Hi, I'm new to the boards and am wondering if anyone else is or has been on R-EPOCH. I have primary mediastinal b-call lymphoma, and have had one round of chemo so far. I'm wondering what other people's experiences have been and any suggestions you may have. I am 39 years old with two kids (7 and 8). I think I am still absorbing the shock but also want to move forward and stay positive. I tolerated the first round ok with common side effects like nausea and mouth soreness. I have also been having some back aches. Thanks in advance for any feedback. Sarah


  • jimwins
    jimwins Member Posts: 2,107
    Welcome Sarah
    Hi Sara,

    Sorry you have to be here but welcome. You'll find lots of caring
    and supportive people here. On Oct. 10, I finished R-EPOCH with six
    rounds for diffuse large B cell lymphoma - primary in the small intestine and
    messentery, stage 2.

    For my treatments I was hospitalized for 4 nights, 5 days. By round 3,
    it gets to be less scary as it becomes more routine. I was very fortunate
    with side effects - they were minimal. The following is what I experienced
    but keep in mind individuals have different experiences.

    CHEMO: Constipation (treatable with senekot and stool softeners), fatigue that
    gets progresively worse toward the end, a little mouth irritation, nausea once
    that I think was more a product of constipation and anxiety in cycle 1, hair loss
    started after cycle 2 - I pretty much shaved my head by cycle 3 I think (you lose
    hair in other places as well).

    PREDNISONE: This was perhaps the worst - couldn't sleep much for days,
    irritability, mood swings, ate like a horse, then kind of "crashed" when that
    wore off.

    NEUTROPENIA: My blood counts usually dropped about 2-3 days after treatment and
    I had to follow precautions until the neulasta brought up the counts. Twice
    after treatment I was hospitalized due to fever above 101.4 degrees but they found
    no major infections (thank goodness). My blood counts usually rose within 5-10 days
    of the neulasta shots.

    NEULASTA: Got the "achey bones" mostly by back and sternum but occasionally
    in my joints - lasted about 3 days. Over the counter pain meds helped with that.

    If you are not on something for anxiety, you might discuss with your doctor.
    I can say the ativan helped and is helping me a great deal. It takes the edge
    off the "worrying".

    It was no picnic (I don't like being confined) but it was definitely doable.

    Feel free to come here and rant, rave, cry, and laugh (we do laugh on occasion).
    Attitude and humor are free weapons in this battle. As many here say, just take
    things one day at a time. PMBCL is a subset of DLBL so should be very treatable.
    You will see that HOPE lives here on this site :).

    Lots of folks will chime in soon to cheer you on.

    If I can answer any more questions since I was on the same regimen,
    please don't hesitate to message me.

    Hugs and positive thoughts,

    DX: DLBL 4/2011
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  • allmost60
    allmost60 Member Posts: 3,178
    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)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Welcome to the board. Nobody really wants to be here,but you will find a lot of caring and concerned people here. I was diagnosed over a year ago with follicular lymphoma stage 4. I went thru 6 treatments of R-CVP. Now on Rituxan maint. for 2 years. The treatments will make you feel weaker as they progress,but you will be OK. Keep us updated and someone will always be here to respond to you. John
  • anliperez915
    anliperez915 Member Posts: 770
    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.

  • forme
    forme Member Posts: 1,161 Member
    Hi Sarah

    I just wanted to say welcome to a wonderful and supportive group of friends. All types of questions are welcomed.

    Keep in touch, there is always someone available shortly to help out.

  • msbrook2
    msbrook2 Member Posts: 28
    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
  • truckingalong
    truckingalong Member Posts: 445 Member
    Positive experiences during Treatment
    Welcome aboard, Sarah!

    I had Hodgkins lymphoma, B-cell, stage 4 and had ABVD chemo from 8/2010 to 2/2010. Initially, it was very scary and shocking... I find that using positive thinking really helps me to get through treatments. While others give you lots of good advice, I think of some of the experiences that are positive while being on treatment:

    - I felt better after about the 2nd month of chemo because a lot of cancer cells get killed - new kind of energy.

    - The food tastes much better - everything tastes yummy (except the spicy kind of foods that can affect sensitive stomachs).

    - Anti-nausea medicines takes away the nausea which is a godsend.

    - My perspective on Life becomes more precious, therefore, more appreciative, even though, we go through rough times during treatment.

    -Family and friends come out to reach to us. Also, new friendships emerge like here at CSN!