Cancer of unknown primary

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Cancer of unknown primary

by kjunmom on Thu Feb 10, 2011 12:51 AM

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Is there anyone on this board with this diagnosis? I just found the site. I was diagnosed in June 2010. Spent a week at MD Anderson with no new diagnosis. Slides also sent to
Arizona for additional testing. I have done the Carbo and Taxol regimine IV for 6 treatments over 18 weeks. Pet and Cts showed improvement with less uptake in bones. The new tests show a more positive reaction to drugs used for non small cell lung cancer stage 4. I am now on a Tarceva pill daily. Anyone have any similar experiences? I am still working as a nurse and am tolerating the meds pretty well exept for being tired a lot and some neck pain. Thanks for any info!

RE: Cancer of unknown primary

by email99 on Wed Apr 13, 2011 12:00 AM

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I had a mass removed Dec 2010 and was told it was andenocarcinoma of the unknown primary.  I have no symptoms and have had all the tests. All tests have been negitive. I have been to several Drs here in Phoenix and Mayo in Scottsdale and U of A in Tucson.  All Drs say the same thing, " this is so weird" I sure don't feel like I'm going to die for a very long time. I'm wondering if there has been a mistake with my mass that was removed in Dec. I have had the Drs send it out for DNA testing. Boy, they sure didn't like that I wanted  that test.

RE: Cancer of unknown primary

by kjunmom on Wed Apr 13, 2011 02:12 AM

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I was feeling the best I ever had felt. I am now on Alimta because they say it is reactive to the drugs for lung cancer. so far I have tolerated the chemo well, but for how long. I still can't believe they can't figure out what I have. I still work and play tennis occasionally. I do take a lot of vitamins and supplements. Good luck with the testing. Where will the tests be done. Will your insurance cover that? I wish you the best!

RE: Cancer of unknown primary

by cupcake123 on Mon Jan 16, 2012 07:55 PM

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CUP got my attention in 2007. I am now a 4 year survivor. I also had Carbo Taxol. My lump was found in the right groin. The retro peritoneal chain was also affected. Yes, I`m also a nurse (now retired).

Hope you are doing well.

Dianne

RE: Cancer of unknown primary

by Shelley64 on Thu Aug 09, 2012 12:01 PM

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Hey Everyone,

I, too, am a nurse.  Well, a nurse practitioner - now retired for 5 years! 

I am a five year survivor!  I've been on weekly taxol and carboplatin and avastin every third week.  I have gone into "remission" three times, 6 months, 1 year, and 8 months.  During those times I stayed on avastin alone.

I still don't have a primary site and my tissue was sent to Mayo and I saw Dr. Greco at Vanderbuilt and he sent it for DNA.  Nothing.

I hope you are all doing well. 

Shelley     www.caringbridge.org   visit: shelleycampbell

RE: Cancer of unknown primary

by kjunmom on Sat Aug 11, 2012 02:52 AM

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On Aug 09, 2012 12:01 PM Shelley64 wrote:

Hey Everyone,

I, too, am a nurse.  Well, a nurse practitioner - now retired for 5 years! 

I am a five year survivor!  I've been on weekly taxol and carboplatin and avastin every third week.  I have gone into "remission" three times, 6 months, 1 year, and 8 months.  During those times I stayed on avastin alone.

I still don't have a primary site and my tissue was sent to Mayo and I saw Dr. Greco at Vanderbuilt and he sent it for DNA.  Nothing.

I hope you are all doing well. 

Shelley     www.caringbridge.org "" target="_blank" rel="nofollow">http://www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org   visit: shelleycampbell

Well it has been 2 years and 2 months now. I am being treated as a NSCLC. I have tested positive for 2 genetic mutations. I am EGFR positive but the Tarceva did not work and I had progression. Needed radiation to my left femur head. I am also ALK positive so I have been on Xalkori now for 4 months. Scans are better and my CEA is down to 314 from 1660.Only 2 small lesions on liver now.

I am still pretty tired on a lot of days. I have not worked since November and no longer playing tennis. I do find time to visit with friends and go out to lunch or dinner!

Congrats on your 5 year survival!

