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Anyone on R epock treatment getting more than 6 treatments

bobnkay
Posts: 21
Joined: Feb 2011

I will have R Epoch treatment #6 next week but my Dr. wants me to continue for one, maybe 2 more sessions. My last PET scan showed "no activity" in the lymphoma. Has anyone else had more than 6 treatments? I am not getting the cytoxin because it has caused infiltrates in my lungs and that is why the Dr. feels I need the extra two sessions. The first week after treatment I am very tired and on the 12th day I am in a lot of pain while the Nulasta kicks in my white count. The second week about the treatment, I feel good enough to get some work done around the house. Then it starts all over again. I was so looking forward to this being my last session, but if two more will give me several years without the cancer, I'll do it.

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Bob,
Sounds like a good idea to have the extra 2 rounds since they dropped the cytoxin from your treatment. Makes sense to me. I know 2 more rounds is disappointing to hear, but like you said, if it gives you a longer remission time, then it will be so very worth it. I'm pleased you keep checking in with us...it makes me nervous when people just drop off the site for long periods of time. I tend to worry and then wonder if everything is going good or bad with them. Anyways..thanks so much for checking back in and sharing. I haven't done the R-Epoch, so I can't answer your question...hopefully someone else in the group has done it and will help you out.Take care and my prayers are with you...Best wishes,Sue
(FNHL-2-3A-6/10)

bobnkay
Posts: 21
Joined: Feb 2011

Hi Sue: Thanks for your support. I'll try to check in more often. It helps to hear from other cancer survivors.

aimeedonn
Posts: 5
Joined: May 2011

Hello,
I just finished my 7th and final round of R Epoch. I too was hoping to only have to do 6 rounds. My last PET showed very minimal activity after round 4. So my dr. increased the dosage by 20% and added the extra round. I'm still recovering from the last round and have a CT and PET scheduled for next week. Stick with it, I know it's hard. It's the worst roller-coaster ride ever. Receive chemo, feel like crap, start feeling better and repeat. And I know the nuelasta shot sucks, just remember it's helping you. Keep your chin up, it'll be over soon

bobnkay
Posts: 21
Joined: Feb 2011

Hi: Thanks for your support. My PET scan showed no activity but the lymph node was still enlarged. I'm hoping these extra treatments will give me a longer remission time. Of course, the hospital stay was a lot easier when it was snowing outside and below zero. Now with the beautiful weather, I just wish these hospital stays were done with. Good luck on your scans next week.

bobnkay
Posts: 21
Joined: Feb 2011

HI; I finished the 7th round of R Epoch and thought I had one more to go but the Dr. said that was all I needed. Pet Scan showed no activity. i am really looking forward to getting back to my normal life: no more 6 days in the hospital, 14 days out etc. I don't think the chemo was as bad as the nuelasta shot. It seemed the pain got worse after the last three treatments. I'm glad that is over. Now it's wait and see. How are you doing?

aimeedonn
Posts: 5
Joined: May 2011

Yay! Glad you are all done... That is very exciting!! Its so nice not to have to pack for the hospital. I had my last PET, and it didn't come back clean. My SUV went from a 1.4 after round #4, to a 4 after round #7. My oncologist decided to do a biopsy (which put me in the hospital for 3 days blah) to see what we were facing. Either radiaton, or a stem cell transplant. But the biopsy came back completely negative. Which is great news! Just a little confusing... A positive PET and a negative biopsy. So they are recommending radiation, which I was REALLY hoping to avoid since I am only 23... So the radiologist is recommending proton therapy instead of radiation in Loma Linda CA. Just trying to jump through all of the hoops, since they don't normally treat lymphoma with proton therapy, and of course good ol' insurance. Thanks for asking :-)

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