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Is hair loss a given?
Hi all - I know that hair loss/thinning is listed as a possible side effect of taking hydroxyurea. I immediately latched on to the word “possible”, in the hope that it also means loads of us on the drug will not lose hair. My haemo has many young patients who have to take hydroxy forever for sickle cell
Hi all - I know that hair loss/thinning is listed as a possible side effect of taking hydroxyurea. I immediately latched on to the word “possible”, in the hope that it also means loads of us on the drug will not lose hair. My haemo has many young patients who have to take hydroxy forever for sickle cell
WileyFrench
in
MPN Voice
6 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
6 years ago
SickleCellNewsWeek
I would gladly marry a man with sickle cell anaemia! – former Most Beautiful Girl in Nigeria (MBGN) http://bit.ly/2OColcx Swedish biotech company, Modus Therapeutics announces FDA Acceptance of Sevuparin for treatment of SCD http://bit.ly/2RLm8xl I long diagnosed myself with sickle cell anaemia,
I would gladly marry a man with sickle cell anaemia! – former Most Beautiful Girl in Nigeria (MBGN) http://bit.ly/2OColcx Swedish biotech company, Modus Therapeutics announces FDA Acceptance of Sevuparin for treatment of SCD http://bit.ly/2RLm8xl I long diagnosed myself with sickle cell anaemia,
sicklecellnews
in
Sickle Cell Society
6 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
6 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
6 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
6 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
6 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
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
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
It's back.
First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find
First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find
CynD
in
My Ovacome
6 years ago
Sickle Cell NewsWeek
SickleCellNewsWeek He did not pay a cent for the bone marrow transplant that cured him of SCD. Anyone can access the opportunity! http://bit.ly/2R1wmda Lawyer, actress, song-writer, singer, broadcaster Tosin Abisona Bucknor (1981-2018) on passion for SCD awareness – ‘I believed I wouldn’t live to 21
SickleCellNewsWeek He did not pay a cent for the bone marrow transplant that cured him of SCD. Anyone can access the opportunity! http://bit.ly/2R1wmda Lawyer, actress, song-writer, singer, broadcaster Tosin Abisona Bucknor (1981-2018) on passion for SCD awareness – ‘I believed I wouldn’t live to 21
sicklecellnews
in
Sickle Cell Society
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
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
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
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
Sickle Cell News Week
SickleCellNewsWeek Cecilia Tiwaah Abrefa recalls waking up one day to find she could not lift her limbs or sit unaided – it took six years to get back to (a semblance of) normal http://bit.ly/2KasXpR High altitudes are proven crises-triggers. Yet Kevin is adamant he wants to be a FIGHTER PILOT. He
SickleCellNewsWeek Cecilia Tiwaah Abrefa recalls waking up one day to find she could not lift her limbs or sit unaided – it took six years to get back to (a semblance of) normal http://bit.ly/2KasXpR High altitudes are proven crises-triggers. Yet Kevin is adamant he wants to be a FIGHTER PILOT. He
sicklecellnews
in
Sickle Cell Society
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
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