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R-Epoch treatment

bobnkay
Posts: 21
Joined: Feb 2011

Is anyone currently on R-Epoch treatment for large B Cell Lymphoma?

Danboy
Posts: 9
Joined: Jan 2011

My brother is about to start his third cycle of r-epoch for diffuse large B cell lymphoma. He is scheduled to get a PET scan prior to that.

bobnkay
Posts: 21
Joined: Feb 2011

Hi Danboy: My first treatment with r-epoch was in the hospital for continuous infusion. Tomorrow I will get treatment in the clinic and go home with a pump. I was wondering if your brother stays in the hospital for the week or is he getting a pump?
I hope your brother is feeling better now. So far, I have tolerated the first treatment quite well.

Danboy
Posts: 9
Joined: Jan 2011

Hi bobnkay,
My brother gets his chemo as inpatient for 5 days. He also requires chemo in the spine, which is done by the interventional radiologist. Since he was stage 4b, and has required several blood transfusions, I think he will continue to get his chemo in the hospital.
Glad that you tolerated the treatment well.
Where are you getting your treatment?

bobnkay
Posts: 21
Joined: Feb 2011

I received the first treatment in Sunrise Hospital, Las Vegas. My second one was in the Oncology office in Bullhead City, Az. about 95 miles from Vegas. Right now I am in the hospital with pneumonia. I am hoping I will be able to get out and be well enough for the third treatment. Then I will drive to Green Bay, Wisconsin, (I live in a small town north of Green Bay) and hope to receive treatments 4-6. We chose to come to Arizona for the winter because of the snow/driving problems in Wisconsin. My last CAT Scan showed a lot of improvement with only the two treatments of R Epoch. That is very encouraging.

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Bob,
Sorry to hear you are in the hospital with pneumonia. I've been so fortunate since my diagnosis in June to have not gotten sick..cold, flu etc. Take care and I hope you get well soon so you can continue back with your treatments. Drop in and let us know how things are going with you. I'll keep good positive thoughts for a speedy recovery from the pneumonia. Sue (FNHL-2-3A-6/10)

bobnkay
Posts: 21
Joined: Feb 2011

Hi Sue: I am back on schedule with treatment #4. Now the Dr. isn't so sure it was just pneumonia. There might have been several things going at once. It seems one of the drugs in the treatment can cause 'infiltrates' in the lungs. Since all the tests for virus, bacteria, fungus, came back negative, he feels it might be a side-affect of that drug. So this treatment it will be left out of the 'cocktail' and then maybe put back in at a later time, if my lungs are clear after this session.
How are things going with you?. bobnkay 4-29-11

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Bob,
I am doing good..thank you for asking. I received my 2nd maint infusion of Rituxan on the 18th and have had no problems.I'm tired, and my energy isn't where I'd like it to be, but hopefully this will get better in time. I'm glad to hear you are out of the hospital and back getting your treatments. I'll keep good thoughts for your lungs to clear up. Breathing issues are so hard to deal with. Each time I took the prednisone with my chemo it caused shortness of breath which for me was the hardest part of my chemo. Take care and keep us posted on your progress. Best wishes... Sue (FNHL-2-3A-6/10)

catlinwade
Posts: 8
Joined: May 2011

Hello:
New here. I am going to start tx 4 of r-epoch. First was 5 days in hospital, rest have been by pump ( which I have to go Cancer Center daily to refill). I am 66 years old and was in reasonable good health. I used to run marathons and now a walk around a 1 mile track wears me out. I have NHL,unclassified....several testing sites/universities have been unable to get a specific diagnoses which is frustrating for me, my family and my onc. I try to maintain a positive healthy attitude but sometimes swing below the line. Mainly because of the unknown, easier to deal with what one knows then what one doesn't. My question right now is that I have been dealing with a lot of stomach discomfort (burning mostly). I believe this is somewhat "normal" but does anybody have some tips that might ease it a bit, or do I just tough it out. Will talk to onc about it when we meet again.

