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Doing ok, I think...


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It has been awhile since my last post and my dad seems to be doing ok but I still have so many questions. His diagnosis was in January of 2006 but he had been complaining of bone pain for several months prior to his official diagnosis, which was the result of a needle biopsy. Prior to his diagnosis of metastatic NSCLC to the bones he had been told he had arthritis; even though three years prior he had part of his lung removed due to NSCLC. His treatment at MSKCC has been one of the platinum based doublet therapies and he has had a limited response. His most recent PET scan showed lower SUVs and some nodule shrinkage. His sixth and final treatment will be tomorrow and we're not really sure what will be next. The doctors, with some exceptions, at MSKCC have been great and will offer us some alternative/second line treatment tomorrow. Has anyone had experience with second line treatments? What should we ask them? My dad has had treatment every three weeks and feels great by the second week after treatment but by the third week he becomes really debilitated by the pain and I'm worried what will hapen after they stop this current regimen - they say six treatments is the maximum. I asked the nurse if the pain he has now is a symptom of disease progression and she wasn't sure but will schedule a PET scan. He just had a PET scan; how quickly can the diease progress? The nurse also said we "will know" when the end is near. What does that mean.

Thanks

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the only one who will know when the ed is near is your father and you will get that a lot here. If this is first lin eof treatment you will probably do scans for a month or two. If disease is found to be progressing the Onc will probably start a second regiment. There are 6 standard regiments now. Then they start new combos depending on what happened previously. Does he take Oxy for pain that is what Deb had done. I know how stressfull this is for you and Dad. Think Positive. remember yesterday, Cherish today and Pray for tomorrow. That is about we can do some days, but not all days. Saying a prayer for good test results. Shrinkage is good news ands will probably earn a little break from treatments.

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He's taking about 5omg of oxy per day but now they are talking about a fentanyl patch - any experience with that? I'm very happy to hear that we have at least five more regimens at our disposal but I'm worried that the disease progresses while they are watching and waiting...

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Hi, it would be helpful if you would put a cancer bio for your dad below your text, so we can see what treatments he has had or is having and can advise you with that knowledge. There are many treatments for metastatic NSCLC, so I am sure there are other options out there. Don

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It is hard to say this but the truth is the disease never really goes away. Right now the best hope for LC and I have done rsearch is to make LC a chronic disease much like diabetes. There is no kknown cure right now. There are a LOT OF IRONS IN THE FIRE BUT!? The fire is going out you know what I mean. LC is diagnosed so late that it is hard to have survivors for clinical trials for research. W/o Survivors no research, htere fore No research no survivors. Always think positive I did for 3 years. I still think positive for everyone like you and your father. That is why I am still here with this wonderful group of people trying to help everyone that we can. Check with ONC about amount of oxy and how frequently. Never got the oppurtunity but PAIN MANAGEMENT could be an option worth checking into. never got into that area of medicine. Saying prayers and wishing you the best Sorry about the Rant but that is my soapbox rant and I get passionate about this some days mor ethanm others. If you need info about drugs or trials Check the New Meds Clinical trials Forum. Thats Me. Great Links for info.

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Hi Bobby,

Welcome to the most wonderful support group, but sorry your dear dad has this terrible disease that brings you here.

When doctors say that 6 they generally mean 6 doses of the same chemo agent, which is considered a "Cycle" or "round" of chemo. The body builds up defenses and becomes tolerant to chemo drugs, so usually after about 6 doses they become less effective and too toxic for the body. That is why they change the chemo drug to a second line treatment. There are many many different chemo combos available, it is just a matter of finding the one that works miracles for your dad. My husband has had 8 different lines of chemo treatment, 1 experimental treatment, and one hormone treatment. And tomorrow we will talk to the oncologist about trying a targeted treatment; either Temodar and Thalidomide or Tarceva and Avastin.

There are many options available to you, so do not give up hope.

IF your dad's pain is from the bones, I would look into radiation, it really can relieve the pain well. Also ask your onc about Zometa. It is a drug that is pretty successful at helping bone mets and slowing any progression or spread to bone mets.

No one can tell you exactly how quickly the disease can progress or how long your dad has. I've unfortunately made many friends on this site whose disease progressed way too fast and we lost them way too soon. But then there are many others who are beating all statistics and outliving all estimations. My husband is one of those too. Originally they reported he had a prognosis of 9 months - 12 mo. But it has been 3+ years now, and we still are not giving in.

Your dad can be a miracle. Your dad can make the doctors stand back and say WOW.

Try not to worry too much about the what if's or the end. Cherish today and this moment. The end will come when it will so why waste this time in anxiety.

I will be praying for you and your dad, and your family.

God Bless

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My husband had the patch and had a bad reaction to the mophine. He was so sick from it. I actually took him off it myself and he instantly improved.

However, there are people here where the patch had good, positive results to control the pain. It just depends on the person.

Good luck with everything, and don't listen to stastictics. Only the man upstairs knows when it is his time. Just be with him as much a as possible. Keep a positive attitude.

We are always here for you.

Maryanne

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I have said it so many times -- the patches were an absolute Godsend for my mom. We tried everything. Her bone met pain was horrendous as the mets progressed so quickly with her -- radiation does wonders for pain management for many people (it did for her as well.)

For breakthough pain, the Actiq suckers also work for many people. If the bone mets are severe, pain management should be your number goal -- sometimes it takes a while to find the right mix, but you should be able to.

No one can tell you how much time he has. People on the board have gotten terrible news of progression and kept fighting with great results - in my mom's case, she was doing fairly well (good scan results 3 weeks earlier) and basically took a turn for the worst in 12 hours. You simply can't predict, all you can do is be supportive and be an advocate for your dad...and if you don't have it, seek out faith. :)

Praying for you guys -- I am sorry that your family is going through this. It is so scary.

Holly

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