To all who have unknown primaries:

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11/7/2010 2:19pm
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Replies: 6

I was just browsing some publications my Onc had done and come across an older one that might be of interest to some of you.  The abstract is scientific but from what I can gather, it says you've got something extra going for you and it should be studied!  A little good news anyway.

http://www.ncbi.nlm.nih.gov/pubmed/18235114

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

Thanks for the article, I sent it on for my husband to read. The "Unknown Primary" or the "Occult Primary" is certainly a mystery. My husband's doctor believes once his tumor was taken other cancer cells "could" have set up house keeping elsewhere.

The belief is my husband's immune system destroyed the primary before anyone noticed... Who knows...

So. Now we are re-learning how to eat better, how to leave processed foods behind us. Attention to food labels is a new requirement before buying... Grocery buying has taken on a new life of it's own.

Thanks again for passing on new...
I know I want to learn as much as I can!

lovingwife to Bob, stage 3c

I am a tentatively-diagnosed unknown primary patient (probably Stage N1b or N2b) with background in pharmaceuticals and healthcare.  When you read the entire article you cited, you see what I consider to be even better news:

Two-thirds of MUP patients with 1-3 tumor nodes survived 5 years.  

It seems as if every 1 node patient who survived five years survived 10.

It also seems as if 9 out of 10 2-3 node patients who survived five years survived ten.

To loving wife of Bob -- it also says in that article that tumors in patients with unknown primary and known primary sites grow at the same rate, but that the unknown primary patients have far higher levels on antibodies in their systems.  This would support the idea that your husband's immune system is an ally in this fight.

Look, if someone had told me five days ago (before I first learned my needle biopsy results) that a two-third shot at long-term survival was a good thing, I would have said s/he was crazy.  But from where I (and many of us) sit right now, it sounds pretty promising.  Also, keep in mind that those numbers were developed before the new therapies like RG7204 and ipilimumab or their successors were available.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill
It ain't over 'til it's over. Yogi Berra
My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

I am a tentatively-diagnosed unknown primary patient (probably Stage N1b or N2b) with background in pharmaceuticals and healthcare.  When you read the entire article you cited, you see what I consider to be even better news:

Two-thirds of MUP patients with 1-3 tumor nodes survived 5 years.  

It seems as if every 1 node patient who survived five years survived 10.

It also seems as if 9 out of 10 2-3 node patients who survived five years survived ten.

To loving wife of Bob -- it also says in that article that tumors in patients with unknown primary and known primary sites grow at the same rate, but that the unknown primary patients have far higher levels on antibodies in their systems.  This would support the idea that your husband's immune system is an ally in this fight.

Look, if someone had told me five days ago (before I first learned my needle biopsy results) that a two-third shot at long-term survival was a good thing, I would have said s/he was crazy.  But from where I (and many of us) sit right now, it sounds pretty promising.  Also, keep in mind that those numbers were developed before the new therapies like RG7204 and ipilimumab or their successors were available.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill
It ain't over 'til it's over. Yogi Berra
My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

I am a tentatively-diagnosed unknown primary patient (probably Stage N1b or N2b) with background in pharmaceuticals and healthcare.  When you read the entire article you cited, you see what I consider to be even better news:

Two-thirds of MUP patients with 1-3 tumor nodes survived 5 years.  

It seems as if every 1 node patient who survived five years survived 10.

It also seems as if 9 out of 10 2-3 node patients who survived five years survived ten.

To loving wife of Bob -- it also says in that article that tumors in patients with unknown primary and known primary sites grow at the same rate, but that the unknown primary patients have far higher levels on antibodies in their systems.  This would support the idea that your husband's immune system is an ally in this fight.

Look, if someone had told me five days ago (before I first learned my needle biopsy results) that a two-third shot at long-term survival was a good thing, I would have said s/he was crazy.  But from where I (and many of us) sit right now, it sounds pretty promising.  Also, keep in mind that those numbers were developed before the new therapies like RG7204 and ipilimumab or their successors were available.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill
It ain't over 'til it's over. Yogi Berra
My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

I also have an unknown primary. My doc. said the mole regressed or disappeared (was attacked) and some cells went inside and found their way to the lymph nodes OR the MM cells were already in the body and gravitated to the lymph nodes. This is an encouraging article.

 God Bless,

 Jim M.

 Stage 3C

Jim --

There's another 2006 article from some people at M.D. Anderson in Houston reporting similar (slightly less favorable) results.  I like this study better not just because the results are more encouraging ( :>) ) but also because of the matched pair analysis, which is a more statistically rigorous way to look at things. 

 

Stay strong.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill
It ain't over 'til it's over. Yogi Berra
My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there