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Cutaneous T cell lymphoma (CTCL)
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Phenomenal News
Some of you may have seen my recent post inquiring about full remission. The reason is that I have been in full remission since June 2nd without any of my prior symptoms. I have not had one moment of cog fog, muscle spasm, fatigue, numbness, or loss of balance. I have not: changed my diet, changed my
Some of you may have seen my recent post inquiring about full remission. The reason is that I have been in full remission since June 2nd without any of my prior symptoms. I have not had one moment of cog fog, muscle spasm, fatigue, numbness, or loss of balance. I have not: changed my diet, changed my
Karen-x
in
My MSAA Community
7 years ago
Test results
I got my test results back from the CAT scans. I have an enlarged liver, spleen, and borderline heart. Multiple lymph nodes lumps. My white blood cell count is around 19,000, he's sending me to a hematologist. So I still don't know if I have non Hodgkin's lymphoma. What do y'all think? Thank you, so
I got my test results back from the CAT scans. I have an enlarged liver, spleen, and borderline heart. Multiple lymph nodes lumps. My white blood cell count is around 19,000, he's sending me to a hematologist. So I still don't know if I have non Hodgkin's lymphoma. What do y'all think? Thank you, so
Gailbarnes
in
Non Hodgkin's Lymphoma Friends
7 years ago
It's a Nice Day for a White Wedding
Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant. My beautiful wife and I attended a Nieces wedding this weekend. It was a casual event as weddings go and very enjoyable. I was keeping everything
Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant. My beautiful wife and I attended a Nieces wedding this weekend. It was a casual event as weddings go and very enjoyable. I was keeping everything
JediReject
in
MPN Voice
7 years ago
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Checking These Areas for Lumps Can Help Catch Lymphoma Early
https://lymphomanewstoday.com/2017/06/29/checking-neck-armpits-groin-lumps-spot-lymphoma-early/ This video from uses a Barbie doll to demonstrate how lymphoma patients often discover their lumps. During Barbie’s usual beauty routine of shaving, moisturizing and applying fake tan she notices a lump
https://lymphomanewstoday.com/2017/06/29/checking-neck-armpits-groin-lumps-spot-lymphoma-early/ This video from uses a Barbie doll to demonstrate how lymphoma patients often discover their lumps. During Barbie’s usual beauty routine of shaving, moisturizing and applying fake tan she notices a lump
wmay13241
in
Non Hodgkin's Lymphoma Friends
7 years ago
Neutropenia problems - Non-Hodgkins Lymphoma
My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemotherapy using rituximab viusimilar and bendamusten drugs, after 3 weeks her leucocytes count is 200, the highest she ever had was 600 a couple of days ago, she was told the normal count is between 4000 and 10 000. The hospital
My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemotherapy using rituximab viusimilar and bendamusten drugs, after 3 weeks her leucocytes count is 200, the highest she ever had was 600 a couple of days ago, she was told the normal count is between 4000 and 10 000. The hospital
gaby1953
in
CLL Support
7 years ago
62 and feeling alone
Hi I have been treated for the last year for large cell type B lymphoma I have had six chemo treatments and 23 radiation treatments to clear up a couple of small spots on my spine, I am really scared I know nothing about my disease as I have been scare to do any research on my own, I just sit around
Hi I have been treated for the last year for large cell type B lymphoma I have had six chemo treatments and 23 radiation treatments to clear up a couple of small spots on my spine, I am really scared I know nothing about my disease as I have been scare to do any research on my own, I just sit around
Connie621955
in
Lymphoma Canada
7 years ago
MPN Voice Patients’ Forum – Birmingham. Friday 6th October 2017, 12.30 – 4 pm, registration and buffet lunch 12 – 12.30 pm
Suite 7, Fazeley Studios, 191 Fazeley Street, Digbeth, Birmingham, B5 5SE
Programme
The programme is yet to be finalized, but will include talks from haematologists, a haematology specialist nurse, and patients, plus breakout groups for each MPN where patients can meet in smaller groups
Suite 7, Fazeley Studios, 191 Fazeley Street, Digbeth, Birmingham, B5 5SE
Programme
The programme is yet to be finalized, but will include talks from haematologists, a haematology specialist nurse, and patients, plus breakout groups for each MPN where patients can meet in smaller groups
Mazcd
MPNVoice
in
MPN Voice
7 years ago
MPN Voice Patients’ Forum – Inverness. Friday 8th September, 10 am - 2 pm, registration 9.30 – 10 am
Eden Court Theatre, Bishops Road, Inverness, IV3 5SA
The forum will be held in The MacLean Room
Programme
The programme is yet to be finalized, but will include talks from haematologists, the haematology nurse specialist from Guy’s Hospital and patients, plus breakout groups for each
Eden Court Theatre, Bishops Road, Inverness, IV3 5SA
The forum will be held in The MacLean Room
Programme
The programme is yet to be finalized, but will include talks from haematologists, the haematology nurse specialist from Guy’s Hospital and patients, plus breakout groups for each
Mazcd
MPNVoice
in
MPN Voice
7 years ago
Problems with veins
Anyone have problems with finding veins and what helps? I have tried drinking lots of water but don't think that does anything to help. Got stuck 3 times yesterday trying to get a CT scan with contrast. Told to drink lots of water and come back Monday. I've done this with labs at my doctor's office
Anyone have problems with finding veins and what helps? I have tried drinking lots of water but don't think that does anything to help. Got stuck 3 times yesterday trying to get a CT scan with contrast. Told to drink lots of water and come back Monday. I've done this with labs at my doctor's office
LisaCl
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Question on Complete Stem Cell Transplant
Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion
Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion
evetom
in
CLL Support
7 years ago
Newbie with Temporal Arteritis. New drug Tocilizumab (actrema)
Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on
Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on
Hidden
in
PMRGCAuk
7 years ago
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
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
Administrator
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
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