cat127

If you check out my signature, you will see that my sister had it done. Last June (2008), after a January attempt at surgery to remove her upper left lobe to get the tumor out. She is 3b but after weekly Carbo/Taxol and about 68 Gy of radiation, her mediastinal nodes were sterilized and her surgeon was willing to remove a lobe, though not the whole left lung. The tumor was, unfortunately, a bit in both lobes, so no removal. She started on Tarceva but then I took her to another hospital system where they had cyberknife, and we did that. Each scan since then has been better than the last and her April one showed no uptake at all in the tumor.

I LOVE this actress. Ned - she was Martin Sheen's secretary who was then killed in a car accident in the first car she ever bought herself. It led to one of the great scenes on that show, filmed in the National Cathedral, with Martin Sheen railing against God partly in Latin. http://www.youtube.com/watch?v=FScv89J6rro Here is a clip from one of my very favorite episodes. She joined Toby at the burial of the homeless guy who was found with Toby's coat on, which he had donated but accidently left a card in so the cops called him. He finds out the homeless guy was a Korean War vet and Toby was so angry that he fell through the cracks. He pulled strings to get him buried in Arlington on Christmas Eve. Yeah, I kinda liked that show.

I don't think anyone here would think calling 911 was extreme. Good on ya for thinking that fast on your feet! And just all around WAY TO GO! This was a hard won battle for you, but you clearly were not taking no for an answer. I like that! Great to read this update!

Just to answer the drug question - it isn't a new drug. Just that the FDA gave approval for the use of Alimta (pemetrexed) as a continuing maintenance therapy rather than as just a 4-6 cycle regimen. I do believe though that many doctors were already using it that way. The biggest impact this would likely have is insurance approval. And no, it isn't awful that you need a break. Caretakers need to take care of themselves too! Enjoy your trip, and know that things are being taken care of back home, and the worst case scenario, you cut the trip short and come home. But odds are that it will be a nice quiet week at the beach, which you well deserve!

I'm always fascinated by recumbents, and how the folks riding them can FLY. Cool pictures, thanks for sharing. And yes, very inspirational! And isn't riding a bike, well, just like riding a bike. ha ha ha To those of you who think they were confusing years ago, trust me, they are different again, so maybe even more confusing? I couldn't change gears on my road bike for the life of me when I got it 2 summers ago. Now I can't imagine any other set up. Fixed gear and coaster brakes, bikes designed as "comfort bikes", are all the rage these days! And painted real pretty too. This reminds me that I plan to go by another bike this week. Starting a bit of a collection!

Randy was just bumping this thread up, in hopes of finding some help for the original poster. I guess the one thing I would mention is maybe trying www.livestrong.org, see if they have any input or advice. I would toss the net as far and wide as I can to any and all outreach programs. It seems terribly unacceptable that you are dealing with this as well as the cancer itself.

My sister is 3b also. Had radiation to the tumor and the mediastinum (7 weeks for a total of 68.5 Gy), along with weekly carbo/taxol for about 16 weeks. Esophagitis was never a problem. She had little trouble through the whole treatment and much to her chagrin, she didn't lose an ounce. Here's hoping your mother does as well, it is not an uncommon story so she very well may! Kelly said she did alter what she ate as some things bothered her throat, but for the most part, it was life as usual. She even joked that she never felt better than she did on chemo day - all the premedications made her feel really good. We often planned things for that day knowing how well she felt. Good luck!! I am a bit different from most folks here about stats - I'm a medical scientist, I'm all about numbers. But I think a good rule that I've adopted when dealing with my sister is that I never lie to her, but I also never volunteer information. If she asks me something, I answer honestly but with perhaps the best spin possible. She knows the stats for 3b, but we also were quick to emphasize that she is not a statistic and that stats come out of a very wide range of information. And 5 yr survival data is by definition, 5 yrs behind. She has learned a lot about bell curves from me through all of this. And of how we are working very hard to put her in the far right tail of the bell curve. So far, so good. If your mother hasn't asked, don't volunteer. That would be my advice. I see your question was about the dr. From what I've seen here, doctors seem to run the gamut of styles. Kelly's doctor was NOT going to say anything. She ended the appointment saying - so what are my chances. Honestly that caught me off guard. By nature of my job, I know she knew I knew those things, but she never asked me in the weeks prior to the appointment. When she did ask, her Dr was hesitant to say, gave her many caveats as to why maybe the info isn't all that relevant, but then said that since she could go home and google it, if she wanted to know he would tell her. And he did, with many qualifiers and in the best way I could have thought. He's a gem and we are lucky to have him. But I read people here whose experiences weren't as good. So it is hard to say about your mother's doctor, if he will volunteer it without you asking. Perhaps you could speak to him first and say that you don't want to hear numbers, you just want to take it one step at a time.

