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R-CHOP Pending

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Greetings all! Long story short, I am a survivor/fighter for almost 8 years now. Last year no treatment, but prior to that 19 rounds of Rituxan for Non-Hodgkin's, B-Cell, Follicular, Indolent, Stage 3A. Below left ear LN started swelling October 2016 (almost 5 cm. now) and Lymphedema started in right leg in February of this year for what turned out to be an inguinal LN on the move. Went back to Stanford for reassessemnt (working with my oncologist in my area) and transformation likely. So...R-CHOP recommended within the next week or two.

I'm just seeking any tips from those of you who have been there done that. I had some reactions with the Rituxan (went to hospital once for major reaction) but overall the two year treatments gave a partial response and gave me last year without treatments.

Thank you and God bless. Stay strong and fight hard.

Aaron

 

PBL
Posts: 182
Joined: Jul 2016

Hello Aaron, 

I had six rounds of R-CHOP in 2016 for Stage 4 Primary Bone Follicular Lymphoma and am currently finishing my two-year maintenance Rituximab.

R-CHOP is pretty standard chemotherapy. I'm afraid the hair and moustache will have to go! Rest assured, it will grow back after you're done with treatments.

Not everybody gets the same degree of side effects, but the major issue with R-CHOP, you may find, is constipation. One of the drugs in the combination, Vincristine, is the culprit. Combined with the anti-nausea medications that you will get (and you do need those), it can make you miserable if you do not take action: drink lots of water (some magnesium-rich mineral waters are a great help), always have laxatives at hand (and use them!), eat plenty of green vegetables and prunes for fiber and vitamins, etc.

Other than that, you are likely to feel like you are riding a roller-coaster, as you will be having high doses of Prednisone for the first five days of each cycle. The Prednisone is part of the chemo regimen. It works synergistically with the other drugs to help kill as many of those cancer cells as possible. It also helps maintain your appetite and alleviate any pain and fatigue - so, it must be taken as prescribed. During those days, you will be instructed to avoid salty foods as well as sugar to prevent any hypertension or hyperglycemia.

The first couple of cycles may seem pretty easy to get through. However, the effects of chemotherapy are cumulative, meaning that you will feel the full effect in terms of fatigue and other side effects as you progress towards the last cycles. Staying physically active on a daily basis is essential to save as much muscle mass as you can, which should make it easier for you to bounce back after treatment is over. You will have to find the proper balance between moderate activity and rest - just listen to your body.

Proper hygiene (hand washing, food handling, steering clear of young children whenever possible) should save you a hospital visit and enable you to stay on course with respect to treatment schedule.

It does not look like much fun, but keep in mind that many others have made it through this - and so will you. 

Hope this helps.

PBL

 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi PBL. Thank you very much for such a detailed response. I am printing out this and all future responses to keep me not only realizing that others like yourself have survived this and care enough to give a fellow fighter some tips, but to give me the motivation and strength when it gets rough.

God bless and thank you.

Stay safe.

Aaron

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

I was diagnosed with follicular non-hodgkins lymphoma. Did 6 cycles of R-Chop which did not quite get it all. So then I did 3 cycles of Rice (which is a 3 day treatment in the hospital). I finished the 2 years of Rituxan last Oct. 

I have IBS so when I was diagnosed and read up on the drugs I would be taking I took special notice of the constipation.  I found a recommendation on a blog to start taking the stool softners the night before I started chemo. That and lots of water did the trick. 

 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Thank you for the tips! God bless.

Evarista
Posts: 254
Joined: May 2017

Hi Aaron, so sorry you have to go through this.  But it's doable (I did R-EPOCH which is basically R-CHOP + 1 more nasty).  6 rounds, 5-to-6 days each time. Repeat every 21 days. PBL has covered the basics very well, but since you mention that you are going to Stanford and it sounds like you live out of area, I have some questions that you might ask, so ask to make the logistics a bit easier.  Here goes:

1) Inpatient or Out?  Some clinics do one, some do the other, some give you a choice.  I'm assuming that you will opt to do "in" so that you do not have to commute daily.  But:

2) Can you do some of the in-between stuff in with your local oncologist?  In-between stuff is a) Neulasta.  Ask Stanford about Neulasta-Onpro, so that you do not have to travel back to PA 24 - 48 hrs later or see if you can get the conventional shot locally.  b) Blood work: 2X per week.  Can you do it locally? c) PICC or Port?  If PICC, can you get your caps changed & lines flushed locally (1X/week)? I'm just imagining how I would have felt if I'd had to drive over Hwy 17 for each of these things! I might not have been able to do it!

