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Experiences with
Cutaneous T cell lymphoma (CTCL)
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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
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
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
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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
GCA and Tocilizumab
I am taking the above for GCA and have had two infusions and two injections. My latest bloods are great re CRP and ESR but I now have high cholesterol - 7 - not sure how bad 7 is and whether the drug has caused it. I have never had high cholesterol before. Also I have a bad cough, which I think I caught
I am taking the above for GCA and have had two infusions and two injections. My latest bloods are great re CRP and ESR but I now have high cholesterol - 7 - not sure how bad 7 is and whether the drug has caused it. I have never had high cholesterol before. Also I have a bad cough, which I think I caught
christine2715
in
PMRGCAuk
7 years ago
Hot flushes (and gratuitous baby photo).
I know we've discussed this before and I am much more in control of hot flushes now. I was wondering.... I moved smoothly from menopausal hot flushes to steroidal (or is it PMR I forget) flushes and now get one or 2 flushes in 24 hours, always one once I have got up for the loo around 6/7am. Do the
I know we've discussed this before and I am much more in control of hot flushes now. I was wondering.... I moved smoothly from menopausal hot flushes to steroidal (or is it PMR I forget) flushes and now get one or 2 flushes in 24 hours, always one once I have got up for the loo around 6/7am. Do the
IdasMum
in
PMRGCAuk
7 years ago
Desensitization with Rituxan
Has anyone done the desensitization protocol with Rituxan? I have had two anaphylactic reactions from prior Rituxan so I'm very apprehensive. I have splenic marginal zone lymphoma/ CLL. Let me know your experience please.
Has anyone done the desensitization protocol with Rituxan? I have had two anaphylactic reactions from prior Rituxan so I'm very apprehensive. I have splenic marginal zone lymphoma/ CLL. Let me know your experience please.
Jackieyar
in
Non Hodgkin's Lymphoma Friends
7 years ago
Bone marrow transplant for Behcet's
I'd have to be much further along than I am to consider this, but this is amazing: "Complete resolution... complete remission." https://academic.oup.com/rheumatology/article/53/6/1136/1826109/Bone-marrow-transplantation-for-Behcet-s-disease-a
I'd have to be much further along than I am to consider this, but this is amazing: "Complete resolution... complete remission." https://academic.oup.com/rheumatology/article/53/6/1136/1826109/Bone-marrow-transplantation-for-Behcet-s-disease-a
julietoo
in
Behçet's UK
7 years ago
Lymphoma may have returned already?
I finished taking a full round of Gazyva last December after being diagnosed in June. I had no previous warning until night sweats and fevers hit last spring and I quickly went into full symptom mode. My results were almost instant with my first Gazyva treatment and all my blood numbers started to improve
I finished taking a full round of Gazyva last December after being diagnosed in June. I had no previous warning until night sweats and fevers hit last spring and I quickly went into full symptom mode. My results were almost instant with my first Gazyva treatment and all my blood numbers started to improve
skinkade
in
CLL Support
7 years ago
Finally obtained my test results from GP
It took about 3 weeks but I have them.... Anyone fancy trying to interpret these? My plan was to privately re-test my Thyroid in December (approx 3 months after the first lot to rule out thyroid levels being impacted due to illness/viral recovery) I can only post one picture but I have these results
It took about 3 weeks but I have them.... Anyone fancy trying to interpret these? My plan was to privately re-test my Thyroid in December (approx 3 months after the first lot to rule out thyroid levels being impacted due to illness/viral recovery) I can only post one picture but I have these results
Hd7481
in
Thyroid UK
7 years ago
Posting on CAR-T, BLAM, WLADand improved PFS with Venetoclax =R versus Bendamustine +R
Hi, I have been little too busy and way too sick with a slowly resolving chest infection to stay well engaged with the list, but I have been posting almost twice a week on our website in honor of Blood Cancer Awareness Month (#BCAM) and World Lymphoma Awareness Day (#WLAD). I am trying to rest but
