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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
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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
SICKLE CELL NEWSWEEK
SICKLECELLNEWSWEEK MAYDAY: Nigerian teacher/author seeks support to undertake last ditch bone marrow transplant in India http://bit.ly/2RxxyEN Renowned Bone Marrow Transplant Rahul Bhargava launches series to answer all questions on BMT http://bit.ly/2DkMhQn Mother of twins, Mariam Kay recalls
SICKLECELLNEWSWEEK MAYDAY: Nigerian teacher/author seeks support to undertake last ditch bone marrow transplant in India http://bit.ly/2RxxyEN Renowned Bone Marrow Transplant Rahul Bhargava launches series to answer all questions on BMT http://bit.ly/2DkMhQn Mother of twins, Mariam Kay recalls
sicklecellnews
in
Sickle Cell Society
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
Grateful for any advice on taking a Vit B Complex plus a good mumtivitamin
I’m currently taking Thorne Basic B Complex but also after advice on here looking for a decent A-Z multivitamin. If anyone versed in this has a moment to take a look at the multivitamin and advise if ok to take with the B Comolex. Thank you lovely people in advance 😊 Ok it won’t let me load the pics
I’m currently taking Thorne Basic B Complex but also after advice on here looking for a decent A-Z multivitamin. If anyone versed in this has a moment to take a look at the multivitamin and advise if ok to take with the B Comolex. Thank you lovely people in advance 😊 Ok it won’t let me load the pics
Mandymoos8
in
Pernicious Anaemia Society
6 years ago
After NHL and BMT
Hi, I’m a caregiver of my husband with NHL ALCL Alk+ and Leptomenges. Took 9 weeks, multiple hospitals and doctors to diagnose summer 2017. He had 5 rounds of CHOEP and then experienced horrible headaches and a seizure which resulted in leptomeneges diagnosis and new course of chemo. After scans with
Hi, I’m a caregiver of my husband with NHL ALCL Alk+ and Leptomenges. Took 9 weeks, multiple hospitals and doctors to diagnose summer 2017. He had 5 rounds of CHOEP and then experienced horrible headaches and a seizure which resulted in leptomeneges diagnosis and new course of chemo. After scans with
Onedayatatime2
in
Non Hodgkin's Lymphoma Friends
6 years ago
Need info on raising red cell count
Hello I have been here on and off for about a year. I know you are all going through your individual health issues and I hope and pray you find the answers you are looking for. I joined because my brother was diagnosed with CLl q11 a little over three years ago. He is 55 years old and had been in great
Hello I have been here on and off for about a year. I know you are all going through your individual health issues and I hope and pray you find the answers you are looking for. I joined because my brother was diagnosed with CLl q11 a little over three years ago. He is 55 years old and had been in great
Lorray
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
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
SICKLE CELL NEWS WEEK
SICKLECELLNEWSWEEK The playful young boy never had a crisis until the family moved to Canada! http://bit.ly/2PYoM2n The Bako Youth Development Foundation has conducted over one million Hb verification tests in Nigeria http://bit.ly/2Pm19Ur Aiden’s sickle cell was worsening … until his concerned
SICKLECELLNEWSWEEK The playful young boy never had a crisis until the family moved to Canada! http://bit.ly/2PYoM2n The Bako Youth Development Foundation has conducted over one million Hb verification tests in Nigeria http://bit.ly/2Pm19Ur Aiden’s sickle cell was worsening … until his concerned
sicklecellnews
in
Sickle Cell Society
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
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
HEALING FOR SICKLE CELL DISEASE
Our hospital heals and eliminat all chronic Sickle Cell Disease in 3 to 4 weeks with no threat, surgery or bone marrow transplants involved. We adopt the most simple, safe, fast and successful genius method to heal all SCD. Find us in google: Supreme Sickle Cell Hospital Nigeria
Our hospital heals and eliminat all chronic Sickle Cell Disease in 3 to 4 weeks with no threat, surgery or bone marrow transplants involved. We adopt the most simple, safe, fast and successful genius method to heal all SCD. Find us in google: Supreme Sickle Cell Hospital Nigeria
sepremesicklecell
in
Sickle Cell Society
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
MF, Jakafi, and Osteosclerosis
Hi everyone, I was diagnosed with MF post PV since 4 months, in my last BM biopsy it states MF3 for bone fibrosis and the Osteosclerosis is obvious now. My set of questions are: 1- Does Jakafi hinder or slow the Osteosclerosis down? 2- Can this Osteosclerosis retract somehow after the HCT (Transplant
Hi everyone, I was diagnosed with MF post PV since 4 months, in my last BM biopsy it states MF3 for bone fibrosis and the Osteosclerosis is obvious now. My set of questions are: 1- Does Jakafi hinder or slow the Osteosclerosis down? 2- Can this Osteosclerosis retract somehow after the HCT (Transplant
amalekh
in
MPN Voice
6 years ago
Ruxolitinib
Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years
Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years
waddles22
in
MPN Voice
6 years ago
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