The "drill" goes like this:  Day 1: Rituxan (~3 hrs) followed by a 24-hr chemo bag with the H & O of CHOP.  The P (presnidsone) is oral. Day 2,3,4: new HO bags + oral P.  Day 5: new HO bag + oral P. When the HO finishes, you get the C (cytoxan), ~45 min followed by a saline flush. Again, I'm assuming that the routine for R-CHOP is pretty much the same as for R-EPOCH, but someone will correct me if I do not have this right.

The other thing that I always aimed for was getting started on Day 1 as early as possible, just to avoid after midnight bag changes down the line.  Try to be up and about as much as you can while in the hospital to help yourself stay fit. It will also help with the constipation issue that PBL mentioned. 

Lastly, many of us have had good luck using Claritan (10 mg) to prevent or ameliorate the bone pain associated with Neulasta.  It must be loratadine; other anti-histamines don't work.  Check with your doctor, but starting it a day or two before the Neulasta seems to work.  I skipped it once...Not a mistake I will ever repeat.  I'm sure there's plenty that I've forgotten...I hope it goes easily for you.  Good luck.

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi Evarista. Fortunately, my treating onc is in Salinas so about a 20 min. trip. I will be doing all treatments there as I did with just the Rituxan. You and PBL make good points about the constipation so I will definitely try to stay ahead of that game. I had no idea about Neulasta and the helpfulness of Claritan. As I mention to PBL, I'm printing out any responses here to help me stay strong, focused, informed, and hopeful.

God bless and thank you very much for taking the time to write. This means a lot to me.

Aaron

illead's picture
illead
Posts: 834
Joined: Aug 2012

Hi Aaron,

     Not sure if you are specifically asking about rituxan, but my husband did have a reaction when starting it with his relapse again.  He was initially on it with Bendamustine in '11 then on 2 yrs. maintenance, but he relapsed right before his last infusion with rit.  He had a reaction with his very first infusion in '11.  He had severe rigors and a high fever.  Since they were the same side effects along with night sweats and hives that he had prior to diagnosis, we chalked it up to that.  In Sept. '17 6 mos ago, when he relapsed again, he was put on rit again and sure enough he got the rigors again but no fever.  His onc ordered demoral which had no effect, except to lower his bp so much the onc stopped the rit.  He started again in a couple days and they put it in very very slow plus only a half bag at a time so as not to waste it again.  He sailed through it and has an infusion once a month now with no problems. This relapse business is not fun but I know you will get through it and once again get on with your life.

My best to you and your family,

Becky

 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Thank you for responding. I took 19 rounds of Rituxan over a two year period (2015/2016) and had some minor reactions twice, once major which sent me to the hospital by ambulance. That last one though was because they pushed it too fast. After that fiasco, my sessions were slowed down and no issues. Hopefully no new issues with that or the CHOP part.

God bless.

Evarista
Posts: 254
Joined: May 2017

You may find the days long, especially while in-hospital.  I found reading too difficult and TV got old, so podcasts and audiobooks were my "go-to".  I highly recommend a bluetooth headphone so that you can use these to help you sleep (prednisone may keep you awake). You can find some really "lulling" audiobooks for free at librivox.org.  A 6-month subsucription to Audible.com would be a great gift if anybody asks you what you need!  Also, CD's from TheGreatCourses.com (the streaming is expensive, but you can find good sales on the CD's if you have a portable CD player). Understand that visits may be limited and you may not feel up to them anyway, so having gentle activities lined up is good.

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Thank you for the advice. Good excuse to ask my wife if I can buy some new bluetooth headphones instead of corded ones...Smile

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

i was diagnosed with stage IV FNHL on my birthday In 2011. I too had R only induction with 26 total infusions. Now it is back and I will be  getting FCR (fludarabine, cytoxan, rituxan) therapy starting in 10 days. I was wondering why RCHOP was chosen for your relapse vs something else? My hunch is that RCHOP is given by many docs almost by default. It is considered almost a standard treatment with well known effects. Did you discuss “why rchop?” with your physician? Have you looked at alternatives? Thanks for any input and best of luck to you. As for R, I had a serious reaction on my first infusion but smooth sailing the rest of the way. I am so swamped with symptoms now that I have no idea if any of them are delayed R effects. 

 

Life will always be full of challenges and trials.

Accept that and determine to have a good time anyway!

yesterday is gone forever, tomorrow belongs to no one. Today is all we have! 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi ShadyGuy. Well, the short version is that I have a deep inguinal node that is rapidly growing and causing massive lymphedema in my right leg. Because of how deep it is and where it is at, even the Stanford surgeons think it's really risky to try and get a sample for histology. Likewise, the radiologists do not even want to go there with a needle biopsy as it just so happens to be very close or against some major veins to the leg.

