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R-chop advice

Evie22
Posts: 8
Joined: Feb 2021

Hi, I would appreciate any advice you can give. My mom was recently found to have lymphoa and will be getting a final diagnosis in the next few days. Although We are waiting for confirmation, I suspect it is DLBCL and she will be on R-chop. I'm trying to have some plans In place to help her and was looking for your thoughts. She is 70 and in good health otherwise, she feels fine right now and is active. She lives alone. I was thinking she will need someone to stay with her at least for the week after each treatment. Does that seem reasonable? Would it be more helpful to have someone around for longer? I live an hour away so can also visit on weekends when She is feeling better. My brother and sister live closer but they have kids in school so I think I will be the one to stay with her Or have her stay with me.

I realize everyone is different and luckily we have a great relashonship so I know she will tell me when she needs someone but I'm trying to make some

plans with work and get things in order So I can help her as much as she needs. Plus it just help me to plan since I can't do much for her right now. How much help did you want/need? Is there anything we can do that would be helpful to her that isn't obvious? Anything we can have ready or things we should be thinking about? 

Thank you! 

po18guy's picture
po18guy
Posts: 1223
Joined: Nov 2011

Until diagnosis, we cannot be certain of what it is - no matter what it appears to be. Cancer mimics other diseases and other diseases mimic cancer. Having said thart, can she staty with you, or is treatment too far away? if so, then it is time for a bro-sis meeting andask all of them to step up.

But, lets see what the actual diagnosis is and proceed from there.

Evie22
Posts: 8
Joined: Feb 2021

Thank you! we know it's B cell lymphoma just waiting on confirmation of the type. I know I'm getting ahead of myself but making plans for all the possabilities helps me channel some of my anxiety. Im hoping she will come stay with me but I know she likes her own things when she doesn't feel well. My brother and sister are great so I am sure we will figure out whatever we need to do. I guess I'm just trying to figure out if this is the case, if I stay with her for a bit after treatment is it realistic to think she might be ok on her own for a week or two each month if we stop by and help with things or is that not likely to work? Is it more likely that she'll need someone there full time (or to stay with us)? But it sounds like we'll just have to wait and see. Thanks again for your reply

ShadyGuy
Posts: 709
Joined: Jan 2017

is very lucky to have you as a daughter. She raised you well!

Evie22
Posts: 8
Joined: Feb 2021

Thanks, my mom is the kindest person so I just want to be sure we are doing everything we can for her and making this the easiest we can on her. I don't want her worrying about other things, Im just not completely sure of the things she'll be worried about and need help with. I guess that's something we all fiigure out in time.

ShadyGuy
Posts: 709
Joined: Jan 2017

with R Chop . Both of my chemos were other than RCHOP.

Evie22
Posts: 8
Joined: Feb 2021

I'm sorry you had to go through chemo at all. If anything general comes to mind that helped you or if there are things that maybe you wish people hadn't done(even if trying to be helpful).... that's always good to know to! 

Max Former Hodg...
Posts: 3699
Joined: May 2012

Evie,

R-CHOP is one of the most common chemo combos given for various lymphomas.   It can be harsh for some, milder for others.  In general though, patients describe the Prednisone as one of the worst aspects.   Prednisone is a steroid, taken for a few days after each infusion.   It is taken AT HOME, and is a pill, given once a day.   Prednisone often causes insomnia, agitation, jitteryness, and fluid retention.   The first R-CHOP is often MILDER than later ones, so do not think that because the first infusion was very mild (if it is) that others will be also.  Think 'cumulative' for side effects over the months.

It would be very advisable for someone to be with her for the first 4 or five days after each infusion, regardless of who it is.  Also, virtually no Infusion Center will allow a patient to drive themself home after a full day of CHOP.   Someone will say that 'they did,' but it is not the best idea, especially in an older patient.

Obviously, as Shady noted, your mom is blessed to have you in her world,

 

https://chemocare.com/chemotherapy/drug-info/Prednisone.aspx 

 

.

Evie22
Posts: 8
Joined: Feb 2021

Thank You, this is so helpful! It gives me some of idea of what to start thinking about and what she'll need. I really appreciate it!

PBL
Posts: 329
Joined: Jul 2016

Hi,

I had 6 R-CHOP in 2016. Max has more or less given you an outline and some resources on that regimen. I will only add at this point that I was about twenty years younger than your mother at the time, and it felt like I had been run over by a bus. This may be because I was quite in pain and fatigued, and also because it was a very, very long first day, with the infusion ending in the middle of the night (between two and three a.m.). I was also hit hard by side effects from the start - but we'll save that for later, when you know for a fact that this will be the treatment prescribed to your mother.

