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Baby with sickle cell
My baby is currently 2 months and was diagnosed with scd ss. The doctor told me that she will still live a normal healthy life but would just require more medical attention. I want to know how early does pain episodes start and what are signs to look for? She is currently on antibiotics.
My baby is currently 2 months and was diagnosed with scd ss. The doctor told me that she will still live a normal healthy life but would just require more medical attention. I want to know how early does pain episodes start and what are signs to look for? She is currently on antibiotics.
Coucouvg3
in
Sickle Cell Society
7 years ago
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
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
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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
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
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
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
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
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
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
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
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
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