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Tisomy 12
Dx 203 CLL in Feb 2013,male, living in India, watch and wait till last week. I am Ighv mutated and no Zap 70 and CD 38. My Fish test revealed no genetic deletion Like 17p, 13q, 11q. Due to gradual fall of Hb to 8 and lymphocytes around 100k, I was advised B R chemo immunotherapy and stated on November
Dx 203 CLL in Feb 2013,male, living in India, watch and wait till last week. I am Ighv mutated and no Zap 70 and CD 38. My Fish test revealed no genetic deletion Like 17p, 13q, 11q. Due to gradual fall of Hb to 8 and lymphocytes around 100k, I was advised B R chemo immunotherapy and stated on November
venk_46
in
CLL Support
5 years ago
Wife just diagnosed with CLL too!
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
Walt424
in
CLL Support
5 years ago
CAR-T Cell expert Dr. Utkarsh Acharya online; CAR-T Patient Dr. Brian Koffman at CLL Society Support Meetings- Philadelphia & New York City
This week there are several opportunities to learn more about CAR-T http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=8ae5639f-9cb3-476f-8278-85bec8eb87ec - Online we hear again from Dr. Utkarsh Acharya on his perspective of caring for CAR-T patients including our own Dr. Koffman. https
This week there are several opportunities to learn more about CAR-T http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=8ae5639f-9cb3-476f-8278-85bec8eb87ec - Online we hear again from Dr. Utkarsh Acharya on his perspective of caring for CAR-T patients including our own Dr. Koffman. https
lankisterguy
Volunteer
in
CLL Support
5 years ago
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Platelets transfusion every 10 days. Black or red dots on your skin. Mostly hands and legs. Stool looks like tar when your platelets count gets less than 5. Please reply
Platelets transfusion every 10 days. Black or red dots on your skin. Mostly hands and legs. Stool looks like tar when your platelets count gets less than 5. Please reply
cier04
in
ITP Support Association
5 years ago
Does anyone else have another blood cancer as well as an MPN?
Hi. I’m now nearly two years post diagnosis with MF, and I also have CLL. Chronic lymph.. leukemia ( can never remember, spell or pronounce the L in the middle) CLL to its friends. That means that I get excluded from clinical trials, which is a big downside. I wondered how many other people who use
Hi. I’m now nearly two years post diagnosis with MF, and I also have CLL. Chronic lymph.. leukemia ( can never remember, spell or pronounce the L in the middle) CLL to its friends. That means that I get excluded from clinical trials, which is a big downside. I wondered how many other people who use
Rachelthepotter
in
MPN Voice
5 years ago
fluoride for teeth when on hydroxyurea?
My dentist has recommended that I start using fluoride gel trays for my teeth to protect them while taking the hydroxyurea. Has anyone heard about this? I have Essential Thrombocythemia (high platelets) & as I understand it I will be taking the hydroxyurea for the rest of my life.
My dentist has recommended that I start using fluoride gel trays for my teeth to protect them while taking the hydroxyurea. Has anyone heard about this? I have Essential Thrombocythemia (high platelets) & as I understand it I will be taking the hydroxyurea for the rest of my life.
h2ogal
in
MPN Voice
5 years ago
I got soaked through in the rain today
Had to take one of my dogs to the vet for her yearly injections, not much fun she hates it and barks as soon as we get through the door! I am surprised they haven't asboed us! On the way back (1/2hour walk at least), it poured down, terribly so. I got drenched, hair, trousers everything. Got home towel
Had to take one of my dogs to the vet for her yearly injections, not much fun she hates it and barks as soon as we get through the door! I am surprised they haven't asboed us! On the way back (1/2hour walk at least), it poured down, terribly so. I got drenched, hair, trousers everything. Got home towel
Shancock
in
Lung Conditions Community Forum
5 years ago
Is Green Tea and Matcha powder same, similar?
