocate, Whether it’s making sure every patient can afford health insurance that works for them or advancing better treatments, LLS is committed to working tirelessly to advance policies that serve the needs of blood cancer patients and their families. In 2023 we will continue to work closely
lankisterguy
Volunteer
in
CLL Support
2 years ago
Tapering with new issues ongoing
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
arvine
in
PMRGCAuk
1 year ago
Tapering while new issues
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
arvine
in
Pain Concern
1 year ago
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Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL Support
1 year ago
Hot flashes?
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Merryfield
in
PMRGCAuk
1 year ago
Can you 'demand' Tocilizumab for GCA?
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
tweety_pie
in
PMRGCAuk
1 year ago
What is the difference between these two tests?
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Tigerlilly81
in
Pernicious Anaemia Society
1 year ago
Tocilizumab
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
BlueMozart
in
PMRGCAuk
1 year ago
Bone Marrow Transplant
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
sicklecellnews
in
Sickle Cell Society
1 year ago
Cancer link to nuclear base
It seems that the US Space Force as found that "The disproportionate number of missileers presenting with cancer; specifically lymphoma" is concerning. "There are indications of a possible association between cancer and missile combat crew service at Malmstrom." 9 military officers, Missileers, who
It seems that the US Space Force as found that "The disproportionate number of missileers presenting with cancer; specifically lymphoma" is concerning. "There are indications of a possible association between cancer and missile combat crew service at Malmstrom." 9 military officers, Missileers, who
SERVrider
in
CLL Support
2 years ago
Acetaminophen and Immunotherapy
Has anyone else heard of this? Does is have any bearing on CLL patients on BTK inhibitors? https://www.facebook.com/25998443394/posts/pfbid0k2eaDZbPHsL5FWcJPiaDWK12U2Ur8J5ADucKQVnSAxttczAcaijW9RxArTaM8cTHl/?mibextid=r5uJeJ
Has anyone else heard of this? Does is have any bearing on CLL patients on BTK inhibitors? https://www.facebook.com/25998443394/posts/pfbid0k2eaDZbPHsL5FWcJPiaDWK12U2Ur8J5ADucKQVnSAxttczAcaijW9RxArTaM8cTHl/?mibextid=r5uJeJ
210savannah
in
CLL Support
2 years ago
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia Support
1 year ago
Lymphoma & CLL Highlights Virtual Workshop Jan 19, 2023 03:00 PM in London
Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop Time Jan 19, 2023 03:00 PM in London 10:00–13:00 EST/ 15:00–18:00 GMT/ 16:00–19:00 CET The Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop will feature a series of short presentations on lymphoma and chronic lymphocytic leukemia (CLL
Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop Time Jan 19, 2023 03:00 PM in London 10:00–13:00 EST/ 15:00–18:00 GMT/ 16:00–19:00 CET The Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop will feature a series of short presentations on lymphoma and chronic lymphocytic leukemia (CLL
lankisterguy
Volunteer
in
CLL Support
2 years ago
ASH 2022 | Key highlights in CLL: clinical trial updates combination therapies novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022
ASH 2022 | Key highlights in CLL: clinical trial updates & the role of combination therapies and novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022 https://www.vjhemonc.com/video/m1hovnhu05w-key-highlights-in-cll-clinical-trial-updates-the-role-of-combination-therapies-and-novel-btkis/ https
ASH 2022 | Key highlights in CLL: clinical trial updates & the role of combination therapies and novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022 https://www.vjhemonc.com/video/m1hovnhu05w-key-highlights-in-cll-clinical-trial-updates-the-role-of-combination-therapies-and-novel-btkis/ https
lankisterguy
Volunteer
in
CLL Support
2 years ago
Low MCHC
Hello all. I have a new aspect of my cbc report that has just become Low. It is MCHC. Normal is 31.0 gm/dL to 36.5. I am now 30.7. I would love comments from any others who have had low MCHC. Did you eventually need oxygen. Did they start treatment due to this? How low can it go before you physically
Hello all. I have a new aspect of my cbc report that has just become Low. It is MCHC. Normal is 31.0 gm/dL to 36.5. I am now 30.7. I would love comments from any others who have had low MCHC. Did you eventually need oxygen. Did they start treatment due to this? How low can it go before you physically
davidgrush
in
CLL Support
2 years ago
ALC is still going up
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Moonmyst
in
CLL Support
2 years ago
Update on my previous post trapped nerve and PMR.
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
Washingup
in
PMRGCAuk
1 year ago
CLL Staging
Hello. My husband, Simon, was diagnosed with CLL several years ago and has been closely monitored. On his last visit to his consultant he was told that he needs to start treatment. Either Rituximab or Venetoclax. My husband is always dismissive of his condition and does not want to discuss with me
Hello. My husband, Simon, was diagnosed with CLL several years ago and has been closely monitored. On his last visit to his consultant he was told that he needs to start treatment. Either Rituximab or Venetoclax. My husband is always dismissive of his condition and does not want to discuss with me
Rocky0181
in
CLL Support
2 years ago
FDA Approves Cell Therapy for Patients with Blood Cancers to Reduce Risk of Infection Following Stem Cell Transplantation- Released 4/17/23
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
Today [4/17/23], the U.S. Food and Drug Administration approved Omisirge (omidubicel-onlv), a substantially modified allogeneic (donor) cord blood-based cell therapy to quicken the recovery of neutrophils (a subset of white blood cells) in the body and reduce the risk of infection. The product is intended
PhysAssist
in
MPN Voice
1 year ago
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