Non Hodgkin lymphoma

[Lau1947]

I have had non Hodgkin for the past 28 years it returns every 7 years operations 5 i am now on maintenance has anyone else had the same

[Hella]

I've only been diagnosed for 9 years and had one lot of treatment 6 years ago followed by 2 years of maintenance. I do know someone who was diagnosed 20 years ago. Your post gives me hope that I too can live with this disease for a long time and I wish you well.

[wmay13241]

Please tell us your type of non-Hodgkin lymphoma.

[Josie2rulrs]

It is wonderful that there is so much treatment. good luck on your continued health!

[janispeacock]

I was diagnosed two years ago and had 4 weeks of Rituxan. I have had two scans since the treatment and the last scan showed only slight growth and on watch now for 6 more months. Mine is follicular and I was never given a stage but told it was slow growing and all over. My doctor said that all the pain I have is not from the cancer but from Relapsing Polychondritis which was diagnosed a year before the cancer. I take MTX and Plaquenil for the RP.

I have a friend that has the same type (follicular) but he was in great pain and had large tumor removed. He was also given Rituxan and went 5 years before he had to start back on treatment that was stronger. He is no longer taking treatments, is in remission and feels great.

I am blessed even with all the above. The 4 weeks I was on the Rituxan infusions was great. The oncologist said it was because of the steroids that are given with the infusions. They gave me a burst of energy. Also there may be new treatments in the future.

While I do not have a long history and not help with your questions, it may interest some of the other readers.

[Esther66]

28 years is a long time! Have you ever had chemotherapy for it?

[Teddy811]

I have had NHL for 35 years. Was originally diagnosed in 1983. I had opted out of treatment at the time and changed my diet and lifestyle. Did not discuss or bring it up with any medical personnel until this past April 2017 when I was again diagnosed and put on 4 weeks of Rituxan. So far so good.... I truly believe that what kept my NHL in check for those 34 years was diet, exercise and meditation. It is certainly good to use these alternatives with treatment. Sending you all good wishes

[Josie2rulrs in reply to Teddy811]

what was your stage and grade when first diagnosed?

[Teddy811 in reply to Josie2rulrs]

I apologise for the delayed response, I have not been on here for a while. When I was diagnosed the first time, I walked out before they could stage me. After hearing that they could give me 10 years with treatment I thought there must be something else. My children were 3 mos, 18 mos and 3 years old, it was inconceivable to me. Now the protocol of "wait and watch" is what they would have prescribed, so maybe I was Stage 1? My quality of life would have been quite different had I started chemo 35 years ago. There is a website put together by another long term survivor that supports this approach as well. lymphomasurvival.com He is a professor who has put this together for everyone. I thought all of these years that I was the only one who had used this approach successfully, it is heartening to know that others have and can as well.

[Josie2rulrs]

It is wonderful that you have been winning this battle. What was your stage and grade when first diagnosed?

[frannylmn in reply to Josie2rulrs]

Did you ever learn what stage and grade of FL teddt811 had?

[Josie2rulrs]

?

[Teddy811 in reply to Josie2rulrs]

When I was diagnosed last May it was Stage III. Recent PET scans have shown no growth a year later.

[1Anj1]

That’s amazing to hear and I sincerely wish you continued health.

But don’t think for one second you guys are the norm.

You are the exception!!!