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Going on 23 year survivor of NHL - considered cured

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Just officially joined the long term survivors group. Have been cancer free for 21 years but suffer with loads of late effects and side effects from the drugs and treatments. Go through bouts of new symptoms one after another and ongoing tests and issues that come and go and come and go.

Most days aren't too bad to deal with and others not so much. You all know how it goes, I don't have to tell you.

Looking forward to reading your experiences and sharing some of mine if you want.

Blessings,

Bluerose

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

Your story sounds familiar...but you give me something to reach for....21 YEARS!!!

I'm dancing!!!

Hugs, Kathi

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Dec 9 will be 21 years for me. Bluerose, I echo what you are saying about LT Effects. Hopefully we will all be able to stay on top of these LT effects and chug along, a day at a time.
Cathy
HD 1989-RADS
HD 1994-ABVD
IDC 2008-DMX
recovering from hysterectomy of Nov 30-NO CANCER FOUND!!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Congrats Cathi on your long survivorship and the recent hysterectomy that ended with No Cancer. Fabulous.

Actually I think I am in for a D and C in January as they found some cysts in my uterine lining, just all of a sudden the lining got thick and there was no reason why. I am praying for the reason being the growth of benign cysts that have plumped the lining up and once gone that will be it. Always some new symptom coming up it seems, for years now. One day at a time.

All the best Cathy, keep up the good work.

Blessings,
Bluerose

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Wishing you the best for your upcoming D&C. Keep us posted. In the meantime, positive thoughts being sent your way.
Cathy

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the well wishes on the surgery. Today though I was actually thinking of cancelling the pre op on Thursday, well not cancelling just moving to January. My daughter is coming home for Christmas for the first time in 5 years, last time I will see her as a aingle lady she is getting married next year and I don't want to think about cancer just before her visit. I have mixed vibes about this feedback on Thursday, can't get a handle on if I am scared or feel it's nothing or what. Kind of unusual actually for me. Something is telling me to go anywho but not sure it's a good idea. Have to think on this more.

Anyways I will let you know when I find out results. Positive thoughts sent my way would be good right about now, many back to you too. Thank you.

Blessings,
Bluerose

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

I'm glad you remain cancer free, cathy!!!!!!

You both are true inspirations for me! I'm just past 5 years...and my doctors are saying 'cured' as well on both...rectal stage III, breast stage II...

I was at a family birthday party last night. People I haven't seen in a few years...they asked how I was....I said, beside being part of the 'walking wounded' from long term effects, I am GREAT!!!!! (many of them looked worse that ME, and they have not faced cancer...ROFL!).

Hugs, Kathi

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I like your "walking wounded" analogy!!

Thanks for your thoughts and continued good health to you!
Cathy

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Cancer indeed can be cured today in many instances. You have ever reason to dance and feel hopefull. It was the doctors who used the word 'cured' to me so that says alot. In years gone by that word was even considered an option for a great many. Now it is. We are living in a new age of cancaer treatment and it will only get better from here.

All the best Kathi, hey is that the two step you are doing there? lol. Dance on.

Blessings,
Bluerose

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

One of my fellow semi-colons started it (danced naked outside in her back yard), and I picked it up!!!! LOL!

I am amazed at the changes in cancer treatments...research is finding ways to work with a person's immune system to fight off the cancer...hopefully, the days of long term effects will be over soon (a little late for us...but I always like to think that we were part of the pioneering of this)!!!

Hugs, Kathi

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

That brought a smile to my face, thanks for that.

I too like that 'walking wounded' phrase, it certainly fits as I gimp through my days and weeks. lol

I too am amazed at all the changes since I was first diagnosed. My GP, who has been with me forever and has seen me throw the before and after times of cancer, used to send me for CT's at the drop of a hat just to make sure things were alright with whatever symptom I was displaying at the time and now she won't send me for one after they found out that more rads were coming off the machine than they thought. Geez, I should be glowing in the dark by now with all the CT's I have had in 23 years.