Birthdays are hard enough, but I could see how this one would be even more difficult. My sister told me early on - I don't want to die in my 60s. So I told her - well then let's get you to 70. But I so worry about that date too. I hope you find comfort in the love and memories that stay with us long after we lose someone. But I know on days like this, when your emotions are so very raw, it can be very hard to find that comfort. I used to just aim to get through those days (sometimes by just staying in bed). So here's to tomorrow, may it be a wee bit easier, since that is the way it works, baby steps towards feeling whole again.

I've been updating my signature line. But in response to Katie's request for folks to post and to spread some hope, maybe I'll make a post specific for it. Kelly had her last scan in April. At that point, she was nearly 24 months from diagnosis, putting her into the right hand of the 'median survival' bell curve. So when she started coughing again, and her voice was getting gravely - well, I began to panic. She had been on Tarceva at that point for about 14 months (at a dose of 50 mg for 6 of those months) but at the 4 months into it stage she also underwent cyberknife treatment to the tumor. I was on pins and needles waiting for Kelly to make an appointment to see her Dr to get the scan results. I already planned my trip home, rather certain that I would be needed to join in the conversation of where to go next. Imagine my shock and sheer joy when I got an email from her with the report attached. (Don't ask me how she got them to fax it to her before she saw the Dr.) I read the words "the area of hypermetabolic activity previously noted is not visualized today." I swear, I almost passed out in my office. I responded to her email saying - this was SO not what I was expecting. She responded - can I do the happy dance yet? Now the report showed uptake in her tonsil, but the ENT has been doing some tests and truly does not think this is a real finding. He thinks it may have been a swallow at the right time, causing the muscle to fire, and being caught as uptake that way. He thinks her cough is likely reflux related. It certainly isn't due to the tumor, and nothing new was found. Her Dr and I are both in the "cautiously optimistic" phase. Kelly has had her scans at both UPMC and Allegheny General, due to her onc at one place and the cyberknife guys at the other. So we are looking at different machines etc. So the Dr is waiting for another scan before making any conclusions. Next scan 4 months later, so sometime in August. Since Kelly will yet again be with her 'cycling and running team' at the Livestrong Challenge in Philly, I'm kinda hoping we scan right after the challenge rather than before. Because no matter how good the previous scan was, the worry-wort in me always wins. Last year at the Challenge she was in the midst of a horrid Tarceva toxicity, and was really not feeling well. Now, well she has some knee pain due to Lyrica (how wrong that a pain med is causing pain) that may keep her from walking the 5K with our brother. But other than that, she's feeling pretty darn good and is really looking forward to our weekend in Philly. So - just wanted to say - you just never know. We aren't naive, we know the other shoe may drop. But here she is 26 months since diagnosis and she has not yet had a bad scan. Even she doesn't realize how amazing that is. And after first line chemo/radiation didn't stop the uptake in the tumor, I never expected to see a scan report saying there was no uptake seen, not this far out. I'll feel better when I see another scan that says that. I can't help but think that our pursuit of cyberknife made a difference here. Apparently her hospital is going to be getting the equipment too, so her thoracic surgeon had all sorts of questions about the fiducial implant the last time she saw him. She's like their little guinea pig I think. And how can her dr look at her and not think - maybe I have other patients who should look into this. I hope this helps some folks out there. To tie in with another thread - one could argue that Kelly was no longer being treated with curative intent after first line didn't wipe it out and the surgery failed. But look at her right now. Not so bad. We learn to live in the here and now. When folks ask me how we are doing, I've taken to responding - right here, at this moment right now, we are doing really well. So well that Kelly is following up her trip to Paris with me and our other sister, with another one this fall with her husband and our cousin and her husband. GO KELLY!

