R-CHOP Pending

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

 

«13

Comments

  • PBL
    PBL Member Posts: 336 Member
    Welcome back, then!

    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

     

  • Evarista
    Evarista Member Posts: 332 Member
    Some questions I would ask

    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.

  • illead
    illead Member Posts: 880 Member
    edited March 2018 #4
    Rituxan

    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

     

  • Evarista
    Evarista Member Posts: 332 Member
    Things to fend off boredom

    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.

  • lindary
    lindary Member Posts: 711 Member
    PBL said:

    Welcome back, then!

    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

     

    Constipation

    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. 

     

  • ShadyGuy
    ShadyGuy Member Posts: 783 Member
    Similar to my case

    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
    AaronW Member Posts: 45
    Evarista said:

    Things to fend off boredom

    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.

    Thank you for the advice.

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

  • AaronW
    AaronW Member Posts: 45
    edited March 2018 #9
    R-CHOP

    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.

  • AaronW
    AaronW Member Posts: 45
    illead said:

    Rituxan

    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

     

    Rituxan

    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.

  • AaronW
    AaronW Member Posts: 45
    Evarista said:

    Some questions I would ask

    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.

    Traveling

    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

  • AaronW
    AaronW Member Posts: 45
    edited March 2018 #12
    lindary said:

    Constipation

    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. 

     

    Good to know...

    Thank you for the tips! God bless.

  • AaronW
    AaronW Member Posts: 45
    PBL said:

    Welcome back, then!

    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

     

    Thank you!

    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

  • illead
    illead Member Posts: 880 Member
    Stanford

    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

  • ShadyGuy
    ShadyGuy Member Posts: 783 Member
    Every case is differen!

    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.

  • PBL
    PBL Member Posts: 336 Member
    R-CHOP

    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
    AaronW Member Posts: 45
    illead said:

    Stanford

    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

    Advani

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

  • AaronW
    AaronW Member Posts: 45
    ShadyGuy said:

    Every case is differen!

    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.

    Funny

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

  • AaronW
    AaronW Member Posts: 45
    edited March 2018 #19
    R-CHOP

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

  • yesyes2
    yesyes2 Member Posts: 591
    edited March 2018 #20
    RCHOP

    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

     

  • Evarista
    Evarista Member Posts: 332 Member
    edited March 2018 #21
    R-CHOP regimen question

    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!