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Any survivors of Non hodgkin's lymphoma slow growing stage 4?

Richsterr
Posts: 36
Joined: Aug 2010

Anybody here survived non hodgkin's lymphoma stage 4 and for how long can you live with it?
Please help

Richard

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

There are several people who post I believe with stage 4. I am at stage 3 and very glad to have NHL since staging is not really important with Lymphoma at least according to my onc.

When do you see your onc next?

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Yep, I fit the bill. I'm stage 4, Indolent, B cell Follicular HNL. Mine was just discovered by accident on a CT scan last August '09 but I think the abdominal tumors have probably been there for 4 or 5 years - they don't really know. As for how long, I can't find an answer either. I've asked at Moffitt Cancer Center in Tampa as well as my own Oncologist. I've read 7 to 10 years. The Cancer Center as well as my Dr. both said, "New Immunotherapy's are on the horizon each year - you could be killed in an auto accident or hit by a car while walking sooner than you'll die from cancer." When I finish my 6th and final Chemo tomorrow (CVP-R), I will stay on Rituxon for 2 years, having an infusion every 3 months for that long. His hope is it will extend my Remission from 2 to 5 years. Then he says, something new till be in clinical trials or on the market to try and I hope he's right! I'm not sure there is an answer at this time to your question. Keep the faith and let's hope we're here for a long time - Fran

Richsterr
Posts: 36
Joined: Aug 2010

Fran
I live in Tallahassee and have stage four non hodgkin's lymphoma. Slow growing.
It seems that I cant get a definite answer to any question I ask. I too am on my seventh chemo starting next week. Some people say you can last for twenty years or more some say only five or ten. Some say you will not die of the cancer but something else. Boy I am lost in the confusion. Can you give me some insight? get me out of this forest if you can

Thanks
Richard

Richsterr
Posts: 36
Joined: Aug 2010

Fran
I live in Tallahassee and have stage four non hodgkin's lymphoma. Slow growing.
It seems that I cant get a definite answer to any question I ask. I too am on my seventh chemo starting next week. Some people say you can last for twenty years or more some say only five or ten. Some say you will not die of the cancer but something else. Boy I am lost in the confusion. Can you give me some insight? get me out of this forest if you can

Thanks
Richard

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

Richster, have you asked your onc about 20 year survivors? I see you are closing in on your treatments. I don't think you are ever going to get straight answers as there are no guarantees on survival. I can understand how frustrating that gets. I did ask my radiation oncologist what my chances of relapse were and he just told me 30%. Course this was still when I was stage 1.

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi again - Fran from Space Coast, FL. I have talked with one survivor of 18 years who goes to my Oncologist but the difference is she's in the Aggresive form, not Indolent as you and I are. My understanding is Aggresive treatment starts immediately and they do have a better chance of living longer years than Indolent, which often does a "watchful waiting" treatment as I did for 9 months. They were waiting for my largest abdominal tumor to grow to 10 cm. (it got to 12 before we saw it on a CT scan and I began R-CVP within two weeks as soon as my Port was put in). The theory was not to start chemo too soon because my own cells were fighting on their own - chemo destroys your good as well as bad cells (as you probably know) and that's why they were holding off. Wondering if you were told, Richard, that you'd have 7 or 8 treatments when you started? I was told 6 until Tuesday of this week when then my Dr. said he wanted to see the PET scan which will be done Oct. 1. If the remission hasn't occured he wants, he will add two more. It is very frustrating not to get the answers you want, but I just think they can't tell us because they don't know.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Richard,
To be honest with you, I am just as confused and probably just as concernrd as you are. There are a lot of people on here that are diagnosed with the same thing you have and getting the same treatments as you. I am one of them. I could name several others as well. I don't feel the Drs. really know how long survival will be because not to many years ago there was no maintence drugs available like there are today. They do know those drugs keep us in remission for a longer period of time and right now the ones that use those drugs are doing just that. That is where those stats come in that they use all over the web. I think those numbers go up as time goes by. There is acertain time lapse before they print the results. That is why those stats are always behind with what is actually going on. In the meantime they are trying different combos for better results. It seems they make a little more progress all the time. It takes a while for us to hear about it because they are constantly reviewing the stats themselves. All this info is combined with what we are taking,what we have , what are our stage and grades,how many treatments,etc.,etc. It is then compiled and sent to a central info. bureau of scientific study where this stuff is compared over and over with other results. This is part of the process they use to see how effective the drugs they are using today are working. This is again an average figure they will come up with,not an individual figure of how it will work on each person. Thats why they can't predict how well it will work on you. We are all individual and the end results will be different for each and every one of us. As time goes on they will come up with different treatment options that should be more effective on us thru these trials they use. John

