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Cutaneous T cell lymphoma (CTCL)
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Road to a BMT... oops just got there
Hello Health Unlocked community, Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it. Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax
Hello Health Unlocked community, Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it. Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax
NMMP
in
CLL Support
7 years ago
Lenolidamide
I had a relapse of CD20 positive large B Cell lymphoma in left forearm last October after being in remission for 8 years following R-CHOP. Recently finished 5 months of Bendamustine/Rituximab infusions followed by 18 days of radiation. Oncologist is starting me on Lenalidamide (Revlamid) regimen in
I had a relapse of CD20 positive large B Cell lymphoma in left forearm last October after being in remission for 8 years following R-CHOP. Recently finished 5 months of Bendamustine/Rituximab infusions followed by 18 days of radiation. Oncologist is starting me on Lenalidamide (Revlamid) regimen in
Howie40
in
Lymphoma Canada
7 years ago
Starting Allopurinol with Ibrutinib?
Hello, My Father was just diagnosed with stage 2 unmutated CLL. He has enlarged nodes on his neck, his spleen is enlarged, and his WBC has gone from 42,000 to 72,000 in less than a month and 91% are lymphocytes so they are rushing to start Ibrutinib. He asked his Dr. about protecting his kidneys and
Hello, My Father was just diagnosed with stage 2 unmutated CLL. He has enlarged nodes on his neck, his spleen is enlarged, and his WBC has gone from 42,000 to 72,000 in less than a month and 91% are lymphocytes so they are rushing to start Ibrutinib. He asked his Dr. about protecting his kidneys and
CLLdaughters
in
CLL Support
7 years ago
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Clinical Trial Navigator to Navigate the Clinical Trial Site? .... Sounds Helpful.
On today's Patient Power mailing comes information that seems to be quite helpful for anyone, who like me, has ventured online to search out a clinical trial and found it to be fitful journey, feeling unfit to sift through the jargon, & leaving without anything that seemed to fit (perhaps even coming
On today's Patient Power mailing comes information that seems to be quite helpful for anyone, who like me, has ventured online to search out a clinical trial and found it to be fitful journey, feeling unfit to sift through the jargon, & leaving without anything that seemed to fit (perhaps even coming
gemit2000
in
CLL Support
7 years ago
MANTEL CELL LYMPHOMA AND IBRUTINIB
Hello, I'm new to this group and wanted to find answers to concerned questions. My partner had been diagnosed with Mantel Cell Lymphoma three years ago. He underwent Chemo and stem cell treatment. Recently after a routine blood test, the doctors said his WBC was rising rapidly - it's doubled in the
Hello, I'm new to this group and wanted to find answers to concerned questions. My partner had been diagnosed with Mantel Cell Lymphoma three years ago. He underwent Chemo and stem cell treatment. Recently after a routine blood test, the doctors said his WBC was rising rapidly - it's doubled in the
pollyg2016
in
Non Hodgkin's Lymphoma Friends
7 years ago
Mantel Cell Lymphomia
My partner was diagnosed with MCL three years ago. He underwent chemo and then had stem cell transplant. Recently, a blood test has indicated that his white blood cells have risen and that his platelets are now getting low. My partner looks and feels great, without showing any of the symptoms he first
My partner was diagnosed with MCL three years ago. He underwent chemo and then had stem cell transplant. Recently, a blood test has indicated that his white blood cells have risen and that his platelets are now getting low. My partner looks and feels great, without showing any of the symptoms he first
pollyg2016
in
CLL Support
7 years ago
AIHA and ITP
I just started treatment with Rituxan and Bendeka for my CLL. After the first treatment I had to have 4 blood transfusions and started on high dose steroids for my low RBC and Platelet count. My Oncologist/hematologist said I have developed AIHA and ITP. I am not stable enough for splenectomy but that
I just started treatment with Rituxan and Bendeka for my CLL. After the first treatment I had to have 4 blood transfusions and started on high dose steroids for my low RBC and Platelet count. My Oncologist/hematologist said I have developed AIHA and ITP. I am not stable enough for splenectomy but that
J-girl
in
CLL Support
7 years ago
Real stories: life after a stem cell transplant
Read other people's stories of life after a stem cell or bone marrow transplant here: https://www.anthonynolan.org/patients-and-families/real-stories
Read other people's stories of life after a stem cell or bone marrow transplant here: https://www.anthonynolan.org/patients-and-families/real-stories
LCNurse2
in
Leukaemia Support
7 years ago
RITUXIMAB
Hi there eveyone I am starting on Rituximab next week with my first infusion and I am a little nervous to say the least! Just wanting to know if anyone who is on it as any info on side effects etc. As we all know some Consultants/Specialist Nurses seem to gloss over the bad bits and only tell you
Hi there eveyone I am starting on Rituximab next week with my first infusion and I am a little nervous to say the least! Just wanting to know if anyone who is on it as any info on side effects etc. As we all know some Consultants/Specialist Nurses seem to gloss over the bad bits and only tell you
Bakbre
in
LUPUS UK
7 years ago
Low lipid HDL and lymphoma /SLL
I recently had my lipids checked with my family doctor and she found my HDL on the abnormally low side. Also my absolute lymphocytes increased, they have been fairly stable. I found several 'older' articles ex https://www.ncbi.nlm.nih.gov/pubmed/17522388 that show a relationship between low HDL and
I recently had my lipids checked with my family doctor and she found my HDL on the abnormally low side. Also my absolute lymphocytes increased, they have been fairly stable. I found several 'older' articles ex https://www.ncbi.nlm.nih.gov/pubmed/17522388 that show a relationship between low HDL and
Elle_V
in
Lymphoma Canada
7 years ago
Epo. London mpn day
I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which
I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which
Rachelthepotter
in
MPN Voice
7 years ago
GDP - Change of Chemo - Advice
Diffuse Large B Cell - Abdomen Was booked in for 6no R Chop, had a mid term scan, saw specialist, who has said i will now after 4 no R Chop, have 2no GDP, same 21 day cycle, then have another scan, then a bone marrow transplant, then 3 week intense Chemo blast (3week Hospital Stay) On a positive note
Diffuse Large B Cell - Abdomen Was booked in for 6no R Chop, had a mid term scan, saw specialist, who has said i will now after 4 no R Chop, have 2no GDP, same 21 day cycle, then have another scan, then a bone marrow transplant, then 3 week intense Chemo blast (3week Hospital Stay) On a positive note
Blueb
in
Non Hodgkin's Lymphoma Friends
7 years ago
Can Ibrutinib affect the vagus nerve and digestion?
