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Dear Frank, I have not "talked" with you personally -- just read your posts and your responses to other people's posts. Always kind, always thoughtful. What struck me here tonight is all of the responses you've received. So many names and pictures I've never seen, although I've been actively reading here for weeks. That speaks volumes to who you are to everyone here. I sometimes hesitate to say "you'll be in my prayers," because it sounds so trite. But Frank, I promise that you and your family will be my primary prayer focus tonight. God bless...

Hi Connie, I'm sorry for the loss of your mom. It was beautiful to read how you've honored her on the days that were special to you both. The quilts -- wow, what a fantastic tribute. Just take your time, have patience with yourself, and remember why you're doing it. I want to thank you for your post. I'm very fortunate that my parents are both pretty healthy. Reading your post brought an awareness to me how important it is to cherish these times with them, and that maybe I haven't done that so much lately. P.S. You and I share a birthday.

Once again, thanks to everyone for the info. Even in this tread alone, I'm seeing a lot of differences. Debbie, thanks as always for all of your information. Hopefully it will help other people out there too, because - as you say - Alan's treatment has been anything but by-the-book! Leanne, I want to mention that our radiation oncologist told us to come see him regardless of what our medical oncologist said (they can definitely have different opinions). You might want to make an appointment with a radiation oncologist and get an opinion for your mom. I'm going to be doing some more research myself over the next couple weeks, so I'll definitely post here if I find anything interesting.

Randy, Thank you so much for taking the time to post this. It's so helpful. I'm feeling a bit stupid at the moment, but does anyone know -- is it standard practice to dose to a target hemoglobin concentration of 13.5 g/dL (as opposed to the safer 11.3 g/dL)? Or is the former dosage considered to be "pushing it?" I guess the best thing to do is print this report out and bring it to our docs, which is what I plan to do. Thanks again Randy.

That was very interesting about the story of Job coming up in that circumstance. What a lesson. Beth, I completely get where you're coming from too. That's different -- you're trying to help someone, based on your own devastating experience. The moment Bill was diagnosed, he emailed the few members of the family who still smoke and practically begged them to stop. (To my knowledge, none of them have.) I guess it's a combination of factors that cause the responses. I do think fear plays into it. I hate to think it, but if I'm being completely honest -- before this happened to us, I very well may have been one of those who asked the dreaded question.

Hi Wendy, I just want to say "amen" to your vent. I feel the same way every time I'm asked. Often the follow-up question is, "has he quit now?" When the answer is "he's trying," I get this look of disbelief. Can you even think of another illness that would give people this odd sense of justification when they probe into your family's personal life? Sometimes I tell myself it's a natural question and that people are ignorant of the effect they have, sometimes I'm not so forgiving. I still haven't found a good answer. If you come up with one, let me know. My hubby (screen name "bware21") did a post on this a couple months ago called "The Blame Game." I think it's buried down a few pages in the "General" section. As you can see here and you'll see there, many people share your frustration.

I didn't know it! Thanks for posting that. Interesting that a lot of the newer drugs are coming from Japan. I guess that's the place to watch.

I love that poem, Snowflake. Lately I've had Psalm 40 coming to me quite often. I'm embarrassed to say that the only reason I know the verse is because U2 used the Psalm to write their song "40" some years ago. (Anyway, it sounds nice to music.) Psalm 40 verses 1 to 3 go like this: "I waited patiently for the LORD; And He inclined and heard my cry. He brought me up out of the pit of destruction, out of the miry clay, And He set my feet upon a rock making my footsteps firm. He put a new song in my mouth, a song of praise to our God; Many will see and fear And will trust in the LORD." I like the bit about being "brought up out of the pit," whatever our respective "pits" may be.

Hi Bobby, You may have said this in another post -- but do you know if your sister's radiation is to the chest area only? So glad she got the coveted NED!!!

We'll be there!

For all the information you can find out there (what on earth did we do before the Internet?!), you just can't beat personal experience. Thanks to everyone who has answered this so far.

I neglected to mention something else about why I'm asking this question. A couple months back I partipated on a Lung Cancer telephone conference sponsered by CancerCare. Maybe some of you were on there. As usual, very little time was spent on sclc. Thankfully, the very last person to ask a question asked about new treatments for sclc. Other than other chemotherapy drugs in trials, this doctor mentioned the use of Avastin. I can't find anything about that for small cell. Anyone know? Is it in a clinical trial? Thanks again (and Bill, stop hijacking my post! )

Hi everyone, In looking through the profiles of those with sclc, there seems to be a fairly standard approach to treatment. Although, I've noticed some differences in when/if radiation is used with extensive sclc. I'm wondering if those who are battling extensive sclc and/or their loved ones might be willing to share if they have had unconventional or experimental treatment that they feel helped them. That could even mean radiation when it wouldn't have been a typical treatment. Bill's onc is of the opinion that we should wait until the chemo cycles are completed and have a final PET/CT scan before thinking about radiation. He might very well be right, but we've decided to go see our radiation onc next week anyway for his opinion. Also, any thoughts on PCI? Thanks in advance.

Connie -- thanks so much for posting about your extensive sclc friends who have done so well. I can't tell you how fantastic that is to read.

