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Has anyone had rEPOCH cycles for DLBCL ?

LaurieKW
Posts: 14
Joined: Sep 2013

Completed 6 5-day cycles of rEPOCH for Diffuse Large B-Cell Lymphoma earlier this year and have not met anyone with this treatment and I know there must be others with this experience. How are you doing and how long did it take you to start getting things together?  Would appreciate your response(s).  

BlessedinPNW
Posts: 14
Joined: Oct 2013

Sorry Laurie, I guess from the lack of responses, no one has had this course of treatment (or if so, they haven't read your post).  I just finished six rounds of RCHOP to be followed by radiation for DLBCL stage IV.  Makes you wonder why one doctor recommends one treatment over another.  Are you having problems?  Hope you get a response soon.

Toni

DHcaregiver
Posts: 1
Joined: Nov 2013

My husband just started rEPOCH for DLBCL/Burkitts/Double hit lymphoma. He just finished his first round Monday but exhausted today.

Annie

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi Laurie and welcome to the site.  I was treated wtih R-EPOCH (6 cycles in hospital) for Diffuse Large B Cell Lymphoma.  Thankfully, I have been in remission now for nearly 2 years!  My next scan is this coming Monday (11/11) and of course am getting SCANxious :).

Reaction/recovery to/from treatments varies among individuals.  I still have issues with fatique and "chemo brain" but it has improved some and I do have some good days on occasion.  I have other medical issues that along with the lymphoma qualified me for disability so I may not be a good example for you but I wanted to respond.  R CHOP and R EPOCH are very similar as they have all the same letters (chemo) except for the "E" (etoposide).  There are many on this site who have received one of these treatments and I'm sure more will respond.  

Big hugs, 

Jim

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1082
Joined: May 2012

Bless your 11/11 results.  Everyone here knows Jim is the Mann, and can know no fear !  Anyone living near the Blue Ridge is without fear .

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Thank you, Max.  I have lots of fear but I choose to laugh at it most of the time :).  

 

LaurieKW
Posts: 14
Joined: Sep 2013

Thanks Jim.  Your news is good to learn of.  I am back to work but still have issues with neuropathy in my feet and have tried almost everything but avoiding some of the drugs, ie neurontin.  Congrats on your two years 

kind regards,

 

LaurieKW

Cerato
Posts: 18
Joined: Nov 2013

Hi Laurie,

i'm glad that you posted.  

I had 6, 5 day rounds of R-EPOCH for DLBCL/double hit, starting Dec 2012.  I also had a SCT a couple of months after the R-EPPOCH.  I was feeling pretty good between the chemo and the SCT, but then again I tolerated the R-EPOCH well.  Only symptoms were some fatigue and mouth sores.   I also tolerated the STC well and felt energetic and good to go after a couple of months.  Unfortunately, I pushed it and did way too much and set myself back, both physically and mentally, so now I am committed to taking it easy until I've  given my immune system and my body/mind enough time to really heal.

From what I gather, everyone is different in terms of healing and has their own schedule for return of energy, etc.  And as far as I can tell it is not necessarily a linear process.

i'm still really new to all of this, but what I would offer is this:  Try to be as patient as possible with yourself, love yourself, know that you will have good days, just okay days, and some lousy days.  Eat as well as you can. Be around people who love you.  Do things that bring you joy and a sense of hope. Remember that we are all out here rooting for you.

With warmest wishes,

Cerato

BP NHL
Posts: 2
Joined: Jan 2014

Cerato,

it it sounds like we have a similar diagnosis with DLBCL double hit. I also had a large reptoperitoneal tumor (approx 23 cm) that was causing problems with my left kidney among other things. This resulted in a nephrostemy bag which I was connected to for about 3 months. I was diagnosed in Sept 2013 at stage 4 and immediately started treatment with hyper CVAD.  After 2 rounds, the mass had decreased by 50%. We proceeded with 2 more rounds of hyper CVAD but a follow up PET scan revealed very little change in the mass.  My Dr. Decided to treat me under round 5 with RICE.  This initially seemed effective as my LDH was getting back to normal but after several weeks it started to elevate.  I am currently in the hospital undergoing R-EPOCH to see if this regimen for round 6 is more effective in killing the cancer cells and further reducing the mass.