My sisters and I flew to Paris in October, while Kelly was on a little Tarceva drug holiday. I was a little pestering to her about moving around, and I think she wanted to shove a pillow in my mouth a time or two , but other than that, no problems. I made her move around a bit due to the increased risk of DVTs with flying and increased risk of them with cancer. So walking around, moving the legs to pump the blood back up, that is a good way to try and decrease those risks. One of the very first posts I ever read over at cancergrace.org was someone asking Dr West if Stage 4 lung cancer patients could fly. His response was something like, with the help of a plane they can. And I knew I would enjoy his input since he wasn't about to lose his sense of humor. I told my sister about it and she told me that knowing if she could fly overseas was very important to her. She was thrilled to know that she still could. In fact, she's already booked her next trip to Paris for this fall. Good luck to you and your mother!!

The chemo drugs/pre meds can cause restless leg, which could be seen as twitching when sleeping. Another thing I think people will notice is that once you have that diagnosis on the table, you start to notice EVERYTHING. Pains you would never have made a note of, you wonder could that be the cancer. It is possible that this isn't anything really new, but you never noticed it before. I talk to myself all the time, sometimes I argue with myself, sometimes I tell myself we are no longer speaking to each other. I guess to me, talking to yourself is pretty normal. I always second the idea of asking over at cancergrace.org - can't go wrong by doing that!

here is the link to part two. My sister, also in Pittsburgh, has been on Tarceva one month less than this woman. Wish they had profiled her too, she's still doing very well on it despite having to reduce to 1/3 the dose. http://www.post-gazette.com/pg/09173/979036-114.stm

I don't think you would have to worry about that Judy. You aren't stopping the effect of Tarceva at the EGFR of the tumor. In fact, I would doubt you are stopping it at the skin either, you are just mitigating its effects at the skin with creams and medication. Look at it this way, the rash is sort of a marker that the drug may be working well, it isn't causing the drug to work well. If that makes sense. Sort of like if you take the batteries out of your smoke alarm and take away the signal that there is a fire, doesn't make the fire go away. (That's me trying to speak about science in civilian, does it work?)

Do keep in mind that pneumonectomy is not the same as lobectomy. My sister's surgeon was willing to do a lobectomy, though once he got in there and realized the only way to get the tumor was to take out the whole left lung, he closed her up. He would not do a pneumonectomy on her due to her mild COPD and the increased risks with removing the whole lung. Not that it can't be done successfully, just don't want you to compare the results of people here with a lobe removed to what you might expect with his whole lung removed. She agonized over the decision to even try though. I can totally understand why you are feeling so unsure. Her surgeon sort of tried to talk her out of the surgery actually. He argued (and there are research papers out there that support this) that the survival curves for patients in my sister's position (3b who respond well enough to first line chemo/radiation to be eligible for surgery) are better than the average 3b patient anyway and there is a good chance that they would do equally better than other 3b's if they did not go the surgery route. That made the decision all the more confusing for her. It was the oncologist who helped convince her to at least give it a try. Now that we sit here over a year later with no signs of anything new or any progression, I so wish they could have successfully taken out that dang tumor! I second (third, fourth?) the idea of asking over at cancergrace. Maybe they can give you enough info to help you all figure out which route is best for all of you. But I do think it ends up coming down to a leap of faith. That was the phrasing my sister kept using. Good luck to your Dad and your family. I remember how tough it was to make that decision and I think I can say my sister still has no regrets about trying, just wishing it could have been done.