Also a sign of the times is when I tell people my story of the bone marrow transplant I had and include the part about total body radiation and if the person is in the medical field them look kind of scared and say 'oh, they don't do that much anymore'. Sheeesh, I wonder why? Don't tell me, I know.

Anywho I am going to have to gimp off into the sunset, housework is calling my name - yuck. Gimp, gimp, gimp (that's me walking away from the computer, lol).

Later folks
Bluerose

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

Wow 23 years. But the cured part is the best! Congrats!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Marcia,

About 40 years ago my Grandmother was diagnosed with the same kind of cancer I was, non hodgkins lymphoma, and there was little they could do for her. Harsh chemo and rads and she passed fairly soon after diagnosed. Flash forward to 20 and a bit years later and they cured me using new techniques and drugs. Docs are using the word 'cured' for many survivors these days and just think what another 20 years will bring. Hopefully they will obliterate this nasty (bleep).

There is all kinds of reasons for hope nowadays, never give up, if there is no cure now for a cancer one could be right around the corner.

Blessings,
Bluerose

Christmas Girl's picture
Christmas Girl
Posts: 3646
Joined: Apr 2009

Truly inspiring posts here. Yes, we all hope for a true cure - for all types of cancers.

Kind regards, Susan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

all the time for many many types of cancers.

Cures around the corner, much reason to have faith and hope for 100% cure rates in the near future. I like the look of that number.

Thank you for your post Susan.

All the best in 2011.

Blessings,
Bluerose

Sonia32's picture
Sonia32
Posts: 1068
Joined: Mar 2009

but 21 years oh my, may you have many more.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

How many years have you been a survivor? I like the way you headed your post to me 'not a long term survivor YET'. Love the 'yet' part, shows positivity and that is important.

You will be at 21 years survivorship too with that postitive attitude. All the best Sonia.

Blessings,
Bluerose

sea60's picture
sea60
Posts: 2601
Joined: May 2010

You ladies look radiant and beautiful!

I'll be reaching 5 years this February 14th 2011.

Blessings and hugs to you all,

Sylvia

New Flower
Posts: 4018
Joined: Aug 2009

congratulations to all of you.
Being cured for 23, 21, 8, 7, 5!!!! Or in remission, who cares about medical terms , to me as long as you live happy and productive life.
Unfortunately, side effects will be with us
Hugs

Cyndy333
Posts: 2
Joined: Feb 2011

What is the difference between cured and in remission?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Technically I think that 'in remission' is used when they find no active cancer and some use that term if they think that a cure still isn't possible, just long remissions. I have been deemed 'cured' by two oncologists now and it's because there has benn too long a remission and plus I have been in this long remission after the second round of NHL so they are safe in saying it is a cure this long afterwards. There is probably an even more technical reason for the word remission but that is what I was told. I have never used the word remission myself though because I didn't like the insinuation that if you say 'remission' you are saying to your body well it's just a matter of time til it comes back. But that was just my personal optimistic take on the word.

Take care.

Blessings,
Bluerose

ron50's picture
ron50
Posts: 1287
Joined: Nov 2001

Congratulations on being cured and all you others who have been ca free for so long. I too have been lucky ,I am entering year 14 still free of colon ca and also considered cured. Now if I can just survive the long term side effects of the chemo ect. Thats why I so admire you ,surviving survival ain't easy,Ron.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Isn't that the truth Ron. The side effects are the biggest shock to survivors after the initial diagnosis. I think sometimes we all walk around in a shock state at what the long term implications of some of these side effects are. Someone described it on these boards as being 'the walking wounded', that about sums it up.

Congrats on your 14 year cure. Fantastic.

Stupid stupid side effects, lol.