Hello All, I've always experienced a benefit from simply drinking green. Over the course of my life, when I was a green tea drinker I had far fewer colds/sinus infections etc than those times when I was a coffee drinker. Anyway, as a W&W CLL person since 2015 I've been increasingly going alternative
Hello All, I've always experienced a benefit from simply drinking green. Over the course of my life, when I was a green tea drinker I had far fewer colds/sinus infections etc than those times when I was a coffee drinker. Anyway, as a W&W CLL person since 2015 I've been increasingly going alternative
jawdfs
in
CLL Support
5 years ago
OMG I graduated!!! 🏃♀️🎉🏅
I have recently ran a 6k fun run for
leukaemia
and got my first medal. That is the furthest I’ve ran so far and getting that medal was fantastic. Looking forward to entering more runs and getting more medals. Next goal 10K!
I have recently ran a 6k fun run for
leukaemia
and got my first medal. That is the furthest I’ve ran so far and getting that medal was fantastic. Looking forward to entering more runs and getting more medals. Next goal 10K!
jenmossparker
Graduate
in
Couch to 5K
5 years ago
Leukaemia Care Fatigue Day
I said I would report back on this Information Day in Sheffield - here goes! The speaker throughout the day was Dr Anne Johnson, a consultant occupational therapist at the Bath Centre for Fatigue and also a Research Fellow and lecturer at the university in Bristol. She was extremely knowledgeable about
I said I would report back on this Information Day in Sheffield - here goes! The speaker throughout the day was Dr Anne Johnson, a consultant occupational therapist at the Bath Centre for Fatigue and also a Research Fellow and lecturer at the university in Bristol. She was extremely knowledgeable about
Pauline43
in
MPN Voice
6 years ago
CLL is gone!!!!
After living with CLL for 5 years. We have decided to divorce after she MRDed negative on my blood and bone marrow. Yes, I just got the best news of my life. I'm free again :-) I am still shocked with the results. I am on the 2nd cohort of the Imbruvica/Venetoclax trial for treatment naive patients
After living with CLL for 5 years. We have decided to divorce after she MRDed negative on my blood and bone marrow. Yes, I just got the best news of my life. I'm free again :-) I am still shocked with the results. I am on the 2nd cohort of the Imbruvica/Venetoclax trial for treatment naive patients
lamboman
in
CLL Support
5 years ago
Cancer Care Education Workshops Online 1 hour free sessions
Cancer Care Education Workshops Online 1 hour free sessions https://www.cancercare.org/connect_workshops/tagged/chronic_lymphocytic_leukemia - Upcoming Workshops Managing Chronic Lymphocytic Leukemia and Its Complications Part I of Life with Chronic Lymphocytic Leukemia (CLL) https://www.cancercare.org
Cancer Care Education Workshops Online 1 hour free sessions https://www.cancercare.org/connect_workshops/tagged/chronic_lymphocytic_leukemia - Upcoming Workshops Managing Chronic Lymphocytic Leukemia and Its Complications Part I of Life with Chronic Lymphocytic Leukemia (CLL) https://www.cancercare.org
lankisterguy
Volunteer
in
CLL Support
5 years ago
Is Idiopathic Myelofibrosis cancer?
I’ve read a lot about this disease myelofibrosis which I’ve been diagnosed with but I’m unclear if the idiopathic before it changes the disease in any way. I can’t find a lot of information when I research “idiopathic myelofibrosis” and im wondering if it is considered cancer or not.
I’ve read a lot about this disease myelofibrosis which I’ve been diagnosed with but I’m unclear if the idiopathic before it changes the disease in any way. I can’t find a lot of information when I research “idiopathic myelofibrosis” and im wondering if it is considered cancer or not.