R-CHOP is considered fairly harsh chemotherapy, and rather than describing the first infusion as mild, I would say that the effects are cumulative, which means that infusion #5 or 6 will be harder on the body than #1 or 2.

That being said, there are also psychological and emotional aspects to consider, and because this is a jump into the unknown it is likely that your mother will need more reassuring presence for the first couple of cycles, while she will find her routine for the remainder of her treatment.

You have stated that your mother lives alone, so I assume she is autonomous and independent. If I had had to pick between staying at home with my daughter sleeping over for a few nights or being a guest at my daughter's place, I am quite certain I would have preferred staying home in my familiar environment, using my own bedroom and bathroom. However, everyone is different, and this is a conversation I would encourage you to have with your mother - but if it is all the same to you in terms of your organization, I would suggest offering to sleep over at her place the first few nights, just to reassure her if she feels she may need that.

I hope this answers your question for now. Do let us know how things develop.
PBL

Evie22
Posts: 8
Joined: Feb 2021

Thank you, that is very helpful. We just met with the oncologist ans it turns out it is a bit more aggressive than we had hoped, double hit lymphoma and she'll be on R-EPOCH instead, starting in just over a week. We'll be making plans this weekend but I think I'll be staying with her for at least the start and we will see how things go from there, I appreciate your thoughts on that! 

PBL
Posts: 329
Joined: Jul 2016

Hi,

Sorry to read your mom's diagnosis is now double hit...

R-EPOCH is essentially the same drugs as R-CHOP with Etoposide added to the mix, but it is administered over the course of five days instead of just one. Although there is a recent trend towards outpatient administration, I believe it is still done as an inpatient treatment, which may be better in the case of an older patient living alone. 

Is that the current plan?

Evie22
Posts: 8
Joined: Feb 2021

Hi,

THe current plan is to do it outpatinet. She is getting a port put in next week and we have "teaching session" with the nurse to better understand what will happen and they said I could go to that appointment with her. She's very worried about imposing on us and thinks she will be ok with just help driving to and from appointments, I am hoping the nurse will help convince her she needs someone there. 

Burni's picture
Burni
Posts: 15
Joined: Aug 2020

I had 6 R-chop and 4 spinal chemos.My body handled it well and I had very minimal side effects. Why? I don't know.I did drink 64 oz of water everyday for 4 months. My daily prednisone I set an alarm and would take it at 5:00am and go back to bed, I was always worried about being able to go to sleep at night. It did make me jittery like I'd drank a lot of coffee. After the third round of Predisone my doctor had me taper off of it more slowly because I had a terrible steroid crash.At my doctors office in the very beginning my doctor asked me if I had been sick during pregnancy. That seemed like a weird question. She went on to say if you weren't sick then you wouldn't be sick after chemo. This was true as I never had nausea.Your Mom is 13 years older than me and I don't know how much age plays into side effects.I had to be on miralax and senna daily as constipation was always a problem.I also experienced neuropathy in my finger tips. Good idea to keep an eye on that if it happens.As often as I could I stayed busy and walked around the block.Gather as much info as you can, so if something comes up you won't panic.

Evarista's picture
Evarista
Posts: 320
Joined: May 2017

Hi Evie, agressive DLBCL R-EPOCH survivor here.  So, so sorry she has to go through this.  My recommendation would be to be prepared for a wide range of circumstances.  She may go from perfectly OK to diapers & bedbaths, at least some of the time. I certainly did and there is absolutely no way that I could have managed on my own (age 68 & reasonably fit before getting ill). There is a lot to consider and being with her after the first round should provide you with a good sense of what needs to be attended to.  Not just the "activities of daily living", but getting back and forth to outpatient clinic for Neulasta shots, CT/PET scans, twice weekly blood draws.  What to do if she spikes a fever or has a fall. Food prep. I hate be overly negative, but an ounce of prevention is super-important for her.

I am more than happy to discuss the finer details of what to expect, so please do feel free to send me a private message if you would like (you do that by clicking on my name).  Best of luck with it.

Edited to add:  4 years out and doing well.

Evie22
Posts: 8
Joined: Feb 2021

I am so glad to hear you are 4 years out and doing well :) I appreciate the frankness, it's going to be what it is going to be and I agree the more we know ahead of time without sugar coating the better. I will take you up on that offer and reach out with a PM. Thank you!!

 

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