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Stable Disease?

simon123
Posts: 2
Joined: Apr 2016

It has been over a year since i have been diagnosed with Hodgkins Lymphoma (at age 17), and everything went really well. I've had 2xOepa and 2xCopdac cycles and no radiation. While i believed i was healthy until today, i recieved the letter with the results of the latest examination today and decided to read it precisely. One line reads as (translated to english): "Enlarged paraclavicular lymph nodes -> stable disease." What does this mean? Of course i will ask the doctor next time i see him, but if anyone has experienced the same i'd be happy to have some idea of what it means to me.

Max Former Hodg...
Posts: 3693
Joined: May 2012

 

Welcome to this Board, Simon.

As best I can recall, you are a first here: a juvenile patient when first treated, since patients under 18 at treatment are under differnt protocols. This is reflected in your drugs: combinations used for juveniles. They taken together are approximately the same as what adults call "CHOP."   The dosing is a little different to avoid possible sterility in young patients.

It is not possible to know very much about your case unless you share the "strain" (type) of lymphoma you had, which would be stated on your biopsy report.

I am GUESSING, but it sounds like you had an indolent (slow-moving) form of lymphoma, which is now dormant, or in remission (that is, 'not growing'), but with some remaining enlarged nodes.  USUALLY this will remain dormant for long periods, or possibly forever. If it ever does start growing, there are treatments available to then get it dormant again.

Since your doctor did not himself bring this to your attention, I suspect that he or she is not currently concerned about it, and it most likely is not new information to them.

DO ASK the doctor what you asked us, they will be glad to explain the situation to you in detail.

What members at this board provide is layman's information that we have gained through experience. None of us is a doctor, and we do not pretend to give accredited medical advice, just what we have learned personally, either in our own treatments, reading, or in the treatments of a relative.

I'm glad you are aboard, and hope you ask your doctors these questions, and continue to share your thoughts and concerns here.

max

An article regarding your drugs.  It basically concludes that occasional changing of one drug for another in a governement study seemed to work quite well. 

http://www.ncbi.nlm.nih.gov/pubmed/20625128

simon123
Posts: 2
Joined: Apr 2016

Thanks for your friendly answer. The subtype of Hodgkin i had was still unspecified after the biopsy, but it was hodgkin (not non-Hodgkin). I will ask my doctor at my next checkup and will report back for sure, as that might be useful for people coming here in the future. Until then, i think i'll be happy with the information (assumption?) you provided, as it is pretty much the same as what ii read on various websites. Thanks a lot, and have a nice day!

- Simon

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

Welcome Simon. I was diagnosed with non-hodgkins follicular lymphoma about 1 1/2 years ago. The Oncologist I went to for a second opinion encouraged me to learn as much as I can. He said is is treatable, not curable, so I need to learn how to live with it. 

I am passing this to you. Don't be afraid to have a notebook with you when you see your Dr. and take notes on what he is telling you. Espcially the technical or medical terms. Then use the internet to get more information on those terms. You are going to read some scary stuff but don't let it stop you. When I do such research I try to avoid any articles more than 2 years old. On the other hand, sometimes the older articles do have personal experiences that are useful. 

Good luck.

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