Actuallyclaire
in
MPN Voice
5 years ago
Cll specialists
I hear often the term of CLL specialist. I have to ask if such title exists, Md I have to ask, how does a hematologist become a “CLL Specialist”? I’ve lived with CLL for 10 years, doing fine so far with Ibrutinib. I get my CLL checks and care in Spain, from an experienced, knowledgeable and caring hematologist
I hear often the term of CLL specialist. I have to ask if such title exists, Md I have to ask, how does a hematologist become a “CLL Specialist”? I’ve lived with CLL for 10 years, doing fine so far with Ibrutinib. I get my CLL checks and care in Spain, from an experienced, knowledgeable and caring hematologist
EJM52545
in
CLL Support
5 years ago
Ibrutinib for a year... then obinutuzumab improves MRD- response rates
Ibrutinib and Obinutuzumab in CLL: Improved MRD Response Rates with Substantially Enhanced MRD Depletion for Patients with >1 Year Prior Ibrutinib Exposure https://ash.confex.com/ash/2018/webprogram/Paper112936.html Conclusions: The results suggest that the addition of obinutuzumab to ibrutinib may
Ibrutinib and Obinutuzumab in CLL: Improved MRD Response Rates with Substantially Enhanced MRD Depletion for Patients with >1 Year Prior Ibrutinib Exposure https://ash.confex.com/ash/2018/webprogram/Paper112936.html Conclusions: The results suggest that the addition of obinutuzumab to ibrutinib may
avzuclav
in
CLL Support
5 years ago
CBD oil
Has anyone with MF and on Ruxolitinib tried CBD oil? I have a good deal of pain in my back and haemo says to go to doctors to get some nerve pain pills which is not something I want to do as am enough of a zombie most of the time anyway! I packed the fags in when I was diagnosed and so vape instead.
Has anyone with MF and on Ruxolitinib tried CBD oil? I have a good deal of pain in my back and haemo says to go to doctors to get some nerve pain pills which is not something I want to do as am enough of a zombie most of the time anyway! I packed the fags in when I was diagnosed and so vape instead.
Graham7694
in
MPN Voice
5 years ago
Christmas Message 2018 from MPN Voice
Advocacy
–the MPN Advocates Network (part of the
Leukaemia
Patient Advocates Foundation) is a network of MPN patient group representatives from around the world which was formed to create and maintain collaboration between patient groups.
Advocacy
–the MPN Advocates Network (part of the
Leukaemia
Patient Advocates Foundation) is a network of MPN patient group representatives from around the world which was formed to create and maintain collaboration between patient groups.
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Light Therapy
Has anyone stopped light therapy for dermatology because of CLL? Or continued? Or started after diagnosis? Dermatologists at NIH suggest I do not take any medications that suppress immune system to control psoriasis due to CLL and AIN. They did suggest light therapy. I was going to consider it but it
Has anyone stopped light therapy for dermatology because of CLL? Or continued? Or started after diagnosis? Dermatologists at NIH suggest I do not take any medications that suppress immune system to control psoriasis due to CLL and AIN. They did suggest light therapy. I was going to consider it but it
DriedSeaweed
in
CLL Support
5 years ago
To tell or not to tell ...
Hi Serra I am so sorry for you , I understand the feeling of not wanting to share this with your husband. I had the same feeling, when I first heard I had CLL. My wife wasn’t with me when I found out and when I called her after my appointment, I couldn’t pull it off, it just came out. I wasn’t even
Hi Serra I am so sorry for you , I understand the feeling of not wanting to share this with your husband. I had the same feeling, when I first heard I had CLL. My wife wasn’t with me when I found out and when I called her after my appointment, I couldn’t pull it off, it just came out. I wasn’t even
kubie
in
CLL Support
5 years ago
Hot flashes vs b symptom
I am wondering how easy it is for a postmenopausal female to distinguish between hot flashes/night sweats and CLL b symptom night sweats? I had surgical menopause in my late 30’s and at 64 still have a night swat about 1/week. I think it it is of menopausal type, but then got to wondering. I could always
I am wondering how easy it is for a postmenopausal female to distinguish between hot flashes/night sweats and CLL b symptom night sweats? I had surgical menopause in my late 30’s and at 64 still have a night swat about 1/week. I think it it is of menopausal type, but then got to wondering. I could always
CLLmoxie
in
CLL Support
5 years ago
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