R-CHOP Pending

PBL said:

One day!

Although the question was for Yesyes, I can answer that R-CHOP is indeed just a one-day per cycle infusion - R, followed by C - H and O (can't remember the exact order, but I believe H came last), followed by five days of Prednisone by mouth. I believe what you described was R-EPOCH (which I haven't had, but have only heard about). 

For my mis-information above.  How nice to only have a "drill" of one day, outpatient.

Yes, I remember thinking that one day certainly was enough!

Did you ever get any information on why you were given EPOCH instead of "just" CHOP?

PBL said:

"Nice" enough!

Yes, I remember thinking that one day certainly was enough!

Did you ever get any information on why you were given EPOCH instead of "just" CHOP?

As YesYes notes below, dose-adjusted R-EPOCH is the chemo-of-choice for DLBCL.  Plus, I was pretty darn sick:  in bone marrow failure with HLH (Hemophagocytic lymphohistiocytosis) which is life threatening.  I went from lab results to ER, blood transfusion, and admission within 8 hours. I am also a "double-expressor" so very onboard with "Let's be as agressive as we can possibly be without killing me."  FWIW, I am at at NCI-designated cancer center.

PBL said:

One day!

Although the question was for Yesyes, I can answer that R-CHOP is indeed just a one-day per cycle infusion - R, followed by C - H and O (can't remember the exact order, but I believe H came last), followed by five days of Prednisone by mouth. I believe what you described was R-EPOCH (which I haven't had, but have only heard about). 

My neighbor did R-EPOCH for six months.  It is administered over 3 or 4 days, frequently as an inpatient. Some report being able to commute and tolerate it as an outpatient also (I believe inpatient is more common).

Although R-EPOCH is R-CHOP with one additional drug (Etoposide), the experience is commonly reported as much harsher than R-CHOP.  Etoposide is also in the pre-transplantation regimine ICE, and ICE is universally described as brutal; perhaps the Etoposide is part of why.

@AaronW: Hello!  I was initially looking for advice/support with relapsed follicular lymphoma, but I couldn’t pass up an opportunity to try and encourage you with your R-CHOP.  I was diagnosed with Stage 3 Diffuse Large B Cell and Stage 4 Follicular at 45 years old 2 years ago.  (I’m in remission from DLBC but follicular is back...)  I went through 5 rounds of R-CHOP (couldn’t do the 6th due to being severely neutropenic most of the time). Honestly, it was so much better than I had expected.  I only got sick one time.  The nausea was handled by Zofran and occasionally infusions at my oncologist.  Aside from the hair loss (I’m a woman who loved my hair!) the nausea was my most dreaded part of this but it was not as bad as I had feared.

Here are some things that helped me: 

Cold and frozen coke/ginger ale during post-chemo days.  I used 2 Zoku Slush and Shake Makers, always keeping one in freezer while using the other.  As I had bad hot flashes after chemo, I also kept a small fan by my bed.

Having a thermometer handy.  I was severely neutropenic and was hospitalized multiple times for this.  You may not have this issue; apparently my dr had never seen anyone this unable to handle chemo, but having a thermometer handy was helpful and signaled that I needed to get to the hospital when I had neutropenic fever.

Shave your head once you start losing hair.  Otherwise you may feel as I did-like Gollum from Lord of the Rings!

The Claritin does help with pain from the Neulasta/Neupogen shots.  Advil also helps.  I went to my dr daily for these shots and never had much pain except for twice while in hospital and I’m sensitive to pain as I’m a pain patient due to RSD/CRPS, so you may never have to worry about this.  I’d take the Claritin preventatively though.

Be sure your nurses ALWAYS use mask and wipe port area well when about to access it.  I got an infected port which put me in ICU (almost died) and made me have to get it removed.  They put in a central line until I could have another port installed.  Now I am fastidious about being sure nurses use proper precautions.  

Put out a bottle of Purell for visitors.  It isn’t worth it to risk getting sick.  Your immune system will be compromised  and your friends and family won’t mind keeping you safe.

As a Christian, it helped to have people pray with/for me.  It also helped to have Scripture written down and kept handy for times I needed encouragement.  I blogged on Caring Bridge and the encouraging comments from friends were a lifeline in the middle of the night when I couldn’t sleep.  Find ways to get support that will encourage you to look beyond how you feel in the moment.  You can do this!  One day at a time...

I’ll be praying for you this week!

With all due respect, I find it inappropriate for anyone to come on this forum and suggest that someone may be getting the wrong treatment.  If you have looked at the scientific/medical literature at all, you know that "It depends".  Presentation, age, stage, double-hit, double-expessor, above the diaphragm/below the diaphragm, de novo vs. relapse, etc., etc.,  For some diagnoses, R-CHOP is the recommended course; for others, DA-R-EPOCH.  If anyone is unsure as to their treatment regimen, they should look for answers from their HEMATOLOGIST-ONCOLOGIST. It the answers are not forthcming or not satisfactory, get a new doctor.  Or get a second opinion, preferably at an NCI-designated cancer facility.  Vent over.

