RCHOP second treatment : I'm extremely... - Non Hodgkin's Lym...

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RCHOP second treatment

skinkade profile image

I'm extremely anxious as I'm due for my second R-chop treatment next week, my first (2 weeks ago) knocked me down and I'm still not feeling good. Ended up in the hospital for 3 night as my WBC went down to almost 0. The mouth sores and hemorrhoids were extremely painful. I've lost 8 lbs. because I couldn't eat. Anyone else experience this and did your doc adjust the treatment dosage or is it determined that Rchop is not the appropriate treatment? Any suggestions or questions I should be asking my doc would be much appreciated. My low grade b-cell has transformed to high grade.

Thanks

26 Replies

I had different chemo to you but experienced sickness and mouth ulcers too. Never did sort sickness out but just had to plough through it, thinking every day that passed was one less until treatment finished and I felt better. I had liver problems from the chemo but the doctors kept on top of it and sometimes lowered the dosage so possibly your doctors will modify your treatment if it’s too harsh. The only thing I found able to eat with mouth ulcers was ice cream, it has a soothing texture and contains lots of calories so may reduce your weight loss. Good luck!!

skinkade profile image
skinkade in reply to DebsW

Thanks, yes Ice Cream was the perfect food for me, just concerned about all the sugar.

I went through 6 rounds of R-Chop and I did have some mouth sores and I went to a local compounding pharmacy and they sell lollipops that you suck on for 30 -90 seconds and it numbs the mouth and takes away the pain. You can reuse over and over. Keep your mouth clean and I also used salt water rinses constantly through out the day. Eat high quality plant based meals with tons of nutrients. Soups,blender smoothies, hot cereal, frozen bananas were foods that got me through chemo with flying colors. Treat your body lovingly by not eating sugary high fat crap. Cancer is a good time to quit any bad habits. Drink filtered water. Wishing you get through this period in your life quickly.

skinkade profile image
skinkade in reply to avegan2

Yes, trying to introduce more plant based foods to my diet, I found with my mouth so sore that almost everything burned. The magic mouthwash they gave me numbed as well but the sores were still so bad I couldn't chew or eat much. That lasted for about a week. I'm going to see what I can do to avoid it getting so bad again this next round. I was rinsing with salt and baking soda for days and it just continued to get worse. I've heard that sucking on ice chips during chemo may even help?

Shar0n profile image
Shar0nVolunteer

Here's a link to a page on Health line which explains all about R - CHOP . It might be useful :

healthline.com/health/cance...

Hi, I had 6 rounds of rchop. I started taking a tea, a medicine man gave me to help with side effects. I lost my hair after the first round, and about 40-50 pounds during treatments. Metal taste during first round. I was in the hospital 11 days with respiratory code from fluid around my lungs. It had to be drained and that was over a couple months time. I could afford the weight loss. I gained 40 back once I was feeling better. Oncologist said, time to stop gaining weight. Since then I've lost about 20. My hair grew back, except on my legs. After effects, achy bones (neuropathy) and low immune. I take essiac/ezzeac for the low immune to not get sick.

Is that essiac tea? I've lost about 8lbs. but I cant really afford to lose anymore so trying to bulk up this week before my treatment next week. So your immune system never fully recovered? How long has it been?

Thanks for your feedback

It was 5 years since chemo in June. I got pneumonia last winter. The essiac tea keeps me from getting sick. I have 24 grandchildren and 7 greatgrandchildren so it's pretty common to pass colds, strep, etc. among them, so I just stay on the essiac. I was told I'm treatable, probably not curable so I'll probably just stay on it.

I had RCHOP and am now on maintenance and doing really well. The anti nausea pills really helped as did advil and I treated the affects like it was a bad flu, over the 3 months of chop the after effects were less and less. Hang in there.

It appears that your 2nd treatment response may not allow full completion. Advise you speak with your oncologist.