Hi, I have been little too busy and way too sick with a slowly resolving chest infection to stay well engaged with the list, but I have been posting almost twice a week on our website in honor of Blood Cancer Awareness Month (#BCAM) and World Lymphoma Awareness Day (#WLAD). I am trying to rest but
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Bone Marrow Transplant, Sickle Cell in Bermuda
The October-December edition of African Sickle Cell News & World Report deals principally with Bone Marrow Transplant for SCD. 3 families on the African continent share stories of their road to a successful transplant. With so few having SCD in Bermuda (just 88), exactly what does the Bermuda SC Association
The October-December edition of African Sickle Cell News & World Report deals principally with Bone Marrow Transplant for SCD. 3 families on the African continent share stories of their road to a successful transplant. With so few having SCD in Bermuda (just 88), exactly what does the Bermuda SC Association
sicklecellnews
in
Sickle Cell Society
7 years ago
Long term treatment for 11q
As some may know, I am 25 years old diagnosed with CLL 11q deletion. One of my recent consultants has been Dr. Aman at the James Center who works under Dr. Byrd. We had a phone call and he told me, as I've come to expect, that he would treat me with the next 50 years in mind vs. A traditional CLL patient
As some may know, I am 25 years old diagnosed with CLL 11q deletion. One of my recent consultants has been Dr. Aman at the James Center who works under Dr. Byrd. We had a phone call and he told me, as I've come to expect, that he would treat me with the next 50 years in mind vs. A traditional CLL patient
Cpt_N
in
CLL Support
7 years ago
GVHD after a stem cell transplant
I had a stem cell transplant from a non-related donor almost four months ago and got graft versus host disease a couple of weeks or so later. It isn't getting any better despite several months of steroids and being on a trial of rixulitimab (spelling alert). It's in my liver and causing a spotty rash
I had a stem cell transplant from a non-related donor almost four months ago and got graft versus host disease a couple of weeks or so later. It isn't getting any better despite several months of steroids and being on a trial of rixulitimab (spelling alert). It's in my liver and causing a spotty rash
Christian057
in
CLL Support
7 years ago
Ibrutinib & neuropathy?
My husband has been on ibrutinib for 7 months & it has been working well for him with minor side effects (small rash, some joint pain) until the last month. His white blood count is coming down very slowly - still at about 60. (He is waiting to get a stem cell transplant in January & has had FCR but
My husband has been on ibrutinib for 7 months & it has been working well for him with minor side effects (small rash, some joint pain) until the last month. His white blood count is coming down very slowly - still at about 60. (He is waiting to get a stem cell transplant in January & has had FCR but
Glees
in
CLL Support
7 years ago
PMR / CRA assesment
I have had complete blood work up relative to a PMR ~ ESR 61 2-30mm/hr; LO Hemoglobin, Hematocrit, RBC, Albumin ~ HI Neutrophils, Leukocyte Esterase, Alpha 1 Globulin. Rest of flags ok. There must be food, exercise to bring these in line without use of steroids
I have had complete blood work up relative to a PMR ~ ESR 61 2-30mm/hr; LO Hemoglobin, Hematocrit, RBC, Albumin ~ HI Neutrophils, Leukocyte Esterase, Alpha 1 Globulin. Rest of flags ok. There must be food, exercise to bring these in line without use of steroids
hedgehog8
in
PMRGCAuk
7 years ago
Love your life!
My name is Alyssa, I'm 27 years old. Mother of three amazing kids! I was diagnosed with nonhodgkins lymphoma in January 2017. I underwent 4 months of chemotherapy and now I've been in remission for 4 months. I still have questions as to how I got cancer but I'm also grateful to be alive and that my body
My name is Alyssa, I'm 27 years old. Mother of three amazing kids! I was diagnosed with nonhodgkins lymphoma in January 2017. I underwent 4 months of chemotherapy and now I've been in remission for 4 months. I still have questions as to how I got cancer but I'm also grateful to be alive and that my body
Hidden
in
Non Hodgkin's Lymphoma Friends
7 years ago
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