CSN Login
Members Online: 5

You are here

non hodgkin's indolent lymphoma

Richsterr
Posts: 34
Joined: Aug 2010

Does anybody know of any persons who have lived for twenty years or more with non hodgkin's indolent or folliular lymphom? The statistic say only 7 ro 10 years. Is that so? I would appreciate any help on this matter.

Richard

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

Richard,
I see you been on those websites.Don't get me wrong I am not putting them down because they can be good for statistics. I have read the same thing and I have read other stats as well. I went from website to website when I was first diagnosed back in April. It all had my head in a spin. I didn't know what to believe. I was even confused to what I had anymore. I found several of the sites were outdated and some I never found when they were printed. I do not know of anyone who has survived anytime when nhl, because I don't even know of anybody that has it except the people here on this site. I know that statement sounds morbid, but its true,I don't know of one person personally that has lymphoma other than people on this site. I am sure there are other people on this site can give you a more straight forward answer. To be honest with you I would like to know the answer to that myself. John
MERRY WHERE ARE YOU? NEED A LTTLE HELP HERE!!!!

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

My doc told me about a patient of his that he's been seeing for about 15 years now, and they have never even had to treat him yet. He also told me we'd need to watch for options that I may need 10-15 years from now, so the 10 year thing? I wouldn't worry about it :)

John's right, watch what you read my friend! I figure life expectancy is what do I expect to get out of this life! LOL

Cancer is scary, but science is getting closer to longer lives for us heroes.

Take Care,
Beth

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

Beth,
You are so right. I really did not know what to say. I, myself relied on those websites before I found you guys here. It drove me crazy. Everything I read was different. I would see printed in 2010 at the bottom of some of the pages on some of the stats, but that did not tell us when the info was gathered. Mary was saying that some info is 2 years behind times according to her Onc. John

onlytoday's picture
onlytoday
Posts: 602
Joined: Jun 2010

John,
One of the oncs that I saw was emphatic about the strides made in cancer research over the past 15 years. He also said that the stats are outdated and that we can look forward to a 15-18 year life expectancy at this point but by the time we get 5-10 years into it they will come up with other treatments. He told me that the treatment can wear us down making us more suseptible to other problems down the road but that the nhl won't end our lives, unless we refuse treatment. He said that in his opinion the researchers are winning the war on cancer and NHL is one area where they are making tremendous progress. Hope this helps. It made me feel better when I heard it.

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

That really makes me feel better to say the least. I am sure Richsterr will read this post and should make him feel better as well. Thanks for the response. I have heard they are making great strides in lymphoma. I just wish they could make "ALL" cancers go away.

Richsterr
Posts: 34
Joined: Aug 2010

Thanks you are right. You straighten my head out. lol Thanks again

Richaterr

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

Hey Rich,
Don't feel funny about the question because it went thru everyones head at one time or another. I know it went thru mine at first and really messed my head up. I spent a month or more not knowing anything but what I read on the website. They give a lot of stats but really don't tell you anything. Had to come here to get the answers, right? I know I did. Nobody but us will ever know what we all went thru will they? I have said it before and I don't mind saying it again the people on this site are the GREATEST. John

merrywinner's picture
merrywinner
Posts: 621
Joined: Aug 2009

I really can't add too much to the excellent information already provided. I know my MD talked with me about the statistics at one of my first appointments. He said that there is no way to have a clearly accurate one as they are somewhat skewed. There are so many variables. For example once someone has a diagnosis of Lymphoma even if they pass away from a stroke or heart attack they go into the Lymphoma pool. Also this type of Lymphoma has a median age at diagnosis of mid 6Th decade or later when there may already be existing health problems thereby making treatment more difficult. Then you have the folks who don't want any treatment, have substandard treatment, do not complete treatment or drop the ball on their treatment, all of those variables and more going into the same pool, that being the number of years they lived after diagnosis. I am not a big fan of statistics. With lymphoma they prefer to speak in terms of progression free survival or PFS which is the amount of time after remission is achieved,until it returns and needs treatment again. That is the number they are working to increase and the one they really care about.

JeannetteAnn
Posts: 6
Joined: Sep 2010

Wow, I am so glad I found this place tonight. I have a feeling I will have many more questions answered within a short time and I will feel somewhat more confident with my dr. This string of answers was like breathing fresh air. Sincerely, Jeannette

Richsterr
Posts: 34
Joined: Aug 2010

Am I interperting what you said is that you can outlive the disease. If you get proper treatment can you keep going until something else happens? I would like to know the answer to that please.

Richard

merrywinner's picture
merrywinner
Posts: 621
Joined: Aug 2009

I hope it wasn't for me!! LOL. Yes one could be treated successfully for a long time and just because we have a Lymphoma diagnosis it does not exclude us from other cancers,heart disease,strokes etc. In other words I have Lymphoma but in today's world with all of the research etc. it is not a given that I will die from it. Certainly there is that chance but not nearly as strong as with other forms of cancer. Please don't think that I am in any way minimizing the seriousness of this disease. I know better. The key is it's treatable and for that I thank my lucky stars. Mary

miss maggie
Posts: 929
Joined: Mar 2010

Hi John, You seem to know your way around on most questions. I was dx with indolent, marginal, stage 1, low grade b cell. Is this automatically considered follicular lymphoma?

