Search
Search
About
Log in
Join
Experiences with
Small lymphocytic lymphoma (SLL)
Posts
Communities
788 public posts
Filter results
Ready ... Set ... Bone Marrow Biopsy
I was diagnosed in September 2018 with SLL -
Small
Lymphocytic
Lymphoma
, Stage 3. After W&W for 6 months my latest ct scan shows an increasing number of enlarging lymph nodes, particularly in my abdomen. One mass is 12 cm by 9 cm.
I was diagnosed in September 2018 with SLL -
Small
Lymphocytic
Lymphoma
, Stage 3. After W&W for 6 months my latest ct scan shows an increasing number of enlarging lymph nodes, particularly in my abdomen. One mass is 12 cm by 9 cm.
Jemorgen
in
CLL Support
5 years ago
Spots that are turning nasty! Dapsone
Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has put me one Dapsone which is bringing me out in nasty sores, they take a long time to clear. Apparently this drug helps with the very bad cough that I have all the time along with heavy mucus. Has anyone out there had a problem
Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has put me one Dapsone which is bringing me out in nasty sores, they take a long time to clear. Apparently this drug helps with the very bad cough that I have all the time along with heavy mucus. Has anyone out there had a problem
Broadbent
in
CLL Support
5 years ago
Need to know about any DSide Effects when on Venetalax/ rituximab
Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they
Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they
roszika
in
CLL Support
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Please Help!
Hello Everyone! My Husband just had a diagnose of a Follicular non Hodgkin lymphoma stage 1 on his abdomen. The doctor wants to wait 6 months to do a follow up and he doesn't want to start any treatment right now, since my husband doesn't have any symptoms related to cancer. We are very afraid to wait
Hello Everyone! My Husband just had a diagnose of a Follicular non Hodgkin lymphoma stage 1 on his abdomen. The doctor wants to wait 6 months to do a follow up and he doesn't want to start any treatment right now, since my husband doesn't have any symptoms related to cancer. We are very afraid to wait
Natalilali
in
Non Hodgkin's Lymphoma Friends
5 years ago
Probiotics Linked to Poorer Response to Cancer Immunotherapy in Skin Cancer Patients
Parker Institute and MD Anderson researchers found that diet and supplements appear to have an effect on a patient’s ability to respond to cancer immunotherapy, most likely due to changes in the patient’s gut microbiome. Among the findings: Over-the-counter probiotic supplement use was linked to
Parker Institute and MD Anderson researchers found that diet and supplements appear to have an effect on a patient’s ability to respond to cancer immunotherapy, most likely due to changes in the patient’s gut microbiome. Among the findings: Over-the-counter probiotic supplement use was linked to
wmay13241
in
Non Hodgkin's Lymphoma Friends
5 years ago
Ibrutinib. To take or not?
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Benny12
in
CLL Support
5 years ago
Hodgkin Lymphoma Conference for Adolescents and Young Adults
Join Lymphoma Canada on Saturday, April 6, 2019, at McGill University for the Hodgkin Lymphoma Conference for Adolescents and Young Adults. OUr Keynote Speaker, Dr. Nathalie Johnson, and other experts will discuss Hodgkin lymphoma - how to manage the side effects of chemo, the importance of nutrition
Join Lymphoma Canada on Saturday, April 6, 2019, at McGill University for the Hodgkin Lymphoma Conference for Adolescents and Young Adults. OUr Keynote Speaker, Dr. Nathalie Johnson, and other experts will discuss Hodgkin lymphoma - how to manage the side effects of chemo, the importance of nutrition
LCAdmin
Lymphoma Canada
in
Lymphoma Canada
5 years ago
Day 2 of hospital
Well I had an appetite today for the first time in 12 days! Food sucks but edible. I think I ate too much even though I still didn’t eat much... For some reason they didn’t start my chemo until super late last night so now it won’t be done until late Friday night. I was very lucky to have visitors
Well I had an appetite today for the first time in 12 days! Food sucks but edible. I think I ate too much even though I still didn’t eat much... For some reason they didn’t start my chemo until super late last night so now it won’t be done until late Friday night. I was very lucky to have visitors
rlyndecker
in
CLL Support
5 years ago
Update- My Imbruvica plus Venetoclax Captivate trial.
Hello, I am very pleased to report I am still MRD undetectable in the blood and bone Marrow after almost 1 year!! My Doctor prefers to say MRD- undetectable instead of MRD Negative. I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am Very very sure a placebo
Hello, I am very pleased to report I am still MRD undetectable in the blood and bone Marrow after almost 1 year!! My Doctor prefers to say MRD- undetectable instead of MRD Negative. I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am Very very sure a placebo
Hoffy
in
CLL Support
5 years ago
Stressing
Tickle in throat and feeling a little nauseous. First time ill since starting treatments. 2 sessions of BR completed. 4 more to go. I’m probably worrying but getting a cold/flu while immunity is low is concerning me today.
Tickle in throat and feeling a little nauseous. First time ill since starting treatments. 2 sessions of BR completed. 4 more to go. I’m probably worrying but getting a cold/flu while immunity is low is concerning me today.