Definitely a great idea! My father and uncle - Royal Canadian Air Force - WW2 My uncle - US Army - WW2, Korea and Viet Nam His son - US Air Force - Operation Desert Storm All of them are now deceased. Two other cousins - Royal Canadian Air Force and Royal Canadian Navy - UN Peace Keeping Forces My big brother - US Navy River Rat in Viet Nam My younger big brother - US Army, Viet Nam era I also worked for nearly 10 yrs as a DoD scientist, I can't count all my friends who served and are still serving. Thank them one and all, and keep them all safe! And may those I love who are gone rest in peace.

It is not uncommon, chemo attacks rapidly dividing cells such as a tumor, but other rapidly dividing cells include the bone marrow. You say her "blood count" changed from 9.6 to 7.6, but I think you mean her hemoglobin, as those numbers don't jive with a red blood cell count. Her starting hemoglobin was already low, the low end of normal would be about 12. Doctors will often give drugs to increase hemoglobin if it dips below 10. Given her low starting point, I would imagine that is why her doctor is going right to a transfusion. I'm sure some of the folks on here who have had transfusions will chime in and help put your mind at ease. Everything is all so very scary in the early stages. It does get a bit easier, I promise.

I can be of no help as far as that goes - but wanted to give a little hello - my family is from Hamilton, so shout out to Ontario!

There are some other errors in the text, showing that the journalist that wrote it doesn't know enough about the process of clinical trials and the FDA. That seems to often be the norm when journalists try to talk about science or government regulatory issues. But that doesn't negate the information in the article, which is very informative and admittedly I've looked at the design of the trial to see if my sister would qualify (I don't believe so). So thanks for posting it. The errors aren't your fault, they are the problems with the person who wrote it. As a scientist, I sometimes get a little frustrated at the way journalists present scientific information to the general public. Thank you though for this update. Although my read of the inclusion/exclusion criteria has me thinking my sister would not meet them, I think I may still call and talk to them and be sure.

As Ned said - there is a prescription that they can call in. Magic mouthwash, magic swizzle, goes by a number of names. It is a mix of a few things and can be very helpful for any esophagitis from the radiation. Call your Dad's doctor and see if they'll call it into your pharmacy. Good luck!

I always liked Phil, but I like him even more after today. He was just amazingly gracious and kind and concerned that everyone riding with him was safe and having fun and that everyone got a picture or an autograph or whatever. Just a really nice guy. And doing something quite spectacular. I can't imagine all that biking.

If you watch the Amazing Race, you will appreciate my latest short bike ride and riding companion.

I was going to say I bought my road bike on a whim - but that just pales in comparison to buying a motorcycle on a whim. But I did do that - summer of '07, stopped in the bike store and then walked out with about $1000 of bike (which is really quite cheap for a road bike). I buy a LOT of scrapbooking supplies and they bring smiles to my face when I use them and see a fun new scrapbook page.

My sister Barb and I did a charity bike ride on Sunday. 40 hilly miles for a women's heart health charity. As it turns out, Sunday would have been our Mum's 90th bday, and she died of vascular disease. So we rode in honor of our sweet, sweet Edna Mae! Always good to get a tough ride under our belt this early. We have our big Livestrong Challenge ride in August, 45 miles over some of the same hills as this ride. I think I need to move somewhere really flat.

I am so very very sorry for your loss. And I totally understand your description of "perfect and beautiful and desperately desperately sad". That's a very eloquent description. You and your family are in my thoughts and prayers.

Oh my gosh I think I'm in love. I lost my little gray/white tuxedo cat in January (he of my avatar). I've recently just started missing having a PET, rather than missing having Bailey. Those kitties are just adorable!!