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KellyC71273's picture
KellyC71273
Posts: 1
Joined: Aug 2019

Hi! I’m new here. Just finished 6 rounds of R-EPOCH and had my PET scan that shows no evidence of disease. However, I think I need a support group because I’m scared to death that it’s going to come back. All I can find is a breast cancer survivor support group. I thought I’d come here to see if anyone had any advice. I’m from the St. Louis, MO area (Illinois side) 

po18guy
Posts: 996
Joined: Nov 2011

Great news on the pathology report! As to recurrence, that is certainly possible, but then so are any number of other cancers. At some point, we can make the conscious decision to simply live life, love life day by day and deal with the future when it arrives.

Being NED proves once again that there is no present like the present.

Almost70now's picture
Almost70now
Posts: 27
Joined: May 2019

Welcome...

 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. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Kelly, most larger cancer centers today have Survivorship programs for patients post-treatment. Checks your center. Mine has such a program: much of it is trendy in my opinion, but of value to some: Yoga, music 'therapy', dietary classes, and other activities.

Also, check with your local American Cancer Society.

max

Evarista
Posts: 261
Joined: May 2017

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.

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

I understand your fears . I too suffer from this anxiaty. I sneeze and my brain starts spinning into "what if thats something".

I was diagnosed in 2010 and have had 2 occurances and now I am in watch and wait with a few masses in my neck/jaw area.

No matter what I wake up and push through my fears because my fear isn't what got me through the tough times. The fight within myself and the support

from my family and friends.Including this forum is what keeps me going.

If your center has counseling maybe it might be something you may benafit from.

You are a fighter and strong to have been through what you have been through already. Take that strength and walk tall. your a survivor and that is somthing you can hold close to your heart and keep

walking forward.

Sending you well wishes.

 

 

Scubamom for two's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

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

lindary's picture
lindary
Posts: 652
Joined: Mar 2015

I will be in remission 4 years this Oct. I work full time (in IT) and there are so many things going on I don't think about the cancer often but there are times. My boss is a breast cancer survivor and kind of my support "team". She has helped me with my expectations of life after cancer. Mainly that life will be different but it don't mean we can't get back to the things we enjoy. 

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