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CHEMO RESPONSE

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

Does anyone out there know the actually response percentage to follicular lymphoma with chemo? I read different rates on the sites I get on. John

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi John,
I know this is a frightening experience for you as it is for all of us, and I absolutely believe that knowledge is power, but I think you’re on information overload lol. Would you trust a specific number if someone gave you one? There are hundreds of thousands (or maybe more) of people on chemo and one group will respond differently then the next group and there are also many different kinds of chemo. Some that work on you won’t work on me and vice versa. A percentage is a chance like gambling. If you’re told you have a 70% chance of something that doesn’t mean it will happen. What if you’re in the 30% or what if you break the mold and have something that no one has ever experienced before? Try not to live by a number just because it’s there doesn’t mean it applies to you or to any of us and it can make you crazy! Hang in there! Take Care!! Cat

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

Yes, I know you are right about the numbers. I feel like I am so overloaded right now. This is all so new to me, just like to other people on this site. I spend so much time looking up stuff. Ater a while it all runs into itself and some articles start to contradict other articles. I guess some of the articles are older. The dates are not always at the top of the page. It does seem like they are making great strides in nhl. Thanks for the reply and keep in touch. john

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

I agree with Cat. Number searching is both consuming and overwhelming. I try to write my questions down and take them to my onc. He helps me sort through the reality and tells me what to ignore.

My radiation onc told me I had a 30% chance of relapse one time. I did my best to see the positive 70% chance it won't :) BUT it took a long time to get me there. I too did the research rollercoaster........I think we all do to some degree.

Just take a moment at a time and relax, you'll be watched very closely by your doc and your nurses are a great resource when you have questions.

My best advise is to be careful, don't be around anyone who's sick. Wash your hands ALOT and either use paper towels in the bathroom or make sure to use your own towels. When you go shopping, use purell or wipes to wipe down carts and things that have germs. It's all pretty common sense stuff, but it works.

Take care,

Beth

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

I talked to my Dr yesterday and he said that the follicular was slow growing and even though not curable, they have seen remissions of up to 20 years. He felt this was a much better cancer to have than the aggressive large b cell lymphoma. So I felt much better after I talked to him. I know my tumors started shrinking quickly after the first round of chemo, and now I can't really feel them.

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

Kay, I am really fairly new to the site and do not know how to go back and read historys of what people have written. My tumors are in my abdomen and I can feel them right in the center. Of course it causes swelling in that area. Are yours located in the same area? You said you were able to notice them shrinking after your first treatment. Do you have follicular as well? It was explained to me that it was objective to shrink them as much as possible and put it in remission. That all sounds like the most logical aim. If they are able to do this in most cases maybe a permanent remission is getting closer. I just hope I see a cure for this disease for all people that have come in contact with it. When I was very young I remember that people that came down with TB had to spend months in a live in hospital and hoped for a remission. Today that disease is no longer a big deal.

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

I had 3 nodes I could feel before treatment. I did my treatment on Thursday and by Friday I could feel that they had shrunk dramatically! By Saturday I couldn't feel them at all. I was shocked, and very happy :)

When my surgeon said they'd melt I thought he was crazy.

I didn't think I was doing well until my onc told me about the 4th treatment that he knew how bad I didn't want to be there, but came in every time with a smile on my face. I was just happy the treatment was working, in between being tired of course.

I just try to remember to do the best I can for that day and moment to know that God has a plan, and things work in HIS time, not mine.

Take Care,
Beth

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

Beth, I hope it works for me the same way. I get so tired of putting my hand on my abdomen and feeling the bulge. It has probably been there for a long time, but who reaches down and feels their stomach all the time. I never did till I got my cat scan. I got a rather hard spot right in the center of my abdomen. I don't think it has gotten any bigger, but you know how the mind works. John

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

At least it's not so socially unacceptable to grab your tummy john.....mine was my groin LOL and I did it too.

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

Mine are in the lower abdomin, and quite noticable to me. I do have follicular. Oh and I had an Aunt that had TB in the 50's and she was in a sanatarium. Funny how things change.

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