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R-EPOCH

Suzie323
Posts: 18
Joined: Mar 2010

Hi, I'm new to the board and am wondering if anyone else is or has been on R-EPOCH. I have primary mediastinal b-call lymphoma, stage 4, and have had one round of chemo so far. I'm wondering what other people's experiences and side effects have been with this particular chemo regimen.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Sorry Suzie but I am not familiar with that. I had 6 cycles of R CHOP and alot of the same letters are in the acronym. Do you know what it is exactly? All the best,
Mary

Suzie323
Posts: 18
Joined: Mar 2010

It's the same drugs plus another one called Etoposide. The difference is it's given over 96 hours continuously (after the Rituxin), so I have to be admitted for almost a week out of every 3. I would think many of the side effects would be the same.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Thanks for explaining that. It sounds like a lot to go through. How is it going for you? I think the main side effect I had was fatigue. I just didn't have a lot of stamina and would run out of gas quickly. Some of the others were, my taste buds didn't work right, I had the chills every day mostly at night, my fingers and toes got numb, my mouth was very sore and tender but I didn't get any open sores and of course lost my hair,eyelashes and half my eyebrows. Sounds like a lot but all in all was pretty manageable. I am now 8 weeks out from my last treatment and most of those things are just a memory. My hair is about a half inch long. Still tire more easily but that is getting better too. Good luck and keep me posted. Mary

Suzie323
Posts: 18
Joined: Mar 2010

Congratulations on finishing up - and having your hair growing back!! I'm mostly just tired at this point, and I've had mouth soreness which seems to be gone for now but I'm sure will be back after round 2. My hair is starting to fall out - I'm worried about losing my eyebrows more than anything else. Did you find that your side effects worsened with each round of chemo, or was it pretty much the same after each round? I'm just trying to figure out what to expect - although I know every person is different.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I know the feeling of needing to know what to expect,I was the same way and ppl on here were extremely helpful so lets see if I can be. The first two treatments were probably the scariest because I was scared of all the unknown side effects, blood counts etc. I had a PET scan just before treatment 3 which was clear so that helped. Although my blood counts dipped during days 10 thru 14 they always rebounded by my next treatment without any additional intervention. My MD had reassured me that he could see my pattern now and I would follow that same one until I was finished and he was right. I took it easy and tried to stay
out of the public during that 10 to 14 day window when I was most vulnerable to infections. I never did develop a fever but did get a couple of colds which acted like
regular colds. The mouth continued to be sore with each treatment sometimes really bad and other times not as. I found using a baking soda toothpaste and nightly rinses with a baking soda and salt mixture to be very helpful, both things they had recommended and I never did get any sores. My lips felt swollen and coffee was too hot and even the bubbles in

pop hurt.But you get through it and it's a perfect excuse to have ice cream!! My MD had also warned me that by treatment 5 and 6 the fatigue would be worse and again he was correct. The side effects didn't worsen but I think the body in general was tired of the assault. By that time I remember thinking that the last treatment couldn't come soon enough
but it did and then I was done.The hair thing is creepy and I have a lot of hair so it seemed to go on forever but it sure took me less time to get ready to go anywere. As to the eyebrows...I didn't notice that until over halfway through and at first thought they just looked lighter then realized there were less of them. I am very dark haired so I always had eyebrows just smaller ones and ppl didn't notice that. Also lost most of my eyelashes and had to stop using mascara. It just made the few I had left look weird. My eyes were a little sensitive but again this happened toward the end.It's been remarkable how fast the eyelashes and eyebrows returned, it was the first thing I noticed so try not to worry too much especially if you are brunette. My MD stopped the Vincristine after treatment 2 because of the numbness in my fingers and toes. He said it was the least important and not worth the side effects. That numb feeling took a fair amount of time to go away but it did. This has gotten really long but from recent experience I know what it meant to me to have ppl share their info. If you have any other questions that I may be able to help with please feel free to ask and best of luck. Mary

Suzie323
Posts: 18
Joined: Mar 2010

Thanks for sharing your experiences - it is definitely helpful info and I appreciate it. Suzie

AmandaNoelle82
Posts: 1
Joined: Apr 2010

Hi Suzie,

I underwent R-EPOCH for PMBCL IIA in 2005, went into remission after the second cycle, and have had no existing disease since then.

I haven't calculated what cycle you're in now, but you've probably lost your hair and get the mouth sores by this point. Fatigue will be horrible - it took me about three months post-treatment to feel like a normal person again. I was given Emend before each cycle and didn't have nausea problems.

If you're getting mouth sores, make sure your oncologist writes you a prescription for magic mouthwash - it has one of the -caines and Benadryl in it, and does make you feel better. Also, Colgate Sponge Bob (yes, Sponge Bob) toothpaste hurts the least out of all toothpastes for brushing your teeth.

My hair came back five months after I finished treatment - same color and texture, although my my hair is not as thick anymore anywhere (which is at least good for my legs - I don't have to shave them as often anymore!) There are shampoos that could help with hair growth, but I just let mine be.

I'm sure you've experienced or heard about most of what to expect, but if you have any questions, feel free to e-mail me at amanda@amandamarsh.me - always willing to help!

randyslovacek
Posts: 1
Joined: Jun 2010

I had non-hodgkins lymphoma last year and went through six rounds of R-EPOCH.

I did fine. I finished in October of last year and all my side effects are gone and I have all my hair back.

