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Double Hit Stage IV Elderly

mimosagirl
Posts: 9
Joined: Jan 2018

My father is starting DA R-EPOCH next week for double hit lymphoma. Has bulky tumor, significant weight loss.  He is 80.   It is also in his bones.  Data on results for DA R-EPOCH for double hit are scarce but I keep reading the phrase grim prognosis/clinically challenging/more studies needed.   I paid for an article in Clinical Lymphoma, Mylema, & Leukemia journal Sept. 2017 Emerging Strategies in Double Hit Lymphoma and it confirms that there is no clear path. Lots of the data is retroactive analysis and co-mingles lots of things.  There was a double hit foundation on Facebook and online but it closed a few months ago.   

I still can't isolate a % for effectiveness for R-EPOCH for double hit lymphoma.  Part of the issue is lack of information and part of it that I am new at reading studies. 

I can see if that if double hit goes into remission, there is a high chance that it will return and then patient can't do EPOCH again. 

I also see that many elderly and health-compromised people cannot tolerate R-EPOCH but I am not sure on data there either.  I would like to know more about that too.  More data.   

I just want to be as educated and informed as possible so we can help and support him and allow him to make choices that fit his wishes and preferences.  While I understand that we need to take chemo one step at a time and see how he responds, I also want to be sure we have the big global picture on this including realistic info on prognosis.   

Any help welcome. Thank you. 

Bex23
Posts: 7
Joined: Jan 2018

I don't know much about double hit, but I also had R-EPOCH for stage 2 non-Hodgkins and I am 24. I had 6 sessions 5 days of 24hr infusion and 14 days in between sessions. Every person reacts differently to chemo and R-EPOCH was tough for me to get through and increasingly difficult after about the 3rd session, and it may be very difficult, but your dad is going to be quite the fighter. I'm in remission and starting to feel better and I'm sure your dad will soon be there too. It's important to remember that every case if different and as you said, the more information you know the better. Sorry I can't be of more help but just remember to keep your head up during this process and that everyone will support you and love you, your dad, and your family. 

mimosagirl
Posts: 9
Joined: Jan 2018

Thank you for responding to me.  Your words of encouragement are deeply appreciated. 

Evarista
Posts: 265
Joined: May 2017

Hi Mimosa, sorry about your dad.  I am a 69 yo double-expressor DLBCL, already treated with DA-R-EPOCH and in remission for ~8 months.  If you want to dig into "the literature", I suggest that you go to PubMed (https://www.ncbi.nlm.nih.gov/pubmed).  Enter search term "double hit lymphoma" and you will ~270 results.  On the left side of the results page, you can limit your search to "Reviews" and to "Humans" to make it more manageable.  You can also limit to the last 5 years.  Many of the articles will not be available to you or require a fee, but you can read the abstracts and some will let you get full text. I try to look at the "Author Information" with each article so as to not be looking at anything that is not highly reputable. That's a place to start.  

As you probably know, double-hit and double expressors have a poorer prognois and a higher relapse rate.  If memory serves, the next step with relapse would be an autologus stem cell transplant.  Don't know whether your dad would be eligible, but you are not there yet, so don't worry about it yet. That's my approach.  Also, stay abreast of clinical trials at www.clinicaltrials.gov. 

Good luck with his treatments and wishing you both all the best.

mimosagirl
Posts: 9
Joined: Jan 2018

Thank you so much for taking the time to guide me to this website.  This is very helpful. Take care and best wishes to you. 

Cocamoxb
Posts: 7
Joined: Nov 2016

I was DX in May 2016 and completed DA-EPOCH-R Sept 2016. I tolorated the treatment fairly well. I was 38 and I'm 40 now. I'm in remission now and shooting for the 2-year mark as my oncologist said that once a DH-NHL patient gets to 2 years of remission, the chance of relapse is about the same as a non-cancer patient being diagnosed. So I'm close.

 

While no chemo is easy, DA-EPOCH-R can be especially challenging. Stay hydrated as best you can keep your father drinking and eating. The other thing that helped me wa electrolyte water and walking 3-4 times per day. I would do about a mile 2 times a day and my wake-up and before-bed walks were just a slow pace for about 10-15 minutes.

 

All the best to your father, you, and your family.

mimosagirl
Posts: 9
Joined: Jan 2018

Thank you so much cocomoxb for these words of encouragement!

Luckyp
Posts: 11
Joined: Feb 2018

i was 70 when I received my 6 rounds of epoch-r. That was 2 years and I tolerated it very well. I received remission after 4th treatment but was advised to continue with the 2 more. I am left with a lot of weakness in my legs but I guess that is a small price to pay for remission

mimosagirl
Posts: 9
Joined: Jan 2018

Thank you for this encouraging news.  I am sorry about your legs but thrilled to see you are in remission....take care.  

Luckyp
Posts: 11
Joined: Feb 2018

Also I never read articles older than 2016 since that is when I noticed epoch-r becoming a more standard treatment

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