skinkade profile image
skinkade in reply to Howie40

Oh no I have 6 treatments total. Meeting with oncologist today. Thx

Howie40 profile image
Howie40 in reply to skinkade

The reason I suggested this is that I am in remission 2nd time. First RCHOP 9 years ago. First 2 sessions no problem, even told oncologist (same one today), concerned that if I was feeling no problems, then so were the lymphoma cells LOL. After 3rd infusion lost all my hair, yet still felt OK. After 4th infusion went to a wedding and danced the night away on a prednisone high. Couple of days later came down with strep infection that required 2 antibiotics in succession, hematocrit fell, white blood cell dropped but I recovered and was barely able to crawl up the stairs. After 5th infusion blood labs went to pieces and they did no do my 6th final infusion. Followed with intrathecal methotrexate and direct radiation. Clean PET Scan. Relapsed Oct 2015 with large bulky lymphoma on my left arm. Surgery to remove, probably would have responded to the series Bendamustine/Rituximab infusions I received, but who knows, then direct radiation. PET Scan this past July was clear. On Revlamid now to hopefully prevent another relapse. RCHOP is the recognized go to for lymphoma, however if you absolutely cannot handle the side effects, there other treatment options. Just so you know, I was 68 first time and 76 2nd time. I’m a retired pharmacist with a masters in public health so I follow this stuff in depth every day. Talk to your oncologist. Good luck!

Howard

skinkade profile image
skinkade in reply to Howie40

Thanks Howard, it's good to hear your experience. I had Gazyva in 2016 and relapsed in 2017. Been on w &w, and then discovered I transformed to high grade from low. Hoping I can tolerate the upcoming treatments so I can dance at weddings too!

I had relatively few major symptoms from RCHOP, the anti nausea infusions they gave me worked relatively well, I had mouth sensitivity but not sores. I start every day with a big fruit salad with yogurt, that may have helped. (fruit/vegtable smoothies w yogurt can also be good) for me the worst part was the constipation and emotional ups and downs from the prednisone.( (and the days coming off the pred. was always bad) I walked daily which helped also I think. it was rough, but I guess I was lucky. I wish you the best

skinkade profile image
skinkade in reply to adleman

Thank you. I immediately started taking a stool softener so that helped. Yes prednisone really throws you.

are you taking a nulasta shot the day after chemo? that helps get the WBC count back up

Yes, I had 5, then another 3 in the hospital.

Hi.

I’m just recovering from 1st round r-chop administered on Monday this week. Was not expecting the aftermath and I too sit here now dreading the thought of having to revisit this for a further 5 times. Crikey it’s a tough regime.

Any advice with respect to combating nausea would be appreciated. Switched onto cyclidine at present and it seems better than 1st sickness drug administered. It’s Taken 36hrs to feel peckish...mouth feels a little tender and feet are tingly. Time to order some quality oil moisturiser and a good mouthwash.

...I tell myself that the suffering now will all be worth it by March. I’m fighting this for a better quality of life which is all I am focusing on right now. We all just need that goal to set ourselves and take it one day at a time....

Xx

skinkade profile image
skinkade in reply to Shelley73

I know March seems so far away at this point but we gotta do it somehow. Since I had such a rough go on #1 we're going to do a mini-chop on Monday then likely go back to full on the subsequent sessions.

See if your oncologist has a nutritionist on staff to talk with. Sodium bicarbonate mouth rinse, maybe also including Benadryl syrup in the rinse may help too. You will get through this.

Howard

shelly: def tell your oncologist about the tingling, he may want to discontinue the vinchristine. smoking pot also helped me with nausea/appetite/sleep

My husband just had his second R-CHOP a week ago. He is also taking Venetoclax (he's 13q, 17p, T53 with recent Richter's transformation). The first R-CHOP round put him in the hospital with a wbc count of 0.1 and profound neutropenia. He is being given Neulasta after each round and antibiotics. He lost his hair just before the second round which has been only slightly better: 0.3 wbc count yesterday, and he has not vomited (thanks to constant nausea meds). However the mouth sores, painful hemorrhoids, loss of appetite (food tastes terrible), and overwhelming weakness and fatigue have been rough, not to mention Prednisone sleeplessness and jittery feeling. Bicarb rinses and magic mouthwash has helped a little. We're just hoping and praying that he will be able to tolerate the next 4 and that all these side effects will be worth it.

Shelley73 profile image
Shelley73 in reply to thomelk

Thanks for all the support guys, got my fingers crossed for you all ❤️😘xx

skinkade profile image
skinkade in reply to thomelk

My situation was almost identical after my first round, the hemorrhoid pain and mouth pain were the worst of it. Lost almost 10 lbs. In 2 weeks. Going for my second treatment on Monday but they've decided to give me the mini-chop this time. I'm also having the lumbar punch on the round too, which terrifies me...yes, somehow we're all going to get through this with hopefully long remissions!

Hi I felt dreadful about three days after each treatment - mouth ulcers, constipation etc etc. RCHOP is very strong but does the job - hang in there - it will be worth it in the end ❤️

skinkade profile image
skinkade in reply to Grandma34

Thank you, needing all the words of encouragement I can get. I ft horrible for 2 full weeks after, but the 3rd week felt I've again!

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