Post R Chop

Hi and welcome to our corner of the Community. Sorry to hear about the challenges your uncle is having.

Do you know the exact type of NHL he has..... there are over 60 types!!

During chemotherapy the time the immune system is most vulnerable is normally days 7-14. This is when there is an increased risk of infection.... but some people the recovery can take longer.

It’s important to understand that his team are basically using clever poison to kill his cancer so it’s not surprising that he will have some effects.

If he is not active especially being in bed for extended periods of time he will have muscle wastage resulting in aches and pains..... I am years post treatments and still get cramps.

Also, depending on where his growth areas area there May well be pain in these areas as often muscles and nerves get trapped in the cell growth and once treatment starts the muscles and nerves will react being freed up.... this trends to pass over time - mainly by doing some very basic activity.

As long as his team know about the challenges he is have and are ok with these he is going ok.

Fatigue will develop over his cycles and the more he is is bed the longer his recovery but he must listen to his body.

Going off food can also make you weak but he needs to get some protein in himself, his team can arrange for him to get drunk supplements, fortified drinks although Ibhated then.

Small cups of good home made liquidised soup with some cream can help a lot, scrambled eggs are a good protein provider.... just don’t give him plates of food.

Keep posting as it helps and so can we ((hugs))

Sorry to hear of this. Did your uncle tolerate the Rituxan well? It is known to generate allergic reactions, which lead to inflammation, which is an ideal environment for infection to begin. Sadly, some conditions lead to a cascade of other irritating problems. As to his appetite, have they considered an appetite stimulant? In hospital post-stem cell transplant, I had great difficulty eating. I was  administered a synthetic form of THC which got my appetite going once again. After a few days, my desire to eat returned. I have had life long problems with leg and foot cramps, thus I watch my magnesium and potassium levels. It is so sad to hear of so many battles when the bigger war is all that he wanted to fight! 

If I'm understanding you correctly, your uncle had already been in hospital for a couple of weeks when he had his first R-CHOP cycle.  Unfortunately, hospitals are a great place to develop infections and to lose condition.

If he seems to have developed a chest infection or UTI, he needs to go to the ED urgently, even if it's the middle of the night.

The neck pain could be due to him having spent much of the last month in bed, but his care team need to know about it.

I got foot and leg cramps while I was doing R-CHOP.  I got the impression it's not uncommon.

His lack of appetite could be due to altered taste, a sore mouth, or nausea.  He should have been given medication for nausea and told how to prevent a sore mouth.  Almost everyone has altered taste during R-CHOP.  It used to wear off for me just in time for my next cycle.  There were still a few things I could taste properly during the worst of it - chocolate and coffee were two of them.

Any sudden deterioration means he needs to be assessed by his care team.  You don't mention whether he is on pneumonia prophylaxis, but even if he is it needs to be excluded as a cause for his respiratory problems.

I hope you can get him medically assessed and get some answers soon.  It's very worrying when you're not sure what's going on or why.

Thank you for the replies:) appetite started to come back and so did swallowing, still there is a choke hazard but on a soft diet  at the moment. He was dehydrated and i wander whether that's why the cramps initially started. I continue to massage and he does get relief. Being in bed does not help. We know it is a chest infection, and he has been diagnosed NHL B cell . We have been advised that they may review the administration of mini Chop because of the complications post the first dose, I am not sure what other options we have, he is based in Kuwait and I live between London and Kuwait, Covid as you can imagine has made life for everyone so much more complicated. 

We have started soups and the meal shakes I'm convinced he is  better as a result.

Thank you so much for  the support it really means a lot.

Wow ! You all are so brave I'm humbled

Good morning , good to hear that some improvements have come along and some progress is being made in overcoming some of his challenges- it can be a bumpy ride indeed.

COVID indeed made what is a rough journey just that more challenging.

Drinking lots of water is very important as this will flush out the chemo toxins, protect his kidneys....... and helps the cramps as does some simple walking. The longer he is in bed the long it will take for him to recover.

We all walk our treatment journeys with the same goal and that is get through and out the other side and let’s look for this to be the case with your uncle.

There are always options. "CHOP-based" regimens have been the standard in B-Cell Lymphomas for years and years. Due to the known toxicities, there is a general trend away from anthracycline based regimens such as CHOP and toward new combinations of existing drugs. One that is gaining popularity in B-Cell Lymphomas is Bendamustine-Rituxan (B-R) as it is less toxic overall. After my second relapse of two aggressive T-Cell Lymphomas, it was Bendamustine in combination with Etoposide and Carboplatin which placed me in full response. With Rituxan tossed into the mix, it was a clinical trial (TREC) at the facility where I was treated in the states. But, research may have arrived at an even more efficacious regimen. That that is the blessing of living in a research-driven era of treatment.   

Hi dindin66 have you found out yet which type of NHL he has and weather its slow growing (Indolent) or faster growing (Aggressive) as we can be more specific when we share treatment options when we know what the type is the patient is being treated for. Because the are always options, just some are more effective than others and mini R-Chop is given to older people who struggle to tolerate the full dose or where the is a potential risk. Can you call his consultant to discuss his treatment and would your dad have to give consent? Just an idea so you get things first hand.

John 

Hi Po, how are you, has treatment stabilised or are you still finding new challenges for those medics over the pond? good to see you supporting people again Let me know how things are.

John 

Signing up here was almost more of a challenge than the cancers! Finally, the administrators were able to pull it off, but my username had to be scrambled in order to be usable, as the 'po18guy' was irretrievably corrupted in some manner. As you might safely assume, my journey continues. Torn retina recently repaired, with vision returning to normal as the inflammation subsides.  The GvHD is relatively stable and Friday will be 5 years now post transplant. Yearly checkup arriving next month.

I hope that all is well as might be hoped for at your end!