22 yr old with recent DLBCL diagnosis stage 4

Hi Indieruns and welcome to this corner of the Macmillan Online Community but sorry to hear about your son.

I am Mike Thehighlander and I help out across our blood cancers groups. I have a different type of stage 4 NHL but did have a treatment that was not a lot different from R-CHOP and if it did the job for a 58 year old it will do it for him.

Over my years on the site we have had a few 20 somethings go through treatment so let’s see if they are still looking in.

How is he getting in with his treatment?

He is handling the RCHOP chemo well so far ! The intrathecal gave him

a severe spinal headache the first time despite all the precautions etc the 2 Nd one wasn’t too bad he had had the 3rd one 2 days ago so far fingers crossed no major headaches ! 

it would be great for him ( TJ) to connect with someone his age and it’s really hard to find this diagnosis in the 20 something year olds as it’s rare in that age group! 

Sounds as though things are going ok compared to many others who have posted over the years.

We do have a general cancer group Diagnosed at a young age but it’s not that busy but as with most groups the folks who post are just the tip of the iceberg as many people just lurk and never post until something catches their eye.

Have you searched FaceBook as there must be some US specific groups not only for NHL bit for young people in general going through treatments.

We have a few in the UK but membership is often limited to being in the UK.

Thanks Mike

yesni have reached out to several organizations here in the US and haven’t yet found anyone or connections at this time hence looking outside the US! 

He had some serious scares after the first RCHOP treatment due to bleeding and HGB down at 4.1 requiring transfusions!

For now getting a better handle of things !  

This is all sounds rather normal, but it is clever poison that is going into his body so some fall out is to be expected.

It is very important that he is drinking lots so that is about 3 pints (in US quantities) of water every day during and between treatments as this is the main thing he can do to protect his kidneys and clear out the bad cells released by the Chemo.

Absolutely that along with coconut water !!! 

Coconut water !!!! new one on me

Hi there,

I hope your son is doing ok.

My husband was diagnosed with DLBCL in 2013 (he was 25 at the time). He had intensive chemotherapy, R-CODOX-M/IVAC, and was an inpatient for 4 months. He had some really tough times, and things didn’t look good, but he came out the other side and is now almost eight years in remission.

Just to give you a bit more hope - he went on to finish his final year at university, graduated, we got married, did lots of lovely things - holidays etc, and we’ve now two beautiful children.

It obviously was a really scary time, but positive thinking and determination goes a long way, paired with amazing treatment on offer.

I really hope this gives you a bit of encouragement!

Thank you for your reassuring message! Holding on to the positive spirit and hope as we navigate this one day at a time ! 

best wishes to you and your husband and kids ! God bless 

1. My friend was diagnosed with triple hit high grade b cell non Hodgkin's lymphoma. She's al.ost 40 we are in the u.s. she is about to start her third round of chemo .