That being said, because I've recently had night sweats and the lymphedema, the conclusion at this point is that it is most likely diffuse B. Interestingly the LN under my left ear was recently biopsied and still showed being follicular. As far as this treatment, in the end I was told that the R-CHOP is being used because of success in recent trials which showed an 80% 5 year OS for both low-grade and transformed lymphomas.

Does make me wonder what makes your combination different from mine and why is well.

Stay strong and God bless.

illead's picture
illead
Posts: 834
Joined: Aug 2012

I do think you are in good hands at Stanford.  When Bill relapsed the first time in '14, with Mantle Cell we were referred to Stanford and they were up on the latest.  At that time Ibrutinib had only been released 3 mos. prior for MCL and Dr. Advani put him right on it and immediiate remission.  She was on the research team for Ib along with  the head of the team Michael Wang at MD Anderson who we are also seeing.  So I am sure they know what they are doing with the rchop even if it does sound a little different.

You stay strong also,

Becky

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

I am fortunate to be seeing Dr. Advani as well. Thank you Becky.

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

we chose FCR because the small cell lymphomas (like the similar CLL cells) respond well to fludarabine. My doc says he has found that people like me who responded well to R-only induction therapy do very well on Fludarabine after first relapse. He often sees CR after 2 rounds and depending on the specific case sometimes stops at 4 rounds. I am hoping to stop at 4 rounds but only time will tell if that happens. After the chemo then I will go onto Rituxan maintenance until if/when I relapse again or a grizzly bear eats me. Once again, good luck! The bear will say “Whew! That human had a chemical taste!“. I am optimistic and hope to be back to my hut in Alaska for caribou season in September.

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Love the grizzly joke! Stay safe out there...

PBL
Posts: 182
Joined: Jul 2016

R-CHOP is indeed the preferred combination when dealing with transformed (or suspected) Follicular lymphoma. I also discussed the hematologists' decision during my first appointment, as I was leaning more toward B+R as being "easier" than R-CHOP. That was met with a flat refusal, and I was told that I might be compromising my chances of achieving remission - so, R-CHOP it was.

In hindsight, and after much reading, I understand that, since I had suffered a spontaneous fracture, and presented with multiple bone lesions, high SUV as well as significant weight loss - even though the bone biopsies only yielded "follicular" lymphoma, there were sufficient arguments to treat as aggressive or potentially transformed.

As to grizzlies, I think you will be pretty much protected against that risk for a couple of years at least - I know mosquitoes have left me alone for two years, and there has been some exchange on this forum about pets avoiding posters who had had chemo...

PBL

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Thank you PBL. For me I hope insects stay away...I'm a magnet for wasps and bees for some reason. Laughing

yesyes2
Posts: 581
Joined: Jul 2009

Hi Aaron,  We are sort of neighbors as I live in Santa Cruz and my husband worked for County of Monterey with his office in Salinas.  Sure is a small world.

I was given RCHOP for my B cell NHL.  I had 6 infusions followed the next day by my Neulasta injection, given at the doctor's office.  The RCHOP is a single day cycle, out patient.  It makes for a long day althiugh it is very doable.  Since you have already had Rituxian your first infusion should not be as long as most.

Biggest warning is to watch out for constipation, which can be terrible.  I took Miralax for several days after each chemo and that worked for me.  I got Thrush after second chemo and was given a medication to take throughout my chemo, which also helped with the constipation.  I did not notice bone pain with my Neulasta shots but Clariton (sp) if taken for 5 days is supposed to help.  I think you take it one day before cycle and than 4 days after.  BTW, I would think your local Hemo/Onc would give the Neulasta injections so you wouldn't have to travel the Hill.

Insects stayed away from me during treatment also.  My understanding is the insects can smell the toxins.  When I was receiving chemo for Breast Cancer back in 1992 I had a house bunny who loved to lick my hand when I was on chemo but never did after I finished treatment.  Never knew if I was a danger to him or not, sure hope not.

Best of luck,

Leslie

 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi Leslie. Small world indeed! If you don't mind, how did your first few days/week after each cycle go for you as far as being down and then getting up and about? I'm supposed to have 3 weeks between the cycles. I know everyone is different but my only gauge is having gone through the two years of Rituxan and also dealing with my wife going through chemo for breast cancer in 2012.

Thank you.

Aaron

Evarista
Posts: 254
Joined: May 2017

YesYes: is R-CHOP treatment typically only one day infusion per cycle?  I thought I had seen it as a multi-day course, the way R-EPOCH is.  Or does it depend on the diagnosis?  One day sounds so much nicer than 5 days!

I had the most mosquito-free summer ever last year and my dog was not happy with the skin smell either.  But that made it easier to keep her away and off the bed, so, it all worked out!

