[my father has lc]

Liza - regarding the shingles. I'm sure your sister explained to you that this isn't something you father just "caught" so to speak. Shingles are a manifestation of a viral infection that he already has. The virus that causes chicken pox never goes away but remains dormant in your body. Under a number of circumstances, the virus can become active again and cause a painful rash, usually along the back as the virus is dormant along the spinal cord. Among the things that could cause the reactivation of the virus, highly stressful situations, immunuosuppression, aging in general.

So it isn't really a separate thing, as it could be that the stress of the the cancer (you say he is frail) led to the shingles. But it also isn't a "cancer always causes shingles" thing either. Lots of cancer patients who have the dormant virus don't get shingles, lots of people with shingles don't have cancer.

Hope that helps you a bit though. It stinks that your father has to deal with that as well, but they are taking care of it and that is the most important thing, as it should not go untreated. He sounds like he is in good hands with your sister there too!

[I may be a complete idiot!]

First off, stop beating yourself up. I'm a never smoker, and most of my life was an obnoxious one as I had 2 parents and 5 siblings that smoked. But I've grown up a lot, and studied a lot about addictive compounds. The one thing that you need to keep in mind is how horribly addictive smoking is, both physiologically and behaviorally. So your still smoking now, on one hand may make you say "what is wrong with me", on the other hand, you have to look at all the components. Breaking an addiction is beyond difficult. I may not smoke, but trust me, I could put down the fork (or the donught) now and again. And yet, most times I don't. And my food issues don't compare with the true physiological addiction that smoking leads to. As you pointed out, it relieves your stress, so there is also a huge behavioral aspect to smoking. One part is hard enough, but both physiological and behavioral, man that makes it a tough thing to break.

That is a long way to say, it just isn't that easy as "i should" "i know better" "what am i doing". It is very very complicated. The last thing you need right now is to feel down on yourself about all of this. Be kind to yourself. You need that, you deserve that.

As a medical scientist I will of course encourage anyone to stop smoking. It can only benefit you. But I would never judge or admonish, I understand too much about the power of addiction.

Now, time for me to put down the donught and go for a walk.

Please, take care of yourself. I'm sure it is hard with no family around you to help be your support system. Luckily, there are a lot of great folks here who will help with that.

I applaud you for going to see someone and talk to them, I've found that very helpful myself in a number of stressful periods in my life.

[Group hug?]

Just so everyone watches out for my bum shoulder while I'm hugging!!

I'll be thinking about and praying for you Judy, and waiting for you to be back online and tell us what I am sure will be your good news.

Travel safe and take care of yourself!

[Weighing Costs in Treating Cancer]

Patti - Yeah that is for the 150 mg dose of Tarceva. It really is a lot of moolah. I wish I knew how to fix our health care system - I'd run for office on that paltform if I thought I knew the answer!

[It's almost over..UPDATE Sister Passed]

Oh Faith, I'm so very sorry! My family is like yours, we believe in those signs and we cling to them. There is comfort there. And from my experience, those visuals that you speak of, they pass eventually. Not quickly, but eventually you will see your sister in your mind's eye as the lovely vibrant woman she was for the vast majority of her life.

Condolences to you and your family.

[It's almost over..UPDATE Sister Passed]

I too am crying for you and for your sister, and her precious far-too-young children. You are all in my thoughts and prayers.

[Weighing Costs in Treating Cancer]

The folks at genentech will do two things for you, fight with your insurance company if you need help getting them to cover it, and then either supply the drug free if you can't get coverage by your company or don't have any coverage (may be dependent on your finances as to how much help). Also, I do think they will help defray co-pays dependent on those costs and your income level. Kelly's dr kept telling her - don't be too proud to ask for help. To which we replied, what about us told you we would be too proud! As it turns out, took more than a few calls to the wrong people and the letter from her Dr. to justify the drug, but we did end up getting it covered at a cost to her of $100/month. Retail through the pharmacy her husband works for is $4200 a month.

