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R-CHOP

Don2088
Posts: 16
Joined: Aug 2015

I start my R-CHOP treatment for NHLPL tomorrow. My anxiety is through the roof. Can anyone relate from their experiences how R-CHOP affects you during and immediately after the first treatment? My doctor told me what to expect, but I would find information from people that have actually endured it more helpful.

Don2088
Posts: 16
Joined: Aug 2015

I have Nodular Lymphocite Predominant Hodgkins Lymphoma (NLPHL) not NHLPL. I can't keep all the acronyms straight.

Max Former Hodg...
Posts: 3699
Joined: May 2012

Don,

Your anxiety is very understandable.

While I did six months of R-ABVD, several of the drugs are identical (Rituxan and Adriamycin are in both, while Vincristine [CHOP] is nigh-dentical to Vinblastine [ABVD] ).

Your first infuson will be a time for testing: testing for allergic reactions, etc.  It will go more slowly than subsequent infusions. Most people receive IV Benadryl to reduce or prevent allergic reactions; Benadryl will probably make you sleepy, at least for an hour or thereabout.  The Rituxan is usualy given first, and very slowly, for the afroementioned possible (but rare) allergic reaction to be tested for.  Rituxan commonly causes chills during infusion, but this ends when the drip ends. The bag, depending on dose can take over an hour to administer.  Your infusion center will have blankets available, if you even need them.

The Adriamycin and Vincristine both should be given with a push-pull cylinder (not as a bag drip), because they are vesicants, or blister agents, and require that the tech stay immediately with the patient during application.  Infusion is virtually always administered by a specially trained oncology RN; your doctor will not normally be around.  All five of my drugs were IVs (no pills), and my infusion day took eight hours. But Prednisone is a pill, so you should have less time at the clinic. DOSE also varies from individual to individual. Our infusion center had about 40 stations, and I never saw anyone in six months have as long a day as I did; I got there before any other patient or even the nurses, and left near last. Your day, I suspect, will be a lot shorter.

Patients' reactions to the first infusion, or even series of infusions, varies dramaticallySome people have virtually no reaction, but nearly everyone will feel very weak and tired, at least for the first day or two thereafter.  The more classic reactions, like hair loss, possible mouth sores, etc, almost NEVER occur after only one infusion; hair loss for nearly everyone requires two or more applications to happen.  The other effects either happen or do not happen later on, whenever they happen. There is not much in the way of predicting who will get, say, neuropathy, verses not getting it, and so forth. Some people's nails turn black and get brittle, some people's nails never do.  It is the luck of the draw in all of this stuff.

Prednisone, a steroid, is taken separately in pill form.  ABVD does not have Prednisone (or any other steroid), so I am unfamiliar with that lovely.  I have read that it frequently causes hyperactivity, insomnia, and even overeating.  Several CHOP patients here have reported net weight GAIN on chemo, which does not happen with ABVD (I used to jokingly tell people I had been away on a $400,000 diet).  But Prednisone does allow retention of energy and the ability to do a daily routine, which is sometimes lost in the extreme fatigue of ABVD, later on in treatment.

Most people's first day goes OK. You'r first should also.  We are pulling for you guy,

max

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Don, best wishes for your first treatment of R-CHOP tomorrow. Although I was diagnosed with a different type of lymphoma than yours, I did have 8 treatments of R-CHOP. 

I had many of the side-effects your doctor has already discussed with you. However, after the first two treatments, we had figured out what worked best for me and you and your medical team will do the same. 

As treatments moved forward, I had learned how to prevent and treat any constipation. Also, because I had a lot of trouble with infections, I had to take many antibiotics, which often lead to diarrhea. So. . .I learned which days I needed which medicine for "down there". I took advantage of the days I was on "performance enhancing drugs" (prednisone) and planned to take it easy on the days I knew I would crash. 

I also had trouble with blood counts and had many blood transfusions. I came to take them in stride and drove myself to the clinic. Afterwards, I would feel SO much better. 

This is only my experience. We have many members who sailed through R-CHOP with no difficulties at all and even continued working.

Even though my treatments were rough, I have been in remission for about 2 1/2 years. It was all worth it and I would do it again in a heartbeat. 

