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Mantle cell lymphoma (MCL)
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Cancer Support Groups
Do you find any support from local patient groups for people living with a cancer or specifically a lymphoma diagnosis. Have you found it helpful or do you prefer to access support online?
Do you find any support from local patient groups for people living with a cancer or specifically a lymphoma diagnosis. Have you found it helpful or do you prefer to access support online?
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
7 years ago
Follicular Lymphoma in Mesentery
Hello My doctor has told me the lymphoma has spread to lymph nodes in the mesentery ... I cannot see much about this so am asking if anyone has this condition, and if there are any special areas that need to be watched by me as a patient? My initial biopsy was under my jaw, I now also have swollen inguinal
Hello My doctor has told me the lymphoma has spread to lymph nodes in the mesentery ... I cannot see much about this so am asking if anyone has this condition, and if there are any special areas that need to be watched by me as a patient? My initial biopsy was under my jaw, I now also have swollen inguinal
Smileyman
in
Non Hodgkin's Lymphoma Friends
7 years ago
First time here
Hi everyone. I really don't know how to start and I honestly feel kind of embarrassed just throwing my business out for the entire world to see but I'm not sure what else to do. I'll keep this short, try to at least. I've been through Hodgkins Lymphoma twice, as recently as last year and beat it again
Hi everyone. I really don't know how to start and I honestly feel kind of embarrassed just throwing my business out for the entire world to see but I'm not sure what else to do. I'll keep this short, try to at least. I've been through Hodgkins Lymphoma twice, as recently as last year and beat it again
AntonioAndEmilio
in
Anxiety and Depression Support
7 years ago
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should i supplement iron?
period still fairly heavy been 6 weeks now and showing no signs of stopping i feel weak, no energy exhausted, want to sleep all the time and the usual air hunger and palpitations (propranolol not helping much now) was looking at solgar gentle iron 20mg dr knows about the period and didnt seem too concerned
period still fairly heavy been 6 weeks now and showing no signs of stopping i feel weak, no energy exhausted, want to sleep all the time and the usual air hunger and palpitations (propranolol not helping much now) was looking at solgar gentle iron 20mg dr knows about the period and didnt seem too concerned
mandy72
in
Thyroid UK
7 years ago
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
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
Anyone increased ferritin from eating pate?
Have been trying to get my ferritin levels up for about a year using solgar gentle iron. Was ok at first but have had a few episodes of gastritis type symptoms and had to stop a few times most recently a couple of weeks ago. Thought I would try liver once a week instead but cover it up in a chilli and
Have been trying to get my ferritin levels up for about a year using solgar gentle iron. Was ok at first but have had a few episodes of gastritis type symptoms and had to stop a few times most recently a couple of weeks ago. Thought I would try liver once a week instead but cover it up in a chilli and
MiniMum97
in
Thyroid UK
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
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