Tips for DA-EPOCH-R?

alwaysforgiven821

Discovered a mass in my chest on the 11th of this month Went through CTs, MUGA - all the prep scans and tests, and had biopsies that week. Results came in Thursday (took 7 days) and I got the diagnosis Fri - Primary Mediastinal large b-cell Lymphoma. The mass is wrapped around my aortic arch and my vena cava. Doctor is starting me on inpatient DA-EPOCH-R next week (don't have the firm day), but he wants to start by Wednesday. I have the port scheduled to be put in tomorrow (Monday).


Doctor told me that this is the best treatment for this form of NHL. I know to expect things like fatigue, mouth sores, hair loss after a few weeks, etc. But what about things like... will I be able to shower during treatment? I know the chemo will need to be running 24/7. Is there anything else to look for? Honestly, I don't know all the questions to ask. Any advise?

ShadyGuy

Fludara

does anyone have experience with FCR (fludara, cytoxan, rituxan) protocol? Not sure if prednisone or other drugs are included but will know tomorrow. I have an “orientation” session tomorrow (Monday) afternoon and would like help with making a list of questions I need to ask. Infusions start Tuesday and run 4-days. 6 rounds each 4 weeks start to start which is a little over 3 weeks between infusion days.

i started on miralax tonight.

Evarista

Tips for DA-R-EPOCH

Hi Aways.  So sorry that you will have to go through this, but know that it's "dobable".  I and others recently wrote some tips in this thread:  https://csn.cancer.org/node/315413  The thread is about R-CHOP, but I gave details about R-EPOCH along with some "tips".  PBL had some good points in that thread also. Key issues that seem to come up during treatment are 1) constipation and 2) bone pain from the post-chemo Neulasta shot.  You can help yourself with both of these with stool softeners, good hydration, & a high fiber diet for #1 and Claritin for #2 (check with your doctor, of course).

As for showering: I had a PICC line not a port, but I they would lay adhesive covering over it and I'd just shower with the I.V. pole standing outside the curtain.  You will be hooked up constantly, so as long as your port opening can be protected from water, you should be OK. I'm drawing a blank on the stuff my hospital used but "Press N Seal" also works for when you are at home (grocery store item). Do expect the other stuff that you've mentioned.  If your mouth gets bad, ask for a "Magic Mouthwash" prescription. Other things to watch out for: sugar intake (prednisone may cause it to spike dangerously high). Prednisone may also give you insomnia, so take podcasts, games, etc. for when you need them. Getting up and out of bed as much as you can will serve you well as you go through your rounds, since the fatigue tends to be cummulative.  But don't fall!  Get help if you need help.  Scrupulous hygiene when you are home to prevent infections is important...They will give you instructions. Drink plenty of water the first few days home to minimize bladder irritation/damage from the cytoxan.

Don't hesitate to come back with questons is you have more.  We are a bunch of "been there, done that" folks here. Good luck.

Added note:  the hospital used AnchorDry sheets to cover my PICC line.  You can buy this on Amazon.

Jillbrobinson

Evarista said:

Tips for DA-R-EPOCH

Hi Aways.  So sorry that you will have to go through this, but know that it's "dobable".  I and others recently wrote some tips in this thread:  https://csn.cancer.org/node/315413  The thread is about R-CHOP, but I gave details about R-EPOCH along with some "tips".  PBL had some good points in that thread also. Key issues that seem to come up during treatment are 1) constipation and 2) bone pain from the post-chemo Neulasta shot.  You can help yourself with both of these with stool softeners, good hydration, & a high fiber diet for #1 and Claritin for #2 (check with your doctor, of course).

As for showering: I had a PICC line not a port, but I they would lay adhesive covering over it and I'd just shower with the I.V. pole standing outside the curtain.  You will be hooked up constantly, so as long as your port opening can be protected from water, you should be OK. I'm drawing a blank on the stuff my hospital used but "Press N Seal" also works for when you are at home (grocery store item). Do expect the other stuff that you've mentioned.  If your mouth gets bad, ask for a "Magic Mouthwash" prescription. Other things to watch out for: sugar intake (prednisone may cause it to spike dangerously high). Prednisone may also give you insomnia, so take podcasts, games, etc. for when you need them. Getting up and out of bed as much as you can will serve you well as you go through your rounds, since the fatigue tends to be cummulative.  But don't fall!  Get help if you need help.  Scrupulous hygiene when you are home to prevent infections is important...They will give you instructions. Drink plenty of water the first few days home to minimize bladder irritation/damage from the cytoxan.

Don't hesitate to come back with questons is you have more.  We are a bunch of "been there, done that" folks here. Good luck.

Added note:  the hospital used AnchorDry sheets to cover my PICC line.  You can buy this on Amazon.

Post Primary Mediastinal

Hi,

I am 2 years in remission from Primary Mediastinal.  Did the DA-EPOCH.

I still have pain where they did the biopsy and sometimes the entire right side of my chest has either shooting pain or discomfort.  Nothing that cannot be managed, but of course, makes me worry and relive the whole situation.

I wondered if anyone else had similar pain In remission.

thanks

Max Former Hodgkins Stage 3

ShadyGuy said:

Fludara

does anyone have experience with FCR (fludara, cytoxan, rituxan) protocol? Not sure if prednisone or other drugs are included but will know tomorrow. I have an “orientation” session tomorrow (Monday) afternoon and would like help with making a list of questions I need to ask. Infusions start Tuesday and run 4-days. 6 rounds each 4 weeks start to start which is a little over 3 weeks between infusion days.

i started on miralax tonight.

Info

Not 'personal experience' information, but may be of some value.....   Seems mostly used as a salvage.   I see more and more often that the refactory indolent lymphomas are treated similiarly to CLL.

 

https://chemocare.com/chemotherapy/acronyms/fcr.aspx