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New diagnosis
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
davjb15121
in
CLL Support
1 year ago
Switching Drs
In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. 😢 I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed
In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. 😢 I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed
K-itty
in
MPN Voice
9 months ago
The current status and challenges of CAR-T therapy in CLL
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
Jm954
Administrator
in
CLL Support
1 year ago
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Fatigue issues taking Eltroxin combined with Hydroxy for ET
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Norma1831
in
MPN Voice
9 months ago
HCT Jumped 3%.
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
russkatt
in
MPN Voice
9 months ago
Relapsed CLL: New Approaches Prolong Survival
Dr Furman says that genetically unstable CLL patients need a combination therapy approach to treatment irrespective of MRD assessment results. This is only a short read and Dr Furman's opinion is always worth taking note of. In case it’s behind a paywall, here is the article in full. Credit to
Dr Furman says that genetically unstable CLL patients need a combination therapy approach to treatment irrespective of MRD assessment results. This is only a short read and Dr Furman's opinion is always worth taking note of. In case it’s behind a paywall, here is the article in full. Credit to
Jm954
Administrator
in
CLL Support
1 year ago
Expression of TCL1A gene is found to drive onset of blood cancer
[i]One of the causes of blood cancer is non-inherited mutations in blood stem cells that can lead to the cancerous growth of abnormal cells. Reporting in Nature, scientists now suggest that targeting a gene called TCL1A may be able to suppress such growth and decrease the risk of blood cancer....[/i]
[i]One of the causes of blood cancer is non-inherited mutations in blood stem cells that can lead to the cancerous growth of abnormal cells. Reporting in Nature, scientists now suggest that targeting a gene called TCL1A may be able to suppress such growth and decrease the risk of blood cancer....[/i]
bennevisplace
in
CLL Support
1 year ago
Vasculitis in the pancreas?
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Sandalsforever
in
Vasculitis UK
3 days ago
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Yanico
in
MPN Voice
9 months ago
Changing Medication
Hi I’m just looking for some advice on Targinact and just Oxycodone please. My neurologist wrote to my GP requesting that I be prescribed Targinact 10mg at night and 5mg mornings increasing if necessary by 5mg increments to maximum of 20mg twice a day, also changing the Venlafaxine I take to either
Hi I’m just looking for some advice on Targinact and just Oxycodone please. My neurologist wrote to my GP requesting that I be prescribed Targinact 10mg at night and 5mg mornings increasing if necessary by 5mg increments to maximum of 20mg twice a day, also changing the Venlafaxine I take to either
Felixstowe
in
Restless Legs Syndrome
1 month ago
New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
Manouche
in
MPN Voice
9 months ago
Have I progressed to PV?
Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood work ordered by my GP and the results showed an almost 200 thousand increase in platelets since May from 629 to 805. I messaged my MPN specialist
Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood work ordered by my GP and the results showed an almost 200 thousand increase in platelets since May from 629 to 805. I messaged my MPN specialist
mbr8076
in
MPN Voice
9 months ago
Spotlight on CLL - Nicole Lamanna, MD Wednesday May 24, 2023 1:00 PM to 2:30 PM EDT- sponsored by LLS- USA but open to all
Unlike other webinars I have posted recently, this should be easy to understand, especially for newly diagnosed and those not familiar with Med-Speak. Dr. Lamanna has a track record of explaining CLL and side effects, with a simple, caring & warm style. - Len - Nicole Lamanna, MD Director, Chronic
Unlike other webinars I have posted recently, this should be easy to understand, especially for newly diagnosed and those not familiar with Med-Speak. Dr. Lamanna has a track record of explaining CLL and side effects, with a simple, caring & warm style. - Len - Nicole Lamanna, MD Director, Chronic
lankisterguy
Volunteer
in
CLL Support
1 year ago
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Open Registration April 27 12:00-1:00PM ET
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Live Simulcast | Register now for this interactive CME/CE/CPE-certified workshop to gain expert insight on current best practices and emerging strategies for advances in chronic lymphocytic leukemia
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Live Simulcast | Register now for this interactive CME/CE/CPE-certified workshop to gain expert insight on current best practices and emerging strategies for advances in chronic lymphocytic leukemia
lankisterguy
Volunteer
in
CLL Support
1 year ago
B LARGE CELL DIFFUSE LYMPHOMA AFTER 5 YEAR OF POST KIDNEY TRANSPLANT
I got my kidney transplant in dec 2018 now In nov 2024 suffered from NON hodgkin lymphoma now only on tacrolimus 5mg daily .Any advice regarding this then plz
I got my kidney transplant in dec 2018 now In nov 2024 suffered from NON hodgkin lymphoma now only on tacrolimus 5mg daily .Any advice regarding this then plz
bal_123
in
Kidney Transplant Patient Support
2 months ago
My chemo experience
I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments
I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments
kiwiCanuck
in
CLL Support
1 year ago
My Ckd journey
Hi my name is Dineshwaran.i was diagnosed with kidney failure in year 2003 when I was 19.was on dialysis for two years and did transplant on 2005. Donated by my cousin.it was a perfect match until 2017 where my sugar level was very high. Was on all type of medication and insulin but didn't came down
Hi my name is Dineshwaran.i was diagnosed with kidney failure in year 2003 when I was 19.was on dialysis for two years and did transplant on 2005. Donated by my cousin.it was a perfect match until 2017 where my sugar level was very high. Was on all type of medication and insulin but didn't came down
Dineshwaran
in
Kidney Dialysis
2 months ago
looking for a neurologist
Can anyone recommend a neurologist knowledgeable in RLS in the Bristol/ Bath (England) area ? I currently have a neurologist whom I rate quite highly but who cannot prescribe opioids as they are not on the formulary of the hospital where she practises. She has however asked my GP to prescribe Oxycodone
Can anyone recommend a neurologist knowledgeable in RLS in the Bristol/ Bath (England) area ? I currently have a neurologist whom I rate quite highly but who cannot prescribe opioids as they are not on the formulary of the hospital where she practises. She has however asked my GP to prescribe Oxycodone
etchea33
in
Restless Legs Syndrome
3 months ago
New and Emerging Treatments for Newly Diagnosed and R/R CLL/SLL: Targeted Inhibitors - Dr. Susan O'Brien
This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended for medical professionals and uses moderate "Med-Speak." So only recommended for those accustomed to the medical language. But if you can follow
This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended for medical professionals and uses moderate "Med-Speak." So only recommended for those accustomed to the medical language. But if you can follow
lankisterguy
Volunteer
in
CLL Support
1 year ago
PMR and brachial neuritis
It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different
It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different
dmart7
in
PMRGCAuk
3 months ago
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