The plan has been to move towards a stem cell transplant but I need to be in remission with the mass reduced to 5 cm or less.  It is currently about 11 cm based on the last scan from about 4 weeks ago.

This is my firtst times on this site, let alone posting, and I am hopeful others can shed some light on any similar experiences with this same diagnosis.  We are starting to get worried and discouraged, wondering if we should seek a second opinion. I am currently being treated with a top rated doctor at a we'll known hospital in the greater Los Angeles area and to date, I have been very happy with the level of care. It's just when it seems things may be regressing, you start to think and worry if other avenues/options Should be considered.

i welcome any feedback from you or others.  Thank you.

BP

Cerato
Posts: 18
Joined: Nov 2013

Hi Laurie,

I just realized that the last paragraph in my first message to you are mostly reminders to myself!  Lol.

take care.

Cerato

Rocquie's picture
Rocquie
Posts: 488
Joined: Mar 2013

That is the beauty of participating here. . .

(((Hugs)))

Rocquie

paella
Posts: 4
Joined: Jun 2012

Wanted to reply to your message, LAURIE -  

I just happened to peek into the site today because of a survey sent by this network.  I’m happy to give you my personal take on your query.  Everyone IS different, though, and as Cerato said it is definitely NOT a linear process.  My very short answer is:  took a full 10 months to feel good and another 6 to feel generally great…these days I range from 90 to 98 percent my former self J .

The longer answer is as follows: I am almost two years post-treatment for stage IV DLBC + some grade 3 Follicular (Dx in ‘2011 at aged 62).  My 2-year petscan is scheduled for next week on 12/12/13.  I was treated with R-Epoch during six 5-day cycles in hospital, each cycle consisting pretty much of 24/7 infusion.  I also had a lumbar puncture each cycle to analyze spinal fluid and to put a prophylactic chemo into my brain.  

Treatment was finished on 1/14/12; Neulasta was administered on 1/15/12…always felt worse after Neupogen but the Neulasta was a *****.

Months 1 and 2 post-treatment – Lots of fatigue.  Still paranoid about mouth-sores (they never happened) but religiously following mouth “protocol”.  Seems like every joint, ligament, cartilage and connective tissue aches.  Generally it’s just moderate achiness but it is body-wide.  Nothing I can’t handle as long as it eventually goes away.  Using 1 and occasionally 2 oxycodone (5/325) most days.  Cyclobenzadrine 5mg (a muscle relaxant) sometimes helps.  1 mg Ativan at bedtime helps me sleep.  Very very minor fingertip neuropathy.  Not much danger of overdoing anything due to fatigue, but am walking 1 – 2 miles every day, cooking, cleaning house, staying on my feet as much as possible.  Feel very positive and upbeat.  Determined to remain ferocious.  Eating well with a good appetite.  Still minimizing the amount of time spent “amongst people” due to fear of infection, although my blood work at no time during or since treatment has shown alarming changes in white or red count.  I swear the Neulasta is still THE culprit in my achiness, but I suppose the 600 hours of chemo hold most of the responsibility.  Can’t imagine going back to my pre-retirement 14 hour days….but sleeping and eating well.  Late in month 2, I start walking the golf course while Bill played. 

Months 3, 4 and 5 post-treatment – Fatigue diminishing, energy increasing gradually, general achiness continues but is rarely severe.  Some days worse than others.  Ibuprofen seems to help – still taking 1 cyclobenzadrine most days but almost no oxycodone.  Increasing activity, sleeping a little less, napping less, exercising more.  Fatigue suddenly worsens from time to time as do aches.  Neuropathy gone.  Walking and playing 9 holes of golf now (on non-hilly courses). 

Months 6 and 7 – Continued improvement on the achiness front…but am beginning to wonder if it’s permanent new me.  Hope not.  We did a 6 week road trip tied into a family wedding and it was just the ticket.  Hiked nearly every day, walked & played a lot of golf.  Used a cart for several rounds of 18 holes, though.  Kept longest driving days to 7 hours tops and was glad that some days were only a couple hours of car time.  Concerned about “chemo brain”, but trying to remain relaxed about it…playing lots of brain games on the computer.  