[Last Nites Chat]

I didn't realize you were a chat virgin Patti. I'm so glad you stopped by and that you saw how funny everyone gets. Always good advice for folks who need it, but mostly good laughs, which we all need. And I'm all about the dark humor, I'm still chuckling about the "I'll end up in the dumpster" comment you made.

And I agree with Deb, everyone makes typos, and the scientists have done those studies, the human brain can read right past them and know exactly what it is you meant to say. So type and mis-type away!!

[New here, and terrified....]

As others have said, if you dr said he hadn't seen tumors in both lungs, then he hasn't seen many lung cancers as there are a lot of folks here that can tell you they have had tumors in both lungs also. Sometimes tumors of different histology, so two primary tumors. Sometimes spread of one tumor from one lung to another.

Try and hang in there, and wait until you talk to the Dr. and let them explain what it all means to you. I love that most Drs freely share these reports, but I know many worry about it as they feel it gives undue worry to the patient and family as you will read so many things that sound bad but in reality are things you shouldn't worry much about. From the sound of the scan, the liver and adrenals are fine, and those are 2 of the 4 areas lung cancer likes to metastasize to. So that is some good news! Try and find the good news, even if it is in there with some bad.

We all know how you feel, none of us are ready for this world. And we get tossed in the deep end with no lessons. But folks here will be of great help to you, and that will let you be of great help to your mother. Take care of yourself!! Prayers for you and your mum.

[What to expect from radiotherapy]

It is a good thing that he wants to start now, it means that the chemo shrunk the tumor plenty enough for them to feel comfortable starting radiation. (If that was the reason for why they waited to start it, whic is what happened with my sister.) I can say that I noticed a quick change in her coughing, which was how I knew things were working. She never really had SOB but her coughing was constant and nothing I recommended seemed to work. One day, it was just gone. And that was early in the process. My sister tolerated the radiation very well, and it was at about the max dose they could deliver over a 37 day period. She had some slight burning on the skin, but not much and we kept it well moisturized. Her esophagus had some issues, that tends to be the biggest problem especially if they are irradiating the mediastinal nodes, which lie right over the esophagus. Some foods she had to forgo and some she told me she had to swallow differently. But she still ate, telling me only one day out of all of it did she not feel like eating and then not eat. Other days, she had to make herself, but she knew it was vital to keep up the nutrition. Everyone is different of course, but all and all, she did well and with little residual effects. Subsequent scans have not shown any damage to healthy lung tissue. She too has COPD, if that helps at all.

Good luck with the radiation!

[Research]

I'm sure others agree, no need to apologize. It is a lot to take in, and it is like a foreign language. That's my sister's joke about me - "well, she speaks the lingo."

A few answers. Your cancer is described as "poorly differentiated". This is a term that is used to describe how much like a normal cell (well differentiated) or like a cancer cell (poorly differentiated) the cells look like.

It is also not uncommon to have "mixed histology", to have tumor cells that exhibit both squamous and adeno characteristics. It kinda reads to me like the histologist stained the cells for squamous cells, and yours did not stain as squamous cells would. They then stained for something known as thyroid transcription factor-1, and studies have shown that this is predominantly exhibited by adenocarcinoma. So the results of the different staining was that the cells were far more cancer than normal and with the characteristics of adenocarcinoma.

I have no idea if that helps or muddies the waters more.

[caregiver help ideas]

I'm sorry you have the added worry about your husband, though I would imagine it is quite normal. I certainly hear my sister worry about her husband and kids a lot. I would just add that while you say it is out of character for him to say he thinks he needs to see a dr and perhaps get some medication, it in fact sounds like a very healthy thing to me. There is help out there for someone who is dealing with watching their loved ones endure any illness, and it is a smart and healthy thing to take advantage of it. I would encourage you to encourage him to seek out that help. I've recently started to look around for some recommendations for a therapist in the area for myself - and I don't live with my sister and deal with things on a day-to-day basis as your husband does.

