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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
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
6 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
6 years ago
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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
6 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
6 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
6 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
6 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
6 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
6 years ago
MF with falling Hb: what drugs to go to next?
Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi. Sorry about the similarity
Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi. Sorry about the similarity
jane13
in
MPN Voice
6 years ago
cll w/ a twist - Stem cell
okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time
okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time
chemosuxs
in
CLL Support
6 years ago
Stupid me
Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my Ruxolitinib 🤬 can’t wait for the itching and bone pain to start, it’s going to be such fun............ Janet x
Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my Ruxolitinib 🤬 can’t wait for the itching and bone pain to start, it’s going to be such fun............ Janet x
Skye333
in
MPN Voice
6 years ago
Acute Myeloid Leukaemia
Hi. I my husband has Myelofibrosis-hgb 100, wcc just below 25. When I asked about immature cells, his consultant said they were less than 0.5%. I asked what type and he said the blasts were myeloid, ‘It’s not going in the right direction but it’s slow’. I guess this means he’s slowly progressing to AML
Hi. I my husband has Myelofibrosis-hgb 100, wcc just below 25. When I asked about immature cells, his consultant said they were less than 0.5%. I asked what type and he said the blasts were myeloid, ‘It’s not going in the right direction but it’s slow’. I guess this means he’s slowly progressing to AML
Fika500
in
MPN Voice
6 years ago
CLL Society Alert - October 23, 2018
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=27a5c5e8-da36-47c0-8638-d063a29a0bd1 This newsletter is issued by email several times per month listing many upcoming in-person support meetings and educational forums all over the USA & Canada. It's very easy to sign up to get your own
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=27a5c5e8-da36-47c0-8638-d063a29a0bd1 This newsletter is issued by email several times per month listing many upcoming in-person support meetings and educational forums all over the USA & Canada. It's very easy to sign up to get your own
lankisterguy
Volunteer
in
CLL Support
6 years ago
beginning with Ibrutinib
Next week i will begin with Ibrutinib , as told i am igvh and p53 mutated .RC , platelels are good . Inmunoglobulins down the normal , but no infections. Some large Lynph nodes in my abdomen that may risk organs and higher creatinine and uric acid than normal are the reason to begin treatment. Any advice
Next week i will begin with Ibrutinib , as told i am igvh and p53 mutated .RC , platelels are good . Inmunoglobulins down the normal , but no infections. Some large Lynph nodes in my abdomen that may risk organs and higher creatinine and uric acid than normal are the reason to begin treatment. Any advice
antonb
in
CLL Support
6 years ago
Light the Night Australia..Walk Locations
The Australian
Leukaemia
Foundation includes these special fund raising events between September and November annually.
The Australian
Leukaemia
Foundation includes these special fund raising events between September and November annually.
AussieNeil
Administrator
in
CLL Support
6 years ago
New haem, new diagnosis?
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so
Aime
in
MPN Voice
6 years ago
Dr. I. Flinn...Recognizing the Side Effects of Newly Approved CLL Therapies
Today we are discussing the management of patients with chronic lymphocytic leukemia (CLL), including incorporating the newest approved therapies for CLL: duvelisib and venetoclax. We are joined by Dr. Ian Flinn, a hematologist/oncologist and the director of the Blood Cancer Research Program at Sarah
Today we are discussing the management of patients with chronic lymphocytic leukemia (CLL), including incorporating the newest approved therapies for CLL: duvelisib and venetoclax. We are joined by Dr. Ian Flinn, a hematologist/oncologist and the director of the Blood Cancer Research Program at Sarah
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
LLS Ask the Doctor New York City- Dr. Anthony Mato Dinner Meeting Dec 12, 2018
http://support.lymphoma.org/site/MessageViewer?em_id=3116.0&dlv_id=6484 Ask the Doctor – New York, NY Free Educational Program for Lymphoma Patients, Survivors and Caregivers Date and Time: Wednesday, December 12, 2018 Location: DoubleTree by Hilton, Metropolitan - NYC 569 Lexington Avenue
http://support.lymphoma.org/site/MessageViewer?em_id=3116.0&dlv_id=6484 Ask the Doctor – New York, NY Free Educational Program for Lymphoma Patients, Survivors and Caregivers Date and Time: Wednesday, December 12, 2018 Location: DoubleTree by Hilton, Metropolitan - NYC 569 Lexington Avenue
lankisterguy
Volunteer
in
CLL Support
6 years ago
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