You will be so well taken care of tomorrow and my prayers will be with you.

 

Hugs and blessings,

Rocquie

 

 

 

Don2088
Posts: 16
Joined: Aug 2015

Today went off without a hitch. I got a Benydryl induced nap and had zero reactions. No chills, heat flashes, headaches, nausea, NOTHING. I was so glad. I came home and walked my dog with my 11-year old son and we are going out for dinner. It was a good day all things considered, but I am not naive. Everyone at the cancer center is telling me it starts going downhill within the first 3 days and days 5-10 are the roughest. I am ready, meds in hand. I would like to thank everyone that posted and helped me over the last couple weeks. Bless you all! I will give you an update after day ten. Thanks again.

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lindary
Posts: 711
Joined: Mar 2015

About 24 hours after you stop the Prednisone the crash hits. Feeling tired is putting it mildly. You'll feel like someone pulled the rug out from under you and you found out there was a hole under it. For me it lasted about 2 days. Someetimes I was able to head it off a little by taking a nap the last day taking it and the first day of not taking it. By the time I was in the 4th cycle the feeling of being tired was lasting longer. Best advice I ever got was from a cancer survivor at work. She told me to take a nap whenever I felt tired. I little tricky at work but sitting in the bathroom for 10 - 15 mons helped. Good Luck and I hope your treatmetnts are successful.

 

Linda

Don2088
Posts: 16
Joined: Aug 2015

Made it through day 5. I am off the Prednisone and actually feeling ok. The only thing I notice is feeling sort of blah from all the medication. I think the blah is also aided by a slight feeling of depression. Physically though, knock on wood, I am not noticing much. I feel a little tired. Again that could be meds and anxiety/depression. I eat every time my stomach twinges, because I am paranoid about the nausea. I have yet to really feel sick in my stomach though. I had a couple hours of hip pain from the Nuelasta that went away with a low dose of oxycodone. I am sitting here waiting to turn into this pile of side effects and discomfort. I keep bowing out of family activities because I don't want to be sick and tired and bring things down. Am I paranoid, is the worst just around the corner, am I just one of those people that are going to tolerate it well....is the chemo even working?

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Don, I remember the feeling well. . .like waiting for the other shoe to drop. I'm glad that things are going well and yes, you may be one of the people who tolerate the R-CHOP well.

Your feelings of tiredness, depression/anxiety, as well as the paranoia are understandable. 

Many of the members here, myself included, have benefitted from the medication, Ativan. It helps with the agitation and worry and is surprisingly effective for nausea. It also helps with sleep.

Another strategy is humor. Watching comedies and comedians, or reading funny books, is very helpful and passes time worry-free. Also trying to find humor in the day to day is helpful and helps keep us positive. 

I believe in the power of prayer and find much comfort there.

Keep up the good work!

Cheers,

Rocquie

 

 

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

Don, Sounds like you are handling the R-Chop very well, like I did. Are you being paranoid? Probably. I was that way for my first chemo. I was so afraid that I would get around someone who was sick or do something "wrong" and the chemo wouldn't work. Then a few days before the second treatment I ended up in the ER with a perforated bowel. The tumor shrunk. It had an adhension to the bowel so when it shrunk it tore a hole in the bowel. After recoverying from that my sense or paranoia kind of went away. I'm sure as you go through the treatments and it becomes routine you will feel more comfortable too. My treatments were on a Tuesday so the weekend before the next treatment was when my kids could viist (if they were feeling sick) and I would actually go grocery shopping for things I wanted. (My husband just could not get some things right.) My oncology nurse told me that my blood counts would be highest just before the next treatment which is why we did this. 

Now I am looking a second round, this time doing RICE but I do not feel as well prepared for it. No feelings of parnoia this time, just frsutrated with the lack of a real plan being in place. 

You will find your own comfort level for visiting people and going out. Some things to remember is laugh often and plan for the days when chemo is done. 

 

Mishabera
Posts: 3
Joined: Feb 2012

I did six rounds of Rchop and it put me in complete remission. It wasn't nearly as bad as I anticipated. I only got sick once in four months. I did lose my hair- but I liked not having to deal with hair. The fear was way worse than the medicine. Be encouraged from someone who did it.