Blessings,
Bluerose

Patchwannabe
Posts: 3
Joined: Jul 2005

I am going on 27 this March, plus 7 and 2 years for my long term related "gifts"-
I noted how many on this chat mentioned dealing with long term effects, but chose to be happy about just being a survivor. This is great but I am curious if anyone needs to or wants to vent about these effects as we are the guinea pig generation of cancer survivors??? So what are some of your hated long term effects? mine are hearing loss, vision loss and having a manmade endocrine system.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Actually that is one of my pet peeves, big one actually and that is pretending that survivors are happy all the time, that's not true or realistic. I mean we encourage positivity but no way are we happy all the time, side effects suck and they get us down - far down sometimes and it's totally important to feel that we can vent that too, it's reasonable to do so.

One correction though, we are not the only guinea pigs. There were whole other generations way before us who had even less of a chance, less understood than we are now and in 20 years to come those interventions will be looked at like guinea pigs for the next 20 years to come. Unless of course a cure if found for all cancers before then and I sure hope that will be the case.

Before my generation my GRandmother had NHL too, same type I did and there was not much they could do for her, that was about 40 years before I was diagnosed. Flash forward to 22 years ago and they were just introducting bone marrow transplants for NHL and started with stem cell transplants as well. When I started treatment 22 years ago there were also no truly effective anti nausea drugs even but by the time my cancer recurred 2 years later there was. I guess any disease out there uses us as guinea pigs in a manner of speaking but that's only because they are still in the process of finding cures and whatever they have that they find passes safety standards they try. We are usually given a choice to accept the treatments or not. Did doctors realize the long term reprocussions of any of our medications - hard to know - not til they have alot of data on long term survivors can they say.

I guess sometimes I think of myself as a lab rat but when I do, on most days I think of myself as a grateful lab rat. lol. But not everyday - some days it all just sucks.

I have a ton of long term effects of treatments but consider when you transplant was done, I know some of the procedures today are not used anymore because of too much collateral damage. Mine include: heart damage from adriamycin they think - severe artythmias that have led to the implantation of a pacemaker, aspects of PTSD from treatments and other situations during and after treatments, anxiety and panic attacks, respiratory damage from pneumonia brought on by treatments years ago,chronic pain in joints and all over really, nerve damage - fibromyalgia, early osteoarthritis from total body radiation, chronic fatigue, chemobrain (cognitive issues and memory issues from rads and some chemo drugs that crossed the blood-brain barrier, extreme tearing, cyclic hair thinning from traumas, dry skin, chronic infections, allergies to ct scan dye from too many cts (then they didn't think the rads from them were bad - I must have had hundreds of cts), dental issues starting up I think are related to treatments, now anaesthesia for any reason is difficult for me because of all the health issues - makes it more dangerous for any procedure that requires general anaesthesia so they are talking about giving me an epidural instead if the surgery will allow that. Trouble with toenails now as well. Am on morphine daily now due to arthritis of the lower back and disc degeneration. Being followed for cysts now developing gynaecologically, following it closely because of all of my past treatments.

Other than that, nothing much, lol.

I think I am forgetting something - chemobrain. lol.

You have every right to be upset and have bad days because of the side effects and yup it gets us down but the alternative isn't good either - not to be around to complain. lol. On this board no one should feel badly about talking about anything that bothers them about treatment. It's healing and we all share most of the issues.

I wish you all the best, one day at a time, sometimes one minute at a time eh?

Blessings,

Bluerose

Hondo's picture
Hondo
Posts: 5782
Joined: Apr 2009

I had no idea you were a 21 year survivor that is fantastic to know, I will make 5 years March 2011 and have a PET & MRI scheduled on March 3rd hoping for one more NED and a cured report.

All the best on your New Year
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

You are not 'hoping for one more NED' after your March tests, you WILL BE NED after your March tests. Okay? lol. Positive thinking kiddo. lol.

Oh ya I am definitely over 2 decades in survivorship, feel every day of that sometimes, um most times, but got to stick around for alot of important things that have happened in my life over that time so can't complain too much - um, most days. lol.

Wishing all the best for you and yours in 2011.

Blessings,

Bluerose

Hondo's picture
Hondo
Posts: 5782
Joined: Apr 2009

I hope and pray that you will stay another two or three decades until the Lord calls you home.

Thanks and happy New Year to you too
Hondo

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