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Non Hodgkins Lymphoma Success

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

I am in a doctor's lobby waiting for my appointment so can't go into all the details of my history with non hodgkins lymphoma but the main point is one of hope. I am a 20 year cancer survivor having had one recurrance which led to a bone marrow transplant 2 years later that saved my life.

Today is a new day in cancer treatments and even though my treatments were so long ago here I am to tell you that cancer can be cured, the doctors use the word and I will take that. Twenty five years before I was diagnosed my Grandmother had the same kind of lymphoma and there was nothing they could do, no bone marrow treatments were in sight then and no chemo drugs like the ones we have today and radiation differences that today serve us much better as patients than in years gone by. She had no chance and died of her illness. Flash forward to 20 years ago and look at all that changed. How much more will change in the next 20 years?

Have faith and make the tough decisions and with support and faith and good doctors who can relate to you and you to them, you can do it too.

Blessings, Bluerose

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

Just think, in a few years to come you will be blogging about your 20th year survivorship too !!!!

Take care.

Blessings,

Bluerose

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

Janelle,
I checked your blog but it comes up blank onmy end. John(FNHL-1-4A-5/10) REMISSION-10-15-2010

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi Janella i was diagnosed with the same in April of this year. Rituxan was used i had severe side effects and steroids etc was used i also suffer joint and bone pain and tired but mine is Follicular b cell lymphoma stage 4. I had been feeling sick through the years tired all the time and since it doesn't show up in the blood my doc kept telling me it is this and that and i had my gall bladder removed in april and my doctor didn't want to do a abdominal scan but my surgeon had one done and that is when they found it and took a biopsy of my lymph nodes. What a shocker but i knew why i was experiencing all of these symptoms and they were not in my head. The waiting and watching was not for me. So Rituxan each week since the end of April and in August was each month and now 8 wks it has scaled back alot but still in stage 4 I am told i will never get out of it. But i told my doc never say never lol. My faith is strong my doc explained to me that yes it is remission but not cured just scaled back and it can stay this way for yrs. And it will keep coming back and this will be a never ending battle and eventually i will have to do a more aggressive treatment full blown Chemo. I also researched and talked to a well known researcher about cell therapy and was told at this time it is not recommended for me and it is highly risky and the chances of me dying was high. So i will wait and down the road when it gets really bad i plan on doing it anyway when the Rituxan doesn't work which i am also told that will happen but i plan on living a long time i have changed the way i am eating i juice and stay away from processed food. And it is a big life changer for me. I hope with everything i am doing eating right etc my faith i have 20yrs or more. Wishing you all the best i have been writing about my experience and it helps me to journal. Take care
Patricia if you would ever like to talk you can reach me at first_ladydiamond@yahoo

Bodoni
Posts: 8
Joined: Feb 2011

Amen to that. I had four sessions of R-CHOP at 81 and I swear I have never felt better, now a few months later.

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

There is only one thing better than a success story and that is another success story. John

rh7rh7's picture
rh7rh7
Posts: 1
Joined: May 2010

This is my first time on this site. I was reading your posts and am so thankful for the hope they bring people. I was diagnosed with NHL in 1980 at age 18 yrs old. I had 1.5 yrs of chemo and some radiation, CHOP included. They didn't do the bone marrow transplants back then. I have been in remission since or as they say after 10 yrs cured. I have personally felt alone until reading some of these posts, not many people know of the long term effects of chemo including my doctor. Do you have any ideas on how to get information about this?
Blessings to you, rh7rh7

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

First let me congratulate you on your cure. Wonderful to hear that. I am sure you and I can relate on many levels, some of which unfortunately are some side effects of the treatments although of course I had total body radiation as well in the transplant and CHOP was before that.

On the internet there is a site called ACOR which is the American Cancer Online Resource group and they have a ton of information on every kind of cancer plus a long list of resources for long term and late effects of treatments. They have a long term survivor group there as well.

