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Are they faking this serious illness?
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
Justwantanswers
in
Leukaemia Support
5 years ago
CLL Transformation - Richter's?
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
SarasotaPaul
in
CLL Support
5 years ago
MDS UK Patient Support (pinned post)
Approx. 20% of Sweet's syndrome (SS) patients develop their condition secondary to cancer, the commonest being a group of blood disorders called myelodysplastic syndromes (MDS) and acute myeloid
leukaemia
(MDS can progress to AML).
Approx. 20% of Sweet's syndrome (SS) patients develop their condition secondary to cancer, the commonest being a group of blood disorders called myelodysplastic syndromes (MDS) and acute myeloid
leukaemia
(MDS can progress to AML).
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
5 years ago
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iWCLL Guidelines for the diagnosis, management and treatment of CLL - a brief history and the changes in last year's long awaited update
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
AussieNeil
Partner
in
CLL Support
5 years ago
Accelerated Dental Decay
Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a direct effect of the chemo; a side effect or the result of a compromised immune system?
Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a direct effect of the chemo; a side effect or the result of a compromised immune system?
MaitreD
in
CLL Support
5 years ago
New meds for Myelofibrosis
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Cja1956
in
MPN Voice
5 years ago
Now PCV go's Beyond limit
Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9 months i will have phlebotomy Anyone has secondary polycythemia and do phlebotomy after so long period??
Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9 months i will have phlebotomy Anyone has secondary polycythemia and do phlebotomy after so long period??
Vigiindia
in
MPN Voice
5 years ago
Troponin levels elevated
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. I suffer from high blood pressure.
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. I suffer from high blood pressure.
Jalola
in
British Heart Foundation
5 years ago
14 months on and it’s going great
As part of a Spot
Leukaemia
month,
Leukaemia
Care are running some patient stories. I’m pleased to say that mine was published and has also been used on local radio and local press.
As part of a Spot
Leukaemia
month,
Leukaemia
Care are running some patient stories. I’m pleased to say that mine was published and has also been used on local radio and local press.
KAS8
in
CLL Support
5 years ago
A brief explanation of Sweet's syndrome triggers (pinned post)
- Cancer (approx. 20%), mainly myelodysplastic syndromes and acute myeloid
leukaemia
. - Inflammatory bowel disease - Crohn's disease and ulcerative colitis. - Autoimmune disease, e.g. rheumatoid arthritis or systemic lupus erythematosus. - Medication (12%).
- Cancer (approx. 20%), mainly myelodysplastic syndromes and acute myeloid
leukaemia
. - Inflammatory bowel disease - Crohn's disease and ulcerative colitis. - Autoimmune disease, e.g. rheumatoid arthritis or systemic lupus erythematosus. - Medication (12%).
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
5 years ago
My exposure to Ethylene Oxide.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
Bogi1
in
CLL Support
5 years ago
PV
Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have
Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have
MamPRV
in
MPN Voice
5 years ago
Newly diagnosed too, stage 0
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
patilin
in
CLL Support
5 years ago
Richter Transformation possible?
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
writepa
in
CLL Support
5 years ago
Dr. Siddiqi on Rationale for the TRANSCEND CAR-T CLL 004 Trial in CLL/SLL
[i]Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology & Hematopoietic Cell Transplantation, and a hematologist/oncologist at City of Hope, discusses the rationale for the phase I/II TRANSCEND CLL 004
[i]Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology & Hematopoietic Cell Transplantation, and a hematologist/oncologist at City of Hope, discusses the rationale for the phase I/II TRANSCEND CLL 004
AussieNeil
Partner
in
CLL Support
5 years ago
Leukaemia Care selected as Telegraph charity for Christmas appeal. Article 'I've become best friends with the woman who saved my life'
https://youtu.be/zBrhezXxfSM Read Nickey and Anette's story https://www.telegraph.co.uk/christmas/0/become-best-friends-woman-saved-life/?WT.mc_id=tmgoff_hootsuite&utm_source=tmgoff_socialteam&utm_medium=twitter&utm_content=edd29791-5f21-45f4-b70f-6d712c9f9e37&utm_campaign=telegraph Snip: '[i] It’s
https://youtu.be/zBrhezXxfSM Read Nickey and Anette's story https://www.telegraph.co.uk/christmas/0/become-best-friends-woman-saved-life/?WT.mc_id=tmgoff_hootsuite&utm_source=tmgoff_socialteam&utm_medium=twitter&utm_content=edd29791-5f21-45f4-b70f-6d712c9f9e37&utm_campaign=telegraph Snip: '[i] It’s
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
Why do some health professional behave in a nasty manner?
but also with Chronic kidney disease grade 4, as well as chronic lymphacytic
leukaemia
, and osteoearthritis of the spine, hands and feet, and high blood pressure.
but also with Chronic kidney disease grade 4, as well as chronic lymphacytic
leukaemia
, and osteoearthritis of the spine, hands and feet, and high blood pressure.
sandyandtweed
in
Kidney Disease
5 years ago
Starting Treatment
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
12Caine12
in
CLL Support
5 years ago
Painful toes
Hi, I have recently been diagnosed with cml, not seen a specialist yet though it’s been 6 weeks since diagnosis via my hiv specialist who has been keeping a very close eye on my blood tests and had a Leukemia test done middle of August (October now). I have so many questions that I know can’t be answered
Hi, I have recently been diagnosed with cml, not seen a specialist yet though it’s been 6 weeks since diagnosis via my hiv specialist who has been keeping a very close eye on my blood tests and had a Leukemia test done middle of August (October now). I have so many questions that I know can’t be answered
Scream-N-kick
in
Leukaemia Support
5 years ago
MD Anderson/Mayo or Peter MacCallum for treatment?
Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification
Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification
writepa
in
CLL Support
5 years ago
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