I'm sure that isn't of any help, and I wish I could give you an answer that would help you. But I think you need to encourage him to find his own outlet, someone to talk to like a therapist, and some pharmacological help if that is what is needed. He may find it is easier to be strong for you when he has someone he can go to who is then strong for him.

[Anyone Near Centreville, VA?]

It does pay to be in this area where you have lots of outstanding options! My family is from PA and my sister is still in Pittsburgh so she is treated there, at Allegheny General Hospital actually. I adore her medical team and even though we happened into them by chance, I couldn't be more thrilled. I make the 3.5 hr drive every 3-4 weeks to go home and either just spend some time there or take her to appointments, especially ones where plans are being made or results being discussed. I need to work on inventing a teleporting machine.

[The fight is on.]

I hope it all went well today. That first day of chemo was so very rough on my sister, mainly as I called it because of "the great unknown". But she was way more worried than it turned out she needed to be. Eventually, she was the chemo pro! Getting over that first day is a big hurdle and it will get easier!

[Anyone Near Centreville, VA?]

Hey there! I'm a caregiver, sort of My oldest sister has 3b NSCLC as you can see below. I'm less the 'caregiver' than, a phrase I'm stealing from Jamie from chat last night, a "medical bodyguard". I'm sort of in your area, I'm in Montgomery County MD. Around here it seems we consider it 'in our area' if it is within a 1 or 1.5 hr drive.

[3rd post on helping a 2nd grader]

Just saw this and I will be glad to help! My sister and I helped our cousin's daughter with her "flat stanley", he went all over Philadelphia, Pittsburgh and DC. It was as much fun for us I think. A postcard is surely quite easy to pop in the mail!

[Garage Sales - Love 'Em or Hate 'Em ?]

I'm not cut out for running a garage sale, I learned that last summer. My friends and I had one to raise money for the one friend's marathon for the leukemia/lymphoma society. This year we are doing it again to support my ride for the Livestrong Foundation. Last year we raised $520, it was a really great result. However, I found myself going crazy at the people who tried to bargain me down from that 50 cents for a book. IT'S FOR CHARITY, cough up the 50 cents. We decided I'm better at being in the background, sort of the muscle of the operation, moving things around when needed.

Years ago my mother had a house sale after my dad died and we were moving from our 6 bedroom house to, well no where actually, moving in with my sister Kelly until we could figure something out. I was not coping well so I slept in. They had the stairs to our 2nd floor blocked with a table and some couple just moved that table and went up and browsed. They told my mum - "you know, there is someone passed out in a bed up there!!!". Poor Mum was like THAT'S MY DAUGHTER, GET OUT OF HER ROOM!. It was quite an experience.

I think I'll need to take a day or two off work to recover from our Livestrong yard sale this May.

[Research]

If you wish to make a complaint that will be heard, you can complain to the IRB - institutional review board. Any clinical studies conducted at a site would be overseen by this board. They would take any complaint, such as feeling like you were forced into participating or you were not 'adequately consented', very seroiusly!

[Experience's please]

Hey snappy - glad your husband talked with his dr. I know my sister and her husband, and me too, always feel better when we chat with her dr. I may go in with some definitive ideas, but I'm plenty open to hearing his experiences and takes on things. I like that he too is open to hearing my take. In the end, it is quite true that medicine is an art, not a science. Some things are open to interpretation and different drs have different takes on that interpretation. This site, and especially Dr. West's onctalk site, are great for figuring out what the standards are and if what you are being told is similar to what others are being told. Such great resources!

Good luck and keep us updated!

[Experience's please]

My sister had 15 weeks of carbo/taxol and 37 days of radiation with "curative intent". She completed both the second week of October and her surgeon operated to attempt to remove the lung lobe on 22 January (unsuccessful but having nothing to do with the fact that she received radiation doses that pushed to the max limit the field would allow). I think she probably received about 66 Gy of radiation and I believe 68-72 Gy is considered about maximum for the lung + nodes (but my coworker who can confirm that for me isn't in the office right now).

