R-EPOCH

Welcome
Hi Sarah,
My diagnosis is the same as Johns except I'm stage 3 with no bone involvement.Follicular NHL-grade2-stage3-typeA. The CVP-R treatment we had is much milder than yours but we still experience many of the same issues that come with all chemo protocols. You will do better mentally as each treatment is done, because fear of the un-known will start to ease up. With that being said, you will still be tired and not feeling like your old self. My best advice is to try and stay as peceful as possible, keeping stress at a minimum.(MUCH EASIER SAID THAN DONE)I know, but stress is so hard on our immune system and makes it work twice as hard. Please come back and let us help you through your cancer journey. Someone is always here to listen. Best wishes...Sue (age 61)

Hi Sarah
Hi Sarah,
Sorry you have to be here but welcome...
I'm 35, mother of three and a wife, recently diagnosed with Follicular NHL stage 4 in my spleen including other health issues. I'm on the watch and wait so I can't really help with the chemo questions. Please stay strong for your kids and I will be praying for your health. If you ever want to chat feel free to send me a private message.

Sincerely,
Liz

Hi Sarah,
I'm sorry to hear
Hi Sarah,

I'm sorry to hear about your diagnosis. It sounds almost identical to what I went through earlier this year and I am about your age. I had a 10 X 5 mediastinal mass which was also diagnosed as large B cell. I stated the R-EPOCH treatment on Jan 24 and had 6 rounds total followed by 20 rounds of radiation. I completed treatment August 11 and so far I seem to be doing well. I'll have another PET scan in January to see where things stand.

Are you taking your treatments in the hospital or are you able to do them as an outpatient?

My experience was very similar to what Jim described. Here are a couple of things I learned along the way that really helped:

STOMACH CRAMPS: The worst side effect I had was stomach cramps during round 1 & 2. They started the Tuesday after treatment ended the previous week and lasted 3-5 days, with days 2-4 being the worst - almost unbearable. I think we ultimately decided it was due to constipation. The problem is, once they start you have to deal with them for at least 3-5 days until you get regular again - and it is constant pain. So I definitely recommend pre-treating for constipation. Once I did that, I was fine for rounds 3-6. I started taking a combination of medicine the day my Chemo started and continued it for 2 weeks. Then stopped for week 3. What worked for me: in the am: 1 Colace tablet, 1 Amitizia 8 mg, 1 probiotic capsule; in the pm: 1 pkt Miralax 17mg, 1 Amitizia 8 mg.

ACID REFLUX: I also had some problems with what I called "toxic burps" which is probably acid reflux...I took a Prilosec every night to help manage that.

MOUTH SORES: I didn't have problems with mouth sores until rounds 5 and 6...but when they came they weren't fun. I was told to chew ice chips during my treatment to help with this. That is kind of hard when you are getting a 96 hour drip, but I tried to chew them as much as I could stand during the week and constantly during the last drip (cyclophosamide?) at the end of the cycle. I also tried to keep my mouth clean with a soda/salt wash. The recipe is: 1 qt water, 3/4 t. salt and 1 t. baking soda. I also didn't drink anything hot during my Chemo. Finally, if you do get bad sores there is something called "magic mouthwash" that your doctor can prescribe - it will help numb your mouth while you try to eat.

TASTE CHANGES: This became an issue later in the treatment cycle, but some foods really started to taste funny - eggs, some meats, fried stuff, and popcorn (my favorite!) all tasted a little sour to me. Salads and vegetables tasted most normal and palatable. My doctor's nutritionist put me on the "eat anything you want diet" as some cancer patients have trouble eating and lose weight. I unfortunately gained 15 pounds on that diet...and had to curtail it about half way through!

EXERCISE: Try to keep some form of exercise going. As your red blood count starts to go down, you will feel more and more fatigue. Even a walk around the neighborhood will help you keep your muscles in shape. You will get very weak as the treatments progress. The good news is after the treatments end you'll likely begin regaining your strength pretty quickly.

HAIR LOSS: My hair fell out the week after round 2. Couple of recommendations here: If you haven't already done so, you might want to cut your hair short now; when mine started to fall out, it was a mess. If I had a do-over, I would have had my hairdresser give me an extremely short pixie. Since I didn't cut my hair short, I had my hairdresser shave my head; I thought this was the best option at the time. Emotionally - I think it was a good option...you get it all over with quickly and get on with things. However, for the first 4-6 weeks I had a little stubble because we cut it with a shaver not a razor. I was afraid to use a razor for fear I'd cut myself and start another issue with bleeding. So the stubble was quite uncomfortable for some time until it fell out. If I had a do-over I think I would have gone with the pixie cut and let it fall out on its own. Wigs...it was recommended that I buy a wig before I started treatment so I could find something that looked natural...I thought this was a good recommendation. I didn't wear my wig a whole, whole, lot during treatment, but it was nice to be able to go out in public sometimes and just blend in. Scarves were more comfortable...but finding large square ones can be a bit difficult. Cotton scarves work best.

NAUSEA: I responded really well to the pre-meds they gave me for nausea. I really didn't have to take additional drugs for that very much. But you should have some on hand just in case. Zofran is the best - but most expensive, even the generic. The best thing about it is it doesn't make you sleepy. Compazine also worked well for me...if I needed something at night I took it as it can make you a little sleepy. Most importantly - stay ahead of the nausea...if you feel the slightest bit sick, take some medicine and you should be fine.

CARING BRIDGE: If you are not familiar with this site, you should check it out. It is basically a blog site for cancer patients. It was a good way to keep everyone informed of what was going on with me and a great source of encouragement to me when people sent notes, words of encouragement etc. My site is caringbridge.org/visit/susanforsythbrookshire; if you want to read some of my journals they might give you a sense for what the journey was like for me.

I am going to post another entry on this discussion board in a bit about my experience post-chemo...just a lot of little things that others might be curious about as they get close to the end of their treatment. But for now, that is probably the best information I can share with you. Hopefully, I haven't overwhelmed you...these are just all the things I would have liked to have known as I started treatment.

You are right to stay positive. I was told that if you are going to get cancer - this is one of the best type to get...it is treatable, even curable! That news alone gave me the hope I needed to stay positive during the fight. You will make it through this treatment and when you feel absolutely weak at the end, know you will get strong again. As my doctor said to me - "keep your eye on the prize." Please feel free to reach out to me if you have any specific questions!

- Susan