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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
Living with blood cancer related fatigue
Thank you to all who have completed a quick symptoms at diagnosis poll so far https://healthunlocked.com/leukaemia-care/polls/139184163/which-if-any-of-the-7-most-reported-symptoms-from-our-patient-survey-did-you-experience-at-or-before-diagnosis and for your comments of other symptoms you experienced
Thank you to all who have completed a quick symptoms at diagnosis poll so far https://healthunlocked.com/leukaemia-care/polls/139184163/which-if-any-of-the-7-most-reported-symptoms-from-our-patient-survey-did-you-experience-at-or-before-diagnosis and for your comments of other symptoms you experienced
HAIRBEAR_UK
in
Leukaemia 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
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FDA Approves Duvelisib for CLL and Follicular Lymphoma - Sep 24, 2018
FDA Approves Duvelisib for CLL and Follicular Lymphoma Published: Monday, Sep 24, 2018 The FDA has approved duvelisib (Copiktra) for the treatment of patients with relapsed/refractory chronic
lymphocytic
leukemia
/small
lymphocytic
lymphoma (CLL/SLL) or relapsed/refractory follicular lymphoma.
FDA Approves Duvelisib for CLL and Follicular Lymphoma Published: Monday, Sep 24, 2018 The FDA has approved duvelisib (Copiktra) for the treatment of patients with relapsed/refractory chronic
lymphocytic
leukemia
/small
lymphocytic
lymphoma (CLL/SLL) or relapsed/refractory follicular lymphoma.
lankisterguy
Volunteer
in
CLL Support
6 years ago
Stress Exacerbates CLL And Speeds Up Its Progression
https://raypeatforum.com/community/threads/stress-exacerbates-cancer-and-speeds-up-its-progression.25582/ "...Patients with chronic
lymphocytic
leukemia
(CLL) who feel more stress also have more cancer cells in their blood and elevated levels of three other markers of more advanced disease.
https://raypeatforum.com/community/threads/stress-exacerbates-cancer-and-speeds-up-its-progression.25582/ "...Patients with chronic
lymphocytic
leukemia
(CLL) who feel more stress also have more cancer cells in their blood and elevated levels of three other markers of more advanced disease.
DirkTengg
in
CLL Support
6 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
What is "palliative care"?
Hi all, Charlotte from Leukaemia Care here. I'm doing a bit of research on palliative care and I was surprised at what I found (I won't explain why as it may spoil the point of this question!) So I'm curious. Without googling or looking it up in any other way, would you all mind telling me what do
Hi all, Charlotte from Leukaemia Care here. I'm doing a bit of research on palliative care and I was surprised at what I found (I won't explain why as it may spoil the point of this question!) So I'm curious. Without googling or looking it up in any other way, would you all mind telling me what do
KnitEatCrochetRepeat
in
Leukaemia 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
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
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
Good news to finish the week on
I thought you might be interested to see this article from the British Society for Hematology, published earlier this week. It seems that there is active research into MPN across many parts of the world - which is great for us. On a personal note I also homed in on the third para which states definitively
I thought you might be interested to see this article from the British Society for Hematology, published earlier this week. It seems that there is active research into MPN across many parts of the world - which is great for us. On a personal note I also homed in on the third para which states definitively
Ovingite
in
MPN Voice
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
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
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
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
Melanoma linked with CLL, close monitoring recommended - worth a read on sciencedaily.com
While studying a large group of individuals with chronic
lymphocytic
leukemia
(CLL), a research team made an important discovery: these patients had a sizable 600 percent higher risk of melanoma, the most dangerous form of skin cancer.
While studying a large group of individuals with chronic
lymphocytic
leukemia
(CLL), a research team made an important discovery: these patients had a sizable 600 percent higher risk of melanoma, the most dangerous form of skin cancer.
Steffi50
in
CLL Support
6 years ago
Ask the CLL Expert - LIVE - September 27, 2018 at 12 PM Pacific Time (2 PM CT, 3 PM ET) with leading CLL specialist Dr. Jeff Sharman
Ask the CLL Expert - LIVE September 27, 2018 https://www.patientpower.info/event/ask-the-cll-expert-live Do you have a burning question for an expert in chronic
lymphocytic
leukemia
(CLL)?
Ask the CLL Expert - LIVE September 27, 2018 https://www.patientpower.info/event/ask-the-cll-expert-live Do you have a burning question for an expert in chronic
lymphocytic
leukemia
(CLL)?
lankisterguy
Volunteer
in
CLL Support
6 years ago
Ruxolitinib for Polycythemia Vera
I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist
I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist
SirKitBored
in
MPN Voice
6 years ago
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