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Transplant Patients - SCT/BMT
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Tinkerbellcgy
in
Non Hodgkin's Lymphoma Friends
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
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
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April's Topic of the Month - Coping with Mouth & Nose Ulcers (We want to hear your tips and experiences)
Our 'Topic of the Month' discussion for April is 'Coping with Mouth & Nose Ulcers''.
Up to 45% of people who have SLE will develop oral or nasal ulcers. They are usually painless, but occasionally can be painful. We want to hear if you have any tips for preventing ulcers or coping with them
Our 'Topic of the Month' discussion for April is 'Coping with Mouth & Nose Ulcers''.
Up to 45% of people who have SLE will develop oral or nasal ulcers. They are usually painless, but occasionally can be painful. We want to hear if you have any tips for preventing ulcers or coping with them
Paul_Howard
LUPUS UK
in
LUPUS UK
7 years ago
Health Anxiety
I have had an itchy lipline and a rash under my bottom lip and have convinced my Brian that I have oral herpes. I literally went to the doctor twice to make sure it's not that and they say it isn't but I keep believing I do. I have no cold sores at all. My boyfriend and I have been together for 2 years
I have had an itchy lipline and a rash under my bottom lip and have convinced my Brian that I have oral herpes. I literally went to the doctor twice to make sure it's not that and they say it isn't but I keep believing I do. I have no cold sores at all. My boyfriend and I have been together for 2 years
Okarls
in
Anxiety 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
ulcers
Hi all anyone had a tiny lump on gum ? i cant see it has its too far back in mouth after my wisdom tooth , i wonder if this can be caused by hu , i know mouth ulcers are this feels ulcer like i worry about any little strange thing that crops up , i saw dentist in jan she didnt see it then plus i dont
Hi all anyone had a tiny lump on gum ? i cant see it has its too far back in mouth after my wisdom tooth , i wonder if this can be caused by hu , i know mouth ulcers are this feels ulcer like i worry about any little strange thing that crops up , i saw dentist in jan she didnt see it then plus i dont
catwoman2015
in
MPN Voice
8 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
Ulcers/ sores
Hi, I feel like I'm going mad and really need advice but no one seems to be able to help. I have ulcers in the back of my throat right now, yellow blisters in my nose, I'm fatigued and just want to cry, I have painful heartburn in my chest and middle of back. My head is sore where it is thinning and
Hi, I feel like I'm going mad and really need advice but no one seems to be able to help. I have ulcers in the back of my throat right now, yellow blisters in my nose, I'm fatigued and just want to cry, I have painful heartburn in my chest and middle of back. My head is sore where it is thinning and
Johubble
in
LUPUS UK
8 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
Fybromyalgia/Bechets advise please
Hi can anyone give me some advise please. I was told ages ago I have fybromyalgia, my GP did some research for me and suggested Bechets to the hospital this was instantly dismissed. I have good and bad phases of fatigue, pain, poor memory, and stiff joints. The reason Bechets was mentioned was because
Hi can anyone give me some advise please. I was told ages ago I have fybromyalgia, my GP did some research for me and suggested Bechets to the hospital this was instantly dismissed. I have good and bad phases of fatigue, pain, poor memory, and stiff joints. The reason Bechets was mentioned was because
doileyqueen
in
Behçet's UK
8 years ago
Mouth Sores and HU
Hi Everyone, I've read most of the posts regarding mouth sores. I'm suffering right now and seems worse instead of better even with salt water baking soda rinse. I'm wondering if this is considered an allergic reaction to HU or a food perhaps, an immune system problem or is it viral like a cold sore
Hi Everyone, I've read most of the posts regarding mouth sores. I'm suffering right now and seems worse instead of better even with salt water baking soda rinse. I'm wondering if this is considered an allergic reaction to HU or a food perhaps, an immune system problem or is it viral like a cold sore
DH65
in
MPN Voice
8 years ago
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