COMPLETE REMISSION ZERO ACTIVITY

COBRA666 said:

MAINTENANCE
Chris,
It would have been nice if you could have found this site in 2008. I am sure things would have been a lot smoother for you. It took me a couple of months after I was diagnosed and I was a complete mess. I guess everybody is when they hear that word. It seems years ago it was certain death, but now they have given the cancer name to every disease you can think of. I am not saying what we have is not serious,because I know it is. Its just a few years ago it was called Hodgkins Disease and there was no connection to the cancer word at all. There are different levels of this disease and some of those levels are more serious than others. They have made great strides in treating this disease which I am very grateful. It was rough at times getting to the remission stage and like you and all the others that have reached this stage I hope we all stay there. It does make a lot of changes in life with all this stuff on our minds. Like I said I am glad to be at this stage and really appreciate you taking the time to write. I hope you stay in remission forever,but if you don't then they have new things to combat this disease everyday. Stick with us we have new people all the time and you could really be an asset having been thru it. John
(FOLLICULAR NON HODGKINS LYMPHOMA-GRADE1-STAGE4 ASYMTOMATIC-DIAGNOSED MAY 2010)

allmost60 said:

Happy for you!
Hi Chris,
Thank you for sharing your success with treatment. It's always up-lifting to hear from someone finishing with a "happy" ending! I'll also be on Rituxan maint for 2 years when I'm finished with my chemo.(R-CVP). I just finished round 3, so I still have a ways to go. Please "DO" keep checking in as it is inspiring for everyone to hear when treatments are working. Good luck Friday with your last session...nice way to start the weekend knowing you will be all done! I'll keeping positive thoughts for you to have a long and happy remission!
Love...Sue (FNHL-Grade2-Stage3-Dx 6/10)

COBRA666 said:

MAINTENANCE
Chris,
I forgot to add I too had the R-cvp instead of the R-CHOP. I was scheduled for the R-chop but since I was 60 they decided to go with the R-cvp. I am glad they did. I hear it is not as harsh as the other and less side effects. Still had the days of dragging butt and feeling weak as a kitten. I never had any side effects that I know of from the rituxin. I think it was all from the chemo. Blood counts stayed up pretty good, but did drop a little. Lost most of my hair,but no all. It was really straggly and broke off easy. Fingernails got like cardboard and broke real easy as well. I will be on the rituxin every 6 months for 2 years as well. I guess then I will see if it has any side effects or not. Its not a chemo drug, but an antibody drug.
What you are seeing at the end of the posts so far like Sue and I do,is our diagnosis,grade.stage and when we were diagnosed. It was suggeated by one of the group members to make it easier for us to remember what everyone has. Most of us have the Chemo brain and it hard to remember sometimes. It is strictly voluntary. Some participate and well,some don't, but that is okay too.
If you want to express anything here,just do it!! Its like one big happy family here. We have never met one another ,but we are still a close knit family. We are from all over the country in different states and some are from across the ocean. So please join us anytime. John
(FNHL-1-4A-5/10)

COBRA666 said:

GOOD NEWS WEEK!!!!
Tom,
Yes Vinny and I both had great news this last week. Its a scary thing going to hear the results. Sitting in the exam room for about 15 minutes waiting for the Doc. to come in. He came in and asked how I was feeling today and about appetite. He then said we are going to put you on the maintenance schedule every 6 months. No need for any more treatments. I asked what were the results? He said ZERO, there is no activity,its gone and you are in remission. I felt like I had to sort of drag it out of him. I guess its such a common thing dealing with patients everyday. Common for them, but not common for us,huh? I was wondering where you been. Thought maybe you won the lottery or something,hahahaha!!! Today would have been another round for me if I had another round to go. Felt good not having to sit there and have another infusion. The strenght is coming back a little at a time,but at least it is coming back. I don't need the nap everyday now. Seemed like I needed a nap for at least 2 weeks after each treatment. The last treatment I was napping everyday the entire 3 weeks though. The last couple of days I make it all day. Make sure you keep posting so we know what is going on. John
(FNHL-1-4A-5/10)

COBRA666 said:

Thank You
Liz,
Thank you!! I ain't going nowhere. I went back and checked and noticed a lot of people have left the site since I first started posting in June. On their last postings and they were doing fine. I will be here everyday reading and posting and watching and waiting as each and everyone beats this devil.Yea,I had some rough times, but I'm not complaining. So many others had it rougher than me. I am finally starting to feel a good bit stronger everyday. I don't need the naps like I used too. Do have times when I feel a little wore out,but that is to be expected. The prednisone put a little weight on me, but that will come off in time.You are going to have some more down days as you accumalate those treatments. When you get to the end you will probably be dragging across the finish line. I know I was as were so many on here. Your outlook and strenght will gradually return when the treatments are over. Seems like we all go thru ups and downs at different times during treatment with some having more severe downs,but I was fortunate in that mine were not as bad as some on here. I see you are having some bad times but they will get better. Hang in there and be talking to you. John
(FNHL-1-4A-5/10)

truckingalong said:

Thank you again and one more thing
Thank you, John for the comments. I know I am running a big marathon. I am telling myself I am getting there eventually. I do feel better in a different way but more tired.
Two weeks ago, one buddy next to me at the infusion center has the same dx as me now needs bone marrow transplant (becuz he was misdiagnosed so its tx is aggressive) becuz chemo is not working well. So he found match from his brother. This really hits me becuz I am adopted and have no knowledge of my family medical history. I did searched for info 20 yrs ago with no luck. Now I have decided to open this door again for fear that I may need medical info in case... such as this! Luckily, my neighbor friend happens to be a genealogist so is helping me get started with searches. This gonna be a challenge becuz my adoption was private - not through a social service agency. I don't think I need anything but why not get this rolling while I am at home healing? Well, I am gonna take one thing at a time.

Liz
(HL-4B-8/10)