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A good second opinion


BarbaraL

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Yesterday I went to the Cancer Institute of New Jersey for a second opinion. Aside from a fairly long wait (grrrr), I was very satisfied.

The onc I saw specializes in thoracic onc, so I figured he was one step closer to anything new in terms of treatment. Also, he had a great bedside manner, and seemed to really read me in my ability to grasp what he was saying and my ability to ask (intelligent? LOL) questions. He just kept giving me information until I was satisfied, and in a very understandable way.

He basically told me that my onc's treatment plan is what he suggests (though I didn't tell him about future plans, only treatment to date). He filled in a lot of details that my regular onc hasn't explained adequately, so the whole visit has given me considerable piece of mind.

Because the consulting onc is at a comprehensive cancer center, he has access to many up-and-coming drugs through clinical trials. My regular onc had always planned to put me on Iressa at some point, and I'm going to consider participating in a trial the consulting onc mentioned. He said the drug is similar to Iressa, and that preliminary findings are that it performs much better. I'm pretty sure it's a Phase III trial, but I'll investigate that when I'm at that point.

Finally, at the end of our consult, the doctor left me with a great deal of encouragement. He said "You have three very important things on your side--you're *definitely* responding to treatment (with minimal side effects), you're young, and you have no other health issues."

So, let's here it for the docs out there who not only know their stuff, but know how to communicate and end on a positive note! I think I'll start making plans for a January/February vacation! :D

Love and good thoughts to all,

Barb

PS: Hope my new photo looks okay. Guess I'll see when I hit submit *now* :wink:

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I love the pic!! You look great! 8)8) I have a wig too and only wear it for picture taking things. I wore it to my son's wedding so in the yrs to come I have hair. I too wear bandanas. I get the material at Wal-mart --all different kinds, esp. holiday prints. I have a sponge bob one and the kids love it.

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Hi Barbara -

For some reason, your post today really reminded me of my mom, so I had to reply. My 47 year old mom was recently diagnosed with NSCLC in August. According to her last PET scan, the areas in lymph nodes lit up as well. She has had her first treatment of Carboplatin/Taxotere and so far, is doing very well ..... she hasn't even lost her hair yet!

The doctors haven't staged my mom yet, but feel she is between IIIA and IIIB. They are waiting until her 2nd - 3rd chemo to go in and do a complete biospsy. We are praying that it is a positive scan.

My mom also had a chest x-ray done last week, and they could no longer see any of the cancer. At this time, I feel like we are getting so many different opinions/diagnosis/prognosis that we are pulled in many directions.

I was wondering if you had children and how they are dealing with all of this? Also wondering more about plueral effusion and what a malignancy there means? Any advice on combating your cancer would be much appreciated!!

Best of luck in all you do! :)

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Kristy,

It sounds like your mother's doctors are on top of this! The fact that she's started treatment, and they have plans to properly stage her is a good thing. Those results will guide future treatments.

I don't have any children, so I can't offer guidance there. But I will say I worry like crazy about my parents, who already lost one child many years ago when I was 23 (he was eighteen). When I was first diagnosed I was vague with them about staging and such, since I frankly didn't know if I would see Christmas! Now that it's pretty clear I will, and I'm responding to treatment, I've been more forthcoming with them. I stress that I feel well now, and that's what counts.

Regarding your question, the pleura is the membrane that surrounds each lung inside the chest wall. A pleura effusion is an accumulation of fluid there. I had a massive effusion resulting in extreme shortness of breath, which is what sent me to the doctor in the first place. The fluid was drained in a procedure called thoracentesis (they removed 3.5 liters!), and sent to the lab...it was full of malignant cancer cells, ergo a malignant pleural effusion. A MPE is Stage IIIB automatically.

I had my right pleura removed surgically, and they put sterile talc there to sort of "stick" the lung to the chest wall and prevent further fluid accumulation. That was successful. I still have a bit of fluid in my chest, but it's localized and not accumulating any more.

