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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: 2111
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: 1914
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: 2111
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: 690
Joined: Mar 2013

That is the beauty of participating here. . .

(((Hugs)))

Rocquie

paella's picture
paella
Posts: 40
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's picture
paella
Posts: 40
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's picture
paella
Posts: 40
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's picture
paella
Posts: 40
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: 2111
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! 

 

melvaroo
Posts: 1
Joined: May 2015

Hi Laurie,

 

I know this is an old post but given the nature of Lymphoma and remission times im hoping this is ok to reply to. If nothing else i hope that some one like me see's it and finds it helpful in some way.

 

I am a male, 36 years old as of Sept 2014 and i am from the UK, in Cambridge and here is how my story goes.

I should probably point out that in the UK we have a national health service(NHS) and i received my treatment through that.

 

In Late November 2014 i went to the doctors(local GP) with a shoulder injury and a small lump on my neck, it was like a pea under the skin along what i describe as a tendon in your neck area.

Due to the lump, i had a blood test done which came back with raised ESR. I looked this up and from what i understood it meant there was imflamation "somewhere". Given that i had a virus the previous week the doctor said it may well of been that but to keep an eye on the lump and come back if it had not gone away.

Well the lump did reduce in size but was still there, i went back to the GP and this time saw a different DR as my DR was on leave. This DR gave advice to rest and not to worry about things.

After a week of not sleeping i went back to my main DR. When i say not sleep i mean literally i could not sleep as when i did it felt like my throat was closing when i fell asleep and i would wake choking. This went on and on. Eventually i noticed blue veins on my chest which looked more visable that normal so went to the DR.

As soon as she saw me she booked me into the hospital and i was on a ward within the hour.

I had a CT scan that showed a large mass in my chest area and was told that i would need a biopsy to tell what this was. But they were pretty sure it was a Lymphoma.

I had a biopsy in another hospital and then was taken to another where i would receive treatment. Thankfully this is addenbrookes hospital and known to be one the best places to be to get treatment.

Over the the period of about a week, during the biopsy time i developed some swelling on my right arm and hand. It was serious and felt so pressured i wouldnt have been surprised if my arm exlpoded it was that big! Well this led to a ultrasound and they found a clot in one of my veins near my neck, at least that where the scanner found it. I was put on a blood thinner for this straight away. It was called Dalteparin and was given via injection to my stomach twice a day. This was to be given to me for the foreseeable.

We are now half way through December 2014 and waiting for the biopsy results. I was told i could start treatment until they knew the specific type of Lymphoma as this would dictate the amount and type of treatment i would receive.

While i waiting i being a man was advised that due to the chemo, my sperm count may be affected and my chances of having children may become impared. My some miracle in October my partner and I found out we were expected our first baby so at least i had this news to keep me positive and a goal insight.

Irresepctive of this i chose to freeze some sperm in case there was issues after the chemo and if we decided to have more children. Again this was on the NHS in a clinic nearby. 

When i got back from the clinic i was told i hade a Diffuse Large B Cell Lymphoma. I was given information in the treatment i was being offered which was DA-REPOCH. I would be given this every 3 weeks for 6 cycles. Each cycle would run over a 5 day period and the chemo would be given constant over a 24 hour period. The next cycle would be 3 weeks from the start of the previous treatment not the end!

The DA-R-EPOCH stands for:

DA = Dose Adjusted - meaning they will adjust the dose as you go through the treatment cycles. Started at x amount then increasing by 20% each time until you hit your threshold, which will be determined by blood results and monitoring along the way during your cycles.

R = Rituximab - I was given this on day 1 of the treatment and would take around 2-3 hours to give.

E = Etoposide - mixed with the other chemo drugs to make the chemo being given over the the next 4 lots of 24 hour infusion, so days 1-4

P = Prednisalone - This was given to me in tablet form and was given twice a day for days 1-5

O = Vincristine - mixed with the other chemo drugs to make the chemo being given over the the next 4 lots of 24 hour infusion, so days 1-4

C = Cyclophosphamide - I was given this on day 5 after the 4 lots of 24 hour infusion had finished. This only took 15 minutes or so to give over infusion.

