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Late relapse of DLBCL Facing R-ICE and ASCT

JDinAz's picture
JDinAz
Posts: 8
Joined: Aug 2020

After a long absence, and without invitation, it is back. 

Late in 2012, I felt something on my neck that kept growing.  It was diagnosed as DLBCL and in early 2013, I went through R-CHOP followed by radiation.  All was clear until early June, 2020 when I felt a similar lump on the other side of my neck.  After 2 months of what seems like fiddle-farting around, they finally excised 2 lymph nodes (after an unsuccessful needle biopsy that infected the area and put me in the hospital for 3 days) and I have a diagnosis and a plan of action.

But, I'm now 72 yo and not in as good physical shape as I was in 2012-13.  Then I was working part time at a job where I hiked a lot and camped a lot.  Now I'm hiding from covid19 and cooking and eating a lot.  I do a "Silver Sneakers" workout 3-4 times a week, but have given up my long walks as the temps here have been 110+ every day for the last 3 months (well, actually 35 days, but it has been way too hot for this old guy).

In 2012-13, I was caring for a wife in the early stages of Alzheimer's and an adult mentally handicapped son.  I had friends who helped out when I was away at work.  Now my wife has been in a care center for 3 years and my son lives with his brother in the midwest.  My girlfriend moved in when the lockdown started, and she is a wonderful support.

So I'm facing R-ICE and then a transplant.  I know that it isn't going to be easy, but I'm strong (maybe because I need a shower and deodorant) and am determined not to be a "frail, elderly" patient.  I'll try to keep posting as I move through this.  Making new memories wasn't a goal, but I'm sure it will happen.

Any words of wisdom for this old fart would be appreciated. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

JD, Sorry about the epic ordeals you have been facing. Welcome here, I hope CSN will prove valuable to you. When I finished R-ABVD ten years ago, I had a brief discussion with my hematologist regarding what we would do if I relapsed, and he said likely R-ICE, followed (probably) with SCT. I asked about ICE, and he said it is a profoundly difficult regimine, and I have read the same various times since. Luckily, SCT is usually more successful long-term against aggressive lymphomas than indolent ones.

I enjoyed yor humor. Your spirit is what will get you through this. I speak as one Ole Fart to another !

JDinAz's picture
JDinAz
Posts: 8
Joined: Aug 2020

Max, Thanks for your kind words. congrats on 10 years in remission.  Wishing you 10+ more years to work on your bucket list.

Tomorrow I start the 3 days of in-hospital chemo.  My plan is to keep ordering more ice to munch on while getting R-ICE so I can think of the cold instead of the chemo.  Guess this is a good time to  do this, as Covid19 has kept me from the assualt I was hoping to be making on my bucket list.  After being isolated at home, I can spend time in a place with room service.  And I get the opportunity to meet some young folks (if they aren't retired yet, they are young to me) and can push a button and have company. <wink>

ShadyGuy
Posts: 535
Joined: Jan 2017

My wife and I had a one month trip planned to England, Portugal and Jerusalem. It was all cancelled due to COVID-19. Also had a motorhome trip to Alaska which was also cancelled. That effing virus ruined it all. Keep the faith and in a few months you will start checking off on that bucket list. I love your attitude. All my best my friend as you sucessfully go thru the next few weeks. Godspeed.

JDinAz's picture
JDinAz
Posts: 8
Joined: Aug 2020

I had a week in Savannah that I canceled.  Lost most of the VRBO $ and got a credit for the airline tickets.  Also was planning a road trip to Victoria, then down the Pacific coast highway from Canada to Mexico.  Oh well.  Just end up saving those $$ that I was going to blow on travel. 

Now to get through this bump in the road -- actually, shrink the lumps in my throat -- then maybe I can get back on the road and tick a few things off of the list.

May God grant us all strength.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

I grew up 100 miles up the coast from Savannah, in Charleston.  Very similiar towns, but Charleston is larger now, and clogged with tourists pretty much all year, but especially in the warmer months.   It is almost too miserable for me to drive through any more (I now live in the nw corner of SC, in the foothills of the Smokey Mountains).

If you get rescheduled, Savannah and Chas are both colonial seaports, with a rich pirate and seafaring past.  Lots of beautifully preserved architecture.   Charleston is a bit older, and was founded by English aristocrats, whereas Georgia was founded by..... jailbirds.... !   A little cross-state ribbing there.

 

max

storney
Posts: 1
Joined: Apr 2020

Hey JD, hope everything has been going well for you. I was diagnosed with DLBCL January 2019, was in remission for a year and just had a relapse. I just completed my two rounds of ICE and am heading into the bone marrow transplant on Monday. I hope all is well with you, are you now through R-ICE?

 

JDinAz's picture
JDinAz
Posts: 8
Joined: Aug 2020

Hi, Storney, I start R-ICE today.  Would love to hear how your rounds went.  Also, the best to you in your transplant.  Be strong!!

DJS628
Posts: 64
Joined: Mar 2018

Hi Storney,

Please give us an up-date and see my reply to JD.  I hope your treatments are going well.  I'll add you to my prayer list.  We are here to support each other.  I just wish the board was more active.

Take Care,

Debbie

cansur18
Posts: 5
Joined: Jul 2020

Hi Storney, praying for you that the transplant went well. You hopefully are home now continuing with your recovery. Would love to share with you the side effects from the Rice/transplant. I had lymphoma in 2015. Was in remission till 2019. Relapsed with DLBCL Feb 2020. Finished my transplant a few months ago. I'm much better but dealing with the side effects. All the best..Reu....

DJS628
Posts: 64
Joined: Mar 2018

Hi JD,

Sorry you had to join us.  You have a great attitude; keep your humor, it really helps! 

I am really surprised you had a relapse 8 years later?!  We always hear "no cancer for 5 years?  You're cured!"  Maybe not, huh?  :-( 

I will add you to my prayer list.  I hope you are tolerating your treatments so far and things with the transplant are going well?  It'll be a hard road to travel on, but it sounds like you are strong enough to deal with it.

I wish this forum was more active (it used to be) and more people could have replied to you. You can check out the Leukemia and Lymphoma Association site as well.

I had DLBCL in Sept of 2015.  Had the R-Chop treatments (3 every 21 days apart), followed by 15 radiation treatments.  I was in remission 2 months shy of 2 years (they say if you're going to relapse it usually happens within 2 years).  This was in July 2017.  I had the usual R-Chop again, minus the radiation, then was sent off for an autologous stem cell transplant.  I had that in January 2018.

I was doing well and regaining my strength and my counts were good, then like you, uninvited, it decided to show up again.  This was Sept. 2018.  That time, I had 20 radiation treatments only and this November, it'll be 2 years remission for me!

I wish you well.  Please let us know how you're doing, ok?  It'll take some time, but things will slowly get better.

---Debbie

cansur18
Posts: 5
Joined: Jul 2020

Hi JD. Hope you are making it through the process OK. I had lymphoma in 2015. Relapsed in 2019. In Feb 2020 I did the Rice protocol and bone marrow transplant. My cancer is now gone. Of course, relapse is a possibility but for now and hopfully forever gone. I am delaing with side effects of the intensive chemo. I'm much better now however would love to be of support to you through the process. Also, interested in hearing from others what side effects others have experienced. Keep in touch. Reu...

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