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Meeting of Pancoast Tumor survivors 1/27/05


Donna G

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Did we all greet Calintay, who's mom has a superior sulcus tumor?

We have not gathered in so long! Please update us on how things have been going. Kasey, Rita, Laurene Relyag, Tracy, Rocco, Kelly for her dad, Keith, Rita Bubb, Grammy bear ,Gary, mhutch1366 Please tell us how we are doing?

Pancoast tumors are squamous or adenocarcinoma tumors located in the superior sulcus or apex or the lung cause symptom of shoulder pain, weakness and other problems because they press on nerves , blood vessels, and the pleura.

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Welcome to our newer members, who would also rather not have to be here. Hello, Calintay. We've PMed.

Hey, I'm doing fine, go for scans 4 1/2 years from surgery in two weeks.

Expect to find no significant changes. Still dealing with pain problems since they pulled Vioxx, but sooner or later we'll find something else that works.

Actually making plans to have my mediport removed (finally) this spring.

Close enough to 5 years I am not tempting Murphy.

Thank goodness the survival rates for stage III and IV pancoast are well in excess of 50%!!! and that's just the general report from a few years back.

Kasey who was here briefly got through her surgery, and I think has been back to see the dr. since. The doctor got it all, and said what he pulled out was dead. Hooray! Kasey is the retired schoolteacher from PA.

I got her to see my NIH surgeon, when Fox Chase told her they couldn't do anything.

Would love to chat, but Thurs nights, at least this one, isn't any good.

Anyway, I'm accounted for, Donna!

Prayers, always...

XOXOXOXOXOXOX

MaryAnn

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I am a little over 3 weeks from surgery. Met with surgeon yesterday and he said I was doing great. Don't feel so great yet - but was told I need to be patient. Doctor got it all and said it was very dead. He looked all around and could find no evidence of disease anywhere. He took many specimens for biopsy and all were negative. A question I have is this - if the entire tumor was removed and was dead - why would survival rate not be better? Do these types of tumors come back or what? Anyone know? Once again I thank Donna and MaryAnn for making this possible for me. Doctors here had me crossed off their list. This website was a godsend for me. Thank you. Would appreciate words of encouragement during this recuperation period.

Kasey

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Kasey, GREAT NEWS. Mine was dead too at surgery. I had hoped they could tell me for sure if it was squamous or adenocarcinoma but they said it was just scar tissue at that point. Kasey try to be patient, it takes a while to get over the surgery. Are they planning more chemo? I had more, it had been the plan from the beginning. Donna G

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Thankyou all!

My mom has finished her treatments chemo and radiation. She has a CT scan on 2-7 and meets the pulmonary surgeon again on 2-14 (valentines day!). Hopefully all goes well and they can do surgery and then we will too be in the recovery process.

My mom finished treatments on Tues and is still really sick. She is does not really say how she is sick but that she just does not feel good. Her throat still hurts her really bad :(

Any helpful advice would be so appreciated

PRAYIN FOR A CURE!

Also for those who had shoulder pain, did it go away during treatment like my moms, or did you still have pain? She says the only pain she is in is her throat

Calintay

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yes, the pain did go away during treatment. Of course with surgery I had different and more pain but heck that was for a cure! I can tolerate some pain if it means I can live! WAiting to hear how the check up goes. Donna G

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