Hope all here are at peace, feeling good about life and as discomfort free as we can be. Happy Mother's Day to all the Mom's out there!!

Richard

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am doing RICE chemo and this stuff gives me incredible heartburn. I pretty much live on Mylanta, Tums, and Pepcid. Have you tried any of that?

When I did the RCVP the first time I carried mylanta in my purse and would take swigs of it now and then to get through.

Call your chemo nurse and ask her.

Good luck to you!
Beth

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1049
Joined: May 2012

Dixie,

I have had severe, severe reflux for years (not cancer related). Nexium is great, but requires pescription. Nexium by itself no longer works for me, however. I take one or two generic Ranitidine (over the counter) pills a day, and have no problems.

Ranitidine is the active ingredient in Zantac. Tums or Rollaids do me no good at all.

Pepsid does not work for me either. Zantac is much better.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1049
Joined: May 2012

Bobnkay,

I do not know if bleomycin is part of EPOCH, but it is the "B" drug in abvd, which I did 12 infusions of.

It causes lung toxicity in around 10% of all users, and it really messed me up. I still have shortness of breath fairly severely almost three years later, and have a constant cough.

Ask his doc if anything he is receiving is chemically similiar to bleomycin. Several chemo drugs do cause lung toxicity and forms of oxygen poisoning in some patients.

max

KMN
Posts: 6
Joined: May 2011

My nephew was diagnosed Stage IV Primary Mediastinal Large Bcell Lymphoma at the beginning of April, 2011. He's was in pretty bad shape and was started on a chemo that was supposed to be given once every 21 days - I think it might be the R CHOP or Epoch that's been discussed. I've read where it can be given in 14 days if the person is in fairly good shape (instead of the 21 days). My question is: is it possible to get this chemo in less than 14 days? Or is that very dangerous? Unfortunately, he was given a 2nd round of this chemo by day five. The next day he had 5 gran mal siezures, devoloped sepsis, had to have fluid drained from his right lung, and put into a medically induced coma. A few days later they tried to bring him out of the induced coma but he didn't come out of within the first two days and they determined his brain stem was damaged and his brain was dead. They had to turn off life support (He was on a ventillator for about 1 1/2 wks)on April 9, 2011. What I don't understand is why did they give him that 2nd round of a 21 day chemo when he wasn't in fair condition (on a ventilator and kidneys were in partial failure) Can anyone help answer my questions. My sister (his mom) is soooo devastated as is the rest of the family. Thanks, Jack

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Jack,

I am so very sorry that you and your family suffered such a horrible tragedy. It is heart breaking.

It's so difficult to speculate as to what happened and why, without actually having been there. Even then, you may still not get the complete story due to the stress and anxiety of the situation. I can only imagine that the doctors thought that the treatment benefit out weighed the potential side effects. Could he have been on a trial of some sort? The destruction of the cancer cells which is one of the reasons chemo works, ( lysing), can actually cause renal failure.

I pray that your family can heal and find some peace,
Kellie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1049
Joined: May 2012

KMN,

Oncologists and drug companies use a blurb regarding their decision to use treatment, verses not using it, to avoid side-effects. It goes something like

"Your doctor has decided that the potential beneficial effects of drug xxx outweight the potential negative effects of its administration."

In other words, the good it should do outweighs the potential bad it might do, in their professional judgement. It might be the case that, despite his weakness and medical problems, they felt that some cancer killing regimne HAD to get started, despite increased risks. That sounds like the case. These docs are squeezed and have to make difficult judgement calls every day.

Your ordeal was horrible, and I can relate, based upon some of my own experiences with side-effects, and side-effects suffered by others.

