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If you want to learn about CLL text or video
The following is a long list of links and resources, too many to read and understand without dedicated effort. So please treat it like a smorgasbord buffet or a large box of chocolates- choose some that look good and try a sample. If the sample is satisfying go back for more, if not move on to others
The following is a long list of links and resources, too many to read and understand without dedicated effort. So please treat it like a smorgasbord buffet or a large box of chocolates- choose some that look good and try a sample. If the sample is satisfying go back for more, if not move on to others
lankisterguy
Volunteer
in
CLL Support
4 years ago
Richter syndrome. Ganglion below the neck
Hello friends A month ago I wrote, because a small node had grown out from under my jaw. I did an ultrasound and they found a 4X3 millimeter node. Do not call my hematologist because I have a consultation in two weeks. I took antibiotics and I have not left. I had fungus in my mouth that I'm treating
Hello friends A month ago I wrote, because a small node had grown out from under my jaw. I did an ultrasound and they found a 4X3 millimeter node. Do not call my hematologist because I have a consultation in two weeks. I took antibiotics and I have not left. I had fungus in my mouth that I'm treating
Priss69
in
CLL Support
4 years ago
Advice and help please
Hi I was diagnosed 2 years ago with clear cell ovarian cancer and had 6 rounds of carbo taxol after a hysterectomy.I went to UCLH in london who discovered I did not have clear cell in March 2019 but germ cell yolk sac. I then needed more surgery and they found a new lesion that tested positive. Because
Hi I was diagnosed 2 years ago with clear cell ovarian cancer and had 6 rounds of carbo taxol after a hysterectomy.I went to UCLH in london who discovered I did not have clear cell in March 2019 but germ cell yolk sac. I then needed more surgery and they found a new lesion that tested positive. Because
NIKKibailie
in
My Ovacome
4 years ago
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Guidance on social distancing for everyone in the UK and protecting older people and vulnerable adults - and THAT'S ALL OF US.
From the UK Gov website. "[i]There are some clinical conditions which put people at even higher risk of severe illness from COVID-19. If you are in this category, next week the NHS in England will directly contact you with advice the more stringent measures you should take in order to keep yourself and
From the UK Gov website. "[i]There are some clinical conditions which put people at even higher risk of severe illness from COVID-19. If you are in this category, next week the NHS in England will directly contact you with advice the more stringent measures you should take in order to keep yourself and
Jm954
Administrator
in
CLL Support
4 years ago
The impact of dose modification and temporary interruption of ibrutinib on outcomes of CLL patients in routine clinical practice
This paper in Cancer Medicine (18/03/2020) reports on a retrospective study of 209 consecutive CLL patients treated with Ibrutinib outside the context of a clinical trial at the Mayo Clinic. Results from the study show that among CLL patients treated outside the context of a clinical trial, approximately
This paper in Cancer Medicine (18/03/2020) reports on a retrospective study of 209 consecutive CLL patients treated with Ibrutinib outside the context of a clinical trial at the Mayo Clinic. Results from the study show that among CLL patients treated outside the context of a clinical trial, approximately
Jm954
Administrator
in
CLL Support
4 years ago
ACCEPTED INTO LOXO-305 CLINICAL TRIAL
LOXO-305 TRIAL UPDATE TWO MONTHS IN Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18
LOXO-305 TRIAL UPDATE TWO MONTHS IN Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18
steve5441
in
CLL Support
4 years ago
Coronavirus and returning back to work
I have Hairy Cell Leukaemia and have been recovering from chemotherapy treatment since 18th January. Apart from the fatigue i’ve been contemplating returning back to work, however i work in a busy office environment and am confused with the information i’m reading. Bloodwise now state anybody with blood
I have Hairy Cell Leukaemia and have been recovering from chemotherapy treatment since 18th January. Apart from the fatigue i’ve been contemplating returning back to work, however i work in a busy office environment and am confused with the information i’m reading. Bloodwise now state anybody with blood
TM1972
in
Leukaemia Support
4 years ago
Social Distancing
This is an extract from the UK Government's Coronavirus website detailing who will have to take more stringent social distancing measures; 'People with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment' This seems to suggest that all of us MPN patients will fall
This is an extract from the UK Government's Coronavirus website detailing who will have to take more stringent social distancing measures; 'People with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment' This seems to suggest that all of us MPN patients will fall
Trueblue8
in
MPN Voice
4 years ago
ET
I am worried i may have leukaemia and not et as symptoms are similar, but it is only my platelets that are raised other bloods seem ok .
I am worried i may have leukaemia and not et as symptoms are similar, but it is only my platelets that are raised other bloods seem ok .