My main side effects were fatigue, numbness in my fingers and loss of all my hair.

The first oncologist I saw told me R-CHOP was the text book treatment but the second doc at Cedar Sinai in LA told me R-EPOCH was a newer approach and showing better results both long and short term.

I never got sick or threw up during the six months of treatment, but the 96 hours of being attached to my portable chemo pump (I nicknamed it Bumpy) did get on my nerves after a while. Just a bit of claustrophobia of being attached everywhere I went.

But I'm fine today and got through. Please feel free to ask ANY questions I can try to answer.

And I'm thinking good thoughts your way.

Randy

FightForMom
Posts: 2
Joined: Jan 2012

My mother was diagnosed with stage 3 follicular NHL and she completed six cycles of R-CHOP. Somewhere between the 4th and 6th treatments it became refractory and thus in early December she was diagnosed stage 4 diffuse large b cell lymphmoma that became aggressive after the 4th treatment.

Now she is on her second cycle of EPOCH-FR and she takes Revlimid as part of her protocol. I know EPOCH-FR may not be the preferred or standard whereas R-CHOP is, but she has had a great turn around. All we can hope for now is that the cancer does not become resistant to this chemo as well. (Also, the "F" is for "pre-transplant" patients as that is yet another avenue for us to explore but she has to get to remission first)

I would like to know if anyone who was diagnosed stage four has gone into remission due to this treatment or if anyone had no real results with R-CHOP but responsive to EPOCH-R

Thank you for sharing because I find it very helpful.

Mom's levels dropped frighteningly low but she rebounded amaxingly and her spirit has stayed strong. Good luck to all those that are fighting now.

Jian
Posts: 8
Joined: Oct 2010

I am on cycle 4 of the regime as I type. I was also diagnosed with stage 4 pmdlbc NHL. I have had three rounds thus far. After round 1 vinchristine was reduced according to protocol but my bloods did not dip low enough. Then pre stem cell harvest everything was raised 25 per cent.
I had a PET scan pre cycle 4 for mid treatment progress and the scan was all clear.
At my hospital here in western Australia, the regime is still unfamiliar to some of the other consultants as there are so few cases of pmdlbc lymphoma.
Reading these posts puts my mind at ease.

I am not sure what lies ahead whether it's one or two more cycles... Whether they will do the abmt now or if when I relapse.

But it is so reassuring to hear other ppl
experience.

I am 34 and female.

Pipiolo52
Posts: 1
Joined: Apr 2011

Starting my 3rd cycle of EPOcH on April 18th, 2011. Rituxan was given on first cycle. So far it's o.k. except the usual -hair loss and constipation. But since I starte this regimen I am feeling better prior to March 2, 2011. After this next cycle I have three more to go. The second cycle - medication was increased 20% so I felt the difference from my first cycle. I'm still o.k. and will see what happens starting Monday when I begin cycle three. Right now the only thing is carrying that pouch with the medication and pouch around for 5 days.

Juan

nhlfighter2011
Posts: 1
Joined: Dec 2011

Hi,

I am a 27Y old male diagnosed with DLBCL stage IIBX. My current oncologist suggested for 6 cycles of BFM-90, Had 4 cycles and due to MTX's over toxicity now the for 5th and 6th cycle R-EPOCH will be the protocol.

Actually i had a mis diagnosis in my initial treatment. Instead of DLBCL it was diagnosed as GCT. After 8(4BEP + 4VIP) cycles using a second Biopsy we found that initial diagnosis was wrong.

Forumers please tell me if the protocl is changed in between will there be a problem?

I would like to include one more info that i had a PET scan after cycle 3 and the max SUV is 5. Initially the SUV was 19.1

Cancer Fighter

Morgenland
Posts: 1
Joined: Jan 2012

Hi, I was diagnosed with PDLT and underwent two treatments of R-CHOP, they performed a CT scan before the third to discover my lymphoma had spread and grown despite treatment. This led them to the conclusion that I had the Burkitt's form of lymphoma, apparently one of the most aggressive forms of cancer. I begin R-EOCH on Monday. I appreciate the information posted here and I am posting in hope of keeping this board active.

I have already gone through the hair loss of loss of feeling in the fingertips. My biggest issue is that I went into this with low platelets and the chemo only made that worse. At day six, I would plummet into the teens and get transfusions every three days. I'm worried that this stronger treatment may cause an even greater drop.

ld_35rich
Posts: 1
Joined: Jan 2013

Hi Suzie,my husband is on his third round of R E-Poch this week.He stays in for 6 days every 21 days.He hasen't experienced alot of sickness,but by third day,he is feeling flushed and usually has some swelling in the legs and ankles.His Neulasta shot he gets 24 hrs after treatment make him feel terrible.He has alot of body aches and bone pain.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Suzie,

Go to chemocare.com .  Your combo is EPOCH, with r (rituxan) added.

The site explains each drug and their side-effects in detail.  Good luck with your treatment.  It also lists what drug each letter stands for, under its Acronyms section.

(Etoposide, Prednisone [a steroid], Vincristine [a vesicant], Cyclophosphamide, and Doxorubicn [also known as Adriamycine, and nick-mamed "Red Devil", in part because it briefly turns urine red or pink colored]).   With the rituxan added.

Most of these combos overlap, or share a few common effective drugs with other combos.  At least three of your drugs are also in r-chop, for instance.

max

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