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Follicular Lymphoma/R-CVP Experience

Lilikoi's picture
Lilikoi
Posts: 4
Joined: Jul 2011

Hello, I am 39 years old and I was diagnosed with non-hodgkins follicular lymphoma, stage IV. I am going to star my treatment (R-CVP) soon and I would like to hear some of your experience with this type of chemo.Any advice and comment will be greatly appreciate it. Thanks!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I too have went thru r-cvp. I am having a little trouble with my computer and do not not want to type a long letter and it not come thru. I will get back to you after all is straightened out. John

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

lilikoi,
I was supposed to have the R-CHOP,but it was changed to the R-CVP. It was not to bad at first but after the 4th treatment I began to feel really tired and had no strenght at all. The preds kept me up all night during the 5 days.I started to notice the chemo brain pretty early. Still have signs of it. I have to go back every 6 months for a scan and my Rituxan maintenance. I really believe the Rituxan has something to do with the not feeling 100%. Even though it is not Chemo it still keeps me me down for a couple of weeks after. Thats my opinion anyway. My hair really thinned starting after the 3 Chemo session. Its back now.After my final Chemo I had a scan and it said remission. John (FNHL-1-4A-5/10)

Lilikoi's picture
Lilikoi
Posts: 4
Joined: Jul 2011

Hello John, I am glad to know there is hope. After I had my Pet scan last week the Dr. changed my treatment to R-CVP, based on the results. If everything goes ok, We had set the beginning day as August 08.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lilikoi,
I finished 6 rounds of CVP-R on Dec 14th, 2011. The hardest part for me was taking the prednisone for the 5 days after treatment. Kept me awake, hyper, and very aggitated. Had slight tingling and numbness in my feet and hands, but it went away once my 6 rounds of chemo was finished. My hair thinned, but I didn't lose it completely, and it's now growing back nice and full. Everyone re-acts differently, so you may have different problems, to ask us about. Fatigue seems to be the norm for all of us on this protocol, so listen to your body and rest when you can. CVP-R is one of the less harsh protocols to have to take, but it does have a few challenges we have to deal with. Keep coming back, and please let us know how your first round goes for you. I was so scared right before my first round, and this wonderful group got me through from beginning to end. Take care and remember someone is always here for you. Best wishes...Sue
-age 60-FNHL-grade2-stage3-typeA-diagnosed June 2010.

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hello - I'm a 68 year old with FNHL, Indolent, Stage 4. My first chemo last June after 9 months of watch and wait was what you'll be doing - CVP-R. It was so much easier than I expected - seems to be far easier to tolerate with about the same results for remission as CHOP. AND you don't lose your hair! Mine thinned as Sue said and I did wear scarves and wigs, but you will never be completely without hair. Have a local friend who used that one and her hair didn't even thin, so hope you'll be that lucky! the hair you see on my picure is now my own and it's getting thicker each day.

Where is your cancer? Mine is a large tumor in my abdomen at the head of the pancreas, but luckily not on the pancreas. 6 months of CVP-R brought some shrinkage, but not enough so I started a newer but much harder to tolerate chemo right away called Treanda. It was harsh and a year later, still have a tumor but it's smaller. Started Rituxan two days ago which will be given every two months for 2 years as a maintenance therapy - hope it works!
If you have an oncologist you have complete confidence in , a positive attitude and hopefully a strong faith (that will grow even stronger as you go through this), you will breeze through just fine! Keep in touch - Fran

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Fran,
How are you feeling after your first R infusion? My energy level sure isn't getting back to where I'd like it to be. It's better since finishing the CVP-R, but still no where near 100%. I've had 3 rounds of Rituxan no...Feb,April,and June. Next one is Aug 22nd. I Keep waiting for a second wind or a little more zip, but it's not happening. Hope you do well with yours. Keep us posted...Love...Sue
(FNHL-2-3A-6/10)

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Are you still on vacation? Your cabin description sounded so lovely want to sit on that porch with you!

After coming home Wed. from first Rituxan, I slept another 5 hours (I never nap in the day so that's very unusual for me). Woke up the next morning feeling like I'd been run over by a tractor trailor! All my bones and muscles ached. Took Tylenol for two days and then I was fine. It's funny my energy has returned 3 months after last Trenda chemo ended and I feel like the energizer bunny I was two years ago - very blessed that happened. Hoping R doesn't change that. I'm to have it every 2 months for 2 years - is that how long yours is to be? Love, Fran

miss maggie
Posts: 929
Joined: Mar 2010

Dear Fran,

I wouldn't think the Rituxan treatment would change your energy level. Perhaps
the Prednisone given before treatment is making you tired????

I have been so tired lately. Too much running around, and so much activity.
Today I will rest. Nothinng to do with my NHL, thank God.