H = Doxorubicin - mixed with the other chemo drugs to make the chemo being given over the the next 4 lots of 24 hour infusion, so days 1-4

See this wiki page for the detail on R-EPOCH http://en.wikipedia.org/wiki/EPOCH_%28chemotherapy%29

 

The treatment went really well, after 2 treatments i was booked for a PET SCAN to see how the mass was doing. I was told that the scan was agood and showing great signs, i was also told there was no cancer anywhere else! 

The treatment continued to go well. I felt fine through the treatment week but the following week 2 was a struggle. I felt fatigue like i had never felt it before. So tired but nothing would chnage it. No amount of sleep would take away the tiredness.

In week 2 i always had 3-4 blood tests to monitor my blood counts and from this the DR would decide how much to increase by next cycle. I really like my blood visits, the out-patient ward E10 at addenbrookes is an amasing place and full of what can only be described as Angels. These nurses are happy and make you feel good every minute you are in there, i cannot thank them enough for what they done for me and do for others, they deserver so much more in the way of thanks! I have been lucky enough to get have great family support and friends too, but without these nurses things wouldnt have been the same.

Week 3 of the cycle was what i called my good week. Other than a visit to my consultant to see how i was i had nothing booked, no drugs, no bloods and i felt great! I liked these weeks and soon learnt that this was the week i had to make the most of.

My treatment was frozen at level 3 out of 4 increases, this was down to my blood levels tracked below a certain point which is the trigger for the stop of increasing the chemo strength. I was also reduced on the vincristine as this was to blame for some numbness in my finger tips. It was causing me typing to me messy and the DR said they have to reduce this to prevent any risks of permanant damage to the nerves.

I did get an infection where my temp went to 41 C and i was admitted into hospital to disocver my Line had caused the infection. This led to my last cycle being done as an in patient. I should add that only my 1st and last treatment cycle was given as an in patient. The rest was done as an out patient using a portable pump. Yes i carried that chemo around for 4 days in a backpack and went in to hospital for the refill every 24 hours.

I finished my treatment on the 15th April 2015, this was the last day of chemo!!!! 

2 weeks later i had my PET scan to see what the results are and i am pleased to say that i am in remission!!!!!!!<*** src="/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/emotions/***/smiley-smile****" alt="Smile" title="Smile" border="0" />

Its now May 20th 2015 and i have an appointment to see if i wish to go ahead with radiotherapy aswell as the chemo. it is here where i simply dont know what to do! i am told that the americans do not give radiotherapy after successful chemo but the europeans do.....

Given the mass is in my chest i am told that radiotherpay risks later cancer to my lungs and heart disease! which needless to say i would like to avoid. That said do i take the risk and get the added benefit of radiotherapy potentially zapping any hope of this coming back??

I would love to hear from anyone who has or hasnt had radiotherpay following DA-REPOCH as it seems a hard decision to make.

 

Keys things to remember:

Stay happy

Surround yourself in good things and nice people.

Get rid of stresses and negative things that will get drawn to you.

STAY POSTIVE! You are in good hands and there are people that can help if you are struggling. I am one of those people! please please contact me if you feel i can help as i would love to help others in my situation. Afterall i understand it now. At least most of it :-)

 

Love to you all!

Melvaroo

1 day at a time
Posts: 9
Joined: Jun 2015

Hi Melvaroo, 

I just signed up on this network and I'm surprised to see there aren't more recent posts on this topic.  Let's hope we get some more people responding with their current info.  We can all learn from each other!  I read your post with interest.  I am envious of your backpack situation allowing you to avoid some hospital time.  Congrats on being in remission and all the best with your radiation decision. 

