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Dismal prognosis update


asmakis

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My parents met with the oncologist yesterday who said he had hoped for a better response from the chemo treatments. Unfortunately, 50% wasn't the greatest afterall (according to the dr.). Apparently the PET "lit up" all along my dad's neck and throughout his chest. This journey has definatly been a roller coaster. I'm almost getting to the point that going to the dr. isn't hopeful anymore, because he's always got bad news to report. My dad has been feeling so good lately- his energy and appetite are back, and his spirits have been high- then we go to the dr. and it's down hill again. The dr. said he was going to contact UC Davis to see if there are any clinical trials available for my dad. My parents are to meet with him again in two weeks and hopefully he'll have something. Why can't they just give my dad another potent dose of the chemo that they just completed? The dr. said that chemo was the best one for my dad- why don't they just do more of it? Is anyone aware of any clinical trials that have been successful? My dad has stage IIIB NSCLC- Squamous cell carcinoma.

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Amanda,

Usually 6 weeks of chemo should be enough I would think to find out if that type of chemo would work or not. If it didn't work, then as Dadstimeon says, "Next up..."

There are many different types of chemo, some even in pill form. I would think there should be something else to try as well, especially if your dad feels well and is ready for round 2.

Please, if you have other questions, ask and we can try to help.

Prayers...

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One reason not to give another dose of chemo is that it may delay entry to a clinical trial.

Usually there are protocols in clinic trials that have a certain number of days of no treatment before the clinical trial. This is to ensure that the trial drug was a the result of the response and not previous treatment

From what I had read squamous cell usually has a better prognosis than some of the other lung cancer types

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Amanda:

I'm no doctor, but 50% shrinkage sounds like a mighty good tumour response and worth being positive over -- my mom (same dx as your dad) had 13 weeks of taxol/carbo. and only got 30% shrinkage (our onc. didn't really say anything about that). The doctor could be being negative because of what lit up on the PET -- chemo treatments can encourage mets to other parts of the body, so perhaps that's why the doc. wants to pursue something else....this particular tx with your dad may be causing cells to float around and take up shop elsewhere...maybe that's why: did anyone ask the doctor why? Treatments get such a range of individual response!

Great news that your dad is feeling so well. Praying that whatever is "next up" does the trick.

Linda

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Dear Amanda,

I am sorry to hear of all you are going through. For what it's worth here's my two cents': I live in Boston and we are supposed to have fantastic cancer doctors. I can tell you that the medical oncologist we were assigned to at Dana Farber (the best cancer hospital here) was quite clearly not going to treat my Mom's cancer agressively - even though her status is good and she wants to fight. 3 medical oncologists later, we found one who was positive and willing to try whatever he could to fight agressively the way she wants.

I can't quite figure out why 2 doctors passed my Mom up and the 3rd was willing to fight. But I do know you have options and as labor intensive as it is, you can go find them. I've also learned the squeaky wheel gets the grease, so be pushy if you need to be. It seems like it can be the only way to get people to pay attention sometimes.

good luck with everything. if I can help in anyway, please let me know.

take care, Brandie

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Amanda,

All good answers above.

My experience with Lisa's Onc doctor (and I've learned to read his mind)would lead me to believe that your dad's doc. would have to proceed with lower doses of the same treatment which would result in lesser improvements. They keep track of chemo doses and know when the body approaches toxic levels. You said that he is feeling better and enjoying life more and more of the same toxins might reverse that.

You lucky that your doctor is willing to search for clinical trials. Lisa's doctor would not do that.

2 weeks would be in his favor if he is going to do a clinical trial because most require 28 days since last treatments. You can do your own searches for clinical trials since you know more about his dx and treatments. One search is http://clinicaltrials.gov

or just go to http://www.ucdmc.ucdavis.edu/cancer/Clinical_Trials/

to inquire what is at UC Davis.

Lisa's doctor did give her a choice to proceed with the same Gemzar/Carbo at a lower dose or another treatment which was Tarceva. If trials can't be found I guess lower dose of the best chemo. is possible. Are ther other cancer clinics in your area? They are always willing to launch a 2nd opinion.

Take good care of yourselves - happily - Chuck

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Amanda,

Something just doesn't sound right about this to me. My vote goes for a 2nd opinion. There are 2-3 chemo "duo's" out there depending on how the onc wants to proceed. Can't imagine that they wouldn't be more aggressive with the treatment as your Dad is quite young. 50% response is good, but if it has spread to other areas during chemo, then they have to switch up the chemo to fake out the cancer. (That's Doctor lingo ya' know! :D ) My husband became severely allergic to all of the platin based drugs, but he went on to take a taxotere/gemzar round of 12 cycles. I was rather emphatic at the beginning that I wanted him treated aggressively, despite his staging. We've seen other patients at our onc's office with spread to neck, etc. and they haven't entered trials yet. They are still on mainline therapies in conjunction with spot radiation. Seems there should still be more available to your Dad at this time without dipping into trial territory.

***Disclaimer: The above opinions are mine, which might not be worth a hill of beans! ***

My best to you and your family,

Welthy

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Amanda; this would be a good time to get a second opinion at a major comprehensive cancer center. UC at Davis is a good place to go for a second opinion. You could discuss clinical trials vs continued second line chemotherapy. I am sure your dad's current doc would give a referral if you need one for insurance purposes.

Don M

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I think my dad already had second line treatment. Originally he did 6 weeks (1 per week) of Chemo- carboplatin and toxotere. Then he had about 1 month off before he started chemo again for three months. I thought the second round of chemo was the second line treatment. Am I wrong? I sure hope I am because this would change things.

Amanda

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Amanda: the most common second line therapy drugs are alimta, tarceva and taxotere as a single agent. Carboplatin in combination with other drugs such as taxol, gemzar or taxotere is a first line therapy. If your dad gets a second opinion at UC Davis, they can clarify whether or not he has had second line therapy.

Your dad's profile mentions carboplatin/taxotere only. It also says the second period of chemo was 3 weeks instead of 3 months. I guess the 3 weeks must be a typo? I had assumed that the additonal 3 weeks was just more carboplatin/taxotere.

Don M

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Amanda,

First get a clear statement from the doctor as to why he is discontinuing the chemo.

I had 11 cycles of my first line chemi. Then he had to take me off because the blood counts were just too low.

My second line was Altima - didn't work. Now I'm on taxotere. My first scan is 9/13 to see if there is any shrinkage.

Mary

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The body may have developed an immunity to the chemo which causes ther chemo to stop working. JUST A SUGGESTION THERE. this is a link for clinical trials NSCLS SQUAMOUS CELL. Hope something helps PM if I can do anything for you and sending prayers for everyone.

http://clinicaltrials.gov/ct/search?ter ... carcinoma+)+%5BALL-FIELDS%5D&sugg=1.1

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