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 That's wonderful!! No evidence of disease...doesn't get better than that when we finish treatment! I think we all worry about a recurrance... is only natural after everything we go through. But...you now need to tuck those thoughts far back in your mind and just enjoy each day to the fullest. Best wishes for continued NED!!! Sue

FNHL-stage3-grade2-typeA-diagnosed June 2010-in remission. 

Hi Kelly. I understand where you are coming from having also been through the 6 rounds of R-EPOCH (for DLBCL). I am now 2.5 years out from diagnosis with continued clean PET scans!

And I also live in a large metroplex with several big cancer centers, including the NCI-designated center where I am seen and was treated.  I'm guessing that you are encountering what I found here:  the major support program is centralized, meaning that it is located at one of the large area facilities and people must travel to it from the others.  I know people who have used it extensively and loved, loved, loved it.  Lots of warmth, activities, a place to hang out after treatment.  But since it was more than 5 miles away, I never had the energy to get over there, even though I could have made good use of it.

A few alternatives that I found:  `1) this forum; 2) the CSN Chatroom (upper left corner after you log in); 3) The LLS Community Groups at https://communityview.lls.org/sign_in; 4) the LLS online "Living with NHL" chats.  These are moderated (Social Worker) live chats that take place twice a week:  Monday 6:30 - 9 PM CT and Wednesday 11 - 1:30 PM CT. After you register with LLS, login and go here:  https://communityview.lls.org/statuses/5017  One "plus" with these chats is that they are focused on NHL patients.

Another harder-to-find resource turned up for me at one of the area cancer supply stores (specialist in wigs, scarves, lymphadema products).  The owner ran a weekly informal group, but like many groups also tended to focus on breast cancer. It just has a much larger public profile. Some community centers and religious organizations also have cancer support groups.  Good luck in finding something helpful in your area.

Greetings Kelly & Hello again Evarista,

I am also a survivor who went through 6 rounds of DA-R-EPOCH, 11 IT infusions, and two consolidation rounds of High Dose Methotrexate for DLBCL!  I have been in remission for 1-1/2 yrs now and I understand your fears about a relapse.  As you might imagine, the farther away you get from treatment when you get a great report of NED, the easier it gets.  My amazing Dr. told me at my last check-up that I now have somewhere under a 10% chance of a relapse and once I get to the 2 yr anniversary of NED, it goes down to about 2%.  Most days, I try to focus on the here and now and appreciate that my team and my body won the battle!

Now that you have finished successful treatment, hopefully you can begin to take your life back, one step at a time. The disease already took so much from us that it would be a shame to spend precious time worrying.  I know that sounds easier than it is and I still struggle at times, but I recommend that you try to gradually get back to doing the things you enjoy, try some new things that sound fun, and make sure to give yourself permission to rest when you need to.   In the end, the worrying won't change the outcome, but putting some of that energy into something fun will definitely improve our quality of life!      

Stay Strong,

Diane