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Mantle cell lymphoma (MCL)
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Any thoughts?
I was diagnosed with cll in 2013. I am new to this site. My numbers continue to go up. Any thoughts on diet that might help? When should I start chemo or immunotherapy?
I was diagnosed with cll in 2013. I am new to this site. My numbers continue to go up. Any thoughts on diet that might help? When should I start chemo or immunotherapy?
Fiddlegal
in
CLL Support
7 years ago
CLL in the Central Nervous System: Any Experience with Cytarabine (Cytosar)?
Here's a weird one: my CLL has found its way to my cerebospinal fluid. It appears to be associated with lesions observed in the brain lining and behind both my retinas. Confirmed by a spinal tap, eye biopsy, MRI, about 17 million examinations and tests, etc. I've got a world-class CLL expert, Dr Bruce
Here's a weird one: my CLL has found its way to my cerebospinal fluid. It appears to be associated with lesions observed in the brain lining and behind both my retinas. Confirmed by a spinal tap, eye biopsy, MRI, about 17 million examinations and tests, etc. I've got a world-class CLL expert, Dr Bruce
Eagle5327
in
CLL Support
7 years ago
So sorry! Another supplement enquiry. B vitamins, excluding b12?
I received my sublingual b12 vitamins today (1000 mcg Methylcobalamin, taking 2 to begin with as level is 372 ng/L [> 180]) but I wonder whether I should still be supplementing with other b vits as well, including folic acid (my folate is 16 ng/ml [4.6 - 34.8)? I don't want to miss important ones out
I received my sublingual b12 vitamins today (1000 mcg Methylcobalamin, taking 2 to begin with as level is 372 ng/L [> 180]) but I wonder whether I should still be supplementing with other b vits as well, including folic acid (my folate is 16 ng/ml [4.6 - 34.8)? I don't want to miss important ones out
sip1
in
Thyroid UK
7 years ago
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ATTENTION HODGKIN LYMPHOMA PATIENTS, CAREGIVERS AND SURVIVORS
Lymphoma Canada is preparing a submission for the pan-Canadian Oncology Drug Review (pCODR) for: Pembrolizumab (Keytruda) for classical Hodgkin lymphoma. The surveys provide us with the patient and caregiver input required for the submission. pCODR uses this information to help them make recommendations
Lymphoma Canada is preparing a submission for the pan-Canadian Oncology Drug Review (pCODR) for: Pembrolizumab (Keytruda) for classical Hodgkin lymphoma. The surveys provide us with the patient and caregiver input required for the submission. pCODR uses this information to help them make recommendations
LCAdmin
Lymphoma Canada
in
Lymphoma Canada
7 years ago
Explainer: what is chemotherapy and how does it work?
While more relevant to solid cancer treatment, much of this article provides a useful background to CLL treatment. Of particular interest is the natural origin of many cancer treatments covered in the section '
Where did we find the drugs?
' The section
'Why the severe side effects?'
is
While more relevant to solid cancer treatment, much of this article provides a useful background to CLL treatment. Of particular interest is the natural origin of many cancer treatments covered in the section '
Where did we find the drugs?
' The section
'Why the severe side effects?'
is
AussieNeil
Partner
in
CLL Support
7 years ago
Giant cell arteritis
I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.
I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.
Buddyk
in
PMRGCAuk
7 years ago
Creatinine Level
Hi All have had PBC for over 10 years and now i am showing high Creatinine levels, has anybody else noticed their levels going up, just wondered if it could have anything to do with taking Urso. Any feed back would be great Tia.
Hi All have had PBC for over 10 years and now i am showing high Creatinine levels, has anybody else noticed their levels going up, just wondered if it could have anything to do with taking Urso. Any feed back would be great Tia.
Kevviv
in
PBC Foundation
7 years ago
Bone marrow transplant on the cards
Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good news is that I will only be in 4 weeks and can more or less choose when it's best for me to start. Sisters tissue is done, mine is not ready but
Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good news is that I will only be in 4 weeks and can more or less choose when it's best for me to start. Sisters tissue is done, mine is not ready but
KAS8
in
CLL Support
7 years ago
Ocular Lymphoma
Weird as it sounds, I apparently have lymphoma in my right eye. I'm in the care of of an outstanding team of specialists at Johns Hopkins Hospital in the US and have no reason to doubt it. They have now ruled out retina issues, infections, and all other possible causes. They took a biopsy of the eye
Weird as it sounds, I apparently have lymphoma in my right eye. I'm in the care of of an outstanding team of specialists at Johns Hopkins Hospital in the US and have no reason to doubt it. They have now ruled out retina issues, infections, and all other possible causes. They took a biopsy of the eye
Eagle5327
in
CLL Support
7 years ago
Need Suggestions - high platelets, ALP and Creatinine
I have just had my latest blood tests and my platelets are 505, Alkaline Phosphatase 143U/L and Serum Creatinine 1.29 mg/dl, What you will suggest for me, Should I be worried?