Are you sorry you asked? :wink:

As far as advice, I'd just say do as much research as you can, and post any questions here. My experience with these boards is that the wonderful people here are very helpful and quick to answer! Thanks everyone. :D

Also, focus on the positive! Since no one knows when their time will come anyway, help make your mom's quality of life the best it can be.

Best to you and your mother,

Barbara

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My wife has a wig, which is quite nice, but she says it is too hot, so she only wears it to church on Sunday. She started out wearing turbins and now her favorite is a floppy hat that is blue demin on one side and khaki denim on the other -- very versatile. She says as soon as her own hair is long enough, she will not wear anything on her head. Your wig looks very good. Don

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Barbara,

The drugs your onc is considering (similar to Iressa) is probably either Tarceva (very similar) or Erbitux (targets the same thing as Iressa but on the outside of the cell instead of the inside)

I have read that Tarceva is much more potent

Take care

John

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Barbara, sounds like your onc is right on the target. It is so nice to have a knowledgeable and caring dr when one is in need. Yours sure sounds great...

your pic is terrific. my Buddy goes without a wig, wonder if when you aren't using it if he can. if you look that terrific, wonder what he would look like...hippy Buddy......no kidding, you do look great. one would never know frm the picture how much you have been through. Keep up the good work.

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A few responses:

Don, your wife is right that the wig is *hot.* It also gets very itchy. I've got enough discomfort, thank you very much. :wink: I break it out for special occasions, like my wedding reception in our backyard, which is when this pic was taken (August 9).

Norme, at least it's stylish for men like your Buddy to be bald. :o But you reminded me of a story. At the aforementioned reception, later in the evening after a particularly rousing dance number, I tore off the wig, twirled it around my head, and threw it off to the side to rousing cheers from my family and friends. Then a great friend of my new husband, who is a total nut-job in a fun way, put it on and danced around with it for at least 1/2 hour. Great memories and we have great photos, too!

John, thanks so much for the names of the potential drugs. You seem to be the resident scientist among us, and I've read all your posts with great interest. I appreciate it that you've stuck around these parts, even though your mother lost her battle.

I'm so impressed with this board. Thanks to everyone for having me. :D Hopefully you'll have me for a long time to come.

Barb

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Barb, love your sense of humor, and your hubby's! When my wife got out of the hospital from pneumonia two weeks ago, I realized her hat was packed in the bottom of the bag, and we were heading for a luncheon at church. I said I would unpack and get it, but she said, "Don't bother" and went with no head covering! It was then I knew she was well, and her attitude had improved. When she arrived at the luncheon, she got a rousing ovation. Don

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Hey Barb,

So very happy for ya, :)

and the pic,'s just great, 8) sides I'm kinda of partial to " Jersey girls", I married one, names also Barbara, be 30 years on Mon. and I plan on being with her another 30. :D

I've heard good things about Cancer Institute of NJ, Thanks for confirming them. I had my second opinion at Sloan Kettering, Dover, NJ and was operated on at Morristown Memorial. I was also treated by some pretty compassionate doctors who provided that same kind of comfort. I think it's just so important. They need to do a better job of teaching it.

again, happy for ya, take the vacation and enjoy

God bless and be well

Bobmc- NSCLC- stage IIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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I loved your post, and I love your pic! Looking good and feeling good...can't ask for much more! Except that it continues for MANy long years! I'm keeping you in my prayers for just that! Keep posting!

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Hi Barb - nice to "see" you. You look great with your wig. I'm from Central NJ too. My dad has just been dx and also went to NJ Cancer Institute (RWJ) at Hamilton . Glad you liked the onc. and were comfortable there. We see the onc there again next week for staging and treatment ideas. He is at least in stage 3. We want a 2nd opinion too, just trying to figure out where to go. If you have any suggestions, please let me know.

Thanks

Paula

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