Advice about my mum's DLBCL

Hi rupert123 and welcome to this corner of the community.

Sorry to read your mum's story, it's such a challenging time for you all. Infections and going through Lymphoma treatments often go hand in hand but let's look for this to get back in the right direction.

I would be surprised if her mid treatment scan does not show some positive progress. 

You need to check out what she has been given for reflux as there are a few products available and at times it can be trial and error. The one thing that helped me was raising the head of my bed so my head was higher than my stomach but removes the need to have extra pillows as this can be uncomfortable to sleep in that position...... I had a couple of bricks under the top of the bed and something smaller in the middle under the middle castors.

Eating can be challenging, especially when it all tastes like you are sucking on a rusty penny...... but food needs to be seen as 'fuel' and taste and enjoyment at times becomes secondary...... I hated meal replacement shakes with a passion

I have a different type of NHL and a completely different journey. I lost 27kgs during my main two years of treatment (See my story) so at the end of my second Stem Cell Transplant I was not able to eat regularly and even then in small amounts so the Unit Dietitian  recommended I eat regular small cups of good quality homemade soups that had been liquidised and contained some double cream in every cup. It was all about protein - I basically lived on this for about 4 months, having a cup (about 2-3 three spoons) every hour - all day. I would have a small amount of scrambled eggs with lots of butter and some cheese for breakfast or a small amount of porridge with double cream

It was hard work for my wife but it kept me going until my body kicked back in.

Hi Mike, thanks for your response. It's encouraging to see that other people who have experienced the same side effects have succeeded and come out on the other side. 

On a separate note I haven't seen a lot of discussion on this forum about R-mini-chop which is usually applied to people over 80. I hesitate to use Google too much as it can sometimes give you negative feedback. Does anyone know if the goal of R-mini-chop is to send DLBCL into remission or only to control it and give the patient more years of life. The doctors we have spoken have been very vague.

Hi again, I think it’s safe to say that consultants will tend to be vague especially when treating over 80s as there are lots of variables. 

In normal circumstances main R-CHOP is used to achieve long term remission very often to achieve cure…… but R-mini-chop is designed to be less harmful to the patients general health.

Only aiming to control would be classed as Palliative so her team should say this but there is a good chance that this would lead to a ‘period’ of remission although this may be short term.

The only people that can give an honest answer will be her consultant.

Thanks Mike. Sorry for the delayed reply but my mother got discharged from hospital 2 weeks ago and is now back at home. She is happy to be home but unfortunately her lack of nutrition is still a problem although she has more food options at home than she did in hospital. The reflux and nausea seems to be causing her significant problems and preventing her from eating. She was prescribed Cyclizine in hospital and we give this to her 30 mins before she eats but it doesnt appear to always be effective.

She is due to have her 5th round of R-Mini-Chop next week and when she is in hospital we will ask them if they can give her something more effective as she is literally wasting away before our eyes.

Hi again, if your mum is struggling with reflux and nausea never wait until her next appointment, call her Specialist Cancer Nurse if she has one or the clinic as they can prescribe more options.

I had to have various anti-nausea and reflux meds over my cycles as things just kept changing.

Dud you try the loaded soups?…… I lost 27kgs over my time and it was the only thing so could face.

Thanks Mike. I called her Specialist nurse and asked for a different anti-sickness medication and will be picking it up later. She refused to prescribe a subcutaneous version as she said you need medical training to administer it.

It appears that my mum's nausea is made worse by movement, whether moving her out of bed or into bed. However, she had some porridge in bed this morning and was fine until an ambulance turned up to take her for her PET scan. Once the ambulance moved off she started to vomit, very distressing for her. So maybe motion sickness is part of the cause.

With regards to the soup I did make some but unfortunately the cream I put in seemed to cause her to become constipated. Will have another go now that we are trying to give her more fibre in her other meals. 

Good to hear about the new anti sickness meds. 

These treatment do play havoc with the bodies general well-being and metabolism.

Talk to her team about her feeling worse when she moves about…… I had that type of problem-ish where I had fuzzy heads when getting up and moving about….. not sick though.

Remember these treatments go everywhere in the body including over our head, ears arc….. fir me it was like I had an inner ear problem that was affecting my balance.

I was sick the last two times I was in a blue light ambulance and I was not on treatment so I feel for her  

Try the soup without the cream, my dietician said it was one of the quickest ways of getting protein into the body ((hugs)) all round.

Just an update to say that my mum had a PET scan after her 4th round of chemo. The doctor has told us that she had a very good response to the chemo and most areas of lymphoma appear to have gone but there are a few small spots of active lymphoma in her legs but these could be also dying. She is having her 6th and final round of chemo next week and then another scan in January. So keeping our fingers crossed that it will be complete remission. Thanks for all the advice and words of wisdom from you Mike.

Hi rupert123, good to read your update about your mum and as to how well her treatment is going.

Treatments like these are basically the same as anyone having a course of Antibiotics..... you may well feel good but may have a few tablets left...... so you don't stop, you keep going to ensure that you get the full effect of the treatment.

Have a great Christmas and look forward to next year with a positive outlook.

All, just to share the news that my mother had her final PET Scan last week and results came back saying the Lymphoma had disappeared. To say we are relieved and ecstatic would be an understatement. The doctor did temper the news by saying that the first 2 years after is always the most critical period and we need to monitor her closely. She will also have blood tests every 3 months.They did say that if it comes back to the body there are further treatments they can try but if it comes back and is in the brain then there is nothing they can do.

Obviously we don't know what the future holds but we will celebrate for now. She turns 82 next month and we will have a huge party for her.

Thanks to all of you, especially Highlander, for the words of encouragement. If our 81 year old mum could beat Stage 4 DLBCL then there is hope for everyone.