gyrene72
Posts: 7
Joined: Oct 2010

Your comment triggered this reply.Hope it helps.
I was diagnosed with Waldenstroms Macrogloblumenia a year and a half ago. Turns out this is a non curable, but treatable cancer that is caused by a singular cell being turned out of my spine that was, to put it mildly, screwed up. It lost its ability to die, and gained the ability to reproduce itself, incessantly! Supposed to be about 350 of these suckers in your bloodstream at any one time. I had 7,800 when it was discovered. We've been fighting this for a year and a half, and have gotten the problem cells, called IGMs down to 2,900. As I mentioned, this is not curable, and when, and if we get the cells back down to an acceptable range, then there will start a "maintenance" dosage of Rituxan for the rest of my life, however long that will be. I've talked to others on different sites who have been on "maintenance" dosages for better than 10 years, and are doing fine. Hopefully, by the time you, and I reach 10 years, if necessary, cures for all these cancers will be found.
God go with you daily.
Tom

ktjc129
Posts: 6
Joined: Nov 2010

I just joined this month and am fairly new at communicating online, and didn't really know this website existed, but it's nice (well you know) to find someone else with the same diagnosis. I also found a stomach tumor from a CT scan and everything went from there, the rituxan cocktail and a two year maintenance plan, now they found a mass in my back on a routine MRI scan. I see the doctor in two weeks. Wish me luck

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

Hi Y'All,

Thought that I would add my 2-cents. I am only very early (2nd infusion) in my treatment of NHL. I was told that it is diffuse, large b-cell, which is an aggressive form. So I'm on R-CHOP. However, when I read the detailed pathology from MD Anderson of the lump they took from my neck, the pathology report says that they found 70% b-cell AND 30% indolent, for a total of 100% involvement.

Sooooooooo, this Tuesday, when we go back to Houston for the results of my interim testing that was done last Friday, I will be asking my doc there about the "other 30%". The first time that we met with him, we did not have the pathology report from Anderson. The pathology report from my home hospital only referred to the b-cell, as far as I know.

It sounds like many of you who have indolent are on a different, chemo R-CVP. I don't know what the difference is, or even if it matters that I have 2 forms. I suspect that the treatment will be the same because they are treating the more aggressive one anyway.

Thanks for your questions and posts. I will be watching.
All my best for your speedy (speedy?? after 6-8 cycles?), well, relatively speedy remission.
Comfort and Contentment to All,
Tom

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

Tom,

I have a friend of mine who also had the aggressive Diffuse Large B Cell. She did CHOP+R
6 treatments then radiation. So far she's been 3 years cancer free. The only thing different in treatment is the Adriamycin. Aggressive lymphomas can be curable.

As for having more than one type, I can relate to that. I started off with Indolent Lymphoplasmacytic Lymphoma and MALT, which is treated like Follicular. Both are kind of rare. They also mentioned in the path report something about marginal something (I can't remember) This last time it's changed to Follicular. I have seen 4 different names on my pathology reports.

My friends doc did not do the maintenance rituxan with her because they hadn't had enough research to indicate it helped with the aggressive forms, but I'd be happy to ask her why.

