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Atypical CML / MPN
Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May
Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May
Acml
in
Leukaemia Support
7 years ago
Atypical CML / MPN
Hi, (Age 69 yrs + 9 mos now) I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept.
Hi, (Age 69 yrs + 9 mos now) I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept.
Acml
in
Fight MPN
7 years ago
Leeds Forum
Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the specialist Drs and nurses. Chris did a fantastic speech about his journey through MF and a Bone marrow transplant. I was diagnosed with MF last
Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the specialist Drs and nurses. Chris did a fantastic speech about his journey through MF and a Bone marrow transplant. I was diagnosed with MF last
Skye333
in
MPN Voice
7 years ago
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Stem Cell Transplants
This might be of interest to anybody who has to undergo a stem cell transplant: http://tinyurl.com/mnkrk78
This might be of interest to anybody who has to undergo a stem cell transplant: http://tinyurl.com/mnkrk78
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
7 years ago
Bone Marrow Transplant for MCRPC
I have tried everything but chemo, and they haven't worked, so I am getting a new immune system. My next clinical trial is 'Sex-Mismatched Allogeneic Bone Marrow Transplantation for Men With Metastatic Castration-Resistant Prostate Cancer' https://clinicaltrials.gov/ct2/show/NCT02995330 I hear the
I have tried everything but chemo, and they haven't worked, so I am getting a new immune system. My next clinical trial is 'Sex-Mismatched Allogeneic Bone Marrow Transplantation for Men With Metastatic Castration-Resistant Prostate Cancer' https://clinicaltrials.gov/ct2/show/NCT02995330 I hear the
Beauxman
in
Advanced Prostate Cancer
7 years ago
COPD V STAGE, ALPHA-1ANTITYPSN,CGD
Hi my name is Connie Im 45-year-old with Aplha-1 Antitypsn zz Genetic disorder and Chronic Granumotous Disease (CGD) with several other health issues that seem to be connected with two major diseases. Im in my last stage of COPD V. I use oxygen 24/7 My O2 levels are 96-98 with oxygen yet I struggle to
Hi my name is Connie Im 45-year-old with Aplha-1 Antitypsn zz Genetic disorder and Chronic Granumotous Disease (CGD) with several other health issues that seem to be connected with two major diseases. Im in my last stage of COPD V. I use oxygen 24/7 My O2 levels are 96-98 with oxygen yet I struggle to
Cywebber
in
Lung Conditions Community Forum
7 years ago
Bone marrow transplant
I just found out from my niece that my brother had a bone marrow transplant. Was shocked no one told me. He had melanoma did a trial drug then got lymphoma.I asked who donor was? Said used own Of course cancer came back with a vengeance and was too late. So my desire to use my own right now doesn't look
I just found out from my niece that my brother had a bone marrow transplant. Was shocked no one told me. He had melanoma did a trial drug then got lymphoma.I asked who donor was? Said used own Of course cancer came back with a vengeance and was too late. So my desire to use my own right now doesn't look
greygirl
in
CLL Support
7 years ago
Jona AML
My son Jonathan 33 yrs old has AML. Is now relapsed after Stem Cell transplant and also has leukemia tumours in his skin and left eye. does any know of 't-cell' treatments /trials in the uk or any other treatments for relapsed AML.He is currently having more chemo to try and achieve remission again
My son Jonathan 33 yrs old has AML. Is now relapsed after Stem Cell transplant and also has leukemia tumours in his skin and left eye. does any know of 't-cell' treatments /trials in the uk or any other treatments for relapsed AML.He is currently having more chemo to try and achieve remission again
Strawson
in
Leukaemia Support
7 years ago
Its been a while hello all
Hi everyone its been a while since i have posted on here but just wanted to update you, I have had my stem cell transplant I won't go into gory details but if you would like to know more here is my blog http://beckyb8.wixsite.com/stemcelltransplant As far as blood clotting goes they are still unsure
Hi everyone its been a while since i have posted on here but just wanted to update you, I have had my stem cell transplant I won't go into gory details but if you would like to know more here is my blog http://beckyb8.wixsite.com/stemcelltransplant As far as blood clotting goes they are still unsure
beckyb
in
Hughes Syndrome APS Forum
7 years ago
MF and bone marrow transplant
Had another hospital appointment today and to our shock and horror Steve is now going to be fast tracked for a bone marrow transplant. His symptoms have increased and his blasts have gone from o% to 5% in three months. We still haven't seen an mpn specialist and I'm starting to lose patience with the
Had another hospital appointment today and to our shock and horror Steve is now going to be fast tracked for a bone marrow transplant. His symptoms have increased and his blasts have gone from o% to 5% in three months. We still haven't seen an mpn specialist and I'm starting to lose patience with the
afonog
in
MPN Voice
7 years ago
CLL / P17 with Mutation
My sister in law who is 60 yrs. old has been diagnosed with CLL / P17 deletion with mutation. She has BWC of 213,000 and swollen lymph nodes. She was put on Hydrea that brought it down to 177,000 then they added Imbruvica. Hopefully this will bring it down until she can have a complete stem cell transplant
My sister in law who is 60 yrs. old has been diagnosed with CLL / P17 deletion with mutation. She has BWC of 213,000 and swollen lymph nodes. She was put on Hydrea that brought it down to 177,000 then they added Imbruvica. Hopefully this will bring it down until she can have a complete stem cell transplant
evetom
in
CLL Support
7 years ago
PMR - Would appreciate feedback.
