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Experiences with
Small lymphocytic lymphoma (SLL)
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DHEA supplements?
Advice please! As I have frequently moaned about here, the last 3 years have resulted in a steadily increasing disability for me, especially with regards to fatigue and effort intolerance. I'm now at the point where I am more or less housebound and spend most of the day in my armchair. Neither my rheumy
Advice please! As I have frequently moaned about here, the last 3 years have resulted in a steadily increasing disability for me, especially with regards to fatigue and effort intolerance. I'm now at the point where I am more or less housebound and spend most of the day in my armchair. Neither my rheumy
whisperit
in
LUPUS UK
5 years ago
O-CHOP
Hi everyone. Back with an update. New diagnosis: Follicular B, Stage IV, Grade 2. (was Grade 1) Previous treatment was Rituxan and Bendamustine, remission, shingles and it's baaaaack. Has anyone had O-CHOP? Obinutuzunab, Cyclophosphamide, Doxorubicin, Vincristine. Am scheduled for infusion 1\29,30,31
Hi everyone. Back with an update. New diagnosis: Follicular B, Stage IV, Grade 2. (was Grade 1) Previous treatment was Rituxan and Bendamustine, remission, shingles and it's baaaaack. Has anyone had O-CHOP? Obinutuzunab, Cyclophosphamide, Doxorubicin, Vincristine. Am scheduled for infusion 1\29,30,31
kstan8
in
Non Hodgkin's Lymphoma Friends
5 years ago
Outstanding third opinion.
I had to get a third opinion because the first doc said at the first visit no treatment until see symptoms. When I went back after bone marrow and lymph node taken out she said I needed treatment but I feel great. I didnt feel comfortable with that so found a cll specialist. Much more knowledgable. Told
I had to get a third opinion because the first doc said at the first visit no treatment until see symptoms. When I went back after bone marrow and lymph node taken out she said I needed treatment but I feel great. I didnt feel comfortable with that so found a cll specialist. Much more knowledgable. Told
showdog
in
CLL Support
5 years ago
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World Health Organization lists "vaccine hesitancy" as a global health threat
[i]"Vaccine hesitancy, where people are reluctant or refuse to have themselves or their children vaccinated, is a growing trend among those fearing negative health outcomes from immunizations, such as the (non-existent) risk of autism. This collective uncertainty has now gathered such momentum that the
[i]"Vaccine hesitancy, where people are reluctant or refuse to have themselves or their children vaccinated, is a growing trend among those fearing negative health outcomes from immunizations, such as the (non-existent) risk of autism. This collective uncertainty has now gathered such momentum that the
AussieNeil
Partner
in
CLL Support
5 years ago
Starting Bendamustine tomorrow
Hi there! I’m a bit anxious about what’s to come - just dx w Stage 3a Follicular NHL. I had Rituxan 2 days ago and it went pretty well. What can I expect as I start the chemo? I’ve read up on all of the possibilities but thought I should ask some real warriors! Thanks so much 🙏🏼
Hi there! I’m a bit anxious about what’s to come - just dx w Stage 3a Follicular NHL. I had Rituxan 2 days ago and it went pretty well. What can I expect as I start the chemo? I’ve read up on all of the possibilities but thought I should ask some real warriors! Thanks so much 🙏🏼
Finschick
in
CLL Support
6 years ago
Follicular Lymphoma
Hello, I was diagnosed with Follicular Lymphoma in February. I’ve already had 4 sessions of RITUXAMAB. The doctors are happy that most cancer cells are gone but it’s incurable as there are dormant cells still in me. I’m interested to hear about other people’s stories, your diet, lifestyle changes etc
Hello, I was diagnosed with Follicular Lymphoma in February. I’ve already had 4 sessions of RITUXAMAB. The doctors are happy that most cancer cells are gone but it’s incurable as there are dormant cells still in me. I’m interested to hear about other people’s stories, your diet, lifestyle changes etc
CraigWilson
in
Lymphoma Canada
6 years ago
Chemo-Free Treatment Best Option for CLL Patients Under 70
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
GlennSabin
in
CLL Support
6 years ago
High Platelet count
Had blood work done this morning for a hepatologist appointment next week. Less than 3 hours later got a call from the Dr.'s office; high platelet count (I haven't seen the numbers yet). The recommendation is that I see a hematologist. Any one else have high platelet count? I checked and there were
Had blood work done this morning for a hepatologist appointment next week. Less than 3 hours later got a call from the Dr.'s office; high platelet count (I haven't seen the numbers yet). The recommendation is that I see a hematologist. Any one else have high platelet count? I checked and there were
kp1234
in
PBC Foundation
6 years ago
Wife just diagnosed with CLL too!
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
Walt424
in
CLL Support
6 years ago
Safety Analysis of Four Randomized Controlled Studies of Ibrutinib in Patients With Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma
https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(18)30265-9/fulltext Results The median treatment duration was 13.3 months (maximum, 28.2 months) for ibrutinib and 5.8 months (maximum, 27.3 months) for comparators. When adjusted for exposure, diarrhea, atrial fibrillation, and hypertension
https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(18)30265-9/fulltext Results The median treatment duration was 13.3 months (maximum, 28.2 months) for ibrutinib and 5.8 months (maximum, 27.3 months) for comparators. When adjusted for exposure, diarrhea, atrial fibrillation, and hypertension
lankisterguy
Volunteer
in
CLL Support
6 years ago
MCL
My father is being treated with ibrutinib for mantle cell lymphoma. His platelets are very low and don’t pick up after transfusion. They have stopped his 4 tablets/day of ibrutinib as he now has an infection. Has anyone else experienced this?
