DA-EPOCH-R treatments

[Msmerryc]

I was diagnosed with diffuse large cell B lymphoma in Sept. immediately hospitalized for DA-EPOCH-R 24 hour treatments. A real shock to me as I envisioned a day in the infusion center every 3 weeks. Made it thru 2 sessions and headed back next week for another week tethered to my chemo pole 😊. Anyone else n this regimen? Mary

[Jm954 Administrator]

Hi Mary,

yes we have had a few members go through this regime for their DLBCL Richter's treatment. My understanding is that it can be hard going but worth it as the DLBCL can be cured.

Keep going!

Jackie

[Newdawn Administrator]

How are you coping with the treatment Mary?

Hoping it sorts everything out for you.

Best wishes,

Newdawn

[Msmerryc in reply to Newdawn]

It is a little scary to me that I’ve adjusted so well. I even sometimes crave that week in the hospital where I can just do my thing and not worry about anything else. Friends and family come visit and bring me treats but I also can shut off my phone and just be at peace with myself. You get no sleep, lots of needles but the nursing staff is great

[Justasheet1 in reply to Msmerryc]

Mary,

Is your avatar pic a pet?

Jeff

[Msmerryc in reply to Justasheet1]

I have no idea how I ended up with that lizard avatar! 😊

[bigunwill2]

I started this same treatment for large B-cell September6. I have finished 3 rounds. I did fine except being very weak and sore mouth first week. This last round I developed a neutropenia fever which I when to emergency room. I checked into hospital 2 nights for intravenous antibiotics and red count was low so also a blood transfusion.

I got transfusion during night and next day numbers started up. I will go for blood today, but feel my numbers will be much improved. I have more energy.

Next week I’ll have a PET scan. It will tell us if that’s all the treatments I need or whether I need the next 3 rounds.

[Msmerryc in reply to bigunwill2]

Scary that you develop that fever and hospitalization. I’ll go into the hospital this week for round three and I’m feeling cumulatively weaker each round as my doctor predicted. I am fortunate that I was able to quit my job and do everything that I can to take care of me During the six months of treatment. It’s a scary time, isn’t it?

[bigunwill2 in reply to Msmerryc]

Numbers are almost normal when I went Thursday. I am feeling much stronger today. The first 4 days of treatment I walked with my “pole” 15 minutes at a time 4 times. I think the exercise helped.

[Msmerryc]

I do the same (walking).l They have a "trac k" on a bulletin board set up at my hospital and you can "log" your mileage." I try to do a mile a day and will increase, if possible. I find that I am losing muscle mass and my legs feel like "Gumby" sometimes when I am walking or going up stairs. Am going to work with an oncology physical therapist group if it continues...

[bigunwill2]

Mine feel that way the week after treatment until my numbers start back up.

This is the week I usually go back for treatment, but will not go for 2 more weeks, since we’re taking a break to see grand kids in Iowa for a week. Right now I feel the strongest I have since I started treatment. Hopefully, this break will give me strength for the next 3 treatments if the PET this week shows I need them—I do want to get rid of the lymphoma!