Yes, you are blessed to have such a great energy level. Every bit of energy we
have, at least it is so appreicated by you.

Blessings and continued energy, all my love. Maggie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Fran,
Yes..we are still on vacation and the weather has been absolutely delightful. Up here on the mountain the air is cooler with a constant breeze. Steve caught fish today, so it looks like the fish are finally turning on. We have friends staying with us from Texas this week, so I won't be fishing much. We go home on Saturday the 6th.
My plan for the Rituxan is the same as yours...every other month for the next 2 years. So far I've had 3 infusions, the next one will be on Aug 22. My energy level is do-able, but I would like to see it get better. The month of August I'll probably gain more energy, but after the 22nd it will drop again for the first month after the infusion. Everyone re-acts differently, so I just take it one day at a time. I'm so pleased you are feeling good and have plenty of energy. I hope for you the Rituxan will not interfere with that...time will tell. Take care and enjoy the rest of your summer...it's going to be over before we know it. Love you...Sue (FNHL-2-3A-6/10)

Lilikoi's picture
Lilikoi
Posts: 4
Joined: Jul 2011

Thank you for your support. I guess is getting real for me. I was dx last June with a follicular NHL grade 1 stage IV (bone marrow 10%). I have an inflammation of a lymph node in the middle of my chest (that something can give a little be of discomfort), groin area, and duodenum( this last one showed on CT but not on PET scan but I know is there).
I don’t know what’s the hardest thing? Having this disease or telling to my family and friend about it. Is like I feel guilty for having something that I don’t know how I developed in my body and, that just going to bring them worries. Again thank you and I will keep you post it.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I had RCVP back in 2006. I agree with everyone else, it's doable although not fun. I gained 30 pounds from the prednisone. I know I didn't sleep well at all and mainly watched movies all night long and found out that I can eat at 3 am with no problems.

I did not have any type of nausea, zofran worked wonderfully for me. I do think that vincristine is one NASTY drug. I had neuropathy and leg cramps especially toward the later treatments. It did go away a couple of months after treatment stopped which was very welcome. I had major constipation issues and found that acupuncture took care of everything without drugs, since the normal meds did nothing for me. I highly recommend it! I also had jaw pain from the vincristine for the first few days. I did not have any side effects start until about 4 days after chemo.

I did lose my hair, but that is such a minor thing after the shock wore off. I found that I really like being bald.

I have had multiple relapses and am currently recovering from a stem cell transplant, so of course I am bald again (since April) and it's just now starting to come back. BUT, it's 103 actual temperature today and it's great not having the extra heat on me. I found out last time that it just doesn't matter about being bald and I can honestly say that I forget all the time to put on a hat when I go out and sometimes watching other peoples expressions about me being bald are pretty funny. This time around with the high dose chemo I did lose my eyelashes and most of my eyebrows, my advise is be very careful scrubbing your eyebrows when you wash your face.

You'll do fine. Like I said it's very doable and take lots of naps!

Take Care,
Beth

Davis285's picture
Davis285
Posts: 15
Joined: Jul 2011

Beth, You are a great inspiration for all of us! I am bald as well and sometimes I forget to wear my hat lol! I hope you are recovering very well from your surgery. You are in my thoughts :) -Monica fNHL stage IV-

Bee Strong
Posts: 5
Joined: Aug 2011

Hey lilikoi,

I have non-hodgkins follicular Lymphoma stage 4. It was found on my back, a vertebra in my spine, my lung, and my arm. It's strange b/c none were in my limphnodes. At first, the doctor was pretty sure it was lung cancer, but thank God it's not. I am 40 with two young kids (4 1/2yr & 1 1/2yr) so it was a pretty big shock to me. I'm right in the middle of going through r-cvp. I've got to do 6 rounds and tuesday will be my 4th. As far as how I'm doing so far... It depends on the time of month/day. The first few days I have a pretty big headache and am really tired. After a week or so, I have a constant crick in my neck and pretty severe back pain. My oncologist said it's from my white blood cells coming back and that it's prevalent in younger people (can't pick up my son ;-( ) As far as the the prendezone, it doesn't seem like it has really affected me. I don't get more hungry and it doesn't seem to keep me up. What did affect me is the Decadron which is also a steriod which is a good bit stronger than Preddezone. It gave me the jitters, kept me up all night, and put me in a pretty angry mood. I had to take when doing radiation to my vertebra. My nose sometimes bleeds when I blow it. I've noticed in the past few days that my hair is shedding a little more, but not too bad. Have you started yours yet? It's not too bad. They told me I'd be there for 8hrs the first time, but I was only there 6 1/2 hrs. Good luck. let us know how it goes. Kim

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