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NHL - Follicular Lymphoma - R-CVP

ingi1965
Posts: 14
Joined: Aug 2013

Hello,

I am starting R-CVP on 9-4-2013.

Has anyone gone through this?

Any feedback?

Thanks

jimwins's picture
jimwins
Posts: 2004
Joined: Aug 2011

Hi ingi1965.  I don't have answers for you regarding this protocol as it was different from mine but I know there are folks on here who have been through this and hopefully will respond soon.  Please know lymphoma is very treatable.

Good luck on your treatements and know you are not alone here.

Hugs - Jim

ingi1965
Posts: 14
Joined: Aug 2013

Thank you Jim.

God has already healed me, I am just going through the motion.

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Ingi and welcome to the group...

  My first line chemo was CVP-R. I did a total of 6 rounds, each round every 21 days. This cocktail is one of the milder chemo's. I did not lose all of my hair, but it thinned quite a bit making it a challenge for my hair dresser to style. The Vincristine caused some mild neuropathy in my fingers and toes, but within 6 months of finishing it went away. Vincristine also causes constipation so I took 2 Senekot tabs a day throughout all 6 rounds. Everybody reacts differently, so what I experienced may not happen for you. The hardest part for me was the 5 days of high dose prednisone after each round. My dose was dropped to 60mg because I could not handle the 100mg originally desiganted to take. I found nothing helped to combat the side effects . My heart raced, shortness of breath, irritable, face flushing and very emotional. On the 6th day when I stopped the pred, I would just crash and it would take the better part of the following week to pull myself together. Fatigue increases with each round, so listen to your body and rest. Drink plenty of water to stay hydrated and flush the chemo from your body. CVP-R is doable, but like all chemo's it can be a challenge. My diagnosis was Follicular NHL-stg3-grd2-typA with no bone involvement. I did two years Rituxan maint treatment..(infusion every other month) after chemo and finished it in Feb 2013. I reached full remission and feel pretty good. Please feel free to ask any questions as your treatments progress. We have a few others in the group that also did this cocktail, so hopefully they will share their expereince with you. Hang in there, the first treatment is always the scariest, but after that it gets better with each round once you know what to expect.

Best wishes...Sue (age 62) 

ingi1965
Posts: 14
Joined: Aug 2013

I have learned to look chemo as any other treatment for a disease .... just with different and less desirable side effects.

Chemo is what will heal me from cancer, my disgnosis is similar to yours.

I am surounded by positive people and  intend to keep it that way.

Yes I have cancer but in the grand scheme of things some people are much worse of than I am.

God is in total control and I am goingthrough the motion, the healing is His and His alone.

Can you tell me what you mean by "crash", would that be extreme fatigue.

How was your week prior to resuming chemo.

Thank you for your help.

ingi1965
Posts: 14
Joined: Aug 2013

At what point did you get in full remission, after hw many rounds did they re-do a pet scan and BM biopsy?

Did you try sleeping aids to help with the side efects of the prednisome ( I heard insomnia is a big time side effect)

Many Thanks

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Ingi,

 When I stopped the prednisone on day 6, and I'd crash...meaning VERY tired with body aches, much like a flu feeling without the throwing up. My muscles would be sore and achey, joints hurt, just an overall feeling of yuk. Tongue Out Sleep aids did not help me much...I got 3 to 4 hours of sleep a day during the pred week....sometimes 2 hours here and there, but not a solid block of sleep time. My bone marrow biopsy was done prior to chemo treatment. I'm pretty sure it's done early on for staging. If I had had it in the marrow I would have been a stage 4, which, by the way, is treated the same as a stage 3. My Oncologist did CT scans with contrast dye instead of PET scans. I had one scan before diagnosis and then again after round 3, and then another after round 6. Then I had another scan 4 months later and then yearly..(2) and won't have one for another year. My doctor is conservative with scans compared to others. I did not get the green light on "remission" until April 2013, after finishing my 2 years of Rituxan maint. This however is not usually the case...many folks reach remission as soon as their chemo is finished. I had one pesky tumor that just took longer to knock back. I do remember after round 6 my tumors were all shrunk...I think 80%....after round 3 I had 40% shrinkage, so the chemo does knock the tumors back pretty early on. You will feel fairly good the week before each chemo round...at least for the first 3 or 4 rounds. Last 2 rounds I was just plain tired the whole 21 days between 5 and 6. Remember though...you may be different and feel better. Age and general health plays a part in how you feel...I'm 62 and fairly healthy, or at least thought I was. Well..I hope I answered all of your questions...if you think of anything else, just ask. Take care...Sue Smile