Hi All, If we wait for science to find a cause and cure for PMR I think we will be waiting a long time! I believe the answer will come from people like you and me, the ones with a vested interested and a motivation to make a break-through for the benefit of all. I should add I have achieved this on
Hi All, If we wait for science to find a cause and cure for PMR I think we will be waiting a long time! I believe the answer will come from people like you and me, the ones with a vested interested and a motivation to make a break-through for the benefit of all. I should add I have achieved this on
hiandri
in
PMRGCAuk
8 years ago
Stem cell transplant for AML 8 yrs on
Hi all as you can see from title I have been in remission for 8yrs following a HSCT from my brother. I would like to ask a question. I knew I would get lots of infections early post transplant which is to be expected. Now 8 yrs along I am still getting more than my fair share of colds, so much so I am
Hi all as you can see from title I have been in remission for 8yrs following a HSCT from my brother. I would like to ask a question. I knew I would get lots of infections early post transplant which is to be expected. Now 8 yrs along I am still getting more than my fair share of colds, so much so I am
Shazzzey
in
Leukaemia Support
8 years ago
Need a little clarity..T cell histiocyte rich B cell lymphoma
I feel like a bit out of place as I'm not a lymphoma suffer. I have a younger brother in his 30s who was diagnosed with: T cell histiocyte rich B cell lymphoma in Sept 2013 He had 6 cycles of RCHOP completed by Jan 2014. Excellent response and PET scan clear. Relapsed in October 2014 Had 4 cycles
I feel like a bit out of place as I'm not a lymphoma suffer. I have a younger brother in his 30s who was diagnosed with: T cell histiocyte rich B cell lymphoma in Sept 2013 He had 6 cycles of RCHOP completed by Jan 2014. Excellent response and PET scan clear. Relapsed in October 2014 Had 4 cycles
1Anj1
in
Non Hodgkin's Lymphoma Friends
8 years ago
Act of Love
Hi I am new to this site and looking for people based in the Uk who have scleroderma. My sister who is also my best friend was diagnosed a year to date with diffuse systematic scleroderma. She is listed as Cole57 and we are both here to read about people's experiences, share what knowledge she has from
Hi I am new to this site and looking for people based in the Uk who have scleroderma. My sister who is also my best friend was diagnosed a year to date with diffuse systematic scleroderma. She is listed as Cole57 and we are both here to read about people's experiences, share what knowledge she has from
Shelley53a
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
1st week on venetoclax - WOW, not what we expected...
After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax. My husband just stared venetoclax 20mg we are on day 6 after failing on Ibrutinib after 18months and he is 17p, 52 years old - diagnosed at 45 It has been a hell of a week with threats of TML - he had to
After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax. My husband just stared venetoclax 20mg we are on day 6 after failing on Ibrutinib after 18months and he is 17p, 52 years old - diagnosed at 45 It has been a hell of a week with threats of TML - he had to
NMMP
in
CLL Support
8 years ago
Update on my rantings of bad dental work and RA.
Well, it's been 3 days post molar #37 extraction and my swelling and pain has gone down quite a bit...But I still have RA. sigh...I had so much hope that I was one of the "lucky ones" who was misdiagnosed. :( As you might remember, I had 2 root canals with crowns done on molars #37, #26 and 2 crowns
Well, it's been 3 days post molar #37 extraction and my swelling and pain has gone down quite a bit...But I still have RA. sigh...I had so much hope that I was one of the "lucky ones" who was misdiagnosed. :( As you might remember, I had 2 root canals with crowns done on molars #37, #26 and 2 crowns
Hidden
in
NRAS
8 years ago
Autologous stem cell transplantation
Going to do autologous stem cell transplant.for relapsed follicular lymphoma. And new dbcl. After 2 weeks. Any body has been through that? Let me know please. Thanks. And God bless you all.
Going to do autologous stem cell transplant.for relapsed follicular lymphoma. And new dbcl. After 2 weeks. Any body has been through that? Let me know please. Thanks. And God bless you all.
Bhlool
in
LSN
8 years ago
Autologous Stem Cell Transplantation for MS
Autologous Stem Cell Transplantation for MS: Progression-Free Survival Seen in Nearly Half of Patients By Amy Orciari Herman Edited by David G. Fairchild, MD, MPH, and Jaye Elizabeth Hefner, MD Autologous stem cell transplantation for multiple sclerosis might help slow neurologic progression in nearly
Autologous Stem Cell Transplantation for MS: Progression-Free Survival Seen in Nearly Half of Patients By Amy Orciari Herman Edited by David G. Fairchild, MD, MPH, and Jaye Elizabeth Hefner, MD Autologous stem cell transplantation for multiple sclerosis might help slow neurologic progression in nearly
erash
in
My MSAA Community
8 years ago
Cervicogenic headache
Neurosurgeon says a
bone
spur
is irritating a major nerve coming from C2-3 in my neck. I have had neck pain and L sided headache for about 3 mos., partially relieved by Gabapentin 600 mg at bedtime and Ibuprofen 800 mg in the AM. It is exacerbated by picking up heavy objects and moving quickly.
Neurosurgeon says a
bone
spur
is irritating a major nerve coming from C2-3 in my neck. I have had neck pain and L sided headache for about 3 mos., partially relieved by Gabapentin 600 mg at bedtime and Ibuprofen 800 mg in the AM. It is exacerbated by picking up heavy objects and moving quickly.
pretysmart
in
National Migraine Centre
8 years ago
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