DA EPOCH any experiences?

Hi  and welcome to this corner of the community but sorry to hear your Lymphoma has become stubborn.

I had a different type of NHL - Cutaneous T-Cell Lymphoma (Skin Lymphoma) but did have 6 Cycles of R-EPOCH between December and April 2013/14

The DA in DA-EPOCH is basically Dose Adjusted..... and I think it means the amount of treatment may vary during your cycles ...... interesting you are not getting Rituximab as it’s a very clever drug.

My team called R-EPOCH a ‘slow burn’ as it needed time to break the mass down..... and it was also preparing me to go on to have an Allo (donor) Stem Cell Transplant (SCT)  (I actually ended up having two)....... my story is very long but hit Thehighlander and see the long story.

By the time I went for my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted.

I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.

I got my PICC line in then went on to have 6 Cycles of R-EPOCH in between December and April 2013/14..... 5 days 24/7 so about 120hrs per hit. I went between a ward of 6 to having my own room it just depended what was available at the time.

By the end of my 2nd/3rd cycle the swelling was well down. The final cycles were used to further control the condition, I had 720+ hrs of chemo!!

I got through the Chemo ok but yes I lost ALL my hair 5 days after the first cycle :( I did at times feel sick but never was, mainly when taking medication as some of it was rank but most of the time just a bad nausea felling.

I did develop Helicobacter Pylori, a bacteria that developed ulcers and stomach inflammation. Up until this time I was doing ok with eating - even hospital food!! The 3 pack antibiotics I was given for the HP were horrendous and put me in bed for a week and I lived on soup, but I got through it.

I asked my very first nurse for some advise for getting through the Chemo and she told me....

Eat, even when you feel you can't do it try as you need fuel to get through this.

Sleep when you are tired but keep active, small but often spells of activity. So after every meal I took Laurel and Hardy (my two Chemo pumps) for a walk round the corridors of the ward. It turned out that I was actually doing about 2 miles a day. On the whole the chemo journey was ok and the exercise did help overcome some of the fatigue, sounds so counter intuitive, but exercise does actually it help.

The final tip was drink at least 2 Litres of water a day - every day until all my treatment cycles were finished and indeed all these years on I still do this.

Its hard not having visitors I am sure but having had two SCTs that had me down in Glasgow - we live in Inverness not seeing people for days was rather normal during the 4-5 weeks in the unit and yes I was in an isolation room during most of the time but did get to walk the small corridor.

Enough from me, I am sure you have more questions so do ask away.

Thank you so much Mike for the detailed reply. 

My lymphoma isn’t stubborn, yet (!), as I’m right at the outset of any treatment. The first round of RCHOP though has had a really big effect, as the mass (which was 16x10cm and squashing my lungs the vein taking blood from my brain to my heart putting me at immediate risk of some awful cardiovascular event) has very clearly reduced and I am no longer having the very scary symptoms of feeling like my head is about to pop off & breathlessness and feel better than I have in weeks. Fast growing and fast shrinking apparently. 

I’ve got a feeling that I will be continuing with the Rixumitab too as part of the cocktail but will double check. The rationale they gave me for DA Epoch over RCHOP was that I tolerated the drugs well, am relatively young and healthy (41, two young kids) and they seem to want to hit me as hard as they can with chemo to give me the best long-term prognosis for full recovery, which they statistically are giving me very positive odds on at the moment.   My consultant explained that a 4 day chemo window gives them longer to hit the cells at the exact point that they are replicating, this hopefully having a more substantial impact each cycle. I think they are perhaps using it more as a first line of attack these days. 

Thanks for those tips - interesting that you were sometimes on a ward, that hadn’t occurred to me as they told me I’d def be in an iso room with my own fridge etc (am very much taking in some of my own food as I learned how important it is to be able to wolf something you fancy down at exactly the moment takes you). A really useful tip re walking and water too. I will see whether that (laps) is possible for me - they were pretty strict with movement around because of Covid on my last stay but if I put a mask on I reckon I might get away with it. 

It’s all about horses for courses when it comes to treatment.

Worth asking if they have exercise bikes as I got one put into my room during both my SCTs and used it a lot during my first stay but was so ill with my second SCT I never was on it, I was bad I left the hospital in a wheelchair..... 

The drinking thing is so important as this is the best tool to protect your kidneys. With your type of NHL long term remission is on the cards..... some would say that when you get to 10 years post treatment ‘cure’ is possible..... I on the other hand will always have the chance it will come back. 

When I was diagnosed in 1999 I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream

Hi just to add to what has already been said the E etoposide does add a big kick to the treatment and makes it very effective, often used in the states as a first line treatment

Thank you John, that is helpful to know. The studies my doctor has shared with me have been stateside treatment using DA Epoch as first line, and the rates of success seem to be very high - in the high 90%.