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Cutaneous T cell lymphoma (CTCL)
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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
6 years ago
Standards of Care as defined by UMN doctors
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
fightald
Administrator
in
Parents of ALD Newborns
6 years ago
Has anyone had a bone marrow transplant who has PV?
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
tracey13
in
MPN Voice
6 years ago
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two kids diagnosed with ALD
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
aadilmadarveet
in
Leukodystrophy Support
6 years ago
MCL
My father is being treated with ibrutinib for mantle cell lymphoma. His platelets are very low and don’t pick up after transfusion. They have stopped his 4 tablets/day of ibrutinib as he now has an infection. Has anyone else experienced this?
My father is being treated with ibrutinib for mantle cell lymphoma. His platelets are very low and don’t pick up after transfusion. They have stopped his 4 tablets/day of ibrutinib as he now has an infection. Has anyone else experienced this?
Ibrut
in
Lymphoma Canada
6 years ago
Identify the carrier.
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
aadilmadarveet
in
Parents of ALD Newborns
6 years ago
Lukiemia and High white blood count
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
ConcernedSpouse2012
in
CLL Support
6 years ago
Multivitamins
I have spent a lot of time searching for the best iron free multivitamin. I know someone here posted that the vit A should be as beta carotene. Suggestions?
I have spent a lot of time searching for the best iron free multivitamin. I know someone here posted that the vit A should be as beta carotene. Suggestions?
gwillistexas
in
PBC Foundation
6 years ago
Any help in Florida?
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Susanissufferingtoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
GCA and black outs?
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Devonspinner
in
PMRGCAuk
6 years ago
What a year - and some good news to end it
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Timjonze
in
MPN Voice
6 years ago
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
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
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
Great article about Nobel winner Jim Allison also gives some theory
https://www.wired.com/story/meet-jim-allison-the-texan-who-just-won-a-nobel-cancer-breakthrough/ The article has some surprisingly good explanations of parts of the immune system. [i]" (Lymph nodes are like Rick’s in Casablanca. Good guys, bad guys, reporters and soldiers, macrophages, dendrites, T and
https://www.wired.com/story/meet-jim-allison-the-texan-who-just-won-a-nobel-cancer-breakthrough/ The article has some surprisingly good explanations of parts of the immune system. [i]" (Lymph nodes are like Rick’s in Casablanca. Good guys, bad guys, reporters and soldiers, macrophages, dendrites, T and
SeymourB
in
CLL Support
6 years ago
What is Lymphoma ?
This is a good explanation both for newly diagnosed patients and those of us who need a refresher to help our understanding of the illness . The more we understand, the better equipped we are to deal with treatment decisions and the less fearful we will be of the medical terminology when talking with
This is a good explanation both for newly diagnosed patients and those of us who need a refresher to help our understanding of the illness . The more we understand, the better equipped we are to deal with treatment decisions and the less fearful we will be of the medical terminology when talking with
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
6 years ago
LOW GRADE HAS TRANSFORMED TO HIGH GRADE, RChop next.what to expect ?
Hi all, I've been dealing with low grade B cell lymphoma since 2016, treatment was Gazyva. It came back in about 6 months and I've been on w&w since my blood numbers have been okay. Symptoms started ramping up over the summer and I was going to do treatments but my blood numbers were pretty much in the
Hi all, I've been dealing with low grade B cell lymphoma since 2016, treatment was Gazyva. It came back in about 6 months and I've been on w&w since my blood numbers have been okay. Symptoms started ramping up over the summer and I was going to do treatments but my blood numbers were pretty much in the
skinkade
in
Non Hodgkin's Lymphoma Friends
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
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
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