If you have been treated with Obinituzumab/Gazyva, Lymphoma Canada needs your help!
Lymphoma Canada is a support and advocacy group, based in Canada, that helps out Lymphoma patients. They are currently helping to gather information about Obinituzumab/Gazyva for the pan-Canadian Oncology Drug Review (pCODR), a government agency that makes recommendations for funding to the health ministries of the provinces.
Part of the information that the pCODR needs has to do with patient experiences with a treatment.
That's where Lymphoma Canada comes in -- they have developed a survey for Follicular Lymphoma patients whop have been treated with Obinituzumab/Gazyva.
You do NOT need to be Canadian, or live in Canada, to complete the survey.
Lymphoma Canada is a support and advocacy group, based in Canada, that helps out Lymphoma patients. They are currently helping to gather information about Obinituzumab/Gazyva for the pan-Canadian Oncology Drug Review (pCODR), a government agency that makes recommendations for funding to the health ministries of the provinces.
Part of the information that the pCODR needs has to do with patient experiences with a treatment.
That's where Lymphoma Canada comes in -- they have developed a survey for Follicular Lymphoma patients whop have been treated with Obinituzumab/Gazyva.
You do NOT need to be Canadian, or live in Canada, to complete the survey.
I've written about how important it is to be part of clinical trials to help make new treatments available to patients. Think of this as another way of helping -- the information you provide might help make this treatment available to Follicular Lymphoma patients.
I'm not sharing this because two of my grandparents were from Nova Scotia, and Montreal is one of my favorite cities in the world. It's because it's really important that we help each other out any way we can.
The message from Lymphoma Canada is below. Thanks for your help.
***********************************
I'm not sharing this because two of my grandparents were from Nova Scotia, and Montreal is one of my favorite cities in the world. It's because it's really important that we help each other out any way we can.
The message from Lymphoma Canada is below. Thanks for your help.
***********************************
Follicular Lymphoma Patient Survey
If you have follicular lymphoma and have been treated with obinituzumab (Gazyva) you can help by completing our survey.
Lymphoma Canada is preparing a submission for the panCanadian Oncology Drug Review (pCODR) for:
Obinituzumab
in combination with chemotherapy, followed by obinutuzumab maintenance,
for the treatment of patients with follicular lymphoma who relapsed
after, or are refractory to, a rituximab containing regimen.
You
can help by completing our survey, which will provide us with the
patient input required for the submission. pCODR uses this information
to help them make recommendations to the provinces and territories
regarding funding for new cancer drugs.
You do not need to live in Canada to complete this survey.
BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS TREATMENT IN CANADA.
The survey will be open until midnight Pacific Time on Friday, November 4th and should only take 10 minutes of your time.
You may access the survey at the following link:
18 comments:
Hi Bob,
I'm not sure if it's just me, but I'm unable to comment on your post. Every time I add my comment, it seems to disappear a minute later. Hopefully this comment won't disappear!
-- Ben
Still here!
Hmm... I tried cut-and-pasting my previous post, and THAT one is no longer here. I swear there is no profanity in it, so I can't fathom why it's being blocked.
I'm going to try posting the paragraphs individually, and see which ones "stick". Sorry for the multiple posts...
(1)
Hi Bob,
Thanks for posting ("Expanding Treatment Options"). Very informative, especially for newcomers to fNHL. (This was the first I'd ever heard of fenretinide being used to treat fNHL.)
(2)
The paragraph covering CAR-T mentioned clinical trials mentioned diffuse large B cell lymphoma (DLBCL) and mantle cell lymphoma (MCL), but neglected to mention our disease, follicular lymphoma, which as you know I've had personal experience with over a year ago.
(3)
I'm actually posting here to thank you for your previous CAR-T posts. Thanks to your posts, a fellow named Bill and I connected with each other in the comments section. His wife underwent CAR-T for follicular lymphoma earlier this year, and she is also currently in complete remission. We've since exchanged emails and spoken for an hour on the phone.
