Partial vs full response confusion

is anybody as confused as I am about partial verses full response after primary chemo (I had R-CVP)? My onc says I had a partial response, but that is "good" news. She says one node (over my aorta) is still "pathological" in size, but there's no way for us to know if that's tumor or scar tissue. I was concerned what to tell my family and she suggested, "I responded to my chemo and now I'm taking rituxin for 2 years to maximize my progress." She also told me the partial response has no impact on my future treatment options or my long-term survival rate. So why bother to even differentiate partial from full? Partial obviously sounds like less and reason to be disappointed, but she says I shouldn't be disappointed. Anyone else with experience here?

dianeee, the literature is very clear about the benefits of Rituxin for NHL patients. My understanding of partial remission is exactly thta: following initial treatment the disease mass is reduced but not completely eliminated (although from what you say, yours may be). The issue is that, many times, cancer cells may still exist in your body. The Rituxin is effective in keeping those cells from readvancing for a longer time than inital therapy alone.

A lot of information on the hows, whys and potential side effects can be found here: http://www.nhlcyberfamily.org/treatments/rituxan.htm

because I am on watch and wait, I have not experienced it myself but I know its in my future so I tried to learn what I could about it.

Good health and good luck with your continued therapy,

Kermica

like dianeee i have done 8 rounds r-cvp {finished in may /10.just started 1st of 8 rituxin treatments.started at stage 4 and was told i was full of cancer.now i also have partial response,one node has grown in size while all the others have returned to normal.not sure if we asked enough questions.went thru chemo really well other than fatique.58 yrs old and work in an industry loaded with a lot of known cancer causing agents.docs are wanting me to return to 12hr shifts and not sure if i can do it.when does the fatique pass and you return to normal if ever.thanks,dt

dt, my onc says it can take months for the fatigue to resolve. Even years, though I guess that is less common. I also have chronic fatigue syndrome, so am curious to see. I just had my last R-CVP July 2nd. Still very tired and napping every day. i can't imagine your doctors telling you to go back to a 12 hour day job. that sounds crazy. myself, I'm on disability until i feel i can work again. I needed to let my job go...too much stress over deadlines and budgets.

I say: you have cancer. fill your life with things that support your health and happiness. For some, that could be that 12 hour day job, I suppose. For me, it's time with family and old friends, so we're moving back to my home town.

dianeee-
at least as regards clinical trials for lymphoma, the definitions of complete response and partial response were standardized about ten years ago (http://jco.ascopubs.org/cgi/content/full/17/4/1244) because, in short, everyone doing clinical trials needed to be on the same page, so to speak. that's why one is differentiated from the other. now even though these were established for trial settings, I would imagine that your onc is applying these definitions to you as well, and as well she should.

You're certainly right that partial is less than complete, and that complete is preferable to partial. However, you have follicular lymphoma right? in that case, a complete response to chemotherapy wasn't terribly likely to begin with, as FL is typically just too indolent to respond so favorably to chemo.

As far as what they suggested you tell friends and family ("I responded to my chemo and now I'm taking rituxin for 2 years to maximize my progress"), that's pretty slick. It's not tricked out with any medical jargon so most people, when hearing it, will assume that they understand it and won't stop to question it, even though, while accurate and not BS, it doesn't tell the whole story. Slick indeed (in a good way).

Ross

thanks for the explanation, Ross. That explains it quite well. I just couldn't understand why she kept insisting I should be pleased with a partial response and not disappointed. If they used to just count responders and non-responders, then it's good - I was a responder! I get it now.

Yes, the friends and family story is slick and a real good one for people in your outer circle especially where you really don't want to get into too much detail. If you say "I had a partial response," people want to know what that means and when you say "well, all my tumors didn't shrink enough," that sounds bad.

The part about full response not being common with follicular lymphomas is news to me. My onc, I have noticed, tells me only what I need to know in that step of treatment and does seem to sugar-coat things a bit. Like "you probably won't lose your hair, but it might thin." Righto.

thanks again for helping me out. -dianeeee

Hi all! I am so glad to have found this discussion b/c yesterday my husband got the same result. He finished up 6 Rounds of Bendamustine and Rituxin. Half way thru there was 90% shrinkage based on his scans. Yesterday we got his final scan results and were told "partial" remission due to one node that has "grown" a small amount is size. We too were told that is could be scar tissue, could be cancer or could be a "measuring" the slice error. Anyway, we were disappointed. My husband is now on to a vaccine trial. The doc hopes that if it is anything, the vaccine will clean it up. The doc was very pleased with my husbands end result, very. I am trying to focus on that, but let's face it we want to hear remission badly. None of us want to go through again what we just closed the chapter on. Any advice appreciated.

Kperna-
I noticed that the clinical trial your husband is participating in began recruiting a couple of years ago. Have you asked the trial investigators if they have any preliminary results from other participants? I don't know if they can, could, or will tell you or not-- but it's certainly worth asking.

Ross

yes, the clinical trial is shrinking tumors. We shall see how it pans out.

I've kind of come to terms with my "partial response." In a broad sense, none of this means anything...statistics and the like. We are all individuals and miracles are always a possibility. That said, I just need to move on. My new mantra is "I'm a survivor superhero and I'm having the greatest day ever!"

Naturally, sometimes I worry what with the one stubborn tumor surrounding my aorta. If I had just one non-responder and it was easily removed, I'd just say remove it.

Hopefully, by the time I need to consider chemo again it will be like having a baby - you forget you swore you'd never put yourself through that again.

I also want to say that we all need to make sure we are living in this moment and getting as much joy as we can from it. We have to be doing the things we always wanted to do. We have to live like there's no tomorrow. Not because we have cancer, but because we always should have been anyway. Life can suddenly be shortened. We know that only too well now.

I met a great man at the hospital who has leukemia. He is not responding well to his stem cell transplant. He wants to go to Italy. His wife is afraid financially. I so wish he would go to Italy, but he still can't quite get to that place where he understands the sacredness of where he is at and that everything will work better for his wife if she is not left regretting that she didn't go to Italy with him. Instead, they are spending perhaps what's to be his last few months of life in and out of hospitals. Sometimes it seems like the people who go to Italy are the most likely to have those long remissions or spontaneous "cures."

So I'm not worried about my partial or complete response anymore. I just want to be sure I'm going to Italy if that's what I want to do with my life.

hugs out to you all

-dianeeee