I am an otherwise healthy and active 59 year old female.  I was diagnosed with Diffuse large B-cell lymphoma in March 2015 after finding a hard lump in my neck. I had multiple lymph nodes involved, an enlarged spleen, and bone marrow involvement.  I was put at Stage 4B (had night sweats which is the B). All the tests happened quickly and right away I started with r-CHOP.  The plan was to have 6 rounds every 3 weeks.  However, after completing 2 rounds I was switched over to r-EPOCH, for the remaining 4 rounds.  The switch happened because after getting a 2nd opinion, that pathology showed I actually have a more aggressive sub-type of DLBCL, due to an over expression of double proteins, BCL2 and MYC (this is not the same as double-hit lymphoma which is a translocation of genes). My doctor said that patients with double expression do much better on r-EPOCH than r-CHOP.  I had a clean PET /CT scan after my 2 cycles of r-CHOP, and then after the first round of r-EPOCH (=3rd of 6 total chemo cycles), I had another bone marrow biopsy. It also came back clean.  Clean scans are of course wonderful news, but the big concern is will the cancer come back, as this is an extremely aggressive form. 

It's unfortunate with these rarer unusual subtypes that the science just isn't complete enough to know the best course of action.  My doctor is an expert in this area, and explains that the data aren't conclusive yet on recent studies. Some think it is best to wait for a relapse to go ahead with a stem cell transplant, other studies have suggested there is a better outcome with an autologous stem cell transplant done as soon as you have remission.  I am having my stem cells harvested next week, but the jury is still out on whether or not I'll be having a SCT anytime soon.  For now they will be frozen and should the decision be made to go ahead with a SCT, then I'll have healthy stem cells ready. I am having daily injections of Neupogen for 7 days to get ready for the harvest.  Just one more crazy part of this unwelcome road I have to go down.

I would like to think that once my chemo is over I could feel some sense of getting back to a normal life, but I'm sure it is hard not to worry about a relapse.  I have been fortunate that I am handling the chemo well. I have 5 day stays in the hospital, and then am home for 16 days. Although when I first come home I am very tired, it is so great to be free of the tube you are tethered to 24/7 in the hospital.  I feel so blessed that I have not had any nausea or mouth sores, and my appetite continues to be strong. I am on a leave from my teaching job, and am very cautious about exposure to germs.  My husband and I miss eating in restaurants, however we decided to not take a chance as you never know what's going on in the kitchen!  I truly am trying to take everything one day at a time, with a positive attitude.  My support circle of family and friends are wonderful, and I spend my days taking it easy, resting when my body tells me to, and being thankful for the little things that bring me pleasure.  

Wishing you and all our other lymphoma-warrior friends the best in their quest for good health.

1 Day At a Time <*** src="/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/emotions/***/smiley-embarassed****" alt="Embarassed" title="Embarassed" border="0" />

Tlj_1979
Posts: 4
Joined: Jun 2015

one day at a time,

hi there I am caring for my mom who has a similar diagnosis.. She has expression of myc and bcl 2 and bcl6 but not the translocationNs. She has a mass near her heart and bone marrow involvement. she heads into cycle 3 of r-epoch this week.  we do not know how she is responding quite yet.. Scan is after the third cycle. But symptomaticly she is hugely improved so we are hoping for the best. I too was wondering about the effectiveness of stem cell transplant following first line of treatment. Has the doctor suggested any other optins to you? my moms doctor mentioned ibutrinub as well. 

She is 69 -otherwise very healthy and active and so far has handled r-epoch very well. 

i think I have read everything there is on this particular diagnosis and your right-there just doesn't seem to be too much information. Overall I wonder when can we ever really relax? It seems that a relapse is so likely. What cycle of chemo are you on? Thank goodness you got that second opinion and switched to the better treatment.

glad you have achieved remission! And good luck!

1 day at a time
Posts: 9
Joined: Jun 2015

Wishing all the best to your mom, and you.  The way I see it, the caregiver is going through cancer too.  I go back for round 5 of 6 chemos next Tuesday.  I saw my Dr today for bloodwork, and she is very pleased with how I'm doing.  I am in the good phase of my cycle post chemo, so for almost a week I've been feeling really well, almost normal, and I go for walks daily.  I get 3 more days like this until it's back for a 96 hour infusion.  I'm not sure why they call it 96 hours, as I'm actually there 5 days, so it's really 120 hours hooked up to the IV bag. My r-EPOCH will be increasing another 20% next week, as my WBC never nadired. I told my doctor "bring it on", as I want to make sure they kill any bad actors still lurking in there.  I had a successful stem cell harvest Tuesday of this week.  They got all the cells they needed from me in one day, which was a huge relief to not have to do multiple visits.  It wasn't too bad, a little uncomfortable to sit 3 hours and not move with catheters in each arm, but the nurses treted me really well. My doctor told me that the harvest is as a contingency plan, in case of a relapse down the road.  I am not having a transplant otherwise.  I sure hope my stem cells stay in that freezer of theirs forever!