Months 8, 9 -  Find myself worrying about every little thing and am more emotional and anxious.  Still have some 1mg Ativan and find that it helps. 

Months 10 through 15 – Almost feeling like my old self.  Aching doesn’t seem as widespread and some days isn’t there at all. 

Months 16 through 23 – Almost nothing negative to report.  Is it my imagination or am I more  susceptible to knee and back minor injuries??…wonder if there’s any connection to the chemo, but can’t find any layman-type research to back that up.  Could just be age (will be 65 in 2014). 

So, Laurie, that’s my take. 

Be determined that you’re going to kick this cancer’s punk ass and remain:  ferocious, furious, intense, strong, powerful, forceful, fierce, passionate, strapping, sturdy, tough, stalwart, robust, solid, durable, resilient, heavy-duty, hard-hitting, enduring, raging, unstoppable, commanding, authoritative, prevailing, dominant, potent, vigorous, determined , mindful, audacious, willful.  And thankful.

 

Cerato
Posts: 18
Joined: Nov 2013

Paella,

That is one awesome post!  Informative and inspiring.  Thank you so much.

Continued good health and wellness!

Cerato

LaurieKW
Posts: 14
Joined: Sep 2013

I cannot thank you enough for your response and I apologize for the delay in my response.  I have been going through some of what you described - and I agree about the Neulasta injections. I had to go back to work full time in August and that is very stressful.  I work out and walk regularly - just started Pilates Reformer which helps (and it is hard to hurt your back on that thing). Physically, I have regained about 70% of my former strength.  I am scheduled for my follow-up exam and labs tomorrow. Not sure when my next PTscan will be as my oncologist at UCLA feels the amount of radiation is of concern - apparently new guidelines were discussed at this year's ASCO meeting.  Really glad you are back on the golf course - I feel the same way a bout my walks and hope to participate in a half marathon in January (walking) with a team from Cancer Fit.  Again many thanks for your post and may God bless you and your family this holiday season.

paella
Posts: 4
Joined: Jun 2012

Have to say it sounds like you're doing quite amazingly well.  The full-time-back-to-work is a big undertaking...do your co-workers, bosses, etc. understand what you're going through and are you able to occasionally work less than an 8 (or 9 or 10!) hour day?  Even walking a half marathon is *****in' my dear but isn't it true that the exercise makes you FEEL victorious?  Go!

I had my 2-year post treatment petscan last week and it was clean, clear, beautiful and superdooper.  However, according to my wonderful hematological oncologist at the City of Hope, it will be my last one.  I think it has to do with the new ASCO guidelines you recommended because I'd previously been told that I'd have one petscan per year until year 5.  Having had 7 or 8 or them plus 1 CT in the last 26 months means I've had way more radiation than one should have in, I guess, a lifetime.  Anyway, that worries me a little, but the every-6-months blood work and visit with the doc will be fine. 

Here's to making you're life as stress-free as your situation allows. 

Happy holidays to you and your faimily, too.  Stay in touch from time to time, OK?

Paella

 

 

 

paella
Posts: 4
Joined: Jun 2012

Didn't think they'd put asterisks in my reference to female dogs (a saying that I'm hearing more these days and which means VERY COOL...it was very common to hear this phrase in California in the 60's...if you know what I mean.

LaurieKW
Posts: 14
Joined: Sep 2013

Hi Paella,

Thanks for your input - much appreciated. Really working on my walking in the 1/2 marathon, I think I may not be totally realistic about how well I will do, but you never know unless you try and unless you try ....  Just had good dr report and labs with primary oncologist ( I have 3) - I still go every three months.  Still having issues with neuropathy and more recently joint problems due to the rituximab portion of the rEPOCH cycles.  Have yet another appointment with a new dr - a rheumatologist with oncology specialty.  Who knew??  I guess i will find out.  Work is full time - no option for part time or work from home.  

About the Petscan - kind of a good thing avoiding radiation but, as you said, it is worrisome.  You have confidence in your oncologist, so that is a good thing. 

Really ly appreciate your comments.  Wishing you a healthy and joyous Christmas & New Year.