By way of example, if your tumor expresses Ki-67, R-EPOCH is superior.  Raise your hand if you know what Ki-67 is!

Amrie, I do realize that you are new to this forum and I do want to welcome you.  I hope that my comments do not come across as overly harsh.  But, while we are lumped together as NHL, we all in fact have different diseases. Decisions about therapy are so much more than what a particular publication or particular personal experience says.  Your post actually put me into some temporary panic about whether I got the wrong thing.  I had to go back to review my notes and talk to my spouse about the decision before relaxing again about it. Would I rather have had R-CHOP instead of DA-R-EPOCH?  Absolutely...It looks like a walk in park in comparison!  But my tumor was a double-expressor and 100% Ki-67 positive. So...DA-R-EPOCH for me.

yesyes2 said:

R-CHOP vs R-EPOCH: ask your doctor!

Evarista, I am in agreement with most of your above rant.  Some times I think there is way too much information available on the internet today.  My understanding of the difference is as follows:  The current gold standard for DLBC is R-Epoch, both DA and not DA.  For my rare aggressive lymphoproliferative disease RCHOP was and still is the gold standard.  R-Epoch I believe is only used in aggressive lymphomas and not in FL, where as RCHOP is used for non-aggressive lymphomas.  So sorry you were second guessing your decision.  It's hard sometimes especially when new research and or drugs come on the market.

Amarie121, welcome to the board and sorry that you are now facing a recurrence of your FL.  There are some on here who also have had to face chemo more than once.  My original NHL recured within a year when I was still on Rituxin so I was than treated with RCHOP.  I have been in remission for just 8 years this month.  Even though it was aggressive I will never be considered cured as the reason I have lymphoma are still there.  My disease is EB virus immuno supressed. 

Thank you, YesYes for your comments.

Amarie121 said:

Please re-read

Re: the responses to my comment.  The comment was intended for Aaron, to give him peace of mind as he begins R-CHOP.  It was not an argument and I did not say it was less effective, but I could have been more clear in my choice of words.  It is a harsher chemo and not always preferable, which is why I made the comment to ask the doctor.  When others stated that one was superior over the other it did not raise such alarm, and I was only responding to that, as it seemed unsupportive for someone who was nervous about getting R-CHOP.  I certainly only meant to be helpful to the person asking for help.  I am truly sorry to anyone who took offense and I will no longer post here or come here for support, as this whole experience in trying to be supportive of someone has only made me feel even more alone and I have enough things to cry about right now.  I am very very sorry if I offended anyone.

Hi Amrie, and thanks for getting back to me/us.  My reaction was to this sentence: "Apparently it isn’t considered as good as R-CHOP for most B cell lymphomas (mediastinal B Cell excepted); has more toxicity without any therapeutic gains over R-CHOP."  Added emphasis mine. I am more than happy to put this down to a poor choice of wording and I am gald to hear that your intent was to be supportive for Aaron.  Which we are all intending to be.

Please do not quit the forum.  I sounds as though you have a great deal of "experience" and probably a lot to contribute. We all inadvertently put our feet in it from time-to-time, me included.  I understand that you meant no offense and I hope that you understand that I didn't either.  My wording could have been better as well. We all need all the help we can get, right?  All the best.

Amarie121 said:

Please re-read

Re: the responses to my comment.  The comment was intended for Aaron, to give him peace of mind as he begins R-CHOP.  It was not an argument and I did not say it was less effective, but I could have been more clear in my choice of words.  It is a harsher chemo and not always preferable, which is why I made the comment to ask the doctor.  When others stated that one was superior over the other it did not raise such alarm, and I was only responding to that, as it seemed unsupportive for someone who was nervous about getting R-CHOP.  I certainly only meant to be helpful to the person asking for help.  I am truly sorry to anyone who took offense and I will no longer post here or come here for support, as this whole experience in trying to be supportive of someone has only made me feel even more alone and I have enough things to cry about right now.  I am very very sorry if I offended anyone.

I re-read your post in question, Amarie, per your suggestion.

I must tell you that I never take "offense" at anything anyone writes to or regarding me which, over the years, has happened a time or two.   I always put on my big boy pants before looking at this site.  I also do not detect anything in my response to you that suggested I had felt any "offense."  It was written dispassionately and attempted to convey a few relevant facts. You certainly have nothing I am aware of to apologize for, to me or anyone.

My post addressed what I saw as a bit of scientific inaccuracy in what you wrote, nothing more.

Second, most here realize that "Googling" oncology information is usually more confusing and inaccurate than doing nothing.   Do you suppose that that patient's Board Certified oncologist knew less about the relative merits of R-CHOP v. R-EPOCH than a Google article that knew nothing about the patient's clinical particulars ?  Think about it.

As Evarista wrote in her statement to you, without a doubt everyone here welcomes you and hopes that you remain on board, for your own benefit, and the benefit of others.