Keep me posted on how your mom does.  Glad she is tolerating the treatment well so far.

ccbbrown
Posts: 2
Joined: Oct 2014

I know this post is old, but I was actually looking for similar post.  It's been a while since I've been on.  I had the hyper cvad treatment and the repoch treatment.  After 4 hyper cvad treatment.  Actually 8, because of two cycles per treatment, first pet scan clean, then I had 4 repoch treatments, just to make sure.  I also had the spinal chemo. 1 for test and 12 for treatment.  I am having problems with my WBC returning to normal. My recent pet scan was clean, but my numbers are still low.  I got another neulasta shot and it was up for one week and down hill since.  I was wondering if anyone else has had this issue.  My DLBCL was Stage 3, Non Hodgkin

Jennifer_mommyto4
Posts: 1
Joined: Jul 2015

Hi Laurie,

I have completed 2 cycles of da-EPOCH-R. My oncologist is recommending 6 rounds. I can't wait until I can be done with this chemo. I am in a different boat than allot of other people. I was diagnosed with a medistinal mass that was supposed to be a thymoma. Only when the surgeon cracked my chest he found and removed a softball size mass. I was informed that they were able to get "clear margins" But no one utter the nasty c word. That came a week later over the phone when the nurse told me every cell they removed from my chest came back as lymphoma. I was being referred to an oncologist. 

I am sorry that I don't have much experience. I do wonder, how did you keep from going crazy in the hospital for the 6 days? I am thinking of asking for the outpatient chemo...the R-CHOP. 

I can tell you that so far the treatment in the hospital makes me incredibly fatigued and nauseated.  Then there is the nulasta shot that comes 24 hours after treatment.  I am taking the claritin, but jeez, I am down for another week with pain. I know that its building my white blood cell count, but ouch! Then I go back to being fatigued again for a few days. I have found only 2 or 3 days that I consider to be "good" days. Then its time to go back in the hospital.

I am seriously wondering, how did you get through those days in the hospital?

Any words of advice are greatly appreciated.

Jennifer

1 day at a time
Posts: 9
Joined: Jun 2015

Hi Jennifer,

 

I am sorry to hear how hard the DA-r-EPOCH has been for you so far.  I started out with r-CHOP for 2 rounds, and was then switched to DA-r-EPOCH for the last 4 rounds. Looking back, a 4-5 hour infusion given on one day for r-CHOP was a walk-in-the-park compared to the 5 days in the hospital with continuous infusion for r-EPOCH. I finished my chemo July 11, and just started feeling a bit more like myself about 5 days ago. The hospital infusions were difficult, however I just kept telling myself that the stronger chemo was my best hope to kill the cancer.  My sub-type of DLBCL is particularly aggressive (double protein expression, Activated B-cell origin), so my doctors advised me that there are better outcomes with DA-r-EPOCH.  Sign me up I said!

To get through your hospital stays, all I can suggest is arm yourself with magazines, music, books if you have enough energy to read, hopefully decent TV is available in your hospital room, and get positive people who care about you to visit when possible.  No matter how fatigued I was once I was discharged, it was always a thrill to get home and have 16 days of freedom before I had to go back to the hospital for the next round.  I was very fortunate to not have any nausea, but I knew that the nurses were so on top of any new symptoms that they'd be ready with anti-nausea meds if I had needed them.  I learned how important it is to speak up at the first hint of not feeling good, and they'd do the best to dispense whatever was needed.  I trust that your medical team would do the same.  Having cancer has totally changed my attitude towards medication.  I use to pride myself on shunning it, now I say, give me the script! 