 

laurie

 

BP NHL
Posts: 2
Joined: Jan 2014

Paella,

I loved your post treatment summary.  This is my first time on this site and your message was very encouraging. It looks like you said you have been treated at City of Hope which is also where all my treatments have occurred during the past 4 months.  Since I am new to the site and haven't had a chance to read a lot of the posts, I am curious if you also had a stem cell transplant and if all your chemo regimens were R-EPOCH or were others tried.  I'm currently under this treatment for round 6 bit previously I had 4 initial rounds of hyper CVAD followed by RICE during round 5.

Currently a little discouraged with what appears to be some regression so I am seeking a way to find some optimism and hope as I definitely need a stem cell transplant but need to get into remission with my mass reduced much smaller than its current size.

welcome any thoughts, suggestions, etc.

 

much thanks,

Bryan 

paella
Posts: 4
Joined: Jun 2012

Hi, Bryan

 

Sounds like they’re putting you through the mill in Duarte.  I read about CVAD and understand that the side effects can hit one pretty hard.  How was that for you?  Were you an in-patient the entire time?  And how are you handling the side effects of the R-EPOCH?  I remember quite distinctly thinking that round 6 felt more like a 10-day event rather 5. 

 

I did not have a stem cell transplant nor anything prior to the R-EPOCH. 

 

I will say that my overall and general health has always been very good, so hearing that my “backache” was an aggressive and very advanced cancer really threw me for an utter and completely surreal loop (as it does absolutely everyone – no matter the state of their health, their age, etc).  Without putting too much merit on it, however, I felt and still feel (down deep / in my soul / existentially) that this wasn’t/isn’t gonna’ get me.  Advanced/aggressive DLBCL can be treatable - possibly, curable.  Great.  I’ll take that kind, please and thank you.

 

I trusted my doctor explicitly and from the get-go.  When she told the stunned two of us (me and wonderful-support-system-husband who spent 30 nights on one of Hope’s chairbeds) that we’d beat this thing, I believed her. 

 

So, here’s how I found optimism and hope:

 

Be 100% obedient and compliant about everything from mask-wearing and mouth-caring, to drug-taking, exercise-getting and water-drinking (I pee’d every half hour what with saline drips and bottled water).  Everything.  If a nurse suggested to use only the softest of toothbrushes and to buy an expensive imported one if necessary, that’s what I used.  No floss, no semi-annual tooth cleaning at the dentist for a while.  No crowds.  No children.  No restaurants unless you’re mostly apart from other eaters.  Wash hands constantly and long-enough each time to sing the “happy birthday” song?  Sure thing. 

 

Eat often and well when you’re not nauseous.  Read up on how focused relaxing and “purposeful breathing” can help nausea and practice that.  Drink ginger tea (Traditional Medicinals) and make quarts and quarts of carrot/ginger soup (recipe available upon request). 

 

Keep out of bed as much as you can.  It’s hard when you’re in hospital and almost impossible when you’re in isolation and/or pain.  But sit in a chair as much as you can instead of in bed.  Stand as much as you can.  Walk.  Walk.  Walk. (8 laps at Hope = 1 mile).  Walk slowly until you can walk faster.  At home, do chores (little chores are fine).  Being active doesn’t mean running a half-marathon…just try to be up and about until you can be more up and about.  You’ll probably sleep better, be less worried/scared, have a better self-image, etc.

 

Smile as much as you can.

 

Listen to music. 

 

Listen to books especially while you’re falling asleep.

 

Take advantage of Ativan.

 

Watch movies that make you laugh.

 

Don’t listen to the news channels.

 

This one will sound weird and I’m not going to try to explain it…just try to be your finest self during this really crappy time.  Your loved ones, your friends, YOU all hate that this has happened but it is happening.  It helped me a bit to think of myself as a role model as I went through this painful experience.  Hmmm…sounds Leo Buscaglia-ish (“embrace even the bad parts of YOUR life”).

 

Respect your cancer but take every chance you can to put it in its place…be rude, call it a no good #^*#> and, while I don’t agree with personifying it, simply tell it that you plan to kick its punk ass. 

 

Bryan, I just re-read this and I think it sounds a bit sanctimonious and smug.  Listen, I don’t have any answers – just know what worked for me and my particularly situation. 

