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Ibs flare up
Hello everyone I have been suffering from Ibs for over 20 years.I am currently going through a flare up and feeling miserable and lost.I have found it easier even though I know it’s not correct but not to eat at all.My stomach seems to prefer having absolutely nothing.I suffer from nausea and cramps
Hello everyone I have been suffering from Ibs for over 20 years.I am currently going through a flare up and feeling miserable and lost.I have found it easier even though I know it’s not correct but not to eat at all.My stomach seems to prefer having absolutely nothing.I suffer from nausea and cramps
Elena1931
in
IBS Network
5 years ago
Scottish Medicines Consortium approves Venetoclax + Rituximab Treatment for relapsed/refractory CLL
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Jm954
Administrator
in
CLL Support
5 years ago
My CLL and CAR-T story
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
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Greetings from Chaya Venkat <chaya@clltopics.net>
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
lankisterguy
Volunteer
in
CLL Support
5 years ago
Struggle with Ibs
Recently got a bad flare up with Ibs after having a large bread roll with a meal out, normally have Colofac, but not cutting it this time,so I’m taking Buscopan it’s ovet 7 hrs since I took a doseis it safe to take my 10 mg dose of amitriptilyne
Recently got a bad flare up with Ibs after having a large bread roll with a meal out, normally have Colofac, but not cutting it this time,so I’m taking Buscopan it’s ovet 7 hrs since I took a doseis it safe to take my 10 mg dose of amitriptilyne
Megs64
in
IBS Network
5 years ago
CLL Society New York City Support Group Meeting Sunday August 18, 2019 3:00pm
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
lankisterguy
Volunteer
in
CLL Support
5 years ago
CLL with with WBC over 100,000
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
Saber21
in
CLL Support
5 years ago
Kidney transplant
My husband’s GFR was 15 on his last blood test. The doctor is saying he should go on a transplant list. I heard that the immune suppressant drugs after the surgery are brutal. Those of you who’ve had transplants, (or knew someone who has) what was your/their experience? Thank you in advance ❤️
My husband’s GFR was 15 on his last blood test. The doctor is saying he should go on a transplant list. I heard that the immune suppressant drugs after the surgery are brutal. Those of you who’ve had transplants, (or knew someone who has) what was your/their experience? Thank you in advance ❤️
Christina1960
in
Vasculitis UK
5 years ago
Nulasta and a large Spleen
My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in today and he Nulasta . I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills. I read that a side
My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in today and he Nulasta . I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills. I read that a side
AuntHelen
in
CLL Support
5 years ago
LGL Leukaemia
Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.
Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.
GrannyTWest
in
CLL Support
5 years ago
Colofac versus Buscopan
I found Buscopan really helped my IBS (wind on left hand side and pain plus general feeling ill) but the GP said it had been associated with dementia so I stopped. I’m thinking of trying Colofac as peppermint capsules don’t seem to help. Anyone found Colofac helpful?
I found Buscopan really helped my IBS (wind on left hand side and pain plus general feeling ill) but the GP said it had been associated with dementia so I stopped. I’m thinking of trying Colofac as peppermint capsules don’t seem to help. Anyone found Colofac helpful?
Wifflesnook
in
IBS Network
5 years ago
Infrared sauna
Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL. Thanks
Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL. Thanks
nitram120
in
CLL Support
5 years ago
Community Guidelines
Welcome to the Myalgic Encephalomyelitis Community for support of ME/CFS! We’re very glad you have chosen to be a part of our community. The Myalgic Encephalomyelitis community - offered by HealthUnlocked (HU) - supports individuals affected by ME/CFS. Whether you are an individual who has been diagnosed
Welcome to the Myalgic Encephalomyelitis Community for support of ME/CFS! We’re very glad you have chosen to be a part of our community. The Myalgic Encephalomyelitis community - offered by HealthUnlocked (HU) - supports individuals affected by ME/CFS. Whether you are an individual who has been diagnosed
SaskiaHU
HealthUnlocked
in
Myalgic Encephalomyelitis Community
5 years ago
High creatinine normal bun
Hi there I have iga nephropathy. I got diagnosed with this last year with 1.8 creatinine. Now latest tests showed Bun 17mg and creatinine 3mg/dl.has anyone got any experience as I have heard that if creatinine is high bun is also high. Any comments please.
Hi there I have iga nephropathy. I got diagnosed with this last year with 1.8 creatinine. Now latest tests showed Bun 17mg and creatinine 3mg/dl.has anyone got any experience as I have heard that if creatinine is high bun is also high. Any comments please.
Umerpk
in
Early CKD Support
5 years ago
Ibrutinib Plus Venetoclax in Relapsed/Refractory Chronic Lymphocytic Leukemia: Update on The CLARITY Study
Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a phase II trial that combined ibrutinib with venetoclax in patients with relapsed or refractory CLL. The primary end point was eradication of MRD after
Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a phase II trial that combined ibrutinib with venetoclax in patients with relapsed or refractory CLL. The primary end point was eradication of MRD after
Jm954
Administrator
in
CLL Support
5 years ago
Experience with Fludarabine & Rituximab?
Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this
Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this
Dolce1
in
CLL Support
5 years ago
What is CAR-T therapy? An expert explains in simple terms
Not specific to CLL but informative. CAR-T therapy is a completely new type of therapy that uses the immune system to kill cancer cells. In some cases it has cured people where all other treatments have failed. Professor Karl Peggs, Scientific Director of the National Institute for Health Research (NIHR
Not specific to CLL but informative. CAR-T therapy is a completely new type of therapy that uses the immune system to kill cancer cells. In some cases it has cured people where all other treatments have failed. Professor Karl Peggs, Scientific Director of the National Institute for Health Research (NIHR
Jm954
Administrator
in
CLL Support
5 years ago
Association of gene mutations with time‐to‐first treatment in 384 treatment‐naive chronic lymphocytic leukaemia patients
First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors with time‐to‐first treatment (TTFT) in 384 treatment‐naïve (TN) chronic lymphocytic leukaemia (CLL) patients to help determine disease‐specific
First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors with time‐to‐first treatment (TTFT) in 384 treatment‐naïve (TN) chronic lymphocytic leukaemia (CLL) patients to help determine disease‐specific
Jm954
Administrator
in
CLL Support
5 years ago
New to it all
62 yo male here; was diagnosed with CLL in November of 2018. After three sets of bloodwork, a CT and a boner marrow biopsy Im told I continue on watch and wait. My only symptom is extreme fatigue which precludes me from working 8 hours a day. I should note that I’m also a long time bariatric patient.
62 yo male here; was diagnosed with CLL in November of 2018. After three sets of bloodwork, a CT and a boner marrow biopsy Im told I continue on watch and wait. My only symptom is extreme fatigue which precludes me from working 8 hours a day. I should note that I’m also a long time bariatric patient.
Pokerguy
in
CLL Support
5 years ago
CLL and Medical Marijuana
Has anyone found Medical marijuana CBD/THC tincture to be helpful with sleep and anxiety due to watch and wait stage? Injesting anything foreign is a concern with a compromised immune system but the same can be said for Chemo. ?
Has anyone found Medical marijuana CBD/THC tincture to be helpful with sleep and anxiety due to watch and wait stage? Injesting anything foreign is a concern with a compromised immune system but the same can be said for Chemo. ?
Madprofessor22
in
CLL Support
5 years ago
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