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mediastinum girl
Posts: 2
Joined: Nov 2010



Posts: 8
Joined: Oct 2010

I was diagnosed in July with primary mediastinal large b cell diffused lymphoma. Stage 4. It had spread to my kidneys and bones.
I have one more cycle of R-epoch.
I had a PET scan after cycle 3 and it came back normal. My specialist decided to do the 6 cycle regime = 3 mop up cleans. They harvested my stem cells after cycle 3 for insurance.

I was told the subtype is rare, more common in young
women and v aggressive which is good because the mutant cells have a very short rest cycle.

I have spiked a fever twice thus far. Once after cycle 1 when my counts were up and another time during neutropenia. It might happen again but I always get to ED when my temp hovers near 38 degrees- celsius (I'm Australian).

I have gotten through this experience by learning as much as I can about the disease.
Feel free to ask me anything.

Posts: 9
Joined: Jan 2011

Hi Jian,

My brother was diagnosed with mediastinal dlbcl stage 4b on Jan 19, 2011. Its spread to kidney, liver and bones. He's 27 years old, and has the aggressive form as well.

He just finished his first course of r-epoch, but his vomitting cannot be controlled. He can't keep anything down, including pills.
He also seems fatigued, to the point that he doesn't want to get out of bed.

How was your experience with each cycle of chemo? Did it get easier to tolerate or did the side effects increase?

Hope all is going well for you. Did you require stem cell transplant?

Posts: 8
Joined: Oct 2010

Hi Danboy,

Hope you are still checking this board.

RE: Nausea/Fatigue

Every morning of chemo, the nurses gave me tropisetron either in capsule form or through IV. If I was too nauseated they gave it to me through IV. This was a long lasting antiemetic and I was fine until the evening, where I asked for an ATIVAN/LORAZEPAM - which was originally given to me as an anti-anxiety pill. The doctors told me that it also works well as an antiemetic - anti-nausea pill.

I was sent home with tropisetron, chlorpromazine and ativan. I only ever took ativan when I was at home.

The first cycle of chemo was the toughest because I had no idea what was going on. The 2nd/3rd were fine, but my nadir wasn't low enough. On epoch-r, your neutrophils have to dip below 0.5 X X10E3/uL. I didn't go low enough with cycle 2/3, so they increased the dosage for the last 3 cycles. The cumulative effects were rough.
I became more fatigued and between cycles I was pan-cytopenic for longer. At the time I kept begging them to reduce the dosage because I felt as if I were dying. I couldn't even walk to the toilet without someone helping me and I had to have blood transfusions. But because my bone marrow picked up before each chemo, they didn't reduce my dosage.
At the time, it was awful, but now that I'm out the other end, I'm glad they did what they did because it gives me some peace of mind knowing that there was little chance of a rogue microscopic cancer cell surviving the carpet bombing. So being fatigued isn't such a bad thing, because it's a sign that the chemo is doing what it's supposed to do - ie. wipe out your cells.

By the end of my six cycles I was a physical wreck. It's been two months and I'm still really tired. I have good days and bad days, but it took me about 3-4 weeks post my last cycle before I could spend a whole day out of bed.

Re: Stem Cells.
They were harvested mid way through treatment, and the original plan was to do consolidation STC, but because I had a clean scan mid way through treatment, they were happy to complete the 6 cycles of EPOCH-R and watch and wait.

If I relapse, line 2 treatment is the SCT.

Posts: 9
Joined: Jan 2011

Thanks Jian.
It really helps to know what your experience was and how it was tolerated.

My brother is now in the hospital with his 2nd round of r epoch. So far, there are less side effects than the first time. (The first time was horrible, as the vomiting would not stop). This time they gave him Emend pill for nausea, which he was able to keep down.
But he did require blood transfusion yesterday. The doc said that he was too anemic.

Is tropisetron available in the US?
Did you take any anti acids while on the r epoch cycle?

Posts: 8
Joined: Oct 2010

I had 2 transfusions of red cells.
I was not on an antacid. I was given allopurinol in cycle 1/2 but not after that.

It's harrowing but he will get through it!
The good news is that they have had excellent results with epoch.

Posts: 21
Joined: Feb 2011

Hi Jian: I was wondering if you stayed in the hospital for the r-epoch or if you had treatment in the clinic and went home with a pump. My first treatment was in the hospital, but tomorrow I start treatment in the clinic and go home with the pump. I am a little anxious as how this will work. So far, I have tolerated the treatment very well.

Posts: 21
Joined: Feb 2011

Hi Danboy: I was glad to read that your 2nd round of R Epoch had less side effects than the first time. I am currently in my 2nd treatment but I did not have to go to the hospital for it. I get part of the drugs in the Clinic and go home with a mixture in a small pump. This makes it so much nicer to be home, with family, and just let the stuff drip in me day and night. I haven't had the vomiting problem you had but I also have low blood counts. I have had several blood transfusions, but not since I have started R Epoch.
I hope the treatments continue to cause less side effects for you.

From what everyone says, the treatment does work so I guess we'll have to struggle through it.

Posts: 9
Joined: Jan 2011

Hi Bobnkay,
It's nice that you are able to get the chemo at home. What was your diagnosis and what stage?
My brother is halfway through his third cycle of r epoch. So far, he's been able to tolerate it well. He's required blood transfusions during and after the 2nd cycle.
He had a PET scan right before he started this cycle, showing marked improvement with decrease in tumors. Not sure if they will increase the dosage for his 4th cycle.
I am curious to know if anyone had their r epoch chemo dosage increased

Posts: 5
Joined: May 2011

I have had 6 rounds of R EPOCH my dosage was increased by 20% after the 4th round, in hopes to avoid radiation. I am also having 7 rounds instead of 6. My PET scan after round 4 showed very low activity, which is another reason it increased. As far as side effects go, they are the same as before the 20% increase. Hope this helps...

Posts: 1
Joined: Sep 2015

Hi my name is Alyssa and I was diagnosed with primary medialstinal large cell lymphoma this past June. I have gone through 4 rounds of R-EPOCH. My PET scan was today and my SUV went from 14.36 to 2.88. My doctor told me that the low activity could just be scar tissue or it could be active cancer cells. We won't know for sure until I get another PET scan after my last round (6). MY hope is that there will be absolutely no activity after round 6. I want to avoid a stem cell transplant. Has anyone had a similar experience?

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