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

i think RCHoP is indeed the preferred combination here in the states but less so in Europe. I may regret the choice but only time will tell. Actually I think FCR is every bit as harsh as RCHOP but of course that depends on the dosage. Fludara is extremely toxic.

PBL
Posts: 182
Joined: Jul 2016

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). 

Evarista
Posts: 254
Joined: May 2017

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3256
Joined: May 2012

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.

PBL
Posts: 182
Joined: Jul 2016

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?

Evarista
Posts: 254
Joined: May 2017

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.

yesyes2
Posts: 581
Joined: Jul 2009

Hi Evarista, yes RCHOP is only one day as an out patient, but a very long day.  It's my understanding that R-EPOCH is the chemo of choice for DLBC.  Most other NHLs, both aggressive, like mine was, and non-aggressive forms receive RCHOP.  RCHOP was considered the gold standard but don't know if it still is.  I had asked if I was a candidate for EPOCH and my Hemo/Onc said no, you don't have DLBC, similar but not the same.

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi all. Port installed today...sore, but managing. R-CHOP starts Tuesday and it will be done at the local hospital. Thank you all for your responses, much appreciated!

Stay strong and I will keep you posted.

Aaron

Amarie121
Posts: 4
Joined: Mar 2018

@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!

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

I really appreciate all of the advice...well noted. I have heard alot about making sure the nurses wipe down the port...gonna be my priority.

Thank you for the prayers.

Stay strong and God bless.

Aaron

DJS628
Posts: 47
Joined: Mar 2018

Hi Aaron,

I am new on here and it looks like a good support group!  I just posted my first post a few minutes ago.  Anyway, I just wanted to say "hi," and let you know I had R-Chop (three treatments) for my Diffuse Large B-Cell Lymphoma in the fall of 2015, then again last summer (2017) when it came back.  I had minor side effects to the treatment.  Seems like I would have some nausea a week or so after each treatment for a few days.  I also had the constipation problem.  After treatment shots to up my counts gave me some bone pain, but it was very managable.  There were a few days where it got me kind of bad in the lower back.  But it was temporary.  I had the pain before my stem cell transplant, too.  They gave me three times the dose to stimulate my stem cells into the blood, so it was a little worse.  But as soon as I no longer was getting the shots, the pain went away.  The pain wasn't constant when I had it, either.

I know someone who had follicular lymphoma, was in remission, then two years later, she said it transformed to a b-cell lymphoma.  Sounds like you?

Try to take one day at a time.  You will be in my prayers that treatment will be well-tolerated and it does its job well!

Take Care,

 

DJS628

P.S.

During my stem cell transplant, I was told that the Claritin would help with the bone pain. 

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Hi DJ. Been away from the boards but on my last day of the Pred regiment (5 days, 100mg), which I feel has been the worst part for me. Thankfully the nausea was minor and I took Zofran for a few days - none today. No real bone/thigh pain experienced, of course I had 19 Ritux before so used to that most likely.

Looking forward to the few weeks of hopefullying feeling good - 1 down, 5 to go.Smile

Amarie121
Posts: 4
Joined: Mar 2018

I had never heard of R-EPOCH so I looked it up.  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.  (No disrespect intended towards those who are taking R-EPOCH.)  Google R-EPOCH vs R-CHOP if you need more confidence that R-CHOP is a better choice. (Of course, asking your Dr is also a great way to go!):-)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3256
Joined: May 2012

Amarie,

I find an argument that R-EPOCH would ever be LESS effective than R-CHOP curious, given that R-EPOCH IS R-CHOP, albeit with one drug added (Etoposide).   Ergo, anything R-CHOP can do, R-EPOCH can logically do also.

It is true that R-EPOCH is ordinarily described as much harsher than R-Chop, which would have to be because of the Etoposide, or some polytoxicological effect -- drugs interacting and creating effects that, individually, none of them have.  This is mostly encountered in sedatives and narcotics, but chemo could do so also, I suppose.

max

 

Amarie121
Posts: 4
Joined: Mar 2018

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.

Evarista
Posts: 254
Joined: May 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3256
Joined: May 2012

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.

Evarista
Posts: 254
Joined: May 2017

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
Posts: 581
Joined: Jul 2009

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. 

Evarista
Posts: 254
Joined: May 2017

Thank you, YesYes for your comments.

po18guy
Posts: 989
Joined: Nov 2011

Until genomic profiling and the veritable mountains of coillected data are crunched by Google and other super-computer concerns, and produce some trends that are useful, we are guessing that a given treatment will be efficacious. At least B-Cell patients have a gold standard. If you are one of the red-haired step-children with T-Cell Lymphoma, you and doctor are essentially handed a machete and pointed toward the jungle.

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