My father is being treated with ibrutinib for mantle cell lymphoma. His platelets are very low and don’t pick up after transfusion. They have stopped his 4 tablets/day of ibrutinib as he now has an infection. Has anyone else experienced this?
Ibrut
in
Lymphoma Canada
6 years ago
Multivitamins
I have spent a lot of time searching for the best iron free multivitamin. I know someone here posted that the vit A should be as beta carotene. Suggestions?
I have spent a lot of time searching for the best iron free multivitamin. I know someone here posted that the vit A should be as beta carotene. Suggestions?
gwillistexas
in
PBC Foundation
6 years ago
Great article about Nobel winner Jim Allison also gives some theory
https://www.wired.com/story/meet-jim-allison-the-texan-who-just-won-a-nobel-cancer-breakthrough/ The article has some surprisingly good explanations of parts of the immune system. [i]" (Lymph nodes are like Rick’s in Casablanca. Good guys, bad guys, reporters and soldiers, macrophages, dendrites, T and
https://www.wired.com/story/meet-jim-allison-the-texan-who-just-won-a-nobel-cancer-breakthrough/ The article has some surprisingly good explanations of parts of the immune system. [i]" (Lymph nodes are like Rick’s in Casablanca. Good guys, bad guys, reporters and soldiers, macrophages, dendrites, T and
SeymourB
in
CLL Support
6 years ago
What is Lymphoma ?
This is a good explanation both for newly diagnosed patients and those of us who need a refresher to help our understanding of the illness . The more we understand, the better equipped we are to deal with treatment decisions and the less fearful we will be of the medical terminology when talking with
This is a good explanation both for newly diagnosed patients and those of us who need a refresher to help our understanding of the illness . The more we understand, the better equipped we are to deal with treatment decisions and the less fearful we will be of the medical terminology when talking with
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
6 years ago
LOW GRADE HAS TRANSFORMED TO HIGH GRADE, RChop next.what to expect ?
Hi all, I've been dealing with low grade B cell lymphoma since 2016, treatment was Gazyva. It came back in about 6 months and I've been on w&w since my blood numbers have been okay. Symptoms started ramping up over the summer and I was going to do treatments but my blood numbers were pretty much in the
Hi all, I've been dealing with low grade B cell lymphoma since 2016, treatment was Gazyva. It came back in about 6 months and I've been on w&w since my blood numbers have been okay. Symptoms started ramping up over the summer and I was going to do treatments but my blood numbers were pretty much in the
skinkade
in
Non Hodgkin's Lymphoma Friends
6 years ago
13 Q DELETION, JUST GOT THE FISH REPORT DONT KNOW WHAT IT MEANS, CLL
hello, i just got my mothers reports of FISh it says 13 q deletion, i dont understand what that means, it would be very helpful if i can understand in layman's language and what it means, i am just very scared of the report, i am not going to the doctor as the report of karyotyping is still pending.
hello, i just got my mothers reports of FISh it says 13 q deletion, i dont understand what that means, it would be very helpful if i can understand in layman's language and what it means, i am just very scared of the report, i am not going to the doctor as the report of karyotyping is still pending.
ABHINAVGARG
in
CLL Support
6 years ago
FDA Approves Duvelisib for CLL and Follicular Lymphoma - Sep 24, 2018
FDA Approves Duvelisib for CLL and Follicular Lymphoma Published: Monday, Sep 24, 2018 The FDA has approved duvelisib (Copiktra) for the treatment of patients with relapsed/refractory chronic
lymphocytic
leukemia/
small
lymphocytic
lymphoma
(CLL/SLL) or relapsed/refractory follicular lymphoma.
FDA Approves Duvelisib for CLL and Follicular Lymphoma Published: Monday, Sep 24, 2018 The FDA has approved duvelisib (Copiktra) for the treatment of patients with relapsed/refractory chronic
lymphocytic
leukemia/
small
lymphocytic
lymphoma
(CLL/SLL) or relapsed/refractory follicular lymphoma.
lankisterguy
Volunteer
in
CLL Support
6 years ago
Clinical Trial Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab Untreated CLL & SLL @EU & UK locations
A Study of the Combination of Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab for the First-line Treatment of Participants With Chronic
Lymphocytic
Leukemia (CLL)/
Small
Lymphocytic
Lymphoma
(SLL) Phase 3- Radomized Open Label https://clinicaltrials.gov/ct2/show/study/NCT03462719?
A Study of the Combination of Ibrutinib Plus Venetoclax Versus Chlorambucil Plus Obinutuzumab for the First-line Treatment of Participants With Chronic
Lymphocytic
Leukemia (CLL)/
Small
Lymphocytic
Lymphoma
(SLL) Phase 3- Radomized Open Label https://clinicaltrials.gov/ct2/show/study/NCT03462719?
lankisterguy
Volunteer
in
CLL Support
6 years ago
Ginger oil
I've heard that massaging with ginger oil is good for lymphoedema. It's quite expensive so before I buy has anyone tried it? And did it help? Thanks.
I've heard that massaging with ginger oil is good for lymphoedema. It's quite expensive so before I buy has anyone tried it? And did it help? Thanks.
holly-bush1
in
LSN
6 years ago
Has anyone heard of MALT B CELL LYMPHOMA
I was visiting with a friend that had almost 100% symptoms like I do and did that was diagnosed with MALT B cell lymphoma and treated for it.
I was visiting with a friend that had almost 100% symptoms like I do and did that was diagnosed with MALT B cell lymphoma and treated for it.
ozarkharper
in
CLL Support
6 years ago
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