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Longevity

Richsterr
Posts: 34
Joined: Aug 2010

Hi
How long can you live with slow growin non hodgkin's lymphoma? Must you die from it? I try not to take into account the statistics but does anyone know?

Richard

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Richard,
It breaks my heart everytime you post this question, because in all reality, there just isn't a clear cut answer that will give you a definite yes or no guarantee on how long you will be around. Only God knows when that day will come. As others here have explained, at this time there is no cure (medically), but it can be managed for many many years. A few have responded with examples of upwards to 15, 20 and 30 years with being successful in fighting this cancer battle.
I have made my "peace" with the whole "how long" will I live thoughts. How did I do it? Well...my faith in God. I found out in June that I had this cancer and by the end of July (after putting myself through sheer hell with thoughts of "when will I die"), I finally fell on my knees and told God that I was turning this all over to him. I said "I don't know why I have to be with this cancer in me, but if I must, then I'm going to rely on you to get me through it" Amen. I don't like to talk about politics or religion with strangers, as all too often it can backfire in your face, especially when you don't know where another stands in their thinking. I'm just sharing with you how I deal with the day to day pain of knowing I have a disease that is not curable. I ask God for strength, and then I try to live in the day and make it as good of a day as possible. Do I falter at times and have doubt and fear...oh you betcha, but thats when I stop what I'm doing and ask God to set me straight again. You just can't have a better friend than the Lord, Richard. Ok...with that being said...I will keep you in my prayers and ask God to help you find some peace. I hope this wasn't offensive in any way...I just wanted to share what helps bring peace into my life. Best wishes to you Richard....Sue

Richsterr
Posts: 34
Joined: Aug 2010

Sue
You are the only one who has given me somewhat of an answer and I thank you for it. I know I am looking for an answer and that is not possible. I am just trying to see if people have survived this disease for a period of time. The internet says no. I dont go by the internet. Since I am single and have no support at home it helps to hear encouraging replies. I guess everybodies cancer is different. I am like you , there are times that I get very depressed and times I feel fine. I was just trying to find out if people have survived this disease and nobody gives me an answer. Ok thanks you made me feel better.

Richard

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Richard...this was posted following a question you asked in a prior post about Life Expectancy...(you probably forgot about this one)...Hope you find some peace after reading 711toms response to you...Sue

August 30, 2010 - 6:01am by 711tom
Life expectancy
Richsterr, I was DX in 1993 at the age of 34 with stage 4 follicular lymphoma. I did CHOP and was in remission for 8 years then did R-Trenda and in 08 did R-CVP. I have been healthy since and while I have a few visible (STABLE) tumors (groin, neck) My ONC has me waiting, as he says there is no need to treat at this time. With the exception of the chemo I have never been sick so keep the faith, I still have a lot of options and I have been around for 17 years and healthy most of that time. I am confident I will well exceed the 20 year marker even 25 and hopefully die of old age many years from now. It is scary surfing the net and reading stats. Nobody can tell you when its your time except God so keep the faith and live your life. All the best!!

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I am glad Sue was able to provide you with some peace. Go back over your postings and reread them. So many people gave you so much information and really wanted to help. You ask in your post if people have survived this disease. Yes, you are talking to them! God bless and take care. Mary

TGP
Posts: 5
Joined: Aug 2010

Richard:
I was diagnosed with stage 1V follicular lymphoma in 1998. I had chemo. along with Rituxan. I think all of us cancer survivors can relate to the anxiety you are probably experiencing. I decided to quit reading the statistics about survival because I found them to be disturbing, plus the fact that I think much of the information in the stats. is somewhat outdated by the time we read it. I would like to make a suggestion which may help you --- you may want to listen in on the teleconferences presented periodically by the Luekemia and Lymphoma Society pertaining to NHL. I find those to be very encouraging. I hope this helps you.
Tom

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Nice,nice job Sue!!

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

Richard,

I wish I could tell you that I am confident that I will live for another 30 years and who knows...I just might. Sue is right God is the only one who knows what's in store for us. Live for today my friend. There ARE people who have lived with Lymphoma for long times and one year we may be one of them.

When things go well we sometimes don't think about coming here and how we can support those who are beginning this road, it doesn't necessarily mean they aren't around. This disease can and does kill people we all know that on a very personal level. I think depression is a reality too, I certainly have moments when I get down. This weekend I realized this is where I am. I am scared about the pain I am having. I don't want to automatically go to cancer, but I am human and sometimes I can't help it. This disease changes our thinking.

So to answer your question the best way I know how? Yes people live for years with NHL.
They are making great strides with research, lets just help light the fires under their butts!!

Take care, rest easy.