Estate1
in
CLL Support
5 years ago
What is a non chemotherapy treatment regimen to treat CLl
I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69 since last April. Dx 2016 Alc 21 has gradually increased . However my eGFR has dropped to 44 reference no is > 59. Creatinine is 139.above the
I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69 since last April. Dx 2016 Alc 21 has gradually increased . However my eGFR has dropped to 44 reference no is > 59. Creatinine is 139.above the
Joffre1
in
CLL Support
5 years ago
Looking for CLL specialist in Denver, CO
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
jgamberg
in
CLL Support
5 years ago
Arzerra for Marginal Zone B Cell Lymphoma
My grandmother was diagnosed with marginal zone B cell lymphoma and unable to tolerate Rituxan due to infusion reactions. She is now trying Arzerra. Wondering if anyone has had Arzerra as a treatment for this as what I read shows it as a treatment for CLL.
My grandmother was diagnosed with marginal zone B cell lymphoma and unable to tolerate Rituxan due to infusion reactions. She is now trying Arzerra. Wondering if anyone has had Arzerra as a treatment for this as what I read shows it as a treatment for CLL.
Hidden
in
Non Hodgkin's Lymphoma Friends
5 years ago
Bit of waffle
Just treading water waiting for another set of PET scans and psychometry - see if any change. Bradycardia - autonomic unit at National hospital have referred me to cardiology at Uclh. Beverley Thomas did a new set of bloods -my b12 is now low and TSH is 6 - has asked gp to reheat them. So possibly
Just treading water waiting for another set of PET scans and psychometry - see if any change. Bradycardia - autonomic unit at National hospital have referred me to cardiology at Uclh. Beverley Thomas did a new set of bloods -my b12 is now low and TSH is 6 - has asked gp to reheat them. So possibly
Fusch
in
Hughes Syndrome APS Forum
5 years ago
Supporting my grandmother
Hello! My grandmother is 82 and was just diagnosed with marginal zone B cell lymphoma. She did not tolerate Rituxan so she is now taking Arzerra which, from what I can tell, is a CLL treatment. She had been fatigued and having bouts of nausea and vomiting along with lack of appetite and upon exam,
Hello! My grandmother is 82 and was just diagnosed with marginal zone B cell lymphoma. She did not tolerate Rituxan so she is now taking Arzerra which, from what I can tell, is a CLL treatment. She had been fatigued and having bouts of nausea and vomiting along with lack of appetite and upon exam,
Hidden
in
CLL Support
5 years ago
Impact of CT and pet scan on chemo drugs
I am under chemo immunotherapy of Bendsmustin and Rituximab. Finished 4 cycles and next one due on 6th March. My doctor wants me to have whole body CT and pet scan to see whether lymph nodes shrank and start the 5th Cycle Infusion. My doubt is whether the dye injected in my body while CT and pet
I am under chemo immunotherapy of Bendsmustin and Rituximab. Finished 4 cycles and next one due on 6th March. My doctor wants me to have whole body CT and pet scan to see whether lymph nodes shrank and start the 5th Cycle Infusion. My doubt is whether the dye injected in my body while CT and pet
venk_46
in
CLL Support
5 years ago
New to site
Diagnosed with Marginal Zone Lymphoma 10/18. Received 12 radiation treatments. Follow up Pet scan to be completed 2/23
Diagnosed with Marginal Zone Lymphoma 10/18. Received 12 radiation treatments. Follow up Pet scan to be completed 2/23
gardenFAIRY
in
Non Hodgkin's Lymphoma Friends
5 years ago
Venetoclax plus Rituximab
Hi, I'm new to this forum and am wondering if anyone knows of any trials of Venetoclax plus Rituximab for MZL Lymphoma ?? Can only find data from the Murano Trial for CLL. I've been offered BR treatment after Rituximab monotherapy failed, and am not so keen on starting on chemo road. Andrew
Hi, I'm new to this forum and am wondering if anyone knows of any trials of Venetoclax plus Rituximab for MZL Lymphoma ?? Can only find data from the Murano Trial for CLL. I've been offered BR treatment after Rituximab monotherapy failed, and am not so keen on starting on chemo road. Andrew
greenvert
in
CLL Support
5 years ago
Clinical trial for Imbruvica/Ibrutinib , Gazyva/Obinutuzumab +/- Venclexta/Venetoclax at 97 sites USA
A Randomized Phase III Study of the Addition of Venetoclax to Ibrutinib and Obinutuzumab Versus Ibrutinib and Obinutuzumab in Untreated Younger Patients With Chronic Lymphocytic Leukemia (CLL) https://clinicaltrials.gov/ct2/show/NCT03701282 Per Dr. Furman: "This is a large, cooperative group study.
A Randomized Phase III Study of the Addition of Venetoclax to Ibrutinib and Obinutuzumab Versus Ibrutinib and Obinutuzumab in Untreated Younger Patients With Chronic Lymphocytic Leukemia (CLL) https://clinicaltrials.gov/ct2/show/NCT03701282 Per Dr. Furman: "This is a large, cooperative group study.
lankisterguy
Volunteer
in
CLL Support
5 years ago
CoQ10 Benefits?
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Elam
in
CLL Support
5 years ago
1
...
15
16
17
...
40
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
CLL Support
503 results
Non Hodgkin's Lymphoma Friends
110 results
Lymphoma Canada
34 results
View top 10 communities
Sort by
Most Relevant
Newest