I am going to enter update

[Kathleen Dodge]

After 4 xrays, 3 CT scans and 3 bronchoscopies since Sept 2011, I was finally diagnosed with mucinous adenocarcinoma / bronchial alveolar ca of the lung . The lower right lobe of the lung was removed on March 5 and was was completely engulfed in CA 2 N1 nodes out of 12 were positive for metastatic CA, one N2 Node was examined and found negative. Stage IIIA AJCC pT3.pN1.

On March 16 I went to Moffitt Cancer Center in Tampa, bringing my CT scans, pathology report and slides. As I reread the report, I see that the immunohistochemical stains are to be performed to further characterize and classify this tumor and ALK and EGFR will also be ordered and an addendum will follow.

I saw Charles Williams, MD at Moffitt....based on what he had seen, her recommended a standard therapy cisplatnum and Alimta every 21 days for 4 sessions and said that I could have this therapy at the Cancer Specialists in Bradenton, Fl near where I live. I couldn't start until I had healed, 4 to six weeks. I am wondering if I should push for the results of the immunohistochemical stains and the ALK and EGFR before proceeding with the therapy, if I should ask the surgeon and the Bradenton medical oncologist,Dr Whorf here in Bradenton, if they would want those results before proceeding. I guess I can contact Dr Williams again to see.

Earlier, I read somewhere on this site about a woman from Key west(people told me it was Judy) who had a cancer very similar to mine (from what I saw online earlier) who got a treatment protocol from an oncologist at MD Anderson in Orlando and then she travelled all over and got her treatments at Cancer Centers along her route. I might like to do something like that, if my treatment is a standard one as we had planned to go out West this summer in our motor home. I wondered if Judy was able to drive on her trips while still having chemo. I am 70 years old in good condition with no other health problems. Of course we could always make a late summer trip if treatments continued until late June, early July.

Luckily, I don't have to do anything on any schedule since I am joyfully retired,but would like to make that summer trip if possible since my husband is almost 80 and funny thing, not getting any younger. If Judy is out there, let me know how you did your thing back 7 years ago! or tell me how to find her earlier posts!

[RandyW]

your talking about Judy in Key West Kathleen! She should be along tonight ! Just want to say Hi and welcome. It sounds as though you near The Merrill Cancer Center in Tampa I think? We are ahving some problems as of lately but the crew should be along tonight. Hang in there. I ama caregiver survivor . Ugly term is widower so.. Welcome and wil be back later tonight! go through the good news and inspiration for some happy stories!

[dianew]

Hi Kathleen - I have squamous cell NSCLC, and live in Oregon, not Florida, so am not much help - but did want to welcome you. As Randy said, JudyKW will be along soon and should have information on oncologist/cancer centers in Florida. I am sorry you had need to find this site, but I'm glad you did. You might also want to try cancergrace.org, which is a site many here also belong to. There is a lot of really good information about various types of lung cancer, as well as treatment options, and there is a panel of doctors who answer questions - in a general sense of course. It is a wonderful resource.

Please come back often.

Diane

[RandyW]

a lot of our members are also at cancerGrace.org under same names as here! they are great for the technical and medical help and we here are great at the emotional side of the fight basically.

[chloesmom]

Hi Kathleen,

I am sure that the Tampa St. Pete area has a lot of large oncology groups-just thinking here, is Moffet in Tampa? I am sure Judy will be checking in here-she is in the Keys.

Please keep us posted,

Cindy

[Joppette]

Hi, I wanted to welcome you here too. Judy from KW goes by the name "jaminkw" both here and on the cancergrace web site. I sent her a private message asking her to check this post out to see if she can help you!

Judy in MI (the other judy who is in michigan)

[jaminkw]

Hi Kathleen, sorry I didn't make it in yesterday. It was chemo day. You write your dx as

I was just diagnosed with adenocarcinoma / bronchial alveolar ca of the lung

and say it sounds similar to mine. This wording is not at all familiar to me. My lung was filled with fluid before the initial dx but my malignancy was confined to the pleura or chest wall. That has been resolved but now it is in the adominal wall. Determined by cell analysis to be the same cancer, mine seems to have a penchant for walls where it forms a thickening instead of a tumor. I give you this info just to let you know I may not be able to tune into the specifics of your cancer.

I go to MDA in Orlando because my PCP recommended MDA in Texas or Orlando. Even traveling to Orlando is a chore for us but I've never regreted it. At the time I was trying to determine where to go, my daughter who is an RN also recommended Moffit in Tampa. They wouldn't see me without insurance and they were even more distant than Orlando. Moffit does sound doable for you. We also have a member named Alan who is in PA but swears by Cancer Centers of America (did I get that name right?). I see them advertised in FL also.

Just to get things straight on my traveling around to Centers, that was just out of necessity so I could travel with my husband on his job. It involved MDA sending them orders and getting my chemo where ever I was going to be. It was not fun and don't do it so often these days. The first year I had to travel to OR every 3 wks because I was not on Medicare yet and did not have insurance. They had me on a drug replacement plan for what would have been a very expensive infusion but it was only valid there. I get my infusions here in KW now and occasionally on the road so I don't see why you can't work something like that out yourself. It can be stressful getting two locations to communicate but it's worth it.

Please do visit cancergrace.com and see what you can find out about your particular dx. I have had hope a couple of times but have not been able to find someone like myself with no tumor but malignant thickening in organ linings. I'm not understanding that's what you have but correct me if I am wrong.

Will look forward to your next post and thanks Judy for directing me here.

Judy in KW