(4)
You had once encouraged me many months ago to start a blog. Well, for what it's worth, I finally took baby steps in that direction here: https://fnhlben.wordpress.com
(5)
I know full well what you mean when you describe how hard it is to keep updating your blog with your busy schedule. I too am so grateful I was well enough to return to full-time work less than 3 months after entering the hospital to begin the CAR-T regimen. I appreciate your ability to post as often as you do! (Coincidentally, we also visited our son a week ago, who is away at college.) I'm hoping to at least update mine on the weekends, mostly with relevant CAR-T news as I discover it during the week (especially if it pertains to us fNHL patients).
(6)
So thanks so much for creating your site in the first place, and for continuing to be an inspiration for all the rest of us fNHL patients out here.
Best regards,
-- Ben
Ben, thanks for being so persistent with the comments. And good for you for starting the blog. I'm glad that mine helps other people, but like I've said before, I'd do it for myself, even if no one else read it. So I hope having your own blog gives you some inspiration to keep learning about your disease, and maybe helping some other folks in the process.
Good luck with the blog (and the lymphoma!).
Thanks, Bob. I'm thinking now that maybe it was just a size issue. It was a long comment, although I've read that Blogger is supposed to be able to handle up to 4096 characters. Who knows? Perhaps just a lesson to keep these comments shorter!
Take care,
-- Ben
Bob
Interesting site. I've got FL. The Victoria Branch of the BC Cancer Agency sent me a letter dated Oct 12th saying "see you Feb 1st 2017." The NEXT day I got a phone call from my Onc saying OOPS... he had just seen my Bone Marrow Biopsy and said: "your bone marrow is between 90% and 95% 'involved with lymphoma.'" He seemed very surprised that given I have no symptoms other than that thing in my mesenteric bowel and am a very active 70 year old that my bone marrow was so 'involved.'
I've googled till my fingers are falling off and I can't see a terminology like 'involved with lymphoma.' Any idea what that means exactly and how serious my bone marrow being 90% to 95% involved is?
I start Chemo (R & B) Nov 3rd and 4th.
Love your site. Looks like I'll be a regular - hopefully for at least 30 years - I fancy myself living till 100. No guts no glory!
Roger by the Sea
Hi
I had 90% if BM involvement, and B-R induction. Now in Remission since 2 years. I was worried as well, as I havent found any other individual with that high degree of involvement.
Interestingly my onc has hever mentioned about the percentage of involvement beeing an indicator. If you find something, let me know.
Best regards
Tom68
Thanks for the reply. When my Onc gave "me and the misses" our welcome to cancer interview... he mostly talked about the bone marrow and he specifically mentioned: "...when the bone marrow gets involved with lymphoma over 80% we have to take action..." It seemed to me that this bone marrow measurement was the most important thing with lymphoma. He's told me that despite the "...90% to 95% involvement..." he expects I have a "90% chance of it being seriously reduced if not even put into remission."
On a related matter T68 - how did you respond to "B-R induction" - I hear it has less complications than what they did "in the old days."
Hi
I also had pleural effusion, a spleen like a soccer ball, etc...and ended-up in ER before B-R Induction started,... because of the effusion. The Doc meant, that I did my own "watch and wait" before admitting to the hospital :). So as I was running on my tooth gum, there was no question in waiting any longer with the treatment. After the third cycle ( at 3 month ) more or less all of the FL was gone. Looking back I am happy I did the Bendamustin and kept the Chop part for a potential relapse.
What I was impressed about, was the immediate impact of the Rituxan. I well remember, before B-R I was not able to sleep on either side position because of the space the spleen and the effusion took in my body. The first evening they gave me the R alone, and the next morning all pain was gone. Means the spleen and probably the effusion as well, have reduced considerably with R alone. The docs have been impressed. The only thing I might think of, is the possibility to only take R, instead of B-R at first induction, means even wait with the B for later. But am not sure of its impact to the marrow. Regarding side effects, not much. Its an easy deal I think.
Good luck and best regards
I highly recommend https://fnhlben.wordpress.com for fNHL people who have had or considering CAR-T treatment. This site focuses exclusively on fNHL CAR-T information. Be sure to click on "About" to see the comments.
Thanks, everyone, for sharing your excellent insights on CAR-T. It's always great to hear from folks about their knowledge and experience.
Bob
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