Don M

I am sorry to hear of your dad's bad news. I hope he responds well to his treatment. Don M

I have been told that Medicare approves of cyberknife for use on lung tumors and so I think they would approve of liver tumors too. I think if Medicare covers it that would be good to point out that in an appeal. Also, I have read that most insurance companys have RNs, not qualified experts, who make these decisions, and that you can usually prevail if you get a preponderance of expert documentation. Don M

Hi: I am afraid that you are heading for difficult territory. Your husband may have brain mets. I guess my opinion is that having a disease like cancer not only affects the patient, but the rest of the family. I hope you can talk your husband into at least treating the symptoms. It will make life much more bearable for everyone. I am afraid that there may come a point where you will have to be the one who decides on care and not him. Be prepared for this eventuality. But, I hope you can meet your husbands wishes and see it tthrough to the end without further treatment or testing. Don M

Radiation pneumonitis is likely although it could be fluid. It is inflammation that may or may not go way eventually or could change to radiation fribrosis, a permanent scarring. Doctors sometimes prescribe steroids to halt the process of inflammation and so minimize permanent damage. It has its own risks though. Don M

In my opinion, ct scans are an important part of early detection. If I had not had early detection, via a ct scan, I would be in a worse situation today. I think the most often criticized aspect of ct scans is that there can be non malignant nodules that show up...whatever. I would rather just sort through them than miss a malignant tumor altogether. When it is time to be rescanned, the docs always use the term "restaging" for insurance purposes. Don M

Hi Yvette. I hope your dad continues to get good results. Don M

Welcome Lynne. I felt fine when I heard about my cancer too I just had to take the medical people's word for it and seek treatment in the midst of my disbelief and shock. It looks like you have a shot at a cure. don M

Welcome Diana. I hope your husband continues to get good results. Don M

Hi, welcome to lchelp. I think I would pursue a biopsy regardless of what the PET scan says. Sloan is always a good place to go to for a second opinion. But you might consider going to a facility that has a new technology called "SuperDimension Bronchus". Apparently they don’t have it yet at Sloan. It is a new system that uses bronchoscopy techniques to navigate the entire lung to find suspicious masses and take tissue samples. Until now, bronchoscopys were often inconclusive because they could access only about one third of the lung. Now they can go anywhere. With the various areas of concern in your husband’s lungs, the SuperDimension Bronchus may be the way to go. They have the technology available at St Vincent’s Comprehensive Cancer center in NYC. Here is a link. http://www.svcmc.org/body.cfm?id=1218 Don M

Hi Sonia: I am sorry that it has come to this. Just keep on loving your dad and do the steps necessary to make him comfortable and safe. Don M

I asked my surgeon if I could have my lung in a jar. He said no, but I got to keep my rib. It is in my desk drawer, along with a few teeth. I want to have as much of myself together as I can when I die. Don m

Thanks Dr. west. don M

I am sorry you did not get good news. I know how disappointing it must be, but you are on a good treatment path. I really don't know which would be the better choice, but I have heard that the carboplatin taxol avastin is effective. I checked velcade on line and it seems promising too. I guess you may or may not get the velcade though. Don M

you know, I think if I had stage 4 disease with limited mets, I would take standard treatment to control the disease and kill of the residual disease with cyberknife. That way I could conserve my lung capacity. I would not lightly give up a lung for the remote or average chance of a cure. If the odds are greater that there would be a recurrence, with the stage 4 situation, I think I might prefer to manage it with cyberknife. I don't see why this would not be a reasonable approach if the mets are very limited in the first occurrence or any recurrence. Of course, giving up the adrenals and using a scope is not as drastic as bye bye lung. Don M

I had 4 rounds of alimta. I had fatigue and shortness of breath. It was not too bad but I was glad when it was over.

I think the lingo is a little vague when we talk about recurrences. I think technically a recurrence is the same cancer popping back up. If that happens, the odds are that it will pop back up again, but not always. If you have a new primary instead of a recurrence, then your chances of never getting another cancer are better. I think that generally speaking, if you have another cancer in a a year or less, it is probably the same cancer. In my case I have had two cancers come back within 2 years of the original cancer. the pathology of the second cancer described as being slightly different from my first cancer, but I am told that the cancer can mutate, so there is no knowing for sure. I never had a biopsy of my 3rd cancer, but the odds are that it is a recurrence. However, I prefer to think of it as a new primary and that I won't have any more cancers. My last 2 scans have show no new disease, but their is still uptake at the site of my 3rd cancer. I have another scan March 12. I am convinced that the uptake will be gone, the tumor greatly diminished and no new disease. Don M

I know of at least one person who had stage 4 lc that involved distant mets to the adrenal only had surgery after the disease was brought under control by chemo and radiation. I can't remember the details. It has been over a year since I read their story, but I think they did the surgery at Columbia Presbyterian Hospital. Don m

Jeez Lilly. I hope you get the 2 offices to communicate a little better. Your onc should be ashamed of himself if he is acting as a stumbling block. I told my local onc at one point that I wanted a second opinion and he was very helpful. he recommended Dr. West to me. I hope you get something going quickly. Don M

If your dad just has the one 4 cm tumor in his lung, he is very likely a candidate for cyberknife surgery. Cyberknife surgery is often done for those who cannot have conventional surgery and can be curative if the cancer is early stage. Here is a link where you can ask radiation oncologists about your dad's situation: http://www.cyberknifesupport.org/forum/default.aspx?f=6 Don M

Well Barb, since you asked... I don't think we "go" anywhere. Going somewhere is activity that we practice in our space-time experience while alive. After we die, there is no place to go to. We are everyplace. Of course, I don’t really know for sure and neither does anyone else. But the metaphysical babble I rattled off above is just a good an explanation as any. One thing I am sure of, that no matter what our faith or religion, there is going to be a surprise. There will be an “ohhhh, I get it now”. The trick is to try and get it before you die. Oh...one more thing. To me, the notion that when we die that it is lights out, the end, nothing but worms and a rotting corpse is absurd. We go on. Don M

I am sorry to hear of your dad's bad news. Why aren't there other options available? Maybe it is time for a second opinion. Don M

I am glad everything seems to be ok. keep on killing the tumor. don M

You could also consider cyberknife. I think it is less intrusive than RFA. I also think Dr. West knows about RFA. As I recall, he told me once that RFA can affect tissue behind the tumor, damaging it. Cyberknife affects the tumor only. Here is a link to Dr. West's site: http://www.onctalk.com/forum/ Here is a link to a cyberknife site where you can talk to radiation oncologists. http://www.cyberknifesupport.org/forum/default.aspx?f=6 Here is a link to the manufacturer of the cyberknife system. the website includes a site locater for cyberknife centers. It shows one to be in St Louis and another in Springfield. http://www.accuray.com/SiteLocations/index.aspx Don M

woohoo indeed. It looks like you are on your way to a cure. Do M

Hi Shelley: Your mom is still receiving a good treatment even if the oncologist referred to it as palliative. I think it may be a good idea for you to run your mom's situation by Dr. West. But, I would guess that the cancer is too massive to respond well to radiation at this time. It might be better to do chemo, look for some shrinkage so that the tumors are small enough to target, and then maybe do radiation. If radiation is a possibility in the future, maybe your mom should be doing carboplatin taxol instead of carboplatin gemzar so as to avoid any radiation recall. Here is Dr. West’s link: http://www.onctalk.com/forum/