 

These cancer diagnoses stink for all of us, but everyone here can relate and knows how hard it is. 

Hang in there, you will get through it. 

 

 

JW01
Posts: 1
Joined: Jul 2015

Hi all.

My husband is recently diagnosed with b-cell lymphoma, unclassifiable with Burkitt, stage 3. His oncologist at Sloan Kettering is telling us that outpatient is how they do EPOCH treatment there, starting from DAY 1!

Has anyone gone through EPOCH+R as 100% outpatient treatment? The daily trip to/from the infusion center sounds stressful already. Granted that the cancer center is probably #1 cancer center, and they supposedly have the best everything for cancer treatment, is outpatient really manageable for EPOCH+R? And What about CNS prophylaxis? Did anyone get it during EPOCH?

As we found out that two other hospitals in NYC (Columbia and Mount Sinai) do EPOCH as inpatient treatment. I am really concerned about unexpected problems that may happen at home (or at work since his doctor thinks he should continue working ...)

What is your opinion/experience on this? Thanks in advance!

1 day at a time
Posts: 9
Joined: Jun 2015

Hi JWO1,

 

If you read my earlier post above, you'll see that I recently completed DA-r-EPOCH as an in-patient.  I am quite amazed your husband could have it as an out-patient, but Sloan surely knows what is appropriate for each patient.  I assume he'd have a pump he'd wear to slowly deliver the chemo at home?  As hard as it was to be in the hospital for 5 day stays, I did feel reassured that the nurses/doctors were right there and attended to my needs 24 hrs a day.  I unfortunately developed blood clots (likely due to my chest port), so before my last round my chest port was removed and I had to have a PICC line installed in my arm for the chemo delivery.  That is another reason I was happy to be in the hospital, as I was a little freaked out about possible further complications.  Luckily, the PICC line seemed to go OK.

 

You are fortunate to be at Sloan.  My insurance didn't cover me there, otherwise I likely would have gone there.

 

Wishing all the best to you and your husband as you go through this unwanted journey. 

rakaia
Posts: 2
Joined: Jul 2015

Hi!

   I am just finishing up my EPOCH treatment through Mount Sinai (my last cycle starts tomorrow). They do indeed do the first round as inpatient but as I did fine with that, all of the remaining rounds have been done at home with a visiting nurse service. I was given the option to do all of my treatment as inpatient though if desired, it was left up to me.  My doctor at Mount Sinai (Dr. Joshua Brody...fantastic doctor!!) had the whole thing set  up so that all of my chemo supplies (including the drugs themselves as well as all of my supplies, my pump, etc, etc) were delivered straight to my home via courier from the infusion service (Coram Infusion Servies). His office also arranged everything with my insurance company; I didn't have to do anything. It was also nice that the in-home treatment was 100% covered by my insurance. Inpatient would not have been (well it is covered, there is just a pretty big co-pay with each hospitalization).

The way that each cycle would work was this. Day one (which for me has been a Friday) I would go to the treatment center at Mount Sinai (the Ruttenberg Treatment center on Madison Ave on the UES). I would be given my Rituxan infusion and then see Dr. Brody in the afternoon. I would then go home. The following Monday, I would be contacted by Coram, they would arrange for my supplies and drugs to be delivered to my house (with the dose that Dr. Brody wanted). Tuesday morning, my infusion nurse would show up at my house, access my port, give me IV Zofran and then start my first bag of my 96 hour chemo infusion. The pump and bag of chemo is in a little bag that I can carry around or hang off an IV pole (which Coram also supplies). Each bag lasts 24 hours. My nurse visits every morning for 4 days to give me more IV Zofran and to change my chemo bag to the next one. She does not visit on the last morning (which is Saturday), instead we go back to Mount Sinai to get the cytoxan (short hour long infusion) and to have my port heparinized and needle removed. I then go home with the only thing I need to do after that is give myself the Neulasta injection 24 hours later.

