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Experiences with
Cutaneous T cell lymphoma (CTCL)
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What is it?
Ok I have a fungus in lungs. but need do lung biopsy to see which one. Not thrilled because of pain. I can't even take deep breath. Then if is have take powerful medicine. So much for bone marrow biopsy! All because of zydelig!!
Ok I have a fungus in lungs. but need do lung biopsy to see which one. Not thrilled because of pain. I can't even take deep breath. Then if is have take powerful medicine. So much for bone marrow biopsy! All because of zydelig!!
greygirl
in
CLL Support
7 years ago
Perplexing
Two painful crisis this year- had to unpaid leave! Why is sickle cell not given the same sort of respect say like diabetes?
Two painful crisis this year- had to unpaid leave! Why is sickle cell not given the same sort of respect say like diabetes?
Darrenmason1978
in
Sickle Cell Society
7 years ago
Multiple myeloma
Yo everyone I have mutiple myeloma colapse playing tennis back in may 2016 though I rip tenons and hip joint which they thought had come away from hip joint back wards forwards to doctor s for the pain in my left leg and thigh and hip joint could sleep pain was horrible got diagnosis in Feb 2017 with
Yo everyone I have mutiple myeloma colapse playing tennis back in may 2016 though I rip tenons and hip joint which they thought had come away from hip joint back wards forwards to doctor s for the pain in my left leg and thigh and hip joint could sleep pain was horrible got diagnosis in Feb 2017 with
Yobigfoot247
in
Myeloma UK
7 years ago
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FCR...the "gold standard" for CLL
Well, after all kinds of advice and doing some serious research, I decided to go to OSU James Cancer Center for treatment. Dr. Byrd will give me FCR outpatient. I start Wed. May 3. I cant sleep or do much of anything. I am anxious but relieved to finally start treatment. I am trisomy 12 simple karotype
Well, after all kinds of advice and doing some serious research, I decided to go to OSU James Cancer Center for treatment. Dr. Byrd will give me FCR outpatient. I start Wed. May 3. I cant sleep or do much of anything. I am anxious but relieved to finally start treatment. I am trisomy 12 simple karotype
queencalabrese
in
CLL Support
7 years ago
Searching for a TKO
I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original
I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original
buttrflymeme
in
Non Hodgkin's Lymphoma Friends
7 years ago
TTI 621 trial
Refractory, 3rd time after 10 mos ibrutinib. Now enrolled in clinical trial w Trillium's TTI 621, expansion phase, no rituxan. My lymph nodes after week three are growing, not shrinking. Any experience w this drug? Best to all. Thank you
Refractory, 3rd time after 10 mos ibrutinib. Now enrolled in clinical trial w Trillium's TTI 621, expansion phase, no rituxan. My lymph nodes after week three are growing, not shrinking. Any experience w this drug? Best to all. Thank you
MelindaBates
in
CLL Support
7 years ago
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
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
Now Hodgkins...
4 long weeks, 2 hospitals, and about a dozen specialists it took to diagnose my very sick husband. They were all over the board with CLL, infection, no CLL, no infection. Bmb, 2 liver biopsies, PET, CT, ultra sound. His counts are down to nothing, bilirubin sky high. Finally they told us Friday that
4 long weeks, 2 hospitals, and about a dozen specialists it took to diagnose my very sick husband. They were all over the board with CLL, infection, no CLL, no infection. Bmb, 2 liver biopsies, PET, CT, ultra sound. His counts are down to nothing, bilirubin sky high. Finally they told us Friday that
jules_c
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
Cause of Hot Flashes?
Are hot flashes caused by PMR or prednisone withdrawal, or can they be caused by either one?
Are hot flashes caused by PMR or prednisone withdrawal, or can they be caused by either one?
Steve2002
in
PMRGCAuk
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
GIANT CELL TEMPORAL ARTERITIS AND THE LINK TO SEIZURES
It is 4 years plus since I was diagnosed with GCA [double vision etc,etc] and 2 years ago when down to 1mg of Prednisolone I had a relapse. I'm down to 2.5 mg of Pred now and continuing with a slow reduction. However, last year I had a seizure and had three more since. There is a research paper by P.L.Silbert
It is 4 years plus since I was diagnosed with GCA [double vision etc,etc] and 2 years ago when down to 1mg of Prednisolone I had a relapse. I'm down to 2.5 mg of Pred now and continuing with a slow reduction. However, last year I had a seizure and had three more since. There is a research paper by P.L.Silbert
Richard2012
in
PMRGCAuk
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
Aggressive B Cell then Marginal Zone
I wad diagnosed first with Aggressive B Cell and 2 years later Marginal Zone. I had the Chop with 6 rounds, then 2 more. I still had in bone marrow. I had 6 weekly Rituxan, then one every other month for one year. I have a PET Scan on Friday and see doct5on Monday. Has anyone had the Aggressive first
I wad diagnosed first with Aggressive B Cell and 2 years later Marginal Zone. I had the Chop with 6 rounds, then 2 more. I still had in bone marrow. I had 6 weekly Rituxan, then one every other month for one year. I have a PET Scan on Friday and see doct5on Monday. Has anyone had the Aggressive first
dbalthrop
in
Non Hodgkin's Lymphoma Friends
7 years ago
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