Beth

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

Beth,
A few months ago I posted a thread and asked where are the people that were on here several months ago. Where did they go, I asked. Some were just finishing up treatment and some were just asking for information. I got no replies. The more I thought about it I realized just what you are saying,they must be feeling well and have gone about their way. I will not be one of those people because I know what it is like to be alone when you hear this kind of diagnosis. I will be here as so many of you have to help the people that are just starting this journey. It is scary to say the least when we feel alone in this battle. This site has helped me as it has helped so many. I know people get busy and sometimes leave this site behind because they are doing so well. I would have hoped they would not forget the people such as yourself and the others that were there for them when they needed some reassurance in their lives. I don't mean to sound so blunt, but that is the way it is. It is no use trying to sugar coat anything when trying to make a solid point. I want everyone on this site to know that I appreciate everything that everyone has done for me. I feel like I have made a family of people I have never even met and in reality probably never will, but nonetheless they feel like family. I also feel like this site offers a positive outlook and that is a good part of the battle. Now let me take a breath!!!! John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John,
I feel the same way you do...I'm not going anywhere either. When I'm in remission and feeling like a million bucks I'll be right here talking to anyone thats willing to listen or wants/needs my input and support. You my friend were the very first person to respond to my first posting and you will never know how great that made me feel. Now it's my turn to pay it forward. And who says we won't ever meet one another in this group??? We plan to do some traveling one of these days..and I've never been to North Carolina, New Jersey, or Florida.... so ya just never know...ya know?...ha! I'm keepin all of my options open, cuz I'm plannin on living for a l-o-n-g time..(knock on wood). Off for round 2 in the morning. Busted butt getting things done today, but I'm all done and ready to rock and roll with the chemo. Take care and glad to know your gonna be stickin and stayin with this most wonderful group of people!...Sue

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

Sue,
Good luck in the morning with round #2. You will do just fine. Maybe a little tired from the Benedryl is all you'll feel. Probably be peeing your brains out from those bags of medicine. It took me 3 rounds to figure that out. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John,
Day 3 and your right...been peein like a race horse. The flusher handle on the toilet is "not" going to make it through 8 rounds...ha! Feel pretty good other than that...well.. the creepy "P" side affects arn't any fun. See...I'm getting sooo much better with not even saying the word...ha!ha!ha!...Sue

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

Sue,
I must of missed something. Do you have 8 rounds now instead of 6?

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John,
Thats what it says on my chemo protocol paper work...upper right hand corner of sheet says..Cycle-2 of 8- 9-21-10. I get a copy of my lab work each time I go in and a copy of my chemo protocol after each round. I'm looking at the first round paper work and it says..Cycle-1 of 8- 8-31-10. Maybe I am not reading it right...I'll ask my doctor when I get labs done again and get back to you. I'd prefer 6, thats for sure! When is your next round? Sue

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

Sue,
I dug out my paperwork and could not find anything. I am supposed to have all 6 done then go for a scan. See what that shows and then I guess it will be decided. I had a scan after round 3 and it was down 2/3rds in SUV. It makes me wonder if they are really concerned about tumor size opposed to SUV. Maybe someone out there knows??? I never asked about the tumor size. I go for my 6th round next Tuesday..at least I hope it is the last one. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John,
I asked Steve when he got home from work if remembers my doctor saying 6 or 8 rounds, and he said she told us 8 rounds on our first visit to meet her. Anyways, I will ask her again next time I see her. She checked me out on Tuesday before chemo and said she couldn't feel any swollen nodes or tumors in my neck, groin,or under arms. In her opinion the chemo has shrunk the visible tumors and has no doubt that it is also shrinking the ones in the abdomen. I told her how my tummy has ached,twisted, and quivered for a week after each treatment and she said that is a definite sign of tumors shrinking in the tummy. So...that all sounds good to me until we do a scan and get a "true" picture. I'm curious now why some people get 6 cycles and others get 8. Why would I need 8 when the cancer (at this time) hasn't even traveled to the bone marrow? Maybe she is contemplating that happening and thats why she decided on 8?? Silly to guess..just need to ask the "right" questions when I go see her. Thats hard to remember to do when I see her 15 minutes before chemo and I'm already nervous and not thinking good..ya know? I'll have my chemo partner ask her for me...writing it down now. Sue

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

John, Sue, Beth, Richard, et. al,

All I can do is add my agreement to what you all are saying. Personally, I'm not very concerned about getting cured or not - because, as Sue said, that's in God's hands. But, assuming that I do get full remission, I plan to keep up the blog. After all, it's called the "Cancer SURVIVOR'S Network"! When you think about it, even those of us that are still in active therapy are survivors. We've made it this far. Look at Vinny, he's had a really rough road, but he's still surviving.

Y'All have been invaluable so far for me, and I am grateful to have this group to talk with. One of you said that we can "pass it forward". My sentiments exactly.

I'm down in Houston today to get the results from my first interim testing at MD Anderson. I feel good and expect a good report. My third infusion is this Thursday back home. So far so good.

Prayers and Peace to you all,
Tom

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Well said Tom and the very best of luck to you. God bless. Mary

truckingalong
Posts: 444
Joined: Aug 2010

Tom, how was your third infusion? Hope for the best!

Liz

miss maggie
Posts: 929
Joined: Mar 2010

Hello Richard,

I really can understand your fear. When were you DX? How old are you? I remember when I was DX. My bowel perforated in sept 2009. I had an operation then to resect my bowel. I was in the hospital for 3 weeks. After one week home I went to see the surgeon. I was shocked to hear I had NHL. I went into such a depression. After finding out the true facts of my illness, I felt better. Richard it is treatable. I have stage 1, marginal low grade B cell NHL. Keep the faith. Maggie

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