You can also google Late Effects in Long Term Cancer Survivors and I guess you would be considered a survivor of childhood cancers would you, or adult? Reason I ask is that you have to look at the which group they are talking about in late effects because late effects of those diagnosed as children and treated when they were kids is different from treatments as adults. To note, only go to reputable sites like Mayo Clinic or browse this site or ACOR as I said. Other cancer hospitals can be helpful too like the one in Canada in Toronto called Princess Margaret. I live in Canada and was partially treated there. They have a great site called Caring Voices and if you go there and look around you will see that they have actual online general meetings for online survivors/caregivers on a variety of topics. Google Caring Voices and you will get to the site and have a look at the meetings for the month. Anyone can attend and the leaders of the meetings are nurses who work in cancer care and there is an oncologist who comes in about once a month to chat too. The meetings deal with radiation treatments, chemo, side effects, emotional issues. Cancer is cancer no matter where in the world you live so check that out too.

In the U.S., not sure where you live there are what they call Late Effects Clinics that deal specifically with long term effects of treatments, most are for those who were diagnosed and treated as childrern. If you want a late effects clinic that deals with treatment on adult patients you can get in touch with The Dana Farber Institute in Boston and in particular the Perini Clinic that deals with late effects for those who were treated as adults. They will no doubt put you in touch with a nurse practioner who will answer some of your questions.

Back when we were diagnosed and treated we weren't validated when we complained about after pain and the like but it's different today because time is telling doctors that hey we are still around and we have issues too. This site is very helpful as well in supporting and helping to validate your concerns and issues, it's a great comfort to many. Wish I had this site when I was in treatment. Also check out the chatroom on this site, there aren't too many instant chat sites on cancer that are clean and supportive. Admin takes care of any issues that may arise in a speedy fashion, it's quite good really.

Anywho I wish you all the best. See you in chat at some point I hope.

Blessings,

Bluerose

daisies
Posts: 2
Joined: Sep 2011

hi! my boyfriend was diagnosed with NHL in december 2009, at the age of 37. he completed R-CHOP treatments and is in remission as of july 2010. i pray everyday it stays that way.

he actually had a followup catscan today. .. we're waiting on results.
i try hard to not allow the fear of it all take over our lives, but weeks leading up to tests, it does creep in.

bless you all for everything you've been through. thank you for posting your stories!!

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

Welcome to the site and I hope you find alot of usefull information here and people who can help you through the process. There will be a fair amount of waiting for your boyfriend and you, what with test results and specialists and all kinds of health based appointments but with your support and good care I pray he will get through it all and soon be able to put this behind him.

Cancer can be cured, I am a living example of that and so are alot of others on this site and off. All the best.

Bluerose

JacquieK's picture
JacquieK
Posts: 10
Joined: Jul 2011

Thank you for being an inspiration to us all. I'm almost 4 months in remission and feeling stronger most every day.

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

I have a feeling that with your strength and positivity it won't be long before you will be receiving the same kind of 'Thank You' from a new cancer patient for your inspiration to them.

All the best.

Blessings,

Bluerose

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1199
Joined: May 2012

Bluerose,

Your story is hope-inspiring. You may know that most of the folks here have been on Rituxan themselves, since it is part of most combination therapies (r-chop, r-ice, r-abvd, Stanford V, etc.)

SCT is a wonderful thing, but often brutal. Whatever side-effects combination therapies have, SCT has also, but perhaps more intensified (combination therapy, the use of numerous chemo drugs at once, is frequently a core part of STC anyway).

Of course, if I were in a situation in which SCT were the only remaining option for me, I would go for it in a micro-second ! One of the great advances in the last 30 years is the improvement in radiation application. Most doses today are much lower than years ago, and more precisely aimed. Plus, new radiation delivery, like "seeding," is usually very effective. My uncle had stage 4 throat cancer in the 70s, and when my mom would drive him home from radiation, the car smelled from where he was burning. After a hideous surgery, in which he was cut from his neck to his pelvis, he died. Those sorts of stories are seldom heard any longer.

Great progress is being made on many fronts, but we must remember that mortality rates for some lymphomas and other cancers are saddening, and that many here at our Board discussion have not been as fortunate as us. Among the people I got to know during my six months at my infusion center, none are still living three years later, although none of them were lymphoma patients. Most were brest or colo-rectal, with one leukemia.

Constant prayer is the best advancement we can make.

Bless you !

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