Thanks maggie

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

Maggie, No follicular is the the type. You can have other types and still be indolent. It seems follicular is the most common of the indolent ones. John

miss maggie
Posts: 929
Joined: Mar 2010

Hi John, Thanks for your speedy reply. All the times I have seen my oncologist, she has never mentioned follicular. Just the DX I have posted to you. Maggie

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

Maggie,
What they do is take a sample of the cells and put them on a slide and examine it under the microscope. The type of cell they see gives it its name. There are so many configurations of cells,but going by what they see determines the type. Some are indolent and some are aggressive. I am sure you know the indolent type are slow growers and the aggressive are fast and have to be dealt with immediately. Hope this helps. John
There is a heck of a lot I don't know and thats when you will see me on here asking a lot of questions trying to find answers. This board is full of valuble info.

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

I'm like you John...I don't personally know a single person with Follicular NHL. As a matter of fact when I tell people what kind of cancer I have they always say.."never heard of it". I also read the stats on some web site that said about 7-10 years life expectancy. I'm telling you it scared the crap out of me! As soon as I found this group I totally quit web site researching about NHL. I just wish I could have found all of you immediately after being diagnosed. I would have saved myself alot of scary wide awake nights! God bless everyone in this group!! Well...off to bed...port implant in the morning!...Love...Sue

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Good luck with the port implant Sue, remember plenty of ice bags, really helped me..... Vinny

MoppyGene's picture
MoppyGene
Posts: 16
Joined: Jul 2009

After undergoing Retuxan infusion and oral treatment all of 2009 I've concluded statistics may work for some but I don't see how. My cancer blog reads like a mystery novel authored by a robot but when I go back and read my test results and oncology evaluations I am convinced it's up to me to manage my case armed with knowledge and determination. Second opinions??? Nah! Not for me. I'd have no way of knowing which doctor's opinion is most accurate. When I am fatigued, not hungry or sick at heart cancer and I debate the cause....age vs cancer. We battle it out every day. Cancer just won't take 'no' for an answer. My age may accept 'no' for an answer but my brain won't.

I am in remission as of September 9, 2010.

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

That is great news! It gives hope to those of us that are just now starting our treatment. I often wonder if I'm up for this battle, but I guess it's better this cancer reared it's ugly head now, while I'm in good health and in my late 50's, instead of later on in life. I've learned to take it one day at a time. I'll keep positive thoughts for your remission to last for many years to come.
Love...Sue

MoppyGene's picture
MoppyGene
Posts: 16
Joined: Jul 2009

Thanks for the thumbs up and positive thoughts, Sue. Cancer caught me completely by surprise on the sundown side of 50: learning to take one day at a time was very difficult for me to master in my busy life. I am comforted by 'And the light shineth in darkness; and the darkness comprehended it not.
John 1:5"
Best to you and yours.....Gene(va)

711tom
Posts: 44
Joined: Mar 2010

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: 621
Joined: Aug 2009

Wonderful record for you and hopeful news for us all. So glad you shared your story. Thank you. Mary

miss maggie
Posts: 929
Joined: Mar 2010

I am so blessed to have found this discussion board and reading all your messages of hope. The information I have learned is more forthcoming than most websites. I also find it most helpful listening to conferences on the telephone. The last one was on june 15, 2010, and the speaker was Dr. John P. leonard. The text of that conference can be found on the "the Leukemia and Lymphoma Society website. I did ask the doctor about my B Cell indologent NHL. The doctor said this NHL is chronic and can transform into follicular lymphoma.

I have a question also? Richard and others on this discussion board, were you DX with B Cell indolent lymphoma? Can indolent lymphoma transform into mantle cell lymphoma? Or does it usually transform into follicular lymphoma?

I pray for all of us. maggie

yesyes2
Posts: 571
Joined: Jul 2009

Hi Maggie,
LLS website with the pod casts is a wonderful site for the latest information. Another wonderful site for those of use with lymphomas is the Lymphoma Resourse Foundation. I can't say enough good things about this foundation. Information is very up to date and their once a year 3 day conference is well worth attending. This will be my third year going. For those of you in the San Francisco area it will be the end of September and I'd love to see you there. Where else could I meet 6oo other members of our NHL or Hodgkins clan. Sounds like I'm selling something, but I'm not.

I have an aggressive lymphoma, not indolent so I don't know about indolent B cell becoming Folicular, can't help you there. However I do know that indolent lymphomas can transform and become aggressive. I have met 2 people who this has happened to.

My best to all of you.
Leslie

miss maggie
Posts: 929
Joined: Mar 2010

Hi Leslie, My daughter's name is leslie also. Thanks for putting me in touch with the Lymphoma Resourse Foundation. I will thoroughly research this site when I have a bit more time. I really would love to attend the 3 day conference being held in san francisco. But, because of prior committments I cannot. Hopefully others reading this text will be able to attend.

I was DX in sept 2009 when my small bowel perforated. I had a bone marrow biopsy, negative findings, pet scan which showed some activity in bowel area. In dec 2009 had treatment of rituxan once weekly for 4 weeks. On june 2010 had another pet scan, negative. I wll be seeing the oncologist in nov 2010. Wondering, would the doctor wnat me to have another pet scan, if not, should I insist?

Yes, best to you and all. maggie

dog walker
Posts: 1
Joined: Sep 2010

Hi Richard,
Yes read about Robert at
http://www.LymphomaSurvival.com
he is a 22 1/2 year thriver!

miss maggie
Posts: 929
Joined: Mar 2010

Hi John, You seem to know your way around on most questions. I was dx with indolent, marginal, stage 1, low grade b cell. Is this automatically considered follicular lymphoma?

Thanks maggie

Subscribe to Comments for "non hodgkin's indolent lymphoma"