[Mike' gone home]

Shannon,

I was so very sorry to hear of your loss. Like many others, I am writing this through many tears. I only came to the board about 2 months ago and have followed your postings closely. I felt your deep love for your husband and you can take some comfort in knowing that you did everything possible for him. He knew this too.

My deepest sympathy--

Gail P-M

[To Dave G. -- you're an inspiration to me]

Dave

I'm a fairly new member with an older Dad who has had a recurrence of lung cancer. I jus started coming to this board about 2 months ago and that's when I saw that you were in a similar situation having been a Stage 1 and now a Stage 4. I've watched you go through this, have followed your posts and have seen you show a tremendous amount of courage as you face this disease. You've helped me stay strong for my Dad-- honestly. I watch your posts and see that you still have lots of hope and plan on surviving. It helps "infuse" me to give my Dad (and me) hope as he begins his chemo next week. I'm not a 100% certain as to what has been going on with the Under 40 board but as far as I'm concerned, you've done a fantastic job as moderator and do not want you to resign. (I know you're taking some time off as you undergo chemo but when you're "up and running" again, please come back to this board and do your wonderful work). I've been quite involved in another board due to my son's blood disorder. I've watched that one have its ups and downs during the past few years. It seems inevitable when so many personalities get together and that's unfortunate. As others have said, our main job here is to support each other and that's what it should be about. That's what has drawn me to this board and God knows I need it right now! It's full of a wonderful strong group of Survivors. I want to see you posting regularly -- as I say, you've been my inspiration here. You have so much to offer and hopefully, we can offer you some support as well. I'm rambling..

Take care Dave G and thank you.

[My Dad - Re-staged from Stage 1 to Stage 4 - radiation too?]

I've posted here a couple of times before but my Dad was finally Re-staged today. He's a 79 year old who was diagnosed in summer 2000 with early stage 1 lung cancer found as a result of another medical problem. First - a little confusion on my part -- he was followed with CT scans every 6 months so we were a little more than shocked to find that it had returned and now appears to be in the bones. We asked no questions in 2000 when we were told that it was caught early and nothing else needed to be done. Needless to say, i wish we had asked for a round of chemo as "insurance" but we didn't.

To continue though: It was a CT scan in early April that showed the cancer again in the lung. (he had had a lobectomy in 2000). Things were dragged out until now -- due to test after test-- ie. many hoops to jump through. There appears to be a very small lesion in the femur. It does not "light" up on the CT scan because it's so small. Then they thought they'd do a bone biopsy but decided not to because it probably wouldn't prove conclusive because of the size. So the doctor said that basically it couldn't be anything else except a metasticis so he's treating it as stage 4. He's going to give him Cabo/Taxol once every 3 - 4 weeks over a 3 month period. Oncologist said the literature says not to radiate the lung at this point since it would do no good. Is that everyone's experience with a Stage 4 i.e. just chemo and no radiation. We also asked about the response rate to this chemo and I believe the oncologist said there is a 40 - 50% response rate. That actually sounds low to me. WE then asked what happens if he doesn't respond and were told that he goes on a more potent chemo drug then.

Questions: STage 4 -- treated with just chemo and no radiation to lung?

The recurrence in the lung was along the chest wall; surgeon said it was "whitewashed" so it wasn't a tumor that they could remove

Question 2 -- what were your experiences with this chemo combo? -- some response, full response, no response?

Anything else you can add would be helpful at this point.

Thanks.

[Pet Scans/CT Scans]

Hi Carol

This is the first time I'm able to respond to a message on this board and I think that you've gotten the correct advice already but I'll reinforce it. Right now, they are checking into whether my Dad's cancer has metasticized into the bones. They found a very small spot on that CT scan and were not sure. So they did a PET scan today. We were told that if the PET scan lit up, it would have metasticized. However, if it didn't light up, then we would have to have a biopsy anyhow since the spot is so small. In other words, it seems that there are some spots that are too small for PET scans which I thought were the "be all and end all" of things.

