Requesting for info on treatment of aggressive DLBCL

Danboy

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.

He just finished his first course of r-epoch, but his vomitting cannot be controlled. He can't keep anything down, including pills. He's constipated as well. An abdominal CT was done, but nothing was detected. We are waiting for GI consult.
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?

yesyes2

DLBCL
Hi Dan,

I wanted to welcome you to the CSN. I am so sorry that you and your brother and your family have to go through this cancer experience.

I did not have DLBC but a similar aggressive NHL and received 6 cycles of RCHOP, so I can not speak on REPOCH chemo. There are several members who have had DLBC and I'm hoping they chime in, weekends can be a little slow. There are also several new members who are receiving REPOCH treatments. As you know this chemo is very harsh and he will be followed by his doctors very closely.

I can only speak about my experiences on RCHOP which has some of the same chemo drugs. The Vincristine is known to cause constipation, which I had really bad the first cycle. After that I was on a double dose daily of Miralax until after my last cycle. I'm so sorry about the vomiting, can't they give him something through his IV? The fatigue is par for the course and not getting out of bed is not unusual. I found that the side effects of the chemo were different with each cycle. As chemo is cumulative you do get more fatigued with each cycle. By cycle 5 and 6 I was really beat, basically couldn't do much of anything at that point. Couldn't climb stairs, have a 2 story house, or do anything but watch TV and look forward to being done with chemo. Treatment is hard, very hard, but it is do able. And the fatigue does get better as you get further and further away from treatments. And hopefully this chemo will put your brother in remission.

I hope I was of some help to you. I am now almost one year in remission and feeling much better than I did a year ago. And as hard as it was for me I would do it again.

With blessings to you and your brother,
Leslie

KC13167

DLBCNHL
Dan,

I'm so sorry to hear about your brother. I had 6 cycles of R-CHOP for DLBC-NHL,stage IV; with remission in Oct.2010.

My fatigue and nausea increased as time went on. By cycles 5 and 6, I was DONE. I had never thought that I could ever be so tired. I still suffer from fatigue and usually nap every afternoon. There was a pattern to my symptoms during each 3 week cycle. I would feel well for the first few days following chemo, then would feel horrible until after day 12. I spent most of that time period in bed. The most important lesson that I learned was to listen to my body and to drink as much water and other fluids as possible.

All the best to you and your family,
Kellie

tcvine

DLBCL
Hello Danboy,

Very sorry to hear about your brother. I know that it is hard on your entire family.

In July of 2010 I was diagnosed with diffuse, large, B-cell lymphoma, stage 4 (liver). In my case, it became clear that I have had the disease for a very long time without identifiable symptoms. After treatment began I could associate certain pains and feelings with the tumors that had been growing for 10 years or more. By the time it was diagnosed it had become very aggressive. My onc at MD Anderson told me that I would not live through the rest of the year without treatment.

However, my treatment was R-CHOP. I don't know what the difference is between that and R-EPOCH. However, my experience turned out to be better than most. Mostly, they were able to control the nausea with medication, so I never had that fundamental problem that your brother (and many people) has experienced. But the fatigue is very common and very real. It really kicks your butt. And for me it got worse as treatment progressed. But after the 4th infusion (out of 6) it suddenly hit much harder. I had no endurance at all.

The other side effect that hit me pretty hard was neuropathy. So much so that my onc decreased the dose of vincristine. It has continued well after the treatment ended. Mostly it's in my feet, and I am losing my toe nails now from the chemo that I got last year.

All that was the bad news. The good news is -- it works!
As of Dec. 21, my scans indicated that I am in remission. And I turned 60 during my chemo, but your bother's age gives him an advantage. So please review the postings on this board because you will hear stories like mine. The treatment sucks, but the results really can be the best.

My very best wishes to your brother and you and your whole family,
Tom (DLBCL-Stage 4-7/10-Remission)

Danboy

tcvine said:

DLBCL
Hello Danboy,

Very sorry to hear about your brother. I know that it is hard on your entire family.

In July of 2010 I was diagnosed with diffuse, large, B-cell lymphoma, stage 4 (liver). In my case, it became clear that I have had the disease for a very long time without identifiable symptoms. After treatment began I could associate certain pains and feelings with the tumors that had been growing for 10 years or more. By the time it was diagnosed it had become very aggressive. My onc at MD Anderson told me that I would not live through the rest of the year without treatment.

However, my treatment was R-CHOP. I don't know what the difference is between that and R-EPOCH. However, my experience turned out to be better than most. Mostly, they were able to control the nausea with medication, so I never had that fundamental problem that your brother (and many people) has experienced. But the fatigue is very common and very real. It really kicks your butt. And for me it got worse as treatment progressed. But after the 4th infusion (out of 6) it suddenly hit much harder. I had no endurance at all.

The other side effect that hit me pretty hard was neuropathy. So much so that my onc decreased the dose of vincristine. It has continued well after the treatment ended. Mostly it's in my feet, and I am losing my toe nails now from the chemo that I got last year.

All that was the bad news. The good news is -- it works!
As of Dec. 21, my scans indicated that I am in remission. And I turned 60 during my chemo, but your bother's age gives him an advantage. So please review the postings on this board because you will hear stories like mine. The treatment sucks, but the results really can be the best.

My very best wishes to your brother and you and your whole family,
Tom (DLBCL-Stage 4-7/10-Remission)

slow gastric motility
Thanks so much for your input.
My brother had endoscopy done today. No obstruction was detected, yet he still continues to vomit. The GI specialist mentioned slow gastric motility as a possibility, but he did not prescribe anything.
The palliative doctor will decrease his dosage of fentanyl patch, but says that it may not have much of an effect on his vomiting.
It's so frustrating.
Has anyone had a problem with slow gastric motility?

MauiViv

my dh has undergone 3
my dh has undergone 3 sessions of r-epoch. he has not had too many problems. he gets zofran for nausea before each session and he has not had any nausea at all. zofran does cause constipation so dh prepares by taking a stool softener with each meal and 2 senna laxatives at night. if he still has problems he takes miralax as well. he does get very tired for a week or so after each session.