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DLBCL-in Remission and looking for others

Scubamom for two
Posts: 6
Joined: Apr 2018

Greetings,

I recently completed my treatment plan of 6 rounds of DA-R-EPOCH, 12 IT Chemo infusions, and 2 HD Methotrexate rounds and I am declared in remission.  I actually just returned from MD Anderson for my first quarterly post-remission scans and follow-up and I am still showing no signs of the cancer returning.  I do have some residual bone damage that I am told will continue to heal.  Of course, I am relieved by this outcome.  I am still struggling with finding my new "normal" though and although I can have some times where my mind is not focused on the "what if's," I am still spending too much time worrying about it coming back.  I was wondering if anyone on this forum was or is in Remission from the same type of NHL and if you would share any information about how you are doing now.  My team, who I trust completely, wants to have CT and Brain MRI's done every three months to keep close surveillance due to how aggressive the disease was.  Mostly, I am glad they are watching so closely, but it is also another trigger for worry...Anyway, just thought I would put this message out to try to get some recent and more current anecdotal reports on treatment progress and to share mine if anyone is interested.  I hope you are all well and trying to live your best life!

Cheers,

Scubamom for two

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

I think you will find that many if not most of the cases on here are DLBCL. Try reaching out on some of the threads. Just a suggestion based on my experience: if you are in remission try to put cancer out of your mind and focus on living your life. Don’t dwell on it or let it dominate your life. Just my opinion based on what I experienced with my chronic fnhl.

Scubamom for two
Posts: 6
Joined: Apr 2018

Thank you, ShadyGuy!  That is definitely great advice and I am mostly trying to do just that.  My hope is that the longer I stay in remission, the easier that will get.  I'm only 3-1/2 months post-treatment at this point.  Best wishes to you that you stay healthy!

Cheers,

Scubamom for two  

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

we will, like everyone who lived before us, die. The real shame is to not live while we are here. I used to be really into scuba. I have logged hundreds of dives in some pretty exotic locations. That is living. I no longer dive but still travel a lot, especially to Alaska and other natural areas. I hope you continue to dive and enjoy life. One life - live it.

Evarista
Posts: 177
Joined: May 2017

Hi Scubamom...Good advice from Shady. You can read our histories and treatments by clicking on our usernames when logged in, so I won't go over all that.  At 11 months post-chemo and still NED, I think I am doing "well".  Continued issues with fatigue, some peripheral neuropathy, and random inflammatory/infection events.  The fatigue dictates my lifestyle and I find that it is extremely important to pace myself.  I can do things, yes, but if I overdo them, I tank in the ensuing days.  So regular schedule is paramount.  The degree of peripheral neuropathy actually serves as an excellent early warning system if I am overdoing it. Lunch date? You betcha! Dinner at 5:30? Probably will work.  Dinner at 7:30?  Not gonna happen.  Since I am still somewhat neutropenic, I continute to avoid crowds (movies at noon on Tuesday, not 3 PM on Saturday), carry wet-wipes, and keep an eye on the food rules. I do try put anxiety aside and just carry-on.

Both of you will appreciate this, I suspect:  this week I've been forced to put aside my DLBCL anxiety because our eldest announced his summer plans. He'll be doing guess what? You got it:  ~11 weeks scuba diving somewhere in the South China Sea.  Reef restoration, rescue diving etc.  When I voiced just a little anxiousness he replied "Mom, they have a decompression chamber right there!" Sigh...Perhaps I should change my handle to Scubamom2?

So carry on, y'all, and try to keep your sense of humor. Scuba, I would love to hear more about your treatment at MD Anderson?  Did you go as a referral and, if so, how did that work?

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