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Pancoast Tumor NSCLC

Diane411
Posts: 13
Joined: Aug 2006

My dad was diagnosed with a Pancoast Tumor 7/3/06. It is nsclc (squamous cell), but the tumor is supposed to be the rare part of the cancer. The tumor is on top of the right lung and has invaded the vertral body at C7-T1. According to the CT and PET, there is mediastinum involvement and the bracial plexus is also involved. His pain has been horrific. He has started rad (on 20th treament), 15 more to go. Chemo is taxol-carboplatin 1 day a week for 6 weeks. We had to take a break from chemo after 3 weeks b/c WBC were too low. We are also taking a break in rad. for 2 days plus the weekend. My dad is having a VERY hard time swallowing. Actually, he can't eat anything and can only get down a few swollows a day. IV fluids (Dextrose) started on tues and thurs to keep him hydrated and give him some calories. Dr. tells us that he will feel better after being off rad for a total of 4 days. I, as many other of you, am sick of reading and hearing about stats. My dad IS NOT JUST A NUMBER!!!!

Prior to treatment, my dad had NO health issues. Was told by family dr. that he was healthy as an ox. He has a great attidude and we are going to beat this thing. It's just very hard right now watching him go through this much pain. I would like to know if there is anyone else out there that has a Pancoast Tumor. This type tumor is related to abestsos exposure. My dad is a retired Ironworker and has had a lot of exposure throughout the years. I would also love to just hear from others for encouragement. When I'm in my "alone" time, I really get scared.

kaitek
Posts: 156
Joined: Aug 2006

Hi Diane411,

Cancer has always been scary for me even when it didn't hit so close to home. In the first couple of weeks, I was devastated with all the emotions one can imagine having after hearing the worst diagnosis in my mind. Frankly, cancer websites do not help any. They are depressing as hell. So, don't go there.

Instead, if you need to talk, come here. We can learn from each other. You're welcome to email me anytime.

I'm sorry to hear your dad is having such a hard time. My suggestions to deal with the complications include feeding him the protein, nutritional drinks such as Ensure. Yes, those beverages have a lot of refined sugar in them but where malnutrition is a problem, I would go along with my mother's oncologist's advice that it is better to keep the patient fed. Or you might consider making your own nutritional shakes that may be easier for your dad to eat. There are recipes that you can google.

On the pain management, I would seriously consider acupuncture. Acupuncture has no serious side effects; it's not addictive and it's not invasive. I can't attest to its effectiveness personally, but it is definitely something I would have my mother treated with if she suffered side effects from the chemotherapy. Fortunately, she's been spared of the side effects.

Take care.

Diane411
Posts: 13
Joined: Aug 2006

Kaitek,

Thank you for your encouragement. I have stopped looking on the web for new information. Every website bascially has the same info. I am going to look into home made nutritional drinks. Dad tried Ensure, too thick so he watered it down. He's having a hard time dealing with the taste. Maybe we can spruse it up a little with some watered chocolate syrup.

I called yesterday about a acupuncture. I want to set him up an appointment, but I'm wondering, how do you know if their a good acupuncturist or not? I've asked around and no one seems to know about acupuncture.

Thanks, Diane

kaitek
Posts: 156
Joined: Aug 2006

Diane411,

You can definitely experiment with ingredients and find something your dad will find palatable. That way, too, you can add nutritional supplements. The blender may be your friend.

The acupuncturist should be licensed. Offhand, I don't know the organization acupuncturists should be a part of. I'll have to look it up. I would ask your dad's doctor if he could make recommendations. Lot of doctors are willing to work with homeopathy and natural, alternative treatments to supplement the radiation/chemotherapy. In fact, in a local cancer center, they offer those natural treatments in conjunction with the routine medical approach.

Be sure that the acupuncturist uses new disposable needles.

If you still don't have an acupuncturist reference, I'll see what I can find for you next time. Which city do you live in?

Diane411
Posts: 13
Joined: Aug 2006

Hi Kaitek,

I hope you get this message. I'm having trouble navigating through this website. I would like to e-mail you and others, but can't figure out how. I'm really not computer illerate, but I keep running into roadblocks. Isn't there a way to directly e-mail people? I went to the user directory to try to e-mail you, it told me your web page hasn't been created. I couldn't find anything on this page about e-mailing direct.

You seem to be very knowledgable on the lung cancer topic. I'm trying to be, for my dads sake. I hope your mother is doing well.

Hope to chat with you soon.

kaitek
Posts: 156
Joined: Aug 2006

Hi Diane,

To email me, all you have to do is click on the envelope icon below my message. That should direct you to a screen for you to draft your email message.

Yeah, I haven't created a webpage yet. I'm not sure I will in the immediate future. I'd like to finish my mom's treatments before I write up our story.

If you still have problem emailing me by tomorrow, I'll email you and then you can just hit Reply.

I don't know about my being that knowledgeable. As the nurse practioner said to me, this whole lung cancer can be overwhelming. I'm reading up what I can but it can get quite confusing with all the conflicting research. By research, I'm speaking mainly of the things we can actively do to help fight the cancer and not just be passive with the chemo treatments. I'm learning a bit from my mom's oncologist, as well, when I ask him questions. I've mentioned this before, he can be a bit robotic and clinical in his manner. But it's nothing from the norm. The pulmonologist my mom was seeing was perhaps too personally engaging and laidback (he was the one who was arguably too conservative in diagnosing what was causing my mom's fluid accumulation), while being short of answers. I had to speak more with his nurse for answers to my questions.

I loved the intervention radiologist that tapped my mom's lungs in the ER. Gosh, he was so attentive when he would listen to my ramblings about my mom's condition and symptoms and my questions even as he was doing his job. There was such a caring, compassionate tone in his voice that I wish he was an oncologist! Another ER doctor was somewhat like him in listening and talking to me with such care (though he kept leaving to attend other patients and forgetting to come back to what he wanted to finish his discussion with me).

Thank you very much for your good wishes. I wish your dad the same. I must say that I am taken aback by the rarity of your dad's cancer. I had never heard of it, though I had been extremely alarmed whether my mother's cancer was partly due to asbestos exposure. I read about the asbestos content in vermiculite, the cause for the shutdown of the Libby mines. Many of those mineworkers succumbed to mesothelioma - a form of lung cancer. And vermiculite still is sold for consumer usage in potting soil (Martha Stewart loves that stuff). Awhile back (after 1990 when the Libby mines closed), I had bought a small bag of pure vermiculite. I didn't use much of it and left it in our shed. I don't know if my mother messed with it. Then, I wonder if our attic was insulated with vermiculite. Anyhow, I asked my mom's oncologist if he knew if asbestos was a cause. He answered that recurrent asbestos exposure such as those working on ships were more likely to develop lung cancer. So I took his reply that it wasn't likely the incidental vermiculite exposure would be a risk.

Having said that, I am sorry your dad unwittingly exposed himself to asbestos that in turn developed into lung cancer. I hate the fact that in the States, we are so behind the ball in protecting consumers and citizens. The European Union and Japan are often much ahead of us in banning hazardous and toxic materials.

Regardless, we must be proactive in enhancing our parents' medical treatments. I don't know how effective the side therapy but at least we don't feel completely helpless.

I thought of something that might be helpful for your dad in his swallowing difficulty. If he has mouth sores (a common chemo side effect), you might have him use a straw to take in food. In that vein, you may consider making him soups or using a juicer to provide him the nutrients in vegetables and fruits.

I'm looking forward to chatting with you.

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