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I'm Curious

fullyloved
Posts: 38
Joined: Oct 2012

I had/have large B cell NHL, found when it was a large mass in my lung. I had 6 treatments of R-CHOP last fall. Now, I am simply stable. The last PET scan 4 months ago still showed some activity, but no growth. The doctor has never used the word remission, and every time I walk into his office and report that I am feeling GREAT w/ more energy than I've had in years, he acts puzzled. I think he is expecting full blown lymphoma to take off again. And it hasn't. I'm just curious if anyone else with large B cell NHL, an aggressive lymphoma, experienced this. I realize that with the indolent lymphomas, a simply stable condition is common. But I didn't think that was possible with the aggressive types. Thoughts, anyone?

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Fullyloved,

I don't have the same type as yours but I think its great that you feel really Well and that your cancer is stable! You keep doing what your doing and live life, don't let this stop you! Of course listen to your body and take it easy if you start feeling tired. Take care and sending you lots of positive energy!

Sincerely, 

Liz

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi,

 I was diagnosed with indolent...Follicular NHL and for 2 years 8 months was told I was stable. I had a pesky tumor that didn't shrink as fast as the others, so each time after a scan my Onc would consider my condition stable instead of saying I was in remission. FINALLY, after 2 years of Rituxan maint(every other month) my last scan showed the pesky tumor back down to acceptable size, so my doctor said I was now in remission. I was ok with the term stable, but I got to admit, I REALLY liked hearing the word remission. Smile It sounds to me that because there still shows activity, your Onc is holding out for "No" activity along with "No" growth before saying you are in remission. Since you are feeling great and doing well, I wouldn't worry which term your Onc is using. If this continues to bother you maybe a second opinion would be in order. I hope you can get this settled soon and move on to living life to the fullest! Best wishes...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 62)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Fully,

One of my best friends has had prostate cancer for 13 years. He has been Stage 4 for two years, and his PSA is currently around 300 ! ("Normal" PSA is between 0 and 3 ) He is 72 years old, and "feels great."

I am 57, have been in full remission from HL, stage 3, for around 4 years, and feel like I am about to fall over dead. I have had no signs of cancer, but was anemic for several months late last year.  Therefore, my personal conclusion is to not read too much into the way I feel. 

Oncologists usually have a gerat "poker face."  There is no telling what he is actually thinking, but I would not let his reactions cause you to conclude that he believes you are going to get worse.  I am fairly "direct," and I would ask him point blank what he thought your short- and long-term prognosis was.  Often, they will give an honest assessment.   Also, one of the best indicators I have found is how frequently they TEST you.   If your scans are ordered more often, or if he is having your blood drawn more often, those are more objective reasons to believe that he is perhaps concerned about something.

Best of luck to you,

max

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