I was apprehensive about doing the treatment at home when I first started but it ended up being really easy (well, as easy as chemo can be!). I would not have been comfortable with doing the at home for the very fiirst cycle though; I'm glad that Dr. Brody wanted me inpatient for that. Once I saw that I was OK with getting the chemo...I was much more relaxed with getting it at home. My nurse has been fantastic (and she lives less than a mile away so if I every did have some sort of issue, she told me she would come by). Being at home allowed me to bring some sort of normality to all of this. I was able to sleep in my own bed, be with my husband and child, I could take short trips to the store if I wanted and I didn't have to eat nasty hospital food and be bored out of my mind! It's amazing how much better you feel when you can do a few normal things while having to go through the chemo. I also did continue to work (not the week I was hooked up to my bag though...I felt better just resting that week). Having the visiting nurse also eliminated the need for daily visits to the infusion center...the center basically came to me!

I also highly, highly recomment the Ruttenberg Treatment Center at Mount Sinai. We've had nothing but great care there (though sometimes the wait to see the doctor could get rather long :-) )

oksamit
Posts: 1
Joined: Oct 2015

I had my R EPOCH treatment in Mount Sinai inpatient 2013-2014.I was offered outpatient infusion with nirse coming to my house and setting up iv but i refused. It was correct decision. I had pleanty problems with airbubbles in iv system plus underskin leakage of medicaiton with antidote injections and iv, so i would recommend people to do inpatient if they can

NHL_122
Posts: 2
Joined: Aug 2015

I'm amazed to hear the number of people who were able to do R-EPOCH outpatient. Unfortunately, that was not even discussed as an option during my treatment. 

I finished treatment recently and trying to readjust back to everyday life. There are good days and bad days. What is interesting is that my physical and emotional states were at different places throughout the treatment and post-treatment phases. 

I'm only recently out of treatment and initialy experienced extreme fatigued, increased neuropathy and joint stiffness. Resting heart rate is high. Blood plessure occassionally elevated. 

Over the next two months, there were signs of hair growth. Fatigue is not as severe but I have great trouble sleeping throughout the night and subsequently waking up early. Neuropahty moderately improving but more troublesome on one side. Joint stiffness has not changed significantly. Constipation has been eliminately completely by diet. Noteiceable increase on the frequency of urination and slight decrease in ability to hold (no indication of kidney damage) but may be related to increase of water intake and dietary changes. Resting heart reate remains high but blood pressure stabilizes. Developed lymphedema, cause unknown. Blood counts are generally okay but WBC have not reached a normal level.

Mentally, there are good days and bad days. It's not that I'm sobbing as much as I'm overwhelmed and often sadden at how this situation impacted me at such a young age and also having to deal with this without much support. I'm still proud of myself as a whole. While I was not always consistent, I gave myself little goals to keep myself from being fully absorbed by illness / treatment. 

 

Bernie
Posts: 3
Joined: Aug 2015

Hi,

I was intrigued regarding all of your epoch-r experiences so I just joined. I am 59 and was diagnosed with mediastinal large cell lymphoma on May 1, 2015. Have had 6 5 day infusions of epoch-r (6th day neulasta shot) over what has been a tough summer for me (more medical attention than my entire previous life). I am lucky though- have done rounds 2-6 as out-patient and have managed to telework  most of the time (erratic schedule but I get my 40 in). So this is day 6 of round 6! After PET-SCAN next week I hope to find I am done with chemo and can start getting healthy again.  I can read in your messages that you have the same prolonged experiences of exhaustion, peripheral neuropathy, sleeplessness, hairlessness, chemo fog brain and I know that you could mention a lot more (I sure can!).  Not complaining mind you. My simple-minded mission in life is to enjoy myself at all times, and somehow I generally do this. All this said, I still desperately want to play basketball again and backpack in Montana (sleeping at night regularly would be a real plus too)! I am not really sure if these desires at this stage of my life are realistic, but I will find out.

I wish you all the very best. It is such a beautiful world- I just hope that I can jump back into it like I could just last year!! I hope that you can all get to where you were before.