So I think it is an overstatement to say "if you have radiation with curative intent you can not have surgery". Also an overstatement to say "surgery must be performed as soon as possible". Though clearly it should be sooner rather than later.

My sister's doctors would not do a PET until 2 months had passed after radiation, due to the increased likelihood of false positives on the PET that are due to the radiation and not to cancer. Her surgeon would also not do surgery until he had a PET and could feel relatively confident that nothing new had popped up and that she was in fact 3b. Though if more than 2 months had passed since the PET, he told me he would redo the PET before going ahead with surgery. Again, the key being that he wanted as much assurance as he could get that (1) her nodes were sterilized and (2) no new sites had shown up.

Just food for thought, and my way of saying that you will find lots of differing experiences on this board, as well as among the medical community. Your best bet is to talk with your team about the timing of things if they concern you. Based on my sister's experiences, they don't look like they are waiting too long to scan, based on hers, they are scanning sooner than her drs would have recommended, at least based on the PET and radiation treatment. Talk to your drs, they can help calm your worries. Though I do understand sometimes trying to not worry is like trying to not let the sun come up.

(also, any decisions would not be made on X NUMBER of radiation treatments, it is based on the DOSE of radiation, often presented as I did above, as Grey's or Gy. Different parts of the body can tolerate a maximum amount of radiation to the field, and the numbers differ dependent on the part of the body). Once upon a time in my life, I worked at a radiation research institute, but I try and block that all out. ha ha ha

[Question about chemo dosages]

Glad to help if anyone has any specific questions, but as others have already said, the doses for those drugs (and we all know it isn't that way for every cancer drug) are dependent on the patient and their weight or size.

[Need advice on "Dad Talk" - UPDATED]

Regarding your dad not acting on doing something about the house - what about the possibility of you and your sisters having a lawyer draw up the papers that would be needed to change the lake house to your names. Spell out the specifics if needed - as in you are responsible for XYZ and your Dad gets ABC out of this, including time he can spend there and under what conditions - ie, lets you all know so many weeks in advance or whatever.

My point being, I understand a thing or two about being all talk. Maybe if you do the heavy lifting here, you'd have a better chance of getting him to sign the needed documents, rather than hoping he will take the initiative to go get the papers drawn up. Just one small suggestion.

[Great Lunch!!!!]

I'm loving the pic of Jack in the Guinness barrel. And wondering - could I fit in that Guinness barrel? I'm all about the great photo-op, always thinking of the future scrapbook page! (note to self, lose some weight before the next northern east coast gathering!)

And we had wicked winds yesterday, so much so that my very good friend, who is pregnant and due in about 3 weeks, had a tree go down that not only totalled her car, but her husband's car as well. I say one car is horrible luck, both your cars, someone is telling you something. When in doubt, ya gotta laugh! I just can't believe it, not another car on the street was touched. OY! (pardon the thread drift).

[Great Lunch!!!!]

I sure wish I could have made it!! And my co-workers do say I have a genetically innate homing device to get me to Pubs. Hopefully weather, work and flu bugs won't conspire against me next time. Glad you all had fun and can't wait to see the pics!

[Relay for Life]

I'll be curious to hear folks take too, as I've learned a lot from this group about these sorts of things.

My friends and I did the relay for life for many years, until the military transferred so many that my team was reduced to very few. We raised a lot of money and certainly had a lot of fun. But I've not done it for a while.

Last year we directed our fundraising to the Lance Armstrong Foundation, for a number of reasons. But thanks to this board I became more aware of my need to donate specifically to LC fundraisers. Which is why I love when folks on the board let us know they are doing fundraisers, then I get the chance to put a little money to a great, personal cause and help out the folks raising the money as well! (So keep that info coming everyone). I also have a program through work where we can donate via our paychecks and this year I made sure to look for anything lung cancer specific.

So many worthy causes, so little paycheck.