R-CHOP treatment

Hi, yes I had a bad reaction to R and when I was having treatment the was another patient who was worse than me and he had to have it over 24 hours at a very slow rate so would start off on the day ward and then move to an over night bed to finish treatment. They can go aggressive on steroids to to manage some effects. When you say dramatic can you share, the first reaction I had was hives followed by my throat closing and every treatment that followed I always had the throat issue so it was a balancing act as to how much the dose infusion was increased. The other thing to factor in is your body will adjust to it to a degree.

or if R is no longer part of the treatment ask if you can have one of the newer generation drugs that don't cause this side effect one is obinutuzumab, here's a link to help 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688039/

If at all possible push for an alternative, having one of these drugs does help treatment as rituximab was a game changer when it was introduced.

John 

Hi again , good to see John post as I did not have a reaction to Rituximab.

Rituximab was a important part of my treatment (R-EPOCH) but my cycles were given over 5 days 24/7 (for 6 cycles) so it went in very slowly.

See what your tram say, as John says Rituximab is one of these game changer treatments that have come in over the years.

Thanks John 

Within 10 minutes of it starting I had come over dizzy and clammy. Luckily managed to press nurses call button before I passed out. Woke up after being given a massive dose of steroids and other meds with Drs and nurses from the crash team around me. Apparently my blood pressure and heart rate crashed and temp went through the roof.
was quite a shock. On the plus side the extra steroids meant I could move my jaw and talk but the allergy meds made me very drowsy and slurry for a good 24 hrs. 

it’s good to know that they can give the steroids to help with the side effects. Thanks. 
 

the team have mentioned I may need to go in and stay to try the R again. But probably after another cycle without it. 

One of the drugs I had during my first Stem Cell Transplant was actually developed in rabbits - yes I know 

I am highly allergic to animals so had to have massive IVs of antihistamine for 5 days...... no memories of these days. My wife said I was in one big trance, well out of it and any food I got was put in by her.

They will find a way forward for you.

Thanks Mike. 
the wonders of modern medicine!!

Hi again, you have just reminded me about low blood pressure I had that to and I saw others have it now and again and it was managed, so whilst you may be able to tolerate it at a very low rate my advice would be, if it were me, to push for one of the alternative drugs that you won't have a reaction to. The reason being its probably all down to rituximab that survival rates and NED rates have improved so much so that's why I would be pushing for the alternative and your consultant should know this and understand. The only complication is NICE guidelines and what can be offered when problems are encountered.

hope you get some answers when you see the consultant at the end of the week

any questions just ask

John 

When I had my first R-CHOP I had a bad reaction too.  I went hot and clammy and felt that my chest was going to burst and was struggling to breathe. They stop it immediately and then re-started it very slowly and it was fine.  Each visit took about 8 hours, as they always administered it slowly after that.   When I had the two years' rituximab maintenance it was always fine!

Hope yours gets sorted.

Stay safe.

Jan

Hi all

thanks for the advice with this. It really helps. 
I had my phone appt with the consultant this week and they want to try again with the Rituximab. It will be very slow, probably having given me the drugs to counter any reaction first and with a physician monitoring. 
they are still reluctant to admit me for this one, understandably. 
if this still causes a reaction then there is an alternative available or to just go ahead with the CHOP treatment on its own.

and a little good news... my blood test and bone marrow results were clear.

this is all so hard doing this on my own and seems just too much sometimes. I have great support around me but only on the phone or video chat at the moment. I live on my own and am so used to being active and out and about. 
Seems crazy that my only times I’m going out at the moment are to the hospital. I know there will be an end to this all and so many people are in this same boat. 

Hi, good to see your update and that they have a plan, if you do react badly again to R and they talk about chop being the option I would suggest you ask why they would not want to use the alternative drug as the evidence of the benefits are proven when compared with basic chop.

good luck with it and hope the next cycle is less eventful

Good news I would say and giving the R another go is worth trying as it all makes a difference in the long run.

These unprecedented times are hard and more so as you are living alone..... but do remember this is all temporary and it will pass.

It’s just my wife and I in the house, she works from home and we are so used to each other’s company the lockdown is not that a big deal and especially as we have had to do it before following my Stem Cell Transplants.

FaceTime and the likes are great, we have three granddaughters down in Surrey so have not seen them since Christmas but we are in contact very regularly catching up on what they have been doing and we even have a weekly song time with grandad.

Our other Granddaughter is within a 25min drive so when she and her mum come into town for Click and Collect they will often have a few things for us so they drop in past.

We sit on the door step with a cup of coffee and daughter sits  at the road side with her cup of coffee and granddaughter runs round the garden and gets a treat.... she is very good and does not come hear us - these little things helps keeps us all connected.   

We are always around to listen and to support as best as we can.