ingi1965
Posts: 14
Joined: Aug 2013

You feedback is realistic but yet positive, your story is inspiring

i am surrounded by an amazing group of doctors.

My bone marrow biopsy came back inconclusive, so mine is officially a tage 2 but my oncologist suspects it might be a stage 4.

Regradless the meds I am getting are prescribed for all stages :>)

He gave me a choice between R-CVP and Ritxan/bendamustine.

The second choice seemed easier to handle but I ended up refering the final decision to him.

I want the better results and not the easier treatment.

Treatement is 5/6 months and remission well prayerfully be way longer then that!

How did you feel right after your last round ofchemo and how do you feel now?

Did you celbrate your first time of being pregnasone free :>))))))

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Ingi,

 I do remember how I felt after my 6th round...very tired, but also relieved and happy. I had some neuropathy in my fingers and toes, but it gradually went away over the next 6 months. It just takes time for the chemo to leave your system after 6 rounds. YES...I was a very happy camper once the prednisone days were over and I definetely celebrated...sleeping! Laughing I feel pretty good right now.... (knock on wood) and hope to stay this way as long as possible. No major complaints to speak of.  Best wishes....Sue

 

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ingi1965
Posts: 14
Joined: Aug 2013

You are a real inspiration Miss Sue.

I pray that God bless you with many years of good health and happiness.

I have sleeping issues on my best days, even before cancer knocked at my door.

That along with the neuropathy are my biggest concerns, God will make a way, his Grace and peace is and has always been with me.

It will be with me when my Chemo starts as well :>)

 

 

 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Ingi,

  I read your post earlier today. I was also treated with r-cvp and had follicular. I am gong to wait to see how your bmb comes back before making any in depth comments. I can tell you that after you have the bmb you will not be thrilled looking for the next one. I was stage 4 with the bone involvement. Went into remission after the 6 rounds. Sue and I were pretty close in our diagnosis and kept each other up on what to expect. We are also close in our age catagory and experienced pretty close to the same things. We spent many nights into the wee hours because we couldn't sleep posting on this site. John  

ingi1965
Posts: 14
Joined: Aug 2013

I had my bone marrow biopsy under consciense sedaton and other than being groggy for the rest of the day I did fine.

i did not experience any pain, other then being a little soar the day after.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

That's good for you. LOL. I was fully awake with just a light local. It was a terrible experience. I felt like they were going to break the spike off in my hip bone. Don't know what happened in there. My blood pressure dropped right afterward to 66/47. I was close to passing out. It was scary. The results of your bmb will aid in the staging. If it's a stage 3 or 4, like Sue was saying it is treated the same. When you get a chance go to your about me page and put all the results there so everyone can look and you do not have to keep repeating when ever someone asks. It saves you a lot of time. Remember this is very treatable and some have labeled it as a chronic disease. John 

ingi1965
Posts: 14
Joined: Aug 2013

Hi John,

 

My oncologist called it a chronic disease ... then again so are allergies hhahahaha

Thank you for your suggestion on indicating the stage of my disease but I am going to pass on it for now, to me 1,2,3 or 4 does not make a difference. God is in control, he is the captain of this boat and I am in the back seat going through the motion.

That is the message I would like to pass along people going through this at this time.

So how did your chemo experience go?

How are you feeling now and how were you feeling right after?

