cat127

The 'bluedevils' in your name makes me wonder if you are from Western PA. If so, and you'd like a second opinion, I can HIGHLY recommend my sister's doctor at AGH, who specializes in lung cancer. Just tossing that out there.

I'm sorry to read this NED but can't help think that those brain mets don't know who they are fighting with! Hoping like Randy that the WBR kills any cancer cells deader than dead.

EIGHT YEARS - there are not words to describe how awesome those two words are! Congrats!!!!

Esophagitis is pretty common when they are irradiating the mediastinum- the middle of the chest so therefore right over the esophagus. As others have said, mention it to the doctor. They can write for 'magic mouthwash' (sometimes also called magic swizzle). It has a number of different recipes to it but usually contains benadryl, immodium or kaopectate, and lidocaine. I used it myself once for a laryngeal inflammation that was very painful. It really numbs everything. Dietary changes can help a lot too. The radiation oncologist should be able to give your mom a lot of good advice once he knows of the problem. Good luck, and this too shall pass once the radiation is done.

Bikes do have a way of doing that! I had a Kona follow me home this year! Great looking bike, may you have many wonderful miles together!

Very cool! I know some folks from a cycling message board that did that ride too. And I know all too well the "started out too fast" concept.

Just to clarify - Megace - generic name megestrol, is a steroid. Marinol, generic name dronabinol, is a synthetic version of delta-9 THC, which is an active component of marijuana. Marinol was approved for use in the US by the FDA in 1985 actually. No idea about Canada (more accurately, don't know where to check for that like I do for the FDA). I once helped compile an annotated bibliography on marijuana research papers. It was a long time ago and at the time I remember reading that the pill form was not as effective at stimulating appetite as the naturally-occurring form. I don't remember anything about the nausea aspect though. Hopefully some folks on here who took Marinol will add some comments and give you good information.

I don't think you are wrong at all. Everyone needs to do what works best for them - that's my opinion. My brothers call me "cemetery people", as I like to go to my parent's grave and just sit and talk to them. My brothers say they don't like to go and they feel my folks around them anywhere. We're just different, no one is wrong or right. That first anniversary is tough. Do what works best for each of you and just hang on and muddle through it. That's all we can ask of ourselves, I think.

Greetings from le Tour.

sorry that I haven't been good at updating here. Saturday will be month 37 since Kelly's diagnosis. She had a scan last Friday and I got the report today. The tumor doesn't show any uptake on the PET and nothing new, other than the remaining tonsil lighting up but she's also sick so I think it is just a tonsil being a tonsil. She gets 6 months off until the next scan and her Dr said if it is like the last 5 or 6, he's moving her to yearly scans!

You should be able to see in my signature that my sister did Cyberknife for the tumor that remained after first line chemo/radiation that sterilized the nodes but left behind some active tumor. She weathered it like a champ and the only real issue was lying down on the table for the time it took. (back pain and some post nasal drip that was more annoying when lying down)

Lyrica worked like a dream on some pain my sister had. Fingers crossed that he has the same kind of luck!

Sorry about the termites - but I must say that you and Rosie look like it won't be such a hardship to hang out at a hotel by the beach! Enjoy!

Oh Barbara, I am so sorry to read this. You have both been so courageous through this horrible battle. And you have both been an inspiration to so many of us here. Thoughts and prayers to you and your family in this difficult time.

You father would be so tremendously proud of you for taking something so horrible and turning it into something so wonderful for the entire lung cancer community!

I waited a bit to post here because of an odd finding that Kelly had in the last 3 scans - April, August and December - her right tonsil kept lighting up her PET scan. Although the odds were in our favor that this was not (1) a met from the lung or (2) lymphoma or (3) head and neck cancer - no one was really comfortable doing nothing. In April and August, the ENT examined her and said he just saw nothing that worried him. But at an appointment in late Oct or early Nov, he asked her - if this turns out to be 'something', would you treat it? She said to him - I've done everything I possibly can to beat this, why would I stop now? So they set a date for January to take the tonsil out. She was hoping the December scan would show it doing nothing, but no such luck. So the tonsillectomy was a go. She laughs when she says - how often do you have a doctor use the phrase "excruciating pain" when telling you what to expect. The main reason this is in the 'good news' folder is, that the reason everyone was determined to remove the tonsil is, that for all three of those scans, absolutely no measurable uptake was seen where the tumor is. You can see it on the CT, but not on the PET. In December, her doctor told her to wait 6 months before the next scan. Then he looked at me and said "next December, we're going to yearly scans." So - tonsillectomy was last week and although she never felt 'excruciating pain', she is hurting. But on Friday at her follow-up with the ENT, she was told that the path report came back negative. I said - well I guess sometimes a tonsil is just a tonsil. Now she's making a plan to get back on her stationary bike to get her legs ready for the 5K at this August's Philly Livestrong Challenge. My sister - she still amazes me!

Yeah, apparently a "non" was left out of that press release. Which may not seem like a big deal to those not in the lung cancer community, but we know what a difference it does make. I was looking at Kelly's latest scan reports and she heard me give a little "HA" sort of sound. She looked at me and I noted that the one report listed her as having small cell. Those 3 little letters have a habit of going missing it seems.