Bernie

1 day at a time
Posts: 9
Joined: Jun 2015

Hi Bernie,

 

Welcome!  Like you, I'm 59.  It wasn't what I was expecting in my last year of my 50's!   Unlike you, my chemo was as an in-patient, and I'm on a leave from my teaching job until Sept 25.  I have also had some sleep issues.  During chemo I was taking Ativan which seemed to work beautifully.  However, I went off of it recently as my doctor warned me that it can become habit-forming and can be difficult to go off of.  I had to wean myself off the pills by cutting them in half for a while.  Fortunately I didn't have any of the issues that many people online report, but the one problem is I'm not sleeping as well now.  However, I sure don't want to add chemical dependency to my list of recent health problems!  I'm amazed at how quickly after your chemo ended you're scheduled for the scans.  I finshed chemo July 11 and only had my CT/PET scans yesterday.  I am waiting for the news, which needless to say is stressful.

 

I wish you all the best and hope that you can soon plan on getting that backpack on and hitting the Montana trails!

1 day at a time
Posts: 9
Joined: Jun 2015

Hi NHL 122,

I can certainly relate as my recovery has had a similar path.  I finished chemo July 11 and my neuropathy has gotten worse in the last few weeks.  My oncologist told me there's nothing we can do for it, but it will hopefully improve over time.  Lately it is much worse when I go to bed.  I'll wake up in the middle of the night and one big toe is throbbing and feels like its twice its actual size.  When I get up in the morning and walk around a little it is much better.  Luckily it doesn't prevent me from doing any walking.  I have been trying to walk every morning before it gets too hot, as a way to ease back into exercise.  I had bloodwork 2 weeks ago and my counts were significantly better than the prevoous appointment.  I'm still anemic, but my doctor said I can exercise more now so I'll likely feel OK about rejoining my gym.  I'd stopped during chemo due to risk of germ exposure in public places.  I had my CT/PET scan yesterday, so now I am anxiously waiting the report on that. I can't think of much else until I get that news!

 

I know what you mean about the good days/bad days mentally.  This is such a big load that's been dumped in our laps, dealing with cnacer.  It stinks, and it really can be tough mentally.  I am still trying to wrap my head around the reality of this.  I try to surround myself with positive people, and try to focus on life's little pleasures that make me happy.  Eating out in restaurants again is wonderful, and I am thrilled to feel some stubble on my head finally.  I bought a wig when all this started and haven't worn it once.  I don't like how it looks or feels, and have managed well with a variety of scarves/caps that I bought online from chemo sites.  I look forward to having enough hair that I can loose the scarves!

 

I'm glad to hear you say you are proud of yourself.  You should be, you hung in there, finished treatment, and are doing the best you can to move forward.  Great!  We will get there.

 

Cheers to you,

and I hope you continue to feel stronger every day

 

 

 

Bernie
Posts: 3
Joined: Aug 2015

Hi 1 day at a time!

Thanks for your encouragement. I can relate to all that you say. It was a tough day today (round 6 epoch-r day 10 for mediastinal large b cell lymphoma). I also see myself getting too dependent on lorazepam just to get some sleep, and will have to stop using it (will take it tonight though- will quit on day 12 or 13 when I start feeling a little better). I so hope that the chemo is over. My next pet scan is actually this Monday and I am so anxious to get my doc's assessment of what is next. I hope there is no mention of radiation or more rounds. Not sure that I would agree to radiation. Need to be done now after 4 unreal months. As 1 59 yo to the other- you hang in there and before you know it you will be on the road to recovery. Myself, I can't wait to be in my normal state of badly needing a haircut and shave!! This all said, if I have to do more chemo I will buck up and continue to enjoy my life.

Best,

Bernie

1 day at a time
Posts: 9
Joined: Jun 2015

Hi Bernie,

 