glyndale
in
MPN Voice
4 years ago
CLL/SLL and bone pain was in both arms
Hello and hope everyone is doing well amongst this pandemic. I recently underwent a bone marrow biopsy. My doctor who is Dept Chair for LIVESTRONG with UT Mefical School Austin stated my cancer is Stage 0. Yeah! I do have questions regarding ongoing bone pain. He stated that he didn’t feel it was related
Hello and hope everyone is doing well amongst this pandemic. I recently underwent a bone marrow biopsy. My doctor who is Dept Chair for LIVESTRONG with UT Mefical School Austin stated my cancer is Stage 0. Yeah! I do have questions regarding ongoing bone pain. He stated that he didn’t feel it was related
annetxfan
in
CLL Support
4 years ago
CAR-NK Cells Make Their Debut in Hematologic Cancers with Promising results
In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen receptor-NK (CAR-NK) cells. Seven of the patients experienced complete remission, while in 1 other patient, treatment reduced the aggressiveness
In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen receptor-NK (CAR-NK) cells. Seven of the patients experienced complete remission, while in 1 other patient, treatment reduced the aggressiveness
Jm954
Administrator
in
CLL Support
4 years ago
Just a quick question
Hello all. I’m asking this on behalf of my mum. She has Alzheimer’s and around 10 years ago she was diagnosed with CLL, up till now she hasn’t had to have any treatment for her CLL. We are in the U.K. We are being told that if you fall under the very vulnerable group you must stay in isolation for 12
Hello all. I’m asking this on behalf of my mum. She has Alzheimer’s and around 10 years ago she was diagnosed with CLL, up till now she hasn’t had to have any treatment for her CLL. We are in the U.K. We are being told that if you fall under the very vulnerable group you must stay in isolation for 12
rustydog
in
CLL Support
4 years ago
New Study: Predicted Survival in Polycythemia Vera Patients
Anyone have any of these three mutations tested for? -- This study evaluated the impact of co-occurring mutations and clinical characteristics on prognosis in 85 patients with WHO-defined polycythemia vera (PV). Overall, 84 patients harbored a JAK2 V617F mutation. An additional mutation was identified
Anyone have any of these three mutations tested for? -- This study evaluated the impact of co-occurring mutations and clinical characteristics on prognosis in 85 patients with WHO-defined polycythemia vera (PV). Overall, 84 patients harbored a JAK2 V617F mutation. An additional mutation was identified
JT_Marlin
in
MPN Voice
4 years ago
Impaired Immune System???
Diagnosed CLL a little less than 2 years ago, stage 0. I have no symptoms other than my blood work and slightly anemic. So my question is, does the CLL automatically make me at risk for "impaired immune system"? I keep seeing information about COVID-19 and people with impaired immune systems.
Diagnosed CLL a little less than 2 years ago, stage 0. I have no symptoms other than my blood work and slightly anemic. So my question is, does the CLL automatically make me at risk for "impaired immune system"? I keep seeing information about COVID-19 and people with impaired immune systems.
Faith50
in
CLL Support
4 years ago
Richter's Syndrome - Possible relapse
Hello friends. I noticed a lump under the right jaw the size of an olive. Start noticing it two weeks ago. It is hard and painful to the touch. My neck hurts and I feel that I have fallen asleep. My family doctor sent me an antibiotic in case it was an infection. As you know, I have Ricthert and they
Hello friends. I noticed a lump under the right jaw the size of an olive. Start noticing it two weeks ago. It is hard and painful to the touch. My neck hurts and I feel that I have fallen asleep. My family doctor sent me an antibiotic in case it was an infection. As you know, I have Ricthert and they
Priss69
in
CLL Support
4 years ago
Blood test or Not?
Blood test or Not??? Due for another blood work up in the next week already have contacted Dr waiting for response! I’ve been on imbrutinib 420mg 1x daily for 11 months and wbc is down to 11,400 feeling great but truly concerned about contracting covid 19 @ the local quest office. I’m a very hard stick
Blood test or Not??? Due for another blood work up in the next week already have contacted Dr waiting for response! I’ve been on imbrutinib 420mg 1x daily for 11 months and wbc is down to 11,400 feeling great but truly concerned about contracting covid 19 @ the local quest office. I’m a very hard stick
haposwald
in
CLL Support
4 years ago
Which fish have the best Vitamin D to Mercury Ratio?
About half of the world's population is deficient in Vitamin D, and fish and sun (without sunscreen) are the best natural sources. So if you don't get much sun, you might want to regularly eat fish because Vitamin D deficiencies have been correlated with at least one kind of cancer and with other health
About half of the world's population is deficient in Vitamin D, and fish and sun (without sunscreen) are the best natural sources. So if you don't get much sun, you might want to regularly eat fish because Vitamin D deficiencies have been correlated with at least one kind of cancer and with other health
HowardR
in
CLL Support
4 years ago
Sickle cell and endometriosis
Hi, I have been recently diagnosed with endometriosis and I have been slightly worried.... is there anyone in here that has sickle cell and endometriosis.... I have sickle cell trait from both of my parents. Thank you in advance for your answers and time.
Hi, I have been recently diagnosed with endometriosis and I have been slightly worried.... is there anyone in here that has sickle cell and endometriosis.... I have sickle cell trait from both of my parents. Thank you in advance for your answers and time.
Gabyp
in
Sickle Cell Society
4 years ago
A HUGE THANK YOU 🤗 TO ALL !!! ADMINISTRATION, DOCTORS AND ALIKE. THANK YOU TO ALL OUR WONDERFUL CLL COMMUNITY🤗❤!!!
Thank You!!! For keeping myself informed, as to the latest information, and research with this devastating Corona Virus!😷. Aside from TV, Radio, Newspaper !!! The CLL Support Community is " The Bomb" 😇 as they say.!!! Unfortunately, I had to inform my two clients( an elderly lady with Lymphedema and
Thank You!!! For keeping myself informed, as to the latest information, and research with this devastating Corona Virus!😷. Aside from TV, Radio, Newspaper !!! The CLL Support Community is " The Bomb" 😇 as they say.!!! Unfortunately, I had to inform my two clients( an elderly lady with Lymphedema and
debdetermine58
in
CLL Support
4 years ago
walter49
I was diagnosed with CLL in 2013 and have been on W &W since then, with no intervention. I have half-yearly blood checks and my blood results have, apart from a blip a couple of years ago when I had a bone marrow specimen taken, been, according to my consultant, nearly as good as ‘a normal’ person’s
I was diagnosed with CLL in 2013 and have been on W &W since then, with no intervention. I have half-yearly blood checks and my blood results have, apart from a blip a couple of years ago when I had a bone marrow specimen taken, been, according to my consultant, nearly as good as ‘a normal’ person’s
Walter49
in
CLL Support
4 years ago
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