I have just had my latest blood tests and my platelets are 505, Alkaline Phosphatase 143U/L and Serum Creatinine 1.29 mg/dl, What you will suggest for me, Should I be worried?
javedsiddiqui
in
CLL Support
7 years ago
Once again, sad relapse
Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo
Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo
Jennchap1
in
Non Hodgkin's Lymphoma Friends
7 years ago
Webinar from Leukemia & Lymphoma society on Wednesday May 24th, 2017 on Non Hodgkin Lymphoma!!!
Staying healthy also means being educated on what we have. This is worth while to check out. I'm registered for it.
Staying healthy also means being educated on what we have. This is worth while to check out. I'm registered for it.
Josie2rulrs
in
Non Hodgkin's Lymphoma Friends
7 years ago
arterial arteritis
Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp
Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp
blackstone1
in
PMRGCAuk
7 years ago
Transplant Patients - SCT/BMT
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Tinkerbellcgy
in
Non Hodgkin's Lymphoma Friends
7 years ago
Travel insurance (again) - UK
I have previously recommended good2go on here, as WorldFirst had been really unhelpful. However this morning good2go gave me a quote for 2 weeks in Cuba for £762 or £985 for two people (only one with CLL which is in complete remission). the difference was the level of cancellation and baggage cover
I have previously recommended good2go on here, as WorldFirst had been really unhelpful. However this morning good2go gave me a quote for 2 weeks in Cuba for £762 or £985 for two people (only one with CLL which is in complete remission). the difference was the level of cancellation and baggage cover
Fowey2009
in
CLL Support
7 years ago
Mindfulness meditations for those living with blood cancer
Mindfulness meditations specifically to 'Support those living with blood cancer' have been released by Abbvie in collaboration with the CLLSA, Leukaemia Care, Lymphoma association and Bloodwise. See press release with link and flyer at - https://www.cllsupport.org.uk/news/abbvie-launches-first-ever-series-mindfulness-podcasts-support-people-living-blood-cancers
Mindfulness meditations specifically to 'Support those living with blood cancer' have been released by Abbvie in collaboration with the CLLSA, Leukaemia Care, Lymphoma association and Bloodwise. See press release with link and flyer at - https://www.cllsupport.org.uk/news/abbvie-launches-first-ever-series-mindfulness-podcasts-support-people-living-blood-cancers
Myrddin
in
CLL Support
7 years ago
Journey begins
Hello ladies , a few hours since my first appointment with consultant following ultrasound diagnosis of a complex cyst two weeks ago. Surgery in three weeks to remove ovaries and Fallopian tubes he asked me to consent to further surgery when He's already there but warned he may have to go back in
Hello ladies , a few hours since my first appointment with consultant following ultrasound diagnosis of a complex cyst two weeks ago. Surgery in three weeks to remove ovaries and Fallopian tubes he asked me to consent to further surgery when He's already there but warned he may have to go back in
Christie22
in
My Ovacome
7 years ago
Sickle cell trait
I have trait of sickle cell and was told that I probably could never travel to Colorado because of the high altitude and that I may get a shortness of breath being that I have sickle cell trait. Is this true and if so what's the worse that can happen
I have trait of sickle cell and was told that I probably could never travel to Colorado because of the high altitude and that I may get a shortness of breath being that I have sickle cell trait. Is this true and if so what's the worse that can happen
Mont107
in
Sickle Cell Society
7 years ago
Sickle trait 's' blood count percentages.
Hi All, it's been a while since I've posted on here :-) I just wondered whether anyone here has had their sickle trait blood [u]percentage[/u] tested? My son has been very lethargic and complaining of leg pains for a number of weeks now. He was anaemic eighteen months ago and his vitamin d levels were
Hi All, it's been a while since I've posted on here :-) I just wondered whether anyone here has had their sickle trait blood [u]percentage[/u] tested? My son has been very lethargic and complaining of leg pains for a number of weeks now. He was anaemic eighteen months ago and his vitamin d levels were
Linda0076
in
Sickle Cell Society
7 years ago
Jeanie 1960
My daughter actually both of them have been diagnosed with fibromyalga but recently found out there is sickle cell trait in the family just wondering if any of you have been doagnosed with fibro or anyone 1 with fragile x carriers ir full blown seems the syptons are quite alike and just so happens we
My daughter actually both of them have been diagnosed with fibromyalga but recently found out there is sickle cell trait in the family just wondering if any of you have been doagnosed with fibro or anyone 1 with fragile x carriers ir full blown seems the syptons are quite alike and just so happens we
Jeanie1960
in
Sickle Cell Society
7 years ago
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