I sure hope your chemo is finished.  Nasty stuff we live through!  I had my CT/PET last Wednesday, and Saturday my Dr called me with the good news that it was a "normal" scan.  No signs of cancer, in complete remission.  Strangely, it did show a fractured rib that I didn't know about. I had a bad fall 6 weeks ago so it must have happened then.  My husband and I know that under these cir***stances, hearing the word remission was the good news we wanted.  So many people when I tell them, innocently say things like, great, now your life is back to normal. You can put this behind you, etc.  To a point I agree, however, I also know that there's a little monkey on my shoulder, who is always going to be wondering if it will recur.  I hope with each passing day it gets easier to not think about it.  I'm ecstatic that I am in remission, so I'm riding that and enjoying lots of lunches out with friends to celebrate. I had my first Rituxan maintenance infusion yesterday.  Compared to chemo it's a breeze.  It took about 5 hours in the chair, but I slept through much of it it (thanks to Benadryl), and felt no ill effects afterwards or today. That will happen every 8 weeks for the next 2 years.  If it keeps away a relapse, I'm all for it!  In my case there was never any discussion of radiation, due to the nature of my cancer, so I sympathize with you if they suggest that you need it. That would be a tough decision I'm sure. Maybe a 2nd opinion would be helpful.

Wishing you all the best!

Remember to reduce the lorazepam gradually!

Tlj_1979
Posts: 4
Joined: Jun 2015

one day at a time, 

i posted here awhile back regarding my mom.. She also has the double protein expression if bcl2 and myc that you have.. Anyways, she finished up 6 rounds of r-epoch On August 18.. She had a clean scan after round 3 and we are waiting for her next scan in about 2 weeks.  It seems in my moms case they are likely going to move on to stem cell transplant if her scan is clear. I'm wondering, did your doc present you with options at the end of treatment and rituxin maintenance  was your choice or was that the docs recommendation?  I'm just wondering what to expect as we move forward. I wonder how significant the double expression is when being treated with r-epoch. Also sonce she went into remission early on, is a stem cell even necessary.. So many uncertainties!!

my mom is doing well- tired, anemic but otherwise good. 

Wishing you all the best!

tricia

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1914
Joined: May 2012

Hi Tricia,

It is a very positive thing that your mom responded so well and so rapidly.

I am NOT very familiar with DLBCL, but I would ask her oncologist the same questions you asked us, and even ask for a referral for a second opinion regarding follow-on treatment options.  Her current doctor should take no offence at all at this request.   Depending on where she is receiving treatment, a second opinion may be easy to get, or you may have to go outside of the network she is currently in; this will cost money for the second opinion, but most likely is well worth it.  It would be preferrable to have this opinion done by the time her next scan is performed. 

Obviously, SCT may in fact be best for her, it is just wise to verify.  In a very general sense, from what I have read from several of the 'regulars' here and the International experts they have spoken to or read over the years, SCT is possibly overused in some cases, when lesser maintenance therapies might work as well, especially on older patients (I have no idea how old your mom is). 

Anemia is treatable with IV infusions in most cases, a fact I learned when given such infusions myself.

But again, this is a generality, and may not be true at all in your mom's specific cir***stances.  This all requires a little research on your part.

max

1 day at a time
Posts: 9
Joined: Jun 2015

Hi Tricia,

I'm glad to hear your mom seems to be doing really well.  I wish you all the best on her next scan.  It's very stressful waiting for the results, so hang in there.  My CT/PET scan 7 weeks after chemo ended was clear, so it is great to officially be in remission.  I can only hope it lasts.  I did have my stem cells harvested after my 3rd treatment, when I had a clean bone marrow biopsy.  My doctor said he wanted to harvest then to have a contingency plan in place, in case I relapse.  I am not having the stem cell transplant unless I relapse.  The rituxan maintenace I am having every 8 weeks supposedly lessens the chance of a relapse.  My understanding is that I would only be able to get Ibrutinib in a clinical trial if I relapse, I don't think for DLBCL it is available in first-line defense treatment.  It is hard to get a clear understanding of all these variables.  It is very complicated and each sub-type just a little bit different in terms of which treatments are best, etc.  It is exhausting and not what anyone wants to spend their time having to figure out.  Especially when the chemo knocks the wind out of your sails!  All the best to you and your mom.

 

1 Day at a Time

davidsaroff
Posts: 2
Joined: May 2003

Laurie,

 

I was in an NCI clinical trial of rEPOC for DLBCL about ten years ago. Of a test group of 74 people, 60 are still alive, that is 80% of us. The fourteen we lost died in the first year and a half after treatment. It took about a year to be back to myself, and not feeling weak.

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