Thanks

 

 

 

 

 

gerbil
Posts: 1
Joined: Sep 2013

Yes, I finished a course of R-CVP in mid April and am now on Rituximab (presumably the same as your Rituxan) every two months. Blood counts went down quite a lot in the last two months of treatment, making me feel very weak towards the end. However my strength began to return a few weeks ago and I can cycle uphill etc. 

My experience with the treatment was this: cyclophosphamide made me run to the loo ('bladder urgency') but wore off about halfway through the cycle. Vincristine gave me mild peripheral neuropathy and if necessary the hospital would have lowered the dose. The numbness is only some of the time and has nearly gone now. 

Good news: I never felt sick and my hair didn't fall out. I put on some weight because of the steroids. In a way this was the most difficult of the treatments, as it made me light headed, strangely energetic and briefly a bit crazy. Also I was unco-ordinated so sport out of the question. However I did tidy and reorganise the house so it wasn't all bad!

For a while swimming was the best exercise as itis non load bearing - the water holds you up. But not in public heated pools as there's a risk of infection. 

I am feeling much better now, energetic and back almost to the old me. But chemotherapy seems to have changed my guts. Various effects some of which I don't want to go into on a discussion board.

Hope this helps.

ingi1965
Posts: 14
Joined: Aug 2013

My gut is undergoing major change as well. It was what got me into the hospital in the first place....

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

http://chemocare.com/chemotherapy/acronyms/cvp.aspx

Your combo drugs.  You can read more about each individual drug at this site also, and the Rituxan as well, of course.

The Vincristine is famous for neuropathy. Ther Prednisone for irritability, weight gain, and insomnia.

Of course, eack person's experience is wholly unique, and you may not have any of the most common side-effects.

max

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

I too was another receiver of the CVP-R..My last treatment was at the beginning of August, so I am still fresh off the Chemo bus. Stage 3 to stage nothing from february to august<----AMAZING

My hair thinned after I was done with my treatments and I also got very mild neuropathy after my last treatment, nothing that 600mg of ALpha Lipoic Acid wouldn't fix.

I had zero side effects while going throught the treatment really. A lil jaw pain at first every time I tried to eat, it was like eating something massively sour and your jaw waters, that will fade about 4 days after each treatment. I got a little sleepy from time to time, there was no major change in fatigue for me from start to finish and I was already fatigued when we started. Prednisone however made me gain 30 lbs that I am still unble to shed, watch out for those late night snackings...lol...

I wish you the best of luck and hope that you have a do-able journey as I did

XXXOOO

Carie

ingi1965
Posts: 14
Joined: Aug 2013

Hi Everyone

I have 3 rounds of chemo under my belt.

Overall I am handeling it pretty well, they had to interupt round for 1h after after I had an adverse reaction to the Rituxin.

I did fine after and finished the treatment.

First treatment was 7h, 3rd was 4... we are moving up in the world haha

I am meeting with my oncologyst on Thursday to schedule a PET or CAT scan to evaluate my progress.

I am excited and nervous all at once.

My side effects are mild, very little nusea, less sleep with the prednisone and some headaches and light headed on some days.

I am starting to experience a mild discomfort around one of my tumor areas and will address that when I meet him thsi week.

Once the test come back we will find out if I need 6 or 8 rounds of chemo ... fingers crossed.

Many Blessings to all of you.

 

 

 

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Ingi,

 Sounds like you are doing fairly well so far..."yeah"! We all have different reactions to chemo, but so far yours sound pretty close to mine. CVP-R is milder than other cocktails. Just remember as each round is finished, you may feel more tired. I was exhausted by round 6, but gained energy slowly but surely over the next 6 months. Be sure to share your scan results and I'll be keeping good thoughts and prayers for you. Hang in there...so far so good! Best wishes...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63) In Remission.

jimwins's picture
jimwins
Posts: 2004
Joined: Aug 2011

You are half or nearly half way through!  Celebrate!  Glad you are handling the treatment well.

Hugs - Jim

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