How are you feeling? You seem to be doing really well with your treatments and I'm glad to hear that. Whatever happened with the wart? Did it go away?

Your friend,

Beth

Sparkyz
Posts: 17
Joined: Sep 2010

HI, I am 39 years old stage 4 Grade 1-2 foll B-Cell and just finished treatment Treanda + Rituxan and now on maintenance and am feeling pretty good physically. Only a little in the abdomen left after last scan. From what I hear even when it comes back chronically you can live a very long time. it just may be annoying once and a while with treatment.

UKKaz41
Posts: 3
Joined: Oct 2010

Hi there Richsterr

Just wanted to add my comments to your question. I was diagnosed in 2003 with NHL indolent / slow growing follicular stage 3 which then became stage 4. My body managed fine without treatment for 3 years and I had chemo in 2006. It was a fairly 'mild' form of chemo as I had unrelated kidney problems so we had to be careful of the regime. As expected this didnt get all of it but enough to buy me time for kidney surgery and recovery. I then had FC-R chemo in 2008 very successfully and went into an unexpected full remission. It had been stage 4 in the bone marrow and my cons. was shocked to find it had totally gone.

Its taken 2 years but Im pretty well recovered from the treatment now - just a few medical issues we're working on that certainly aren't serious. I met a 20 year survivor in londons Royal Marsden around 2004 and she has been my inspiration all through. I also met a 25 year survivor in a support group, a 10 year survivor as a phone buddy and an 18 year survivor who has his own website. An amazing guy called Robert G Miller from the US.

In my humble opinion this is a very individual thing but can see no reason why its not possible to have 20+ survivors of this form of NHL as I have met and spoken to some! I plan to be one myself and try to concentrate on living life and not living NHL - if you know what I mean!

Hope this helps. Wishing you excellent health and success with your treatment.
Karen

frdad1
Posts: 4
Joined: Jan 2010

Richard, I was diagnosed with stage 4 NHL back in Oct. of 1988. The doctors said if it wasn't slow growing, I would not have made it. They put me on a regime of cytoxin pills and shots of interferon and I was in remission by early 1990. Stayed in remission until I felt a lump in my groin in Oct. of 2009. Diagnosed with stage 3 NHL. So I had an extra 19 years.This time though no pills or shots. I had to be hooked up to a chemo drip 4 days per week. I'm in remission by June 2010. Suffering though from stomach problems and daily pain in my right forearm and hand. How many years I'll get this time is a crap shoot says the doctor. Might come back in a year or maybe I'll be one of the lucky ones and get another 19 years. Be positive, laugh, it helps. Best of luck

usmcmama1
Posts: 2
Joined: May 2013

Husband , Bob, is 8 1/2 year survivor.  Was stage 4 at diagnosis.  6 mos. of chemo with follow up of maintenance Rituxan.  Has a lot of other problems now, tho.  He will have CT"s Fri of abdomen, pelvis, neck and chest.  If all is clear we don't have to go back to onco for a whole year.  His specific Non-H lymphoma is lymphoplasmacytic lymphoma.  How are you and at what stage of the game?  Wish we had had this for support back then. 

NANCYL1
Posts: 263
Joined: Jun 2012

Richard:

 

I was diagnosed with stage 4, non-Hodgkins Lymphoma, B Cell, in May of 2012.   Had routine blood test and checkup and my Internist sent me right away to a cancer center nearby, when she discovered that my white blood cells were high.  She sent me to an Oncologist.

I am getting infusions of Rituxin; 2 sets last year and 2 sets this year.  My red blood cells, white blood cells, and platelets are now normal.    At the end of this year a determination will be made of where we go from here.  If all goes well, I will probably have regular checkups every six months.

 

Nancy

DadysGirl
Posts: 322
Joined: Aug 2011

Hi, do you recall how high it was?

NANCYL1
Posts: 263
Joined: Jun 2012

Hi DadysGirl:

I don't know how high the white cells were.  

Nancy

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