CLL Support group in Toronto canada: Hello... - CLL Support

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CLL Support group in Toronto canada

Curling123 profile image
15 Replies

Hello fellow Canadians, specifically Torontonians. Any one aware of a CLL support group that meets together on a weekly/monthly basis?

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Curling123 profile image
Curling123
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15 Replies
Cmac70 profile image
Cmac70

Hi there I am also from Ontario, about an 1 1/2 east of Toronto. I have not heard of any CLL support groups in the area. However I would be very interested in joining one. For me this site is a great support group but it would be nice to have a small local group where you could meet people face to face who are dealing with the same issues.

Chris

Curling123 profile image
Curling123 in reply to Cmac70

Yes, I agree, Chris. Where abouts are you exactly? I was hoping there would be one already existing to join that is why I put out this message. Anyone else out there interested? Even if we met once a month for those further out of the city, it would be nice to meet and share face to face.

Bell53 profile image
Bell53

Hi Curling123

I live in Toronto and am not aware of any current groups.

There was a survey that came out from the CLL Society late last year that was gathering info on who would be interested in attending meetings but I have not heard anything more about it since I responded.

I indicated that I was interested and would welcome the opportunity to meet with fellow Cll’ers

I was surprised that in a city of this size that we don’t have any groups. There is one in Montreal

Regards

Heather

Teegolf47 profile image
Teegolf47 in reply to Bell53

We are actively pursuing starting a CLL Society sponsored support group in Toronto. We had some issues after the survey data was collected but I am confident there will be a group started in the next few months. From what we saw, there is a great deal of interest in forming a group.

Terry Evans

Director of Support Services

CLL Society

Curling123 profile image
Curling123 in reply to Teegolf47

How will we find out when it will be up and running?

Teegolf47 profile image
Teegolf47 in reply to Curling123

We will be posting information on Health Unlocked as soon as we have a meeting time and location identified. Be patient because the process generally moves slowly. We have found just getting a meeting location can be a long process. The day and the time of the meeting has to meet the majorities schedule as well. But it will happen. This will be our 32nd CLL Society CLL Support group, and are anxious to get it going.

Curling123 profile image
Curling123 in reply to Teegolf47

Thank you. Looking forward to it happening Terry. Gather you are a golfer with a name like Teegolf as I am a curler?

Cmac70 profile image
Cmac70 in reply to Teegolf47

I would be interested in joining such a group.

Curling123 profile image
Curling123 in reply to Bell53

Yes, I am surprised too considering the largest province/city.

Curling123 profile image
Curling123 in reply to Bell53

Thanks for reply. Hopefully if and when one is up and running, we will be notified quickly. Looks like the CLL Society is on it’s way to creating one. Certainly the interest is there.

Bell53 profile image
Bell53 in reply to Curling123

Hi Curling

I noticed you mentioned you had an appointment with your Cll specialist on April 26. If you don’t mind my asking. How did it go?

Regards

Heather

Curling123 profile image
Curling123 in reply to Bell53

Yes, I did with Dr Spaner at Sunnybrooke. He went over my FISH results. 17p, 11q, 13q. Not the best, but it is what it is. Have no symptoms. Diagnosed in February this year. A few small nodes in neck, had one biopsied. Result CLL. Awaiting a CT scan and had blood tests at appointment with Dr. Spaner. Lymphocytes up a bit from February, 3.2 in February, now 4.00. Was just finishing with a cold so hoping that is why it was higher. Scheduled to go back in June for more blood tests. Guess I am on W&W for now.

bkoffman profile image
bkoffmanCLL CURE Hero

Hi, We are in the process of forming a CLL Society patient and care giver support group in Toronto, but the folks who were going to help facilitate have had some health challenges. We have several signed up and ready to go. If you are interested in facilitating (we train you and fly you down to Orange County, CA), please reach out to me and fill out the interest survey on our website (toronto-cll.questionpro.com) . Let's make this happen soon. Stay strong. We are all in this together. Brian Koffman CLLSociety.org

laldoroty profile image
laldoroty in reply to bkoffman

Hi, I am new to all this, just diagnosed with CLL in September 2019. I live in Oakville and would be interested in joining a support group based in Toronto. Please pass on any information about one. My email is laldoroty@gmail.com

Thanks

bkoffman profile image
bkoffmanCLL CURE Hero in reply to laldoroty

Hi,

Joining a CLL specific support group is a smart move. It has sure helped me.

Here are the details on the CLL Society's Toronto Support Group for the last meeting and contact info. Mark is a great group leader: cllsociety.org/event/toront...

We have 30 groups in the US and one in Montreal and Toronto. Maybe Vancouver next?

Stay strong. We are all in this together

Brian Koffman (CLLSociety.org)

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