I can only say what our radio-therapy doctor told us. When we initially thought the diagnosis was limited SCLC, the plan was to do concurrent 2x/day radiation, starting with the second chemo cycle (so that the first cycle would reduce the primary mass). Once we learned that it was extensive, our radio-therapist said we would re-evaluate the radiation after the chemo did its job (also allowing the chemo to be given at a higher dosage). I think Bill said this, but he told us to come back regardless of what our medical oncologist said -- I guess sometimes there is a disconnect on how the two types of practices see the benefits of radiation. Having said that, we've decided on our own not to wait to see our radio-therapist again, but to have a consultation now that Bill has finished his 4th cycle, have him look at the latest PET/CT scan, and give us his opinion and possible game plan. Bobby, it looks like your sister's doctor might be doing something similar, since her PET scan is clear. I guess it's really a case-by-case thing. I wish her all the best with it!

Congratulations Ernie! We all knew you'd do it! We'll be sending a check to you for LUNGevity too -- not because you finished, but because you started! Like Nick C -- I'm inspired. A half marathon, and eventually a full marathon have been on my list of things to accomplish for just a little too long...no more excuses. Contrats again!

Hi Aaron, I just want to add one more "stay strong" voice to the chorus coming your way. Our doctor told us a story recently. I'll just copy it here: Our oncologist told us a story a couple weeks ago of one of his lung cancer patients. He got to a point where there weren't a lot of medical options left. He pressed our doctor for a timeframe, because he owned a construction business and wanted to have everything in order. Our doctor reluctantly guessed 6 to 9 months. That was SEVEN YEARS ago, and the guy still comes in for his checks and, as you might guess, won't listen to any prognosis ever again. As my hubby often says to our neighbors, "it's never over until the fat lady sings -- and if you see a fat lady outside our window, get your shotgun out quick!"

Flowergirlie, I cannot believe what you experienced with that doctor. With the amount of damage a statement like that can do, it's almost criminal to me. Particularly when he's not even an oncologist. I'm so sorry for you both having to build yourselves back up after that. By your earlier post, I know you put a lot of hope into this option. Like others have said, there are so many people on this board who have defied their doctor's predictions. Both my husband's oncologist and radio-therapist made a point of telling us that statistics don't apply to us. Our oncologist told us a story of one of his lung cancer patients. He got to a point where there weren't a lot of medical options left. He pressed our doctor for a timeframe, because he owned a construction business and wanted to have everything in order. Our doctor reluctantly guessed 6 to 9 months. That was SEVEN YEARS ago, and the guy still comes in for his checks and, as you might guess, won't listen to any prognosis ever again. Doctors can be wrong and miracles can happen. Please stay strong and hold onto your hope -- both of you.

Hi Ernie, As I've said to you in my PMs, you are an inspiration. I often use you as a positive example when Bill and I are discussing things, or even with other family members and friends. I always refer to you as, "my friend Ernie from the message board..."! Perhaps you can post the time of your run so we can collectively say a prayer and/or think of you as you're blowing them all away! Keep going strong!

Hi everyone, As Bill’s wife, I’ve waited to weigh in on this topic. We don’t typically respond to each other’s posts, but this one is different. As he said, we discussed this subject at length over several days. This has been one of our more difficult weeks emotionally. (It didn’t help when our doc seemingly took a mental hiatus on Monday, but that’s another story…) As many of you know full well, helplessly watching the person you love more than anyone in the world struggling to find their hope and strength again is absolutely heartbreaking. I think it’s fair to say that maintaining that strength is nothing less than critical for those engaged in this horrific physical and emotional battle. I was very pleased that Bill posted – once he opened up to you all and finally got to the point! Because I think what he had to say was valid, thought-provoking, and honest. Like most of you, I see the pros and cons of the specifics, like timelines. It’s hard enough getting a large group of people to agree on something trivial, let alone something so deeply personal as this. Mostly what I want to say is a sincere “thank you” for the support and understanding that was expressed in both public and private correspondence, regardless of people’s opinions. It just confirmed my belief in this diverse yet united group of individuals. We’re a virtual community here. When you read posts, you can’t see the tears in someone’s eyes, or hear the anxious, weary, or sorrowful tone in their voice, or giggle along when one tries to lighten a heavy situation. But they’re all there and we must never forget that.

I should have included the link: http://www.cancerdecisions.com/

I was wondering if anyone has any opinions on the subjects covered in The Moss Reports? I've read some here and there and subscribe to the email newsletter. However, I'm always a little leery of these things and I'm hesitant to pay for information that I'm unsure of. Thanks in advance.

So glad your hubby was able to finish his treatment! He went through so much -- and so did you! I wish you all the best with the upcoming scans and the alternative meds -- as others have said, please let us know how that works out. I'm very interested in it.

That's a great idea, Katie. I will definitely do that. I had the same thought about Peter Jennings. I would think doing a profile on this site alone would make a fabulous story.

I PMed NancyB (we're sort of neighbors -- both in the Los Angeles area). She says she's doing fine, but the current chemo is really taking her energy. She has been checking in to read on the site. I told her that someone posted looking for her -- I'm not sure if she saw where it was exactly. I'll PM her again with better details!