R-Chop side effects and strange occurrences.

Hi , good to hear from you and seeing progress is being made.

So I had a slightly different chemo for a different type of NHL but much the same treatment and from my point of view this sounds rather familiar.

For me the Steroid withdrawal got longer and the length and intensity of the fatigue increased over the cycles - all were manageable and I did keep away from infections so that was great.

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 during my 4th cycle, 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 all

Big ((hugs))

Hi, yes you do find a pattern develops, I experienced some of the things you have and found with each cycle the recovery period reduced and the side effects last a little longer, only had a minor rise in temp once during the 8 cycles but did experience the flu symptoms which was down to the neulasta injections and rituximab. Thorntons toffee worked a treat on the sore throat, Whats good is you know know how things will be so can prepare and get on with it, knowing the good days are not far away and when you can enjoy food because the metallic tasted has gone for a short time. Think that was the best point for me in each cycle.

John 

Thanks Guys,

It's great to know that you are not alone and that by just making contact, you know that all is not lost.   I tell other folk that, but never believed that it could or would happen to me.

Now to give you a laugh!!    My fatigue is really bad, which is depressing, for although I am retired I still read, mark and comment on several University PhD submissions from around the world.   Unfortunately, since this recurrence and transformation, the fatigue has effected my concentration to such an extent that I have had to decline marking this year.  Now for the laugh.   One of my Universities is John's Hopkins and yes the subject is all to do with "Cancer Genetics". 

John

Hi there Moravian

I’ve no idea if you still look at this forum or where you are in your journey, but I just wanted to thank you for this post as I have found it really reassuring! 

I’ve got stage 3 DLBCL and am on my 4th cycle of R-CHOP. Since cycle 2 I have had a raised temp on each cycle between day 8 and 9 and your description of events almost fits perfectly for me!

On the first occasion I contacted the out of hours ward and was advised to take paracetamol, however, the next day the chemo team said that was the wrong advice and that I should have had bloods etc, but all turned out ok. The next time it happened, I went in for bloods etc and although no clear infection source was found I had antibiotics as a precaution. The latest time (this week) the out of hours ward suggested paracetamol again, but I waited to speak to the chemo team in the end (who again didn’t agree with paracetamol advice). They’ve concluded it’s probably due to the chemo rather than infection, and there does seem to be a pattern. It settled later that day and soon after I started to feel better again.  

It’s scary at the time, and I thought I’d see if anyone else was having similar issues and found your post. If you’re reading this then thank you for sharing your experience as it definitely has helped me. I hope your treatment was successful and I hope you’re in really good health now. 

Thanks again!

Hi again caja, good that you found Moravian’s post encouraging.

Just to say that when I was having my 6 cycles of R-EPOCH my temperature was all over the place and yes you always need to contact your chemo team not general out of hours to ensure the correct steps can be taken.

My team could never find anything wrong and it was all put down to my internal body thermostat getting confused.

Thank you  Always good to know it’s not just me, and I think my internal thermostat is very confused these days!

The system they have where I’m treated, is that there’s a ward number I have for any out of hours problems as the chemo unit is 9-5... I think the hope is that the advice would be consistent but the chemo team are going to speak with the ward again I think, to clarify things. 

Thanks again. This forum is a godsend!

Interesting, during my first treatment rchop I was treated for sepsis, in my own room 3 days. Since then I have been giving myself filgastrim iinjec. injections and they kept me safe. Had 6th treatment yesterday, usual side effects last night, can't sleep, active legs hiccups. It's all worth it. 2 more treatments to go but not rchop this time, Truxima monotherapy. Allan 

Yes it’s all worth it! Good luck with your treatment Allan. 

Thanks Caja for resurrecting this and everyone who's shared their experiences. My husband is having his second R-CHOP this week. Spotting infections/temperature fluctuations/fluey symptoms and knowing how to deal with them is one of my biggest concerns. We'll probably be super twitchy and err on the side of caution but it's useful to know they can be part of a 'normal' pattern. I'll make sure we both bear that in mind if we have to dash to hospital.

Hi , I see this is your first post so welcome on the Rollercoster and well done getting something in your profile - you can see our ones, some are short but some are long but full of good information.

The main things to look out for is the build up of Fatigue, it is very important to keep some activity going as this does help overcome some of the effects.

R-CHOP can effect the kidneys but drinking lots of water...... 2-3lts a day can help this.

Avoiding Infections is a big deal but at the same time not to get over paranoid - a good thermometer is important and if temperatures go out with the of es you have been told then you call it in.

We are around to help as best as we can.