Rcvp

hello.

i have been recently diagnosed with stage 3 fNHL.  i am going to start treatment with this RCVP cocktail at the end of this month.

i know, i know ... everyone tells me that no 2 people react alike to this stuff but i'd sure appreciate any feedback from others going through this. 

what did/are they experiencing as side effects? 

is this the right up-front treatment? 

when the fNHL returns (as they assure me it will), what follows up drugs are people using?

i have a full time very demanding job ... will i be down & out or can i expect to keep working?

has everyone lost their hair with this treatment? 

how bad is the nausea?  & is there anything to help with that? 

any general or specific feedback on these things would be greatly appreciated.

 

many thanks & best of health to everyone on this board.

-mb 

How is it going so far? I have fNHL and am in beetween treatment 1 and 2, I am starting to feel better, the mouth sore was from mouth to butt and has alliviated. However am having allot of spleen, stomach,back and abdominal pain. I am also having lymphnode pain that seems to move from one area to another. I Had a reaction to the rituxinmab (sp?) Rigors but did fine on the main dose. What about you?

i'm fine.  none of the issues you mentioned ... so far.  2nd treatment this thursday.  we'll see what happens after that.  i still have my hair, no pain, no sores, no fatigue, no nausea. 

not sure what the "mouth to butt" sores meant in your post ... though last night i just read the section of robert schimmel's terrific book where his onc told him " no mouth to butt contact."  it was hilarious.  a good laugh is really helpful, i find.  even at my own expense.

i tell you, if my onc didn't say i have cancer, i'd never know.  i think it'll get worse before it gets better.  it all remains to be seen ...

continued good recovery to you.  let me know how you're doing.

 

cheers,

mb 

 

 

On 2/8/2008 mangiacavallo wrote:

hello.

i have been recently diagnosed with stage 3 fNHL.  i am going to start treatment with this RCVP cocktail at the end of this month.

i know, i know ... everyone tells me that no 2 people react alike to this stuff but i'd sure appreciate any feedback from others going through this. 

what did/are they experiencing as side effects? 

is this the right up-front treatment? 

when the fNHL returns (as they assure me it will), what follows up drugs are people using?

i have a full time very demanding job ... will i be down & out or can i expect to keep working?

has everyone lost their hair with this treatment? 

how bad is the nausea?  & is there anything to help with that? 

any general or specific feedback on these things would be greatly appreciated.

 

many thanks & best of health to everyone on this board.

-mb 

Hi MB,

How are the treatments going by now? I hope you are doing well.

My husband was diagnosed with fNHL on April 10 and has had two RCVP treatments, one every 3 weeks. He also has had no hair loss, no mouth sores and seems to be doing quite well for having to go through all this.

His oncology nurse told him to rinse his mouth after eating with a solution of  2 teaspoons baking soda and 2 teaspoons salt especially for the first week after the treatments.  We have cut the baking soda to 1 tsp and salt to 1 tsp as he felt it left too much of a salty taste to everything he ate.

He rides his bike 4-6 miles twice a day and walks a  mile twice a day weather permitting. he does try to get in a ride and a walk at least once if the weather is bad.

His oncologist told him to get a second opinion before treatment started and they recommended the same treatment at the center at Northwestern as our doc did in our small town.  This seems to be the upfront treatment .

Other than the white count dropping but going back up, constipation was the only side effect from the chemo that we are aware of.

Our Cancer Center gives Aloxi as an antiemetic before the chemo, also, Benadryl,Tagamet and Decadron before the chemo starts. The Aloxi lasts 4 days and he has had no nausea ever.  

Keep posting and let us know how you are doing. We aren't to the stage of it going into remission yet. We have been told that after 3 treatments , he will have a PET/CT scan to see how the chemo is doing. Then he will probably have 3 more treatments. His third treatment will be in two weeks.

JF 

 

 

 

 

 

 

 

 

hi JF ... i had my 6th and, for now, final treatment with RCVP. just yesterday, as a matter of fact. throughout this cycle my reactions have been minimal. i have not lost any hair, no mouth sores, no constipation. not much of anything serious, really. sometimes i get the hiccups for a bit, some acid reflux, head aches (not terrible ones). the big thing that has happened is that i gained A LOT of weight. i started treatment at 230 lbs. and am now at about 265. it fluctuates, as it is mostly fluid build up from the prednisone. so my onc put me on a diuretic. that has helped. as the treatments have gone on, the reactions have lasted longer and gotten a bit worse. i feel it coming on again after yesterday's treatment. i'm expecting about 10 days of feeling a little crappy but then i'll be over it. it sounds like your husband is doing quite well and staying very active. i have not missed a day of work. i had a PET scan and CT after treatment #2. i hate those things. my onc wanted me to do another a few weeks ago but i was against it. too much of that radioactive stuff in my body ... makes me nervous (there are enough chemicals being poured into me these days). i told him that if the PET scan showed no improvement or that my tumors were getting worse and it wasn't going to change his course of treatment, then why not wait until we're done with #6 and THEN scan. he agreed. so they'll scan me again in a couple of weeks. stay away from all processed foods, dairy, fats (except good ones, like olive oil & avocados, etc.), and most especially salt ... if your husband's doing prednisone. the prednisone has been the worst part of the cocktail for me. i wish him all the best. -mb

Hi I went through my 1st R-CVP treatment 2 1/2 weeks ago.  I took 150 mg of prednisone for 5 days and then when that ended, there was no taper.  My body went into prednisone withdrawal with the same type of pain you are describing.  I suspect that is where your pain is coming from.  Mine lasted about a week and went away.  I hope it is not as bad when I go for treatment #2 next week.