No prob Neil. I knew you knew, and I'm sure lots here did too. Just wanted to make sure for the folks just starting out on this journey and learning so very much in such a short time.

Just to further clarify - it was NOT rejected by the FDA. The FDA never released any decision prior to this announcement. It was rejected by their advisory committee, which is not the same as being rejected by the FDA. The FDA is not bound by the decisions of the advisory committee (though as the media often tells us, they don't usually go against the advisory committees) and the advisory committees do not make any regulatory decisions.

I'm so very very sorry to read this. I can say that my niece was widowed at the age of 32 and I think it has an added layer of grief that others can't relate to. I encouraged her to seek out a support group of not just widows, but young widows. Perhaps you, in time, can do the same. Until then, I'm so sorry for your loss and will keep you and yours in my thoughts and prayers.

Well it apparently is NOT lung cancer. On Regis and Kelly, Kelly read something this morning to clarify and said something like they had to remove a bit of his lung to remove the tumor but it was not lung cancer. So I give up trying to figure it all out. I feel like I'v spent more time thinking about Bryant Gumbel's cancer in the last 24 hrs than I have thinking of my sisters. I also did not hear him say that he was keeping it a secret, just that as it was going on, he was private about it and only wanted his family to know. I can't fault a guy for that. If he wanted to keep it a secret he could have given Kelly a different excuse for not dancing, or asked her to not talk about it on the air.

http://www.lungevity.org/l_community/vi ... 823#399823 It appears that he said it was a malignant tumor, according to the article I posted. I turned on the TV just as he was explaining about not being able to say how he was doing and that it would depend on what the tests showed if there were more things they would do. I quickly looked and this was posted moments after he said it on the show. So because I turned in a moment too late, I can't say for a fact that he used those words, but since this was posted literally moments later, I'm hoping they were using the words he did. But, can't vouch for that. Normally, I would have seen the whole interview, but silly work got in the way. Though now I maybe see what you mean - could be a met on his lung from another type of cancer. But given how he was talking very optimistically about hoping that nothing more would need to be done, I'm doubting it was a met of anything. But that was just my impression from the end of the interview, and who knows I guess. OK - more details at CNN. Sounds like he's saying in 'basic-speak' that some nodes were involved. http://www.cnn.com/2009/SHOWBIZ/TV/12/0 ... index.html

I just turned on the Regis/Kelly show and Bryant Gumbel was in mid-conversation about some surgery he had recently had. When he said something like - he couldn't say how he was doing since you have to watch and see and maybe he'd need more things done, etc - I thought to myself - that sounds like he may be talking about cancer. A quick google search shows me an article or more saying that he announced he had surgery to remove a malignant lung tumor. http://www.huffingtonpost.com/2009/12/0 ... 83844.html

Tarceva has been on the market in the US since 2004 (right around the time you were first diagnosed actually.) There will be no problem getting it prescribed and the company that makes it has a program to help people if the cost is prohibitive. While it does work better in people with an EGFR mutation, the studies show benefit in all lung cancer patients enrolled. My sister has been on it for 22 months and although we have not assayed her tumor for the mutation, she has none of the other characteristics that are indicative of people that respond well. (except for the female thing, she is female) She hasn't seen dramatic shrinkage, but the tumor was stable for a year and then for the last 9 months has shown zero uptake on the PET exam, so she has benefitted! Good luck and I hope folks here can help offer you lots of information and hope!

I can answer a few of your questions and this is the right place to find some hope, as you will hear from folks that have continued to kick lung cancer's butt despite the initial diagnosis. Palliative means that they are treating the cancer to alleviate the symptoms but not with the aim to cure it. However, not treating with curative intent is not hopeless. I once described this to a family member as - you can't 'beat' the cancer, but you can sure as heck beat it back down and hope to do that for as long as is possible. You will find people here that have been doing that for years. As to why only 4-6 cycles of the chemo - this is standard in lung cancer when you are dealing with the traditional sorts of chemotherapy. These drugs are toxic to healthy cells as well as the cancer cells. After 4-6 cycles, the attitude is that you have hit the point of diminishing return - the point where the drugs are more toxic on the healthy cells and are actually more dangerous than helpful. At the 4-6 cycle point, the risk begins to outweigh the benefit. But after that point, there are still other drugs that can be given, or the doctors could give him a break on the medications and monitor closely and then go with a new drug once the cancer begins to show any progression. It is all very overwhelming and everyone here really understands that. Understanding what all is going on helps a lot and you can learn a lot of that here. Don't hesitate to ask questions. You can also learn a TON from www.cancergrace.org - and I'm sure others here will recommend that site to you. ****** edited to add - I see you are getting a lot of good comments in another thread. Learning what you can and what things mean really will help you a lot. Knowledge is power, as they say. Just keep asking and folks will help you out. You will feel a little more in control if you at least feel like you understand things. Though everyone here can attest to the fact that nothing makes you feel quite as powerless as cancer. At least here, you can feel like you have taken back some of that power. Good luck, and hang in there. Lots of folks here to help and to support you!