 

Be thankful that you’re living in a time when our kind of illness IS beatable.  And, try to think of yourself as ferocious, furious, intense, strong, powerful, forceful, fierce, passionate, strapping, sturdy, tough, stalwart, robust, solid, durable, resilient, heavy-duty, hard-hitting, enduring, raging, unstoppable, commanding, authoritative, prevailing, dominant, potent, vigorous, determined , mindful, audacious, willful. And thankful.   

 

Here’s to you!

 

paella

 

 

vinslymphoma
Posts: 24
Joined: Feb 2014

awesome post..i like the spirit..and especially the last statement...i am not letting this cancer to take on me..i will defeat it soon..:-) 

 

Slk444
Posts: 2
Joined: Jan 2014

I too had 6, 5 day rounds of R-EPOCH for DLBCL -- stage IV.  I had my last cycle in early September, but just joined this group today!

Which explains my surprise at reading everyone's posts. I've sort of been operating under the assumption that -- short of a recurrence -- this was a terrible chapter in my life that I can put behind me (physically anyway).  I had some residual numbness nod back pain (from all the spinal treatment presumably) which actually got worse in the weeks following the last treatment, but they have since all but subsided.  Even my fatigue has improved greatly, and I'm back to work full time (albeit self-employed so I have the option of going in late some days when I feel the need - but also am up until after midnight working when I'm under a deadline...).  I've become somewhat of a juicing and exercise fanatic, which I suspect has been helping me regain my strength. 

What at brought me here today is the inexplicable symptoms I've developed recently (4 months out from my last treatment) that I now feel may be treatment-related.  I've been experiencing lots of joint pain -- especially in my knees and along my spine, but also sometimes I my ankles I initially thought that perhaps I had injured my knees exercising, but I use an elliptical (would be pretty gentle to the knees) and really have not upped my routine lately -- if anything, I've been doing less.  And it's equally in both knees, which you wouldn't expect from an injury. 

Anyway, I'my happy to be here, and look forward to getting to know you all better!

 

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Welcome to the site.  You'll find supportive and caring folks here and you are not alone  Relating to your joint pain, I had some issues myself mostly in my shoulders and saw an orhtopaedic specialist.  He suspected it was inflammation and we treated it with anti-inflammatory meds (Aleve type) and discussed physical therapy to improve range of motion.  The meds did the trick and I didn't have to do the therapy.  

It would help us here if you would fill out the "about me" info in your profile so we can reference that easily for details about the type of cancer, where it occurred, etc.  That way others with similar situations can relate and chime in.  I hope you find an answer and relief for your pain.

Hugs and positive thoughts,

Jim

Slk444
Posts: 2
Joined: Jan 2014

Just did... Thanks Jim. 

 

poppysummer101
Posts: 1
Joined: Sep 2014

Hi! I saw this post by chance and felt I had to comment (had to register for an account first). I had rEPOCH in Jan 2012 after being diagnoised for Stage 2 DLBCL in the mediastinal area. I was 24 at the time and I was absolutely shocked. My oncologies recommended a 6 round, 96 hour each, dose-adjust rEPOCH for me to eliminate the need for radiation. Given my age, gender the area of the mass, radiation could have very negative side effect down the line (i.e. breast cancer). I thnk the biggest drawback for me was having to put my life on hold for 6 months, not being able to work and live as normally - more from the psychological aspect. I was very fortunate to receive a lot of support from my doctor, friends and family, and I think my docter did everything she could to kept me feeling as normal as possible - closely monitoring my blood count, giving me naulasta shoots to keep my immune system normal, giving blood transfusion when my red blood count was too low. I also had a port in place because my veins did not always cooperate, and the port helped tremendously. One month after chemothearpy I took a trip to Alaska and Europe. I started working full-time again 2 months after finishing the chemothearpy. So far I've been cancer-free for 2 1/2 years, and truthfully I am not worried about it coming back. After my second chemothearpy the CAT scan indicated a close-to-100% remission, but afterwards I still finished another 4 even stronger dose chemothearpy, so I am confident that my doctor and I have done everything we needed to. 

 

Best of luck! 

 

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