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Home dialysis question
Has anyone had experience with both home hemodialysis and peritoneal dialysis? If so, what were the pros and cons for each.
Has anyone had experience with both home hemodialysis and peritoneal dialysis? If so, what were the pros and cons for each.
Yojimboken
in
Kidney Dialysis
2 years ago
To remove my port or not?
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
napa
in
CLL Support
2 years ago
Chronic Fatigue Syndrome and Fibromyalgia treatment with B12 injections and oral folate
In the category of "not helpful but interesting", I am sharing this paper decribing a research project which treated patients with Chronic Fatigue Syndrome and Fibromyalgia with B12 injections and oral folate. One interesting facet is that dose of B12 and folate is based on symptoms as reflected in clinician
In the category of "not helpful but interesting", I am sharing this paper decribing a research project which treated patients with Chronic Fatigue Syndrome and Fibromyalgia with B12 injections and oral folate. One interesting facet is that dose of B12 and folate is based on symptoms as reflected in clinician
WiscGuy
in
Pernicious Anaemia Society
2 years ago
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COVID-19 UPDATES - The latest experimental therapies - not CLL specific, but potential treatment for COVID-19 in many cancer patients
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
lankisterguy
Volunteer
in
CLL Support
2 years ago
Roof insulation quandry
This is indirectly a concern for those of us with breathing issues , plus your future option for equity release if you own your home. And can inpact on the value of your home. People were told that foam insulation in the loft was the bees knees , it was backed by the government and now it comes to light
This is indirectly a concern for those of us with breathing issues , plus your future option for equity release if you own your home. And can inpact on the value of your home. People were told that foam insulation in the loft was the bees knees , it was backed by the government and now it comes to light
katieoxo60
in
Lung Conditions Community Forum
2 years ago
Tummy alterations.
Fairie please try some probiotics they really help the tummy a lot. I get on and off terrible workings of the tummy especially diring very stressful times and i take probiotics and Bevispas or Colofac. It helps a lot. Please consider them. Nice to chat with you.
Fairie please try some probiotics they really help the tummy a lot. I get on and off terrible workings of the tummy especially diring very stressful times and i take probiotics and Bevispas or Colofac. It helps a lot. Please consider them. Nice to chat with you.
emmamyrna24
in
Anxiety and Depression Support
2 years ago
Chronic Fatigue Syndrome
The largest ever DNA study of ME/CFS is available to register online. ME/CFS and FMS are similar in symptoms. Some people may suffer from both or all. This study is interesting to us Fibromyalgia individuals as the study looks at fatigue a major symptom of Fibro, the trial, Yes a trial! is looking at
The largest ever DNA study of ME/CFS is available to register online. ME/CFS and FMS are similar in symptoms. Some people may suffer from both or all. This study is interesting to us Fibromyalgia individuals as the study looks at fatigue a major symptom of Fibro, the trial, Yes a trial! is looking at
does-the-NHS-work
in
Fibromyalgia Action UK
2 years ago
Introduction: I'm new here
Hi my name is Jay and I just wanted to introduce myself. My husband has vasculitus which has aggressively attacked his kidneys so he will need a kidney transplant once the condition is under control. At the moment he is on dialysis 3 times a week. We only found out how ill he was in November 2021 so
Hi my name is Jay and I just wanted to introduce myself. My husband has vasculitus which has aggressively attacked his kidneys so he will need a kidney transplant once the condition is under control. At the moment he is on dialysis 3 times a week. We only found out how ill he was in November 2021 so
Kanjee18
in
Vasculitis UK
2 years ago
Night sweat relief?
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
9RGBZ
in
CLL Support
2 years ago
Working with CLL!
Hello all, I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey! I work
Hello all, I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey! I work
MDcard
in
CLL Support
2 years ago
What does curing CLL mean?
This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers
This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers
CoCoLuna11
in
CLL Support
2 years ago
"Sailing with CLL" - a sense of humor may help....
"Aboard" and "Port" are two terms which I heard in past days during my medical care: Routinly I am asked by the Cancer Clinic lab technician: "Do you have a port?" I do not. But at this moment I smile and I am tempted to say: "Yes, my port is Santo Domingo!" and I sense a bit euphoria: When I retired
"Aboard" and "Port" are two terms which I heard in past days during my medical care: Routinly I am asked by the Cancer Clinic lab technician: "Do you have a port?" I do not. But at this moment I smile and I am tempted to say: "Yes, my port is Santo Domingo!" and I sense a bit euphoria: When I retired
janvog
in
CLL Support
2 years ago
Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?
Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc. I was diagnosed in October 2021
Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc. I was diagnosed in October 2021
Luv2Craft
in
CLL Support
2 years ago
To continue or not....that is the question
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
Dawson21
in
CLL Support
2 years ago
I Have Just Completed My 12 Month CLL Treatment Plan
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
DanBro1
in
CLL Support
2 years ago
Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
CLLerinOz
Administrator
in
CLL Support
2 years ago
DE Embryo FET - 2nd failed :(
Just looking for a bit of solidarity and advice. Our 1st DE embryo transfer ended in a MMC in October discovered at our viability scan. It was a 5AA embryo which stopped growing around 5.5 weeks. It was utterly devastating. We have just had a BFN from our 2nd DE embryo transfer. It was a 4AB embryo
Just looking for a bit of solidarity and advice. Our 1st DE embryo transfer ended in a MMC in October discovered at our viability scan. It was a 5AA embryo which stopped growing around 5.5 weeks. It was utterly devastating. We have just had a BFN from our 2nd DE embryo transfer. It was a 4AB embryo
JenRoy
in
Fertility Network UK
3 years ago
Shingles vaccine for cll patients
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
Splashes
in
CLL Support
2 years ago
Leukemia & Lymphoma Society (USA) provides a LLS Clinical Trial Nurse Navigator to assist you throughout the entire clinical trial process
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
lankisterguy
Volunteer
in
CLL Support
2 years ago
Ibrutinib Resistance
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Adel1
in
CLL Support
2 years ago
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