Don2088
Posts: 16
Joined: Aug 2015

Thanks for sharing your experience. I lost my hair right before treatment 2. That was a startling day for me. The second treatment went much bettter. While I spent the majority of my time in bed days 3-5 after the first time through, this time I got my naps in when needed and was pretty active. I did much better with hydration and that seemed to make the biggest difference. Knowing the side effects of the Neulasta and getting in front of those early helped too. I had treatment Monday, worked 13 hours on Tuesday, pitched 4 rounds of batting practice to my son on Wednesday, took (5) 11-yr olds to the HS Football game on Friday, and helped with drills at my son's baseball practice yesterday. I was even able to run and catch fly balls in the outfield. I am looking forward to 2 good weeks before they hit me again on 9/21. That one will be 3 of 6. HALF WAY!

Feathers21
Posts: 1
Joined: Sep 2015

I just finished my 6th and hopefully final round of RCHOP on 8/5 for primary lymphoma of the bone (NHL). I have a PET scan scheduled at the end of the month to see if I need any follow up radiation, but I'm hoping I'm done with treatments. 

I'm 31 and tolerated all treatments pretty well. My hair started falling out a couple of days before the 2nd treatment. I rarely used the anti-nausea meds and never threw up. There were times that I would feel nauseous, but nothing like I was expecting. I had treatments every 3rd Wednesday and would stay out of work the rest of the week. I had no issues with returning to work on Monday. It typically took about 5-7 days before I felt normal again. Just sleep when you feel tired and try to stay active, like it seems you have been doing. I believe working out helped me through the treatments. 

The only issue I had throughout treatment was low white blood cells counts. My white blood cells got really low after the 3rd treatment and that delayed my 4th treatment by a week. The doctors prescribed the on body Neulasta shot for every follow up treatment. The oncology nurse would place the on body injector after treatment and approximately 26 hours later it would administer the shot. The first Neulasta shot was a litte rough. I had a lot of bone pain in my hips, which is to be expected because your body is reproducing a lot of white blood cells. I had no issues with the subsequent shots.

The most important thing for me to get through treatment was to stick to a schedule that works for you (both work and staying active) and the time will pass by quickly. Good luck with the next treatment and getting through this experience.   

 

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

My eaxperience was much like Feathers21. My only problem was the 100 mg of Prednisone taken for 5 days, starting on the day of chemo. Sometime it left me supercharged and other times super tired. Then about 48 hours after I stopped, CRASH!. I foudn if I got some naps in the day after I stopped the crash wasn't so bad. I too worked through most of the cycles. Glad to hear others experience was similar to mine. I was beginning to think mine was unusual. 

Don2088
Posts: 16
Joined: Aug 2015

I only get 20 mg of the Prednisone. My fall off isn't noticable. It does make me eat like I'm starving all the time.

Don2088
Posts: 16
Joined: Aug 2015

They put me on the Neulasta out of the gate. My white cells are up at pre-treatment levels. Other items like hemoglobin were higher than pre-treatment. The bone pain was terrible on the first shot. I have been controlling in fairly well with 5mg of oxycodone.

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

Just goes to show that not all R-CHOP treatments are the same. I had 200 mg of Prednisone and didn't get the Neulast until 1 week after the R-CHOP. I really didn't have any bone pain. Since you are experiencing bone pain I am glad they are giving you something for it.  Good luck.

Scharfschutze15
Posts: 12
Joined: Sep 2015

Hi Don,

hope you're still getting by. The Neulasta can be given anywhere between 24 hrs and 1 week after the chemo session so that's not a problem. I've read some accounts that people who have it 1 week later instead of the next day have less problems with it. My wife had it six times over 18 weeks, roughly, and had and continues to have huge bone/joint pain. Nothing really controls it. The R-CHOP does a lot of damage to nerves and muscles and it's going to take a lot of time to build back up afterward. She's 13 months past her last chemo session and her immunologist advises 2 years before you start to feel like you're really recovering and a while longer to get back where you were before chemo, however, he said 99% of his patients do lose the bone pain issues over time.

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