The easiest way to find out, I guess, would be to schedule an appointment with the doctor, and ask him directly.

max

Papajohn1950
Posts: 1
Joined: Sep 2012

Just completed the third round of R EPOCH for DLBCL. Responding well but managing side effects has been challenging. Still have some hair. Developed AFIB after second round. Scheduled for a PET Scan at the start of the fourth round. Hopefull for a good PET scan result in two weeks.

trcox57
Posts: 2
Joined: Nov 2012

I'm in my second cycle of epoch r for B cell follicular NHL. Previously did rcvp and Rituxan and bendamustine but relapsed after both courses with 3 months. Diagnosed in June 2009.
Epoch r is distinctly harder to tolerate after round 2. Numbness in my fingers feet and loss of taste and sore mouth when my WBC crashes.
My most bothersome side effect is getting winded getting off the couch and walking to the front door. I didn't have any of that with previous rounds. Also my resting heart rate stays about 110 for some reason. Got everything checked to make sure it's not some thing with cardio toxicity due to the adreomyacin or etopiside.
I'm told the side effects will likely escalate but to what degree depends .......
I'll try to report my experience and grateful for any info from those with similar circumstances.
TonyC

trcox57
Posts: 2
Joined: Nov 2012

Just completed by 3rd round of epoch r and have what I would call acute shortness of breath. Getting up from a chair to go to the front door or taking a shower requires me to sit down as if I had run around the block at full speed. Very bothersome.
I get cytoxan on the Friday of the cycle and that stuff just puts me under for three days.
My doc doesnt appear to be as familiar with epoch as the other regimens I've had but this shortness of breath issue looks like its going to get worse with each treatment.
Any other experiences appreciated.
Tony

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

I was diagnosed with diffuse large B-cell Non-Hodgkin's Lymphoma in July 2012. I have a rare aggressive sub-class referred to as a "double-hit" translocation: there are two mutations going on concurrently. Consequently, the malignant tumor was doubling in area every two weeks.

I started treatment in August 2012. My regimen consists of Rituxan on Day 0 then a 24-hour cocktail of Etoposide, Vincristine and Doxorubicin for four consecutive days. On Day 5, I receive a smaller bag of a carcinogen called Cyclophosphamide. There are several drugs I take, mostly anti-fungal, anti-viral and antibacterial. I also take Prednisone, a strong steroid considered part of EPOCH regimen.

Last week I finished the 5th cycle. I had gone through my first three cycles without hitting the "nadir" (becoming neutropenic). Dose-adjusted EPOCH is flexible in that the dosage changes based on how the patient responds to treatment. Since I didn't hit the nadir, my high dosage was increased by 20% in rounds 2, 3 and 4. By cycle 4, my dosage was 75% higher than in round 1. Because the dosages were increasing, another drug, Mesna, was added to Day 5. Mesna counteracts the corrosive effects cyclophosphamide has on the bladder and kidneys. After cycle 4, I became neutropenic and had a nasty case of oral mucositis. Given the setback in round 4, my dosage for cycle 5 was reduced by 10%.

I have a big decision to make in the next week or so: Do I complete the 8 cycles of EPOCH and call it a day, or do I stop at 6 cycles and move forward with the stem cell transplant. My biggest concern is the long-term effect of high dosage chemo, which increases with the stem cell transplant. For example, exposure to high-dosage chemo increases the risk of myelodysplastic syndrome (MDS). This is when the bone marrow no longer produces healthy red and white blood cells.

Aside from NHL, I am a healthy and active male. I would jog frequently and do other exercises to keep me in shape. I cannot jog now (for risk of passing out), but I do walk a mile or so if it's a nice day and I'm feeling up to it. I also do modified exercises at home with dumbbells. I have a double-lumen PICC line in my right arm; it doesn't dissuade me from using it to do some basic lifting or isometrics (don't go overboard). The key is to stay active--physically, mentally, spiritually--esp. in between treatment. There are going to be your share of bad days, where all you can do is stay in bed and rest. That's fine. Like everything in life; it's a balance. Find the balance that works for you and stay positive!

JP

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1049
Joined: May 2012

JP,

I would create a new thread for this question.

It is very eassy to do so. Buried in this older thread, people who can assist are less likely to see it.

max

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Thanks, Max.

I can do that. My main intent was to offer advice to others on the thread, including Tony.

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