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Questions from my Dad re: Clinical trials, PCI, Met


S. Jane

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I was talking with my Dad, and he has several questions that he hopes can be answered.

1. Has anyone been involved in clinical trials and have had good results? Though he didn't opt for searching for a clinical trial, and he went with carboplatin and V-16, his second opinion suggested cistaplatin instead. They had also discussed two radiations a day instead of the one he had.

2. He is not too crazy about PCI - actually the more he read, the more he didn't like the sounds of it. He is leaning towards not doing it. Still, it scares him, to think that it would go to the brain. Is there an amount of time that he will have peace before it met to another organ?

3. Did you get second opinions after the oncologist told you how he felt about PCI? His oncologist isn't too keen on it, but the research we've seen has shown positive longer term results. Are there other treatments besides PCI that has helped slow met to the brain?

We are hopeful that he is in remission, and will find out within a few week after all the tests are done. It is a difficult road, that you all know too well.

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Jane, It is a difficult decision your Dad is facing. Is he is pretty good health otherwise? Did he tolorate the chemo and radiation the first time around? I opted to get the PCI because it was the right thing for me at the time. I want to extend whatever time I may have to be able to spend with my Grandson. My choice, MY decision. Everyone has to make it for themselves. Some opt to wait to see if they get mets to the brain and then try to treat them.

Prayers for guidance headed his way.

God Bless,

MO

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Jane,

the others will post about their personal experiences, but it is always a good idea to get a second opinion (third, fourth, fifth) however many it takes to answer all your questions thoroughly and enlist a qualified medical professional who is willing to FIGHT along-side your dad.

Sending positive thoughts your way-

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Hi, Jane!

PCI is a tough decision because there just isn't enough long-term information. We'd all like to know how people fare 5-10 years out from it but...well, nobody seems to have those stats available.

The summary of what I've read is, 60% of lc patients will get brain mets (can't remember if that's all lc or just sclc). PCI reduces brain mets by about 50%. So, even with PCI, about 30% will still get brain mets. And PCI may make brain mets harder to treat.

My mom will probably opt against PCI for a couple of reasons. She is most likely going to have stem-cell replacement (which means super-doses of chemo, and one of the drugs used will cross the blood-brain barrier). Also, the hospital where she is being treated has a state-of-the-art radiology center, so if she needed treatment for brain mets, she could get the best available quickly. With those factors, Mom is leaning away from PCI.

There are long-term survivors in both the PCI and non-PCI groups. All you can do is make the decision your dad feels most comfortable with.

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Thank you all so much for responding!

Jen, I'm in Massachusetts - where is your Mom getting treated? My Dad is not with a large hospital or cancer center, though he did get his second opinion at Lahey Clinic when this started. From what you wrote, I am wondering if your Mom will be getting WBR if it mets to the brain? I was interested in reading more about the information you got regarding that PCI makes it harder to treat Brain mets. Thanks.

KatieB, I am encouraging him to get a second opinion. He is very confident in his doctor, and I am too, but since his doctor told him 60% of doctors say yes to PCI and 40% say no, it seems like there is a relatively even distribution on believers and non-believers in PCI. That makes it tougher for the patient. I will continue to push for more professional opinions.

Mo, You are a positive contribution for PCI. Yes, my Dad is in good health at 79 years old, but the chemo/radiation was tough on him and they had to decrease the last two treatments to 75%. We are hoping the results of the tests he will be having in two weeks, puts in him remission.

Again, thank you all so much for your time.

Jane

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Everyone has to choose this one on their own. I opted not to have it done.

Reasons 1: I do not want the risk of the brain damage it may cause. Not that everyone has an extreme amount of damage but there is that possibility.

Reason 2: If it mets to the brain and chances are still high if PCI is done then you can not treat it as aggressively as if the PCI had not been done.

Reason 3: VANITY reason 8) I have already lost my hair 2 times, and really do not want to go thru it again unless it has to be done to control/get rid of the mets.

So everyone has to make their own minds up.

Good Luck, Cindy

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