Sorry it took so long. I'm having trouble navagating the site (I know, no excuses).
I have not met anyone with CEL. Actually, I was unaware of that particular disease. Have you tried calling the local LLS (Natick) and ask for their 1st Connection assist? They may be able to hook you up. Being on Gleevec, you still belong here with us too. It's gret it's working so well for you. I go every 3 months and my next DF visit is 12/2. Earlier than yours?
My friend, Kathy, has a friend in Montreal on Tasagna. I'm sure, if interested, she'd ask her to email you. In addition, one of the 2 guys I recently met also switched. He's in FL now but he'd talk to you, I'm sure. BTW: Kathy is well connected. Is the 1st Connection contact for the CML LLS patients and was volunteer of the yr a couple of yrs ago.
I think we should meet too. I notified another friend on the cape, have a friend in Taunton and recently met 2 guys (1 on Tasagna) with CML locally. They both spend the winter in FL but I'll email them too so their included. We could start a CML Group for emails so we never leave anyone out. I had Club CML and then Club Blood (40 members) a few years ago. We made it a social club rather than a support group and went to dinner, beach parties, barbeques etc. Fun! I was hurt in an accident (6/08) and let it go and focused on recovery. I'm better now.
I see Dr Wadleigh at DF. They all work as a team and meet regularly to discuss anyone who's "intersting" for any reason. They have social workers that you can see if requested. I spoke with John Harraras (spelling?) initially. He was nice. There are support groups there and at the LLS Natick location 1X a month. DAngelo is one of their tops docs who I think worked with Druker but as I said, they all work together and all experts.
For the sake of convenience when we schedule a meeting, we should list our cities/towns. Maybe even share personal emails/#s then. ?
Lynda (me): Waltham..I live right off 95 exit 26 if any of you are in the area, your welcome to come by. Note: I have 2 little noisy dogs. Friendly though.
Judy: Boston area?
My friend, Kathy: Cape ) ..........emailed to ask if interested today. Expecting a "yes".
My friend, Lisa (Taunton): Haven't contacted yet but works and has a young son. May be hard for her to meet. I'll check.
Sandra: Lincoln...a woman I met at my gym
2 new guys met recently who are in FL: 1) Wakefield in summer
2) I forget but can look him up later
There are a couple of others that I've not been in touch with. If we meet I'll hunt down everyone I ever met. 1) mid state, I remember. If all showed, we'd be a group of 10/11 or so. Maybe we should start another thread entitled "CMLr's in the Boston area forming a Group"????
Very happy to meet you guys. Happy Thanksgiving!