So glad for you. Moms scan from September 27 shows no sign of recurrent or new mantle cell lymphoma. For past few weeks though has had nausea more loss of hearing and fatigue. Dr does not think imbruvica causing these, but I’m wondering if it can affect the vagus nerve and the ? Gastroparesis. The first
So glad for you. Moms scan from September 27 shows no sign of recurrent or new mantle cell lymphoma. For past few weeks though has had nausea more loss of hearing and fatigue. Dr does not think imbruvica causing these, but I’m wondering if it can affect the vagus nerve and the ? Gastroparesis. The first
9229Schaeffer
in
CLL Support
7 years ago
Mantle cell-imbruvica
Mom diagnosed with mantle cell lymphoma. Taking imbruvica 3capsules daily for a year. Within last couple months noticed bad nausea after eating. Have been on very limited diet. Dr thinks possible gastroparesis. Has anyone else experienced this?
Mom diagnosed with mantle cell lymphoma. Taking imbruvica 3capsules daily for a year. Within last couple months noticed bad nausea after eating. Have been on very limited diet. Dr thinks possible gastroparesis. Has anyone else experienced this?
9229Schaeffer
in
CLL Support
7 years ago
More Advice Needed Please re low B12 now & 10 years ago
Hi all, I've been back to the docs again today (my 2nd home at the mo!!) where I saw a more sympathetic GP. On filling her in on my previous visits she told me that as well as my ferritin being low last March (when I was pregnant and started on iron tablets) my b12 was low 10 years ago when they tested
Hi all, I've been back to the docs again today (my 2nd home at the mo!!) where I saw a more sympathetic GP. On filling her in on my previous visits she told me that as well as my ferritin being low last March (when I was pregnant and started on iron tablets) my b12 was low 10 years ago when they tested
Eoperez
in
Pernicious Anaemia Society
7 years ago
Giant Cell Arteritis - Tocilizumab - NICE
If you have had any experience of being treated with Tocilizumab for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting. Thank
If you have had any experience of being treated with Tocilizumab for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting. Thank
John_Mills
Vasculitis UK
in
Vasculitis UK
7 years ago
Biopsy report
My mom had MRM two months back.stage 2a, nodes negative (0/20) with grade3 and her2 positive.i have some doubts regarding report i.e., 1.tumor shows large areas of necrosis& focal lymphocytic response 2.focal intraductal carcinoma of solid & camedo type of high nuclear grade is seen,content of which
My mom had MRM two months back.stage 2a, nodes negative (0/20) with grade3 and her2 positive.i have some doubts regarding report i.e., 1.tumor shows large areas of necrosis& focal lymphocytic response 2.focal intraductal carcinoma of solid & camedo type of high nuclear grade is seen,content of which
Ch_balaji
in
Breast Cancer India
7 years ago
Bone marrow transplant
Hi all I have just started on blood transfusion and likely to have to have them every four/five weeks. It has also been suggested that I may be eligible for a bone marrow transplant. Does anyone have any thoughts on bone marrow transplants that they could share with me. TIA
Hi all I have just started on blood transfusion and likely to have to have them every four/five weeks. It has also been suggested that I may be eligible for a bone marrow transplant. Does anyone have any thoughts on bone marrow transplants that they could share with me. TIA
dave117
in
MPN Voice
7 years ago
ROR1 Update
Does anyone know if there are any preliminary results from any of the clinical trials involving ROR1? From what I understand, ROR1 is found on 90% or so if CLL and very little on healthy cells. I heard there is an anti-ROR1 medication in at least one clinical trial, and another trial is being planned
Does anyone know if there are any preliminary results from any of the clinical trials involving ROR1? From what I understand, ROR1 is found on 90% or so if CLL and very little on healthy cells. I heard there is an anti-ROR1 medication in at least one clinical trial, and another trial is being planned
DaleFL
in
CLL Support
7 years ago
multiple myeloma on pancreatic and pelvic as extramedullary plasmacytoma
Our Mayo Clinic psychiatrist mentioned most cancer patients have the treatment of maintenance chemotherapy in remission after five years, then these patients are able to finish the treatment in full recovery. Is it true to multiple myeloma on pancreatic and pelvic (extramedullary plasmacytoma)?
Our Mayo Clinic psychiatrist mentioned most cancer patients have the treatment of maintenance chemotherapy in remission after five years, then these patients are able to finish the treatment in full recovery. Is it true to multiple myeloma on pancreatic and pelvic (extramedullary plasmacytoma)?
chen5631867
in
Myeloma America Support
7 years ago
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