My experience with NHL: Hello Everyone... - Non Hodgkin's Lym...

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My experience with NHL

R615-r1122_ profile image
13 Replies

Hello Everyone , my name is Rose

And I have NHL , and have been in remission since July 2016 .

I am followed with Rituxan every three months for prevention .

I am seventy five years old and was diagnosed in 2012 with Follicular,non-Hodgkin, Lymphoma,

grade three.

I took Rituxan x one day & Bendamustinr x two days monthly . Also Neutropenia on Neulasta.

I did every thing after chemo that I did before ,

I walked four miles every day and worked .thank God and my oncologist !!

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R615-r1122_ profile image
R615-r1122_
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13 Replies
Shar0n profile image
Shar0nVolunteer

Well done, Rose. The walking is great for getting the circulation going and oxyqen into your lungs. Everything that we can do for ourselves helps keep us well for longer. I am 61 with FL as well and walk and swim daily.

R615-r1122_ profile image
R615-r1122_ in reply to Shar0n

Yes, I strongly believe exercise , water and diet keeps me in great shape.

I have PET scan the 19th and believing I am still cancer free .

I am in my third month after return of colon cancer.. Surgery was resection and Lymph nodes removed . No more cancer !!

Thank you for your reply , and stay well ..

Josie2rulrs profile image
Josie2rulrs in reply to Shar0n

Sharon what is your story...when were your first diagnosed, what stage etc?

Shar0n profile image
Shar0nVolunteer in reply to Josie2rulrs

Josie2rulrs, I discovered node in my neck in April 2014;GP not concerned; went to my dentist to check whether dental infection was causing it, which it wasn't; he referred me to a maxillofacial surgeon who removed it and was diagnosed Sept 2014. Referred on to oncologist who sent me for a PET Scan and bone marrow sample. The bone marrow result was unclear so had to be redone a fortnight later - thank God came back ok. Was offered radiotherapy for node but refused and went on w&w. Have since developed another node also neck but it has not progressed to date. I attend oncologist every few months for blood tests and examination. So far so good - that's it in brief.

Josie2rulrs profile image
Josie2rulrs in reply to Shar0n

similar to me...except I had one node removed.

no treatment just W&W, since July 2015..

scan and bone marrow was clear...I m stage 1 grade 1...

feel grateful at this point for such a manageable disease...hopefully it will stay this way.

R-16728 profile image
R-16728

Hi Rose, I love the part "thank God and my oncologist". I'm sure we're not alone with this thought. I credit my oncologist for going on two years of near normal life because he found me a program for zydelig. God gets credit for putting it all together, including the scientists who created the stuff.

Dave

Robin-Newman profile image
Robin-Newman

Congratulations to you! My treatment was in 2010..I am just starting to come alive again. Moving on. I am so happy you did so well!

Judyhoneycomb profile image
Judyhoneycomb

Best wishes and healing thoughts.

Sandy_Mouse profile image
Sandy_Mouse

Rose, I'd like to talk with you personally. It seems I have the same situation. Have not had chemo yet...just bone marrow biopsy in December , 2016. Waiting for Feb. 2017 visit at Cancer Centre for results and more blood work. I can give you my e-mail if you answer and wish to discuss, Thanks, Sandy

R615-r1122_ profile image
R615-r1122_ in reply to Sandy_Mouse

Hello Sandy_mouse,

I will be happy to speak with you .

We are all fighting the same disease.

I will go Thursday for consult after CAT Scan , still believing I am in remission .

Sandy_Mouse profile image
Sandy_Mouse in reply to R615-r1122_

Thank you....contact me and I'll call you...We have an unlimited calling plan with Rogers! I hope you are in remission.....

PAgrandmom profile image
PAgrandmom

You were lucky Rose. I began losing my energy at 74 in 2015 with NHL. I went through 2 1/2 years of Leukeran then Rituxin with no results. Imbruvica had now taken all of my blood counts to normal. I am not considering this to be remission - I consider it as managed. As I understand it the NHL will always be there so the continued follow-ups are ongoing. I am curious to see what dosage if any of the Imbruvica now that the lymph nodes are of normal size. js in Pa.

BLP1211 profile image
BLP1211

Great. I have stage 4 NHL, follicular, B cell. No medical treatment yet.

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