cat127

Given his lymphoma, I'm curious if he is being treated by the same doctor caring for him for that cancer? If so, I wonder if a doctor who specializes in lung cancer may have a different plan. The idea of treating stage 4 lung cancer as a chronic disease, that you may not cure but you may be able to treat for many years, is relatively new in the lung cancer world. A good friend of mine that is an oncologist (though working in drug development, not treating patients) was very surprised when my sister was first diagnosed in 2007 and he was paying more attention to lung cancer at meetings, mainly because of me. He was shocked at how many more drugs there were for treating it and how much longer they were able to keep treating it. That is very evident by the folks you will see on this board. I would second the recommendation to go to cancergrace. And I would also recommend seeing an oncologist that specializes in lung cancer, if you haven't already. And if you have, I'd probably want to go talk to another one. Also, given that stage 4 is technically rarely curable, the use of the term palliative shouldn't be taken as meaning giving up. People who are treated and lived with stage 4 lung cancer for many years, are technically being treated palliatively, rather than curatively. But there are many out there living many years and with a great quality of life. I would want to know what this doctor means by 'palliative'. I'm sorry you are going through this and I hope folks here are able to both help you and give you hope.

This was awesome!! I shared with many friends. Saw on youtube another to this song, done at the pediatric cancer ward at Seattle Children's Hospital. It's a great song for videos like this. Thanks for sharing.

So sorry Donna. Very unfair for your family to have to deal with this again. Prayers that his Stage 3 is as responsive as my sister's has been!

A quick search of clinicaltrials looking for SCLC and NY hit on a few drug trials. Such as this one: http://clinicaltrials.gov/ct2/show/NCT0 ... ANY&rank=1 There are a few other drug trials there too. I wonder if trying to call the contact numbers on the trials is another avenue to explore for getting a foot in the door at MSK? I have zero experience with that, just sort of thinking out loud.

Eric - I love how widely travelled you are, making connections with lung cancer warriors all over the world! You can bet I'll post your invite to the 10-yr Paris celebration - especially if you come bearing bubbly!

Two weeks ago, about 80+ people gathered to celebrate that on May 19th, my sister hit the 5-yr mark since her diagnosis of locally advanced (3b) NSCLC. We had a Paris theme to our party, with a gorgeous cake made by a local French pastry chef and cookies in the shape of the Eiffel tower. I told everyone the 10yr cancerversary party would be held in Paris so they should start saving now. We toasted her with sparkling white wine, and with one bottle of an expensive champagne that I bought in Paris two years ago, specifically for this party, yet scared that the party wouldn't happen. But it did, and it was AWESOME. When she was first diagnosed and heard what the statistics were, I told her - well someone has to beat those odds, why not you? And beat them she did. It was hard to feel hopeful in those first months, but people on this site always gave us reason to believe. I hope her story is able to give folks that are new here reason to hope and believe as well.

This makes me incredibly sad. A friend was telling me that she has a friend who works with the American Lung Association who was always talking about how helpful Kathryn Joosten was to them. She was one of the few celebrities who was up front and vocal about lung cancer. Plus, she played some great TV characters. http://www.eonline.com/news/kathryn_joo ... ves/320735

Such wonderful news, thanks for sharing that with us!

Kelly hasn't taken Gemzar but I know that the label for it calls for a 30 min infusion. Which of course doesn't include any premedications. Not sure if that helps at all, but thought I'd toss it in there.

I'm going to pick this up and check it out. My 26-yr old nephew was killed a year ago and while my sister-in-law seems to be doing as well as can be expected, my brother is really struggling. I just don't know how to help him. I'm going to check this out and maybe send it to him. Thanks!

Changes in the voice are not uncommon due to the recurrent laryngeal nerve and how it is located in the chest. It is not uncommon for it to get damaged either by a tumor pressing on it, or when they do the mediastinoscopy to biopsy lymph nodes, or I would imagine during lobectomy surgery too. My sister all but lost her voice when she had her mediastinoscopy. There are things an ENT can do to help strengthen the voice if it doesn't come back. My sister's eventually did, though I do think it is a bit gravely since then, but it is back in strength. That's a long answer for - I would call this normal.

Thank you for stopping in and providing that great inspiring story! And WOOOO WHOOO on 8 yrs.

I second that emotion!

That really is a very inspiring story. And you have a very wonderful way with words and of telling the story. Truly an inspiration to anyone, new here or not. Thank God indeed for second opinions!

I and others would recommend you go to cancergrace.org and ask your question of the doctors there. They would be better able to tell you an answer to that. My gut instinct though is that you are right to be bothered by this reaction from the second doctor. I've never heard of anyone here or in my real life who had one done, it was deemed negative and the doctor said they didn't believe that. I also disagree with the 'almost always' comment, and I'm sure there are quite a few people here who have had that test and it was not cancer. There are other reasons for that fluid and not just due to cancer. Definitely ask over on the board at http://cancergrace.org/ and I'm sure they will have good advice for you. You are a wonderful friend helping out with this.

This is so very heartbreaking. My heartfelt sympathy to her husband and Jack and to all her family, loved ones and friends. So terribly wrong for such a young boy to lose his Mum.

WIthout knowing where exactly you are in WV, I just wanted to add that you can also look into an oncologist in Pittsburgh. My sister's dr is a lung cancer specialist at Allegheny General and we adore him. He's a great mix of kind/compassionate and aggressive. We wouldn't trade him for anything! UPMC has a lot of oncologists as well.

