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Mast cell leukaemia
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Jaw spasm & neck muscle problems?
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
AnnW22
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Biotin as a boost for hair thinninh
I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?
I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?
caroline_284
in
MPN Voice
3 years ago
Sudden Lymph Node Enlargement
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
StrengthHopeLove
in
CLL Support
2 years ago
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Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
EPguy
in
MPN Voice
3 years ago
Information on Acute Myeloid Leukaemia
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
Mysi
in
MPN Voice
3 years ago
Antibody test update. Good News!
I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say in what percentage but I am relieved to know I have some protection as I was sure it would be negative. I was notified by email and text very
I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say in what percentage but I am relieved to know I have some protection as I was sure it would be negative. I was notified by email and text very
azaelea
in
MPN Voice
3 years ago
Webinar 3.30pm 12th November - CAR-T therapy update
Today 3.30pm - free spaces available Want to learn more about the current UK status of CAR-T therapy? Join our webinar where our expert panel will explain how the therapy works, what is involved and how it is used to treat leukaemia. You can register here: https://t.co/0C0mu1r3Ds?amp=1 We will be joined
Today 3.30pm - free spaces available Want to learn more about the current UK status of CAR-T therapy? Join our webinar where our expert panel will explain how the therapy works, what is involved and how it is used to treat leukaemia. You can register here: https://t.co/0C0mu1r3Ds?amp=1 We will be joined
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
SCT risks
My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that
My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that
Otterfield
in
MPN Voice
3 years ago
Treating autoimmune hemolytic anemia (AIHA)
Does anyone have autoimmune hemolytic anemia (AIHA) along with your chronic lymphocytic leukemia (CLL). I believe it occurs for around 10% of CLL patients. Any experience or knowledge about it would help. My Haptoglobin has gone from 39 in September to 14 this past week. As I understand it, when it
Does anyone have autoimmune hemolytic anemia (AIHA) along with your chronic lymphocytic leukemia (CLL). I believe it occurs for around 10% of CLL patients. Any experience or knowledge about it would help. My Haptoglobin has gone from 39 in September to 14 this past week. As I understand it, when it
SantaZia
in
CLL Support
3 years ago
Two things. White blood count creeping up. And waiting for results from spike protein test.
I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from
I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from
elm1
in
CLL Support
3 years ago
Rituxan
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
mkuhlman
in
CLL Support
3 years ago
UK Webinar - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends you may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here: https://us02web.zoom.us
Hi friends you may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here: https://us02web.zoom.us
HAIRBEAR_UK
Founder Admin
in
CLL Support
3 years ago
Antibody test, optimal timing
hi from Poland I have been on Zanubrutinib (small molecule inhibitor of Bruton's tyrosine kinase) for three years. I had a moderna booster two weeks ago. I wonder after how long to do the antibody test. I called 5 different labs and they suggested doing a blood test over a period of two weeks to six
hi from Poland I have been on Zanubrutinib (small molecule inhibitor of Bruton's tyrosine kinase) for three years. I had a moderna booster two weeks ago. I wonder after how long to do the antibody test. I called 5 different labs and they suggested doing a blood test over a period of two weeks to six
BART4
in
CLL Support
3 years ago
Abstract in regard to P-LL as a diagnosis entity is an interesting read and proposal
While there is no definitive decision, there is clinically-based validity to the suggestion. We have a few members who are diagnosed P-LL (P-LL is rarer than CLL, so numbers are few) who can relate to this as they are being treated much the same as we with CLL. https://mdanderson.elsevierpure.com
While there is no definitive decision, there is clinically-based validity to the suggestion. We have a few members who are diagnosed P-LL (P-LL is rarer than CLL, so numbers are few) who can relate to this as they are being treated much the same as we with CLL. https://mdanderson.elsevierpure.com
cllady01
Volunteer
in
CLL Support
3 years ago
Curious -- family leukemia history anyone?
I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications
I recall reading early on that CLL was thought to be possibly genetic, with 20 years younger in succeeding generations. I have two sons. I was diagnosed at 70. Ironically or not, one of my 4 uncles got leukemia around 90 (couldn't find out what kind), so I've wanted to follow the genetic implications
Vlaminck
in
CLL Support
3 years ago
APS and Lymphoma. Newly diagnosed, need advice
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Piscesdreamer
in
Hughes Syndrome APS Forum
3 years ago
Is strength training helpful?
Hi Everyone, I have just joined and also recently diagnosed with cll. I have learned that diet and exercise is very helpful with controlling cll. I just wondered if strength/weight training was also helpful? Thanks
Hi Everyone, I have just joined and also recently diagnosed with cll. I have learned that diet and exercise is very helpful with controlling cll. I just wondered if strength/weight training was also helpful? Thanks
arsenal0
in
CLL Support
3 years ago
Great Antibodies after 3rd Primary Dose of Pfizer
Hi, I was diagnosed with CLL in September 2019 and am on watch and wait. Six weeks after my second Astra Zeneca vaccination I took a Covid Antibody test from Testing For All and my result was 106.00 U/ml. Today I got my result 6 weeks following my third Primary Dose of Pfizer. I am extremely happy
Hi, I was diagnosed with CLL in September 2019 and am on watch and wait. Six weeks after my second Astra Zeneca vaccination I took a Covid Antibody test from Testing For All and my result was 106.00 U/ml. Today I got my result 6 weeks following my third Primary Dose of Pfizer. I am extremely happy
1Surfer9
in
CLL Support
3 years ago
Vaccine third dose experience!
Hi I’m a regular visitor here but I think this my first post! I have essential thrombocythaemia and am a patient of Haematology at Bedford Hospital (who I must say are excellent). However, I thought people might be interested in my experience of trying to obtain a third COVID-19 vaccine dose. I received
Hi I’m a regular visitor here but I think this my first post! I have essential thrombocythaemia and am a patient of Haematology at Bedford Hospital (who I must say are excellent). However, I thought people might be interested in my experience of trying to obtain a third COVID-19 vaccine dose. I received
Maythyme
in
MPN Voice
3 years ago
Ironman 70.3 Waco Triathlon with CLL/SLL
Hi all! Raced in Ironman 70.3 Waco yesterday! My 2nd half since being diagnosed with CLL/SLL in 2011. I turn 50 in January. You don’t need to do an Ironman, but you do need to MOVE! *And, walking absolutely counts as exercise! Take your time, listen to your body & do what’s fun (for you)! Almost no
Hi all! Raced in Ironman 70.3 Waco yesterday! My 2nd half since being diagnosed with CLL/SLL in 2011. I turn 50 in January. You don’t need to do an Ironman, but you do need to MOVE! *And, walking absolutely counts as exercise! Take your time, listen to your body & do what’s fun (for you)! Almost no
BJollie
in
CLL Support
3 years ago
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