Sandra

RE: Cancer of unknown primary

by Shelley64 on Mon Aug 20, 2012 12:17 PM

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Thanks Sandra and congratulations on your improvement! 

Two years of this stuff - hum.  Definately better than the alternative :)  I smiled when you said you didn't work or play tennis anymore because I sure know how that feels to slowly give up the activities you love.  Now, with the bad comes some good - I also gave up mopping and toilet cleaning!  I have had to give up major grocery shopping because by the time I get through the store I'm so tired I cant put the food away. I do actually use a wal-mart run as exercise because it's so big and just wears me out!

You just adjust and find new things to fill in your time.  Keep pushing yourself to meet your friends and find new ones.  Keep doing fun things whenever you find that extra energy.  I've found that I can't save energy, if I don't use it when I have it, it is gone!

Shelley

RE: Cancer of unknown primary

by kjunmom on Mon Aug 20, 2012 01:28 PM

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So funny and true about shopping!  That, and lugging my bird food around,has been my exercise too. I love watching the cardinals, bluejays and hummingbirds. I take a few pics too. I won a prize from Ellen on Tv. You know how easy tv  and a recliner can be. It is a shutterfly gift cert for $500. I am tring to make books and print all these digital pics! I also bought a video transfer cable in order to move all of the VHS tapes from the kids growing up to digital. I'm tired just thinking about it!

The jetski story was fun to read! Husbands just don't think sometimes! Mine tries hard though!  Hope and pray you keep feeling well enough to keep going strong!   Sandra

  

RE: Cancer of unknown primary

by Wildebeth on Wed Aug 22, 2012 03:38 PM

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The similarities in the stories always amaze me. I wasn't in the nursing field but I did play tennis :). I have been on taxol for 6 months, taxotere for 2 treatments (it ate up my hands) and Fu-5, carbo and urbitux for 3 months. The taxol is "keeping it at bay" but I expect my doctor to change or add to it soon. I'm waiting on DNA testing to come back from Dr Greco in Tennessee and hope that will tell us something-anything. One commonality seems to be that individuals with this "look really good". I'm told that all the time and my answer is thanks, but it's what's on the inside that counts. Most people are very uninformed about this cancer and, in my experience, have a tendency to say oh you're going to be just fine. Don't get me wrong. I don't want people fawning all over me but there needs to be more awareness of this disease. March will be my two years. In the meantime, when I feel good I live like its my last day. Or close. It means so much to be able to communicate with others going through the same thing. I wonder why there are so few men. Is it the statistics of CUP or men just don't seek out sites like this? Hope everyone is having an up day. Beth

RE: Cancer of unknown primary

by lechefgerard on Sun Apr 23, 2017 01:49 AM

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On Aug 11, 2012 2:52 AM kjunmom wrote:

On Aug 09, 2012 12:01 PM Shelley64 wrote:

Hey Everyone,

I, too, am a nurse.  Well, a nurse practitioner - now retired for 5 years! 

I am a five year survivor!  I've been on weekly taxol and carboplatin and avastin every third week.  I have gone into "remission" three times, 6 months, 1 year, and 8 months.  During those times I stayed on avastin alone.

I still don't have a primary site and my tissue was sent to Mayo and I saw Dr. Greco at Vanderbuilt and he sent it for DNA.  Nothing.

I hope you are all doing well. 

Shelley     www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org "" target="_blank" rel="nofollow">http://www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org "" target="_blank" rel="nofollow">http://www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org " target="_blank" 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Well it has been 2 years and 2 months now. I am being treated as a NSCLC. I have tested positive for 2 genetic mutations. I am EGFR positive but the Tarceva did not work and I had progression. Needed radiation to my left femur head. I am also ALK positive so I have been on Xalkori now for 4 months. Scans are better and my CEA is down to 314 from 1660.Only "" target="_blank" rel="nofollow">http://1660.Only " target="_blank" rel="nofollow">1660.Only 2 small lesions on liver now.

I am still pretty tired on a lot of days. I have not worked since November and no longer playing tennis. I do find time to visit with friends and go out to lunch or dinner!

Congrats on your 5 year survival!

Sandra

Would like to hear comments about the importance of CEA. My oncologist says it means nothing, but I've seen it increase substantially in the last six months since NSCLC EGFR positive Dx.

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