The docs over at Grace gave you one good option - a rheumatologist. If they can't find anything, then the other option is a pain management specialist. My sister had unexplained pain that was only finally handled by getting her to a pain specialist. While she spent a lot of time worrying it was due to cancer, she's had at least 2.5 yrs worth of scans that still haven't shown anything new. She also eventually weaned off the meds with the pain specialist and now just has occasional twinges of the same pain. We've never known the cause of it. In the end, finding the cause wasn't as important as getting her pain-free or at least reducing the pain as best as we could. She was very lucky to end up off the pain meds and without the pain. So much so that they made quite a fuss over her at the pain clinic. But the pain clinic can definitely help make pain much more tolerable. No one should have to suffer with pain like that. I hope someone is able to help your husband find some relief from it.

Oh I like the sound of that cast!! I'll have to keep track of its progress on imdb.com I love when movies film in my hometown. I follow all the gossip on line. Emma Watson finished filming a movie in Pittsburgh this summer and they filmed a scene for it at the movie theatre at the end of my street. They said she was so very nice and friendly and hung around talking to the locals. On TV recently she was raving about how much she loved the city and how nice people were. Jake Gyllenhall filmed a movie there a year ago and he too raved about how much he loved the city. A lot of people don't know what a great town it is, so it is nice when Hollywood folks say kind things. Maggie Gyllenhall has been filming a movie in Pittsburgh too and my brother-in-law spent two days filming as an extra. Can't wait to see if he ends up on the cutting room floor. Yeah - the name of that website cracks me up. When I first found it I was all ready to be offended, thinking it was someone making fun of my hometown. Now I love checking it out periodically.

I think he started out with us maybe? I checked http://www.imdb.com (my resource for all things movie) and there is a good long list of locations. I think they are gone from Pittsburgh by now. http://www.imdb.com/title/tt1345836/locations Yep, searched a bit more and he's left the city. Here are some shots from my hometown though. He must be on his way over the Atlantic now. http://boringpittsburgh.com/hollywood/b ... and-props/

Batman is also being filmed in my hometown, Pittsburgh. My family has commented about seeing the batmobile around the city. I know they filmed in our football stadium for like 8 hours, in blistering heat, and the extras has to wear clothing like it was winter. That's some batman dedication. I have spent a lot of time in Philly. So now, can I also say I've spent a lot of time in Glasgow? Hmmmm, something tells me I'd still rather actually see Glasgow in person.

Oh I'm so sorry to read this, but yet so glad to know she was sitting there so proudly when she got to see Nick graduate. That was so important to her and I'm so glad she got to be there. Patti was a wonderful person and always so kind to everyone. She was always such fun during the Tuesday night chats that I would pop into in the early days of my sister's diagnosis.

So today is 4 yrs since I got the call that they knew Kelly had lung cancer. She's my hero! She's doing great. Last scan showed no activity in the lung again, but a little activity on a rib. When her Dr heard of a horrible spill she had taken at work, falling with her arm out and on the side where the activity was, with pain in that general area, he felt perfectly fine that she had broken it and recommended no change. Now she's feeling the need for a Tarceva break but also a little worried about a nagging cough (though she had a nasty cold last month). So I'm trying to get her to go to the oncologist and give him all that info, to which I think he'll want to move the scan up from July to now, just to play it safe. Then, when that scan comes back just like all the others, he'll more than support her in a Tarceva holiday. Though I say regardless of the scan results, she's still amazing! But I'm being the optimist here, because there are plenty of reasons for the cough. Heck, if I get a cold, the cough will linger for months unless I go in with 21 days of prednisone. She seems to need to wrap her mind around changing the schedule of the scan and what that might mean. I can understand that, so I'm not pushing. Yet. I get that she needs to be ready to hear the news if it is bad, so I have to let her make the call. But doesn't mean I don't nudge. I don't want to hear bad news either, that's for sure. My signature below notes that at Christmas we buried our 26 yr old nephew, who was killed in a car accident. Feeling like I"m at my 'bad news' limit for now. Something I know all of you can totally relate to! At any rate, I am definitely still believing that this tumor was flat out killed by the cyberknife. On a side note, I got an email at work that the ASCO abstracts are on line now so figured, well that's as good a way to spend a lunchtime, right? So I put erlotinib in the search terms and it came back with 420 hits. I"m going to need a longer lunch break. Just wanted to check in and always in hopes that Kelly's story can help inspire or bolster others just starting down the path.

I think what happens is that different insurers, including medicare, have different levels of decreased WBCs or RBCs at which they will cover the cost of the shots that will raise those cell counts back up. I remember at one point with Kelly's RBC count the nurse actually said - do you have (insert whatever insurer)? Then said, oh good, they will pay for the epogen if your levels are 12 or below, but medicare will only do if it is is 10 or below. Now we didn't have that same experience with neupogen for her WBCs, but I could see there being a similar requirement. You said that this last go around the levels were borderline, so I assume they are checking to be sure that the levels are still suppressed enough and therefore the shot is covered by medicare. And that is an expensive shot, so you don't want to risk it not being covered. Not positive, but that is a possibility.

I'm so sorry to read this Lisa. I'm sure he felt equally blessed and proud to have you for a daughter.