Waiting to start R-Chop Chemo after DLBCL diagnosis

Hi Sarah123456 and welcome to our corner of the community.

Sorry to hear your husband is embarking on the treatment rollercoaster but be assured that on the whole the treatment he is having is very effective.

In way of some encouragement. I was diagnosed in 1999 with a rather rare and difficult to treat Stage 4a Low Grade Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma.

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.

My chemo was different and had me in hospital for 5 days/nights for each of my 6 cycles. R-CHOP is less demanding time wise so he needs to expect a long day on Wednesday as the first treatment will be done slowly looking further any reactions, these can happen but his team are well prepared to deal with this. The following treatments will most likely be done quicker. 

I will always recommend that when you embark on the treatment journey do read the information provided by your team and also on recognised Cancer Support Charities...... but stay away from random Google search’s. 

Do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service

The treatment information you are given to read can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all are bad. If we asked 10 people with the same condition who had the same treatment you would get 10 different answers.

These are some useful links for you to have a look at:

Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

I am sure that others will pick up on your post but do post any specific questions that are bothering you ((hugs))

Thank you so much for this information. You have certainly reassured me and congratulations on your remission. Very inspiring

Be further encouraged that DLBCL is a high grade NHL so grows quickly so in turn needs to be treated quickly but the aim of the treatment is hopefully to cure.

This is rather different for low grade NHLs like my one as it is incredible and a life long condition.

You can look at group members stories by hitting our community names.

You have also joined the Diffuse large B-cell lymphoma where you will see many threads.

Always around to help out.

Hi Sarah

Lots of different experiences through treatment documented here if you have a hunt through the various posts. 

Personally I found treatment day was a loss as it would always be at least late afternoon before I got finished. First time everything was taken very slow. Days two to five I was able to bash on with things fine. Day six, seven and eight were lay on the couch and munch ice lolly's. ( I got through a lot of them as I found them soothing for my mouth and throat) the remaining days I felt normal again and ready for the next cycle. I had six cycles and I did get more lethargic by the last two.

I'm sure I have posted this before but I feel it is probably harder for the partners of suffers to deal with a lot of what happens than the patients if that make sense.  

Thanks so much for sharing. I guess its difficult to know how he will feel. We will hope for the best but prepare for the worst 

Good morning Sarah123456, when I went into my main chemo 14 years after my initial diagnosis (see my profile) a number of family and friends including my mum were feeding me with stories about others who had went through chemo. But these stories were from a time that having treatments was very very challenging.

The reality is things are so so different and I had no real issues with my initial 750hrs chemo

Hi Sarah, I’ve got exactly the same as your hubby, mine was stage 3/4 found by total accident following gyne surgery. I was fit and well prior to diagnosis.

I’ve had 5 sessions of R-chop up to now, got my final one this month.  My experience of it was basically better than expected. The first one wasn’t nice and I think it was just a total shock to the system but otherwise it’s doable. Main issues…..bit of fatigue, some mouth sores, loss of taste for the first 5 days following treatment, touch of neuropathy to the finger tips, constipation, bit of breathlessness (feels like when you’re getting over a bout of flu or heavy cold). Sounds grim….but it’s manageable and if you feel a bit sickly, there’s meds to take to sort that out.

I’ve managed to work full time throughout (I do work from home), still take the dog out daily and meet up with friends in the 2nd and 3rd week of the cycle. Have a few wines and stay as ‘normal’ as possible.  Only for the visible sign (bald head!) you wouldn’t know I had anything wrong!

He’ll be fine. By the way, just for reference, I’m 50 and female and was generally fit and well prior to treatment.

If you’ve got any questions, fire away, I’m always happy to answer anything.

Good luck to your hubby.

Sarah x

The best advice I can add is take it a day at a time and just see how it goes, keep a daily diary and by cycle 3 he will have a feel for how things are likely to go having had 2 rounds for experience. If and when side effects kick in then we can all share how we managed them, some sail through treatment others really struggle and in between is where most people land.

The first treatment may be a long one depending if he reacts to rituximab, 50% do and 50% don't, if he does not then they increase the rate of flow on the drip, and they will be watching him early on to see how he does.

The common side effects are: constipation, metallic taste and the effects become cumulative so fatigue tends to kick in around cycle 3. 

do keep us updated and any questions, just ask

john

Thanks for this Sassy1234. Continuing to walk the dog and have a wine are priorities for my husband too! 

Thank you John. This is really helpful. I have a notebook ready for him to start the diary!