By the way, Carol, today was my last day of school. Actually, I am leaving a week plus early. Tomorrow I'm flying home to be with my Dad and to take over some of these doctor appts. and let my sister get back to work... So i'll be on L.I. tomorrow night and I haven't a clue for how long.

Let us know how Gene's appt. goes on Wednesday.

Gail

[When do you go for a 2nd opinion?]

I'm seeking your help once again being a "newbie" on this board. I wrote recently about my 79 year old Dad. He has had a recurrence of cancer that was incoperable and may be in the bone. We will know next week whether it's in the bone or not. When he initially had his lung cancer, they removed a lobe and did no further treatment. This time, he'll obviously have treatment -- chemotherapy and radiation if its in the lung and just chemo if it is in the bone. ((Oncologist said radiation would be used for pain if it became an issue in the bones later on)). I always hear people talking about a 2nd opinion. When do you seek one? AT this point, my father likes his oncologist and has faith in whatever he decides. Should I be pushing for a second opinion at this point ie. right after he gets the first opinion (when all the tests are done and we know exactly what we are treating) or do we leave the second opinion for now??? I realize that if he were not responding to treatment or if the doctors gave up on him, then a second opinion would be warranted but do most people go for a 2nd opinon before they start treatment. Yes, I'm a little contused but it's been a long day. Please clarify for me.

Thanks again for helping out. I don't know what I'd do if you people weren't there.

[Will treatment ever get started?]

I have been waiting to post here for about 2 months with specific information about exactly where my 79 year old Dad is with his lung cancer journey. But I feel as if we'll never find out. Here's his story/frustration! His lung cancer was found "accidentally" in August 2000. When they operated, they said it was Stage 1 lung cancer, he needed no further treatment after his lobectomy... He has been followed with CT scans every 6 months.

After his CT scan in very early April, he was told that something showed up but they weren't sure what it was. So he had a bronscopy which was inconclusive. Then he had a PET scan. (It may have been the other way around with the bronscopy after - I can't remember! It has been such a long 2 plus months) Then he was scheduled for surgery to get a look at things. The new surgeon (his former one retired) went on about how big an incision the former surgeon had made, how the other surgeon did not take out many lymph nodes... - this really made us feel great and start to question things- by the way, the former surgeon was the head of the dept. so he wasn't exactly a fellow off the street). Anyhow, it turned out that the incision was almost as big (the surgeon blamed it on the job the former surgeon had done) and yes, it was cancer again. This time it wasn't just a spot but was "whitewashed" over the chest wall. So next they wanted to do some scans. So next was a CT body scan. On the scan, a very small spot on the femur showed up. Again, they said they are not sure it is cancer or not. So now Dad is scheduled for a PET scan (a full body one, this time). However, the scan is not for another week. If the scan "lights up, it is definitely a bone metasticis. If it doesn't light up, it still may be cancer, according to the oncologist, since the spot is so small. So if the scan doesn't light up, then he has to go for a biopsy of the femur. Needless to say, they won't tenatively schedule this because they are not sure it is needed since the PET scan may light up. In all, once Dad has the PET scan, it will be a full 2 1/2 months since the CT scan that showed "something."

My Dad and family are feeling totally discouraged. My Dad wants to start treatment to feel like he's doing something to fight this. But it's wait after wait. In the meantime, of course, we are all privately thinking -- it's spreading more and more. I can't believe that since my Dad should be "urgent" they are making him wait for these tests for so long... I don't know if these waits are standard and/or if I should be "yelling." The oncologist, on the phone to my Dad or sister, said something about if it's confined to the lung, it's treatable to extend his life but if it's in the bone, it's very bad. (I am quite a distance geographically from my Dad so I get this information second hand by phone every day. However, when the "treatments" start, I will be there. My bags are basically packed and I keep waiting and waiting).

Thanks for listening. I have been coming to this board every day for 2 months now. Just reading everyone's stories and seeing the support and positive way that people approach this has been a "sanity saver" to me.

Any thoughts or comments about what has been happening with my Dad would be appreciated.

My thoughts and prayers are with each one of you.

Gail