jim-wilde
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Jean, yes, I had six months of Gemzar within a few weeks of discharge following the resection. The onc said at the time that they really didn’t know if it would help or not. It was just their best guess. I would have had Cisplatin as well, but other medical conditions precluded that.
The current situation is not lab quirks, since similar results are yielded from our local hospital’s lab and NY Presbyterian’s. I’ve had superb care at NYP and my onc really stays on top of things. It is puzzling to get clean CT and PET/CT’s (neck to mid thigh) with the funky blood results. So far, no answers. Like many of us, I have resigned myself to a time of always looking over my shoulder!
Jean, I can fully relate. I had a resection 5/09 at NY Presbyterian done by Dr Tomoaki Kato. Final path report was clear margins. I’d been getting quarterly liver function and CA 19-9 tests. Results were all in the normal range until early August this year. I’ve had one CT and two CT/PET scans since then, all normal and we’ve gone to monthly blood tests. Liver function tests have slightly elevated and dropping bili numbers and the CA 19-9 has bounced around 100, with no clear pattern. No clear answer has emerged yet, so the doctors are going to continue reduced time between scans and monthly blood tests. After several years of all normal, now this, has caused me to be pretty sure something is going on, just not sure what. The ‘good news’ in your case is they have actually identified something and are taking action, as disconcerting as that may be. In my case, knowing the high probability of cc returning, has caused me to never really think of me being ‘cured’.
I wish you well in round two!
Sorry you too had to find us. tflory, why doesn’t your husband want surgery? It represents the only real hope of a cure for this awful disease. I had a resection done over two years ago at NY Presbyterian with Dr. Tomoaki Kato, and so far, have remained cancer free. There is nothing easy about cc, but the surgery I had wasn’t that bad.
Patti , thanks for your kind thoughts. I’m thinking now of starting a Part Two of this thread at the end of this year, with the same title!
Kris, I hope you get a “Get Out of Jail Free” card soon and ditch the infection. That breathing thingy is a pain in the butt, but the consequences of reduced pulmonary function aren’t too nice. I got leaned on in May when I was in for a lung surgery and didn’t use that thing enough! Good luck!
The show, “Let’s Talk Cancer” goes live on the air just one week from today. The girls (Kim and Denise) have some sponsors lined up and also have some contributions. They definitely need more of both.
They’ve been invited Monday 11/28 @ 12 noon to a financial advice program on the same station for some air time promoting their new show. The host apparently was touched by the girls enthusiasm and she has some cancer connections (as do most people).
Kim has most of the first program scripted, since they may not get a high volume of callers initially. The station is really excited and expects the girls may get a TV slot soon. This is starting to get a life of its own. The station has been really great and will make provisions for Kim to handle her part from home, should she not be well enough to make it to the station’s studio.
Byron, so glad they were able to come up with a fix and it sounds like like no permanent damage done. How good is that.
Good luck with the cancer treatment.
Dr Kato is the best … he will treat you well and address all your concerns. If surgery isn’t feasible, ask what other protocol paths may be available. Good luck.
Dr. Kato is the one you really should see first. His secretary Delia is who you will need to contact. He will give you an honest opinion as to whether surgery is an option. Dr. Kato was my surgeon, and 2 1/2 years later I stay in touch with him. I’ve had elevated CA 19-9 marker tests since early August and I’m on a reduced time monitoring program. So far, so good. It would be hard to find a better surgeon than Dr. Kato, in my opinion. If you’d like to discuss this in more detail, I can email you my cell number.
Elsy, I completely understand how your life has been upended. I hope you can find a good protocol. Keep in mind surgery is a very good thing indeed. Good luck!
I’m not a doctor, so can’t give any medical advise. I would suggest letting your docs know, if you haven’t already. You shouldn’t have to endure pain unabated.
Nancy, just saw your post … wonderful news. Keep the good scans coming, pretty soon you too can glow in the dark like me! BTW, take a look at my dear friend Kim’s upcoming radio show. More info at this public FB page:
http://www.facebook.com/#!/groups/139760329385294/She needs contributions now to get and keep the show airing, until advertisers roll in!
The show contract will be signed Mon 11/14 and will need donations until enough advertisers are lined up. Air time will cost $150/half hour and a an anonymous donor has covered the first show slated for 12/1 @ 12:30 PM. Right now, contact Denise Ciliberti-Sosalski on Facebook for either donations or ad placement. There is also more info on a public FB page “Kim’s Krusaders” about the show. Denise may be messaged via Kim’s Krusaders as well. Anyone having any problems with this or needing more info, email me through this website. Our Kim is really excited.
Donations may be sent to Denise @ 9158 Academy Rd. Philadelphia Pa 19114, and made out to Denise or Kim Cirucci.
I’m not aware of anything like this on the radio, and the station is very enthusiastic!
Facebook link to Kim’s Krusaders:
https://www.facebook.com/groups/139760329385294/
Looking for more people to join, donate and/or place ads! Kim needs all the support we can muster.
