cat127

I'm so sorry for your losses. Losing one parent is tough enough, but both so close together is just too much for anyone. You will be in my prayers.

Oh Patti, I wish I could say something that would make you feel less guilty, but something tells me that nothing will change that. Maybe though, I can offer you some perspective as someone who was a teenager when her father got sick. At 17 and 18 I spent much of my time taking him to and from doctors. Even though I am the youngest, I was always the "science kid" in the family, so Dad would put me on the phone to talk to the Drs. He also knew that I would never lie to him. I had just started college when he died. Did it affect me, change me? Sure, how could it have not? I often joke about 'who would I have turned out to be if I had not lost my Dad so young'. But in the end, I think I turned out OK. You are right, I think I also turned out a lot stronger a person than I might have, a lot more self-sufficient, possibly. One could even argue, a lot more capable of being beside Kelly through all the issues with her disease because of how strong my Dad's illness made me. Not such a bad thing, I would say. I always tell people, I will take the 18 yrs I had with my Dad, and the difficult years of his being sick, over 50 years with any other Dad! So, you won't stop worrying about Nick and feeling guilty, because you are too wonderful a loving mother to not feel that way. But when you do feel that way, try and remember that in many ways, he may grow up to be a far better man because of this, and he wouldn't trade you for any other mother in the world! I know of which I speak!

My sister is 240 miles away from me, so I really do understand how you feel. What I have learned from her, is what she appreciated from me most of all, was that I call her all the time. Nearly every day actually. Some days she may not be feeling well and the call is very brief. Other days, she has lots to talk about or loves hearing what I have to talk about. But I keep her in the loop and she one day referred to me as her "lifeline". I think really, the phone calls helped her alot. It isn't the same as being there, but it does help!

Sorry, but the pharmacologist in me has to respond to this There is also a new breed of targetted drugs which your onc will also know all about (targetted here means the though the treatment is sysytemic, the medicine, unlike chemo, attacks ONLY cancer cells and not noraml/healthy cells). One of these drugs, Avastin can be used in conjunction with chemo and then by itself (sometimes for more than a year). Tarceva is another that when it works, works better than ANYTHING out there. This is not true. The so-called targeted therapies most certainly do also "attack" normal/healthy cells. It is why you get the side effects such as rash, diarrhea and in rare cases liver damage, from something like Tarceva. There is no drug out there that truly only affects cancer cells and not any other cell. It is the goal of every drug tested, but it doesn't exist yet. This is why I'm not a fan of the term "targeted therapy" vs "cytotoxic therapy". I know my sister would agree, as she is far sicker on Tarceva than she ever was on Carbo/Taxol.

Oh I like both Ry and Randy's ideas, they both sound really great. Given this guys clear desire to help his patients, a donation in his name would probably be well received. And who doesn't like to get free food? Kelly took French pastries to both the medical onc and the radiation onc groups on her last days of treatment. They loved them! I'm also thinking of buying shirts for the two docs that we made for our bike ride. They say "Kelly's Posse" on them and who better to be part of her posse than the two doctors! Your doctor sounds like a dream, we could always use more of them!

The Crazy Sexy Cancer DVD is very worth watching. She has a very contagious spirit! I have the book, bought one for me and one for Kelly, and had Kris sign them at a local book signing. She was as enjoyable and inspiring in person as well! Not sure if she is still doing a book tour, but if she is, I would encourage folks to go see her. I also watched the Primetime show this week with more interviews with the CMU professor who became famous when his "last lecture" made it to youtube. He also wrote a book that just came out, titled "the last lecture". I haven't read it, but he and his wife are wonderful to listen to. I'll likely pick up the book as I am sure there will be some great things in there.

It is only April, he may be under some snow or something way up there.

Thanks so much Ned. That was all very helpful. I think Kelly's Dr, and Kelly, are hoping the mouth issue sort of resolves over time. She said she can't taste salt, doesn't like coffee anymore, and finds things too spicy (words we have never uttered in our family) So I do hope the mouth issue resolves. I will forward the details about the skin on to her, and check out the link. I was thinking that maybe it was time for her to go see her dermatologist anyway. She sees one regularly due to some basal cell carcinoma issues. She is a wonderful dr that we adore and Kelly finds it very comforting just to talk to her. It might do her some good to go see her overall, but I bet she may have some ideas about the skin and paper cuts. Thanks again!!!

OK folks, I'm turning to you as you are far more the experts than I. Two issues Kelly is having that are problematic. One the Dr. has not seen before - wait, no, she said he hadn't had either issue with his patients. First, I know I've read about here. I think NED, you might be the one that had this. Her rash on her hands and feet have now turned into "a thousand little paper cuts". I told her I had seen that here, though it was not something I would have predicted. Did you say you used some sort of tape NED? Can you elaborate for me so I can pass it along? The other is pain in her mouth. At first I thought it was thrush, which her GP agreed with and then so did the oncologist's PA, though she did so over the phone. The GP prescribed a rinse and the PA a pill, and there has been no change. In medicine, if the cure doesn't fix it, then that ain't what it is. So to speak. She'll finish out the pills, just to be a good compliant patient, but the Dr is sort of stumped. At this point, this could be what leads to a dose reduction or a two days on one day off schedule. But we are hoping that either she adapts and the pain goes away, or someone here, clearly a bigger patient pool than her Dr alone has, has also had the problem and has an answer for us. As Kelly told her Dr today - "I have a cellar full of really GOOD red wines, and with this pain, I can't drink them. I refuse to accept that I can never drink this wine!" He asked her would they 'go bad'. She said not these wines, but whether I can ever drink them is an issue. Plain and simple, it is impacting QOL for her. She can't eat things because of the pain, and lost 9 lbs in one month. She also had bad diarrhea now sort of under control and then vomitted for several days due to an antibiotic and becoming, as I teased her, Pavlov's dog. She saw a pill, she threw up. I don't think the weight loss will continue at that rate given the end to the vomitting and the diarrhea under fair control. But she needs to be able to enjoy her food (and her wine). So - any input on the cuts or the mouth? All advice greatly appreciated!

I'm not sure if this is close to what you are thinking - but I think if you contact some of the drug companies that make lung cancer drugs, they may have some things they could send you. To name a few: Alimta = Eli Lilly http://www.lilly.com/ Tarceva = OSI/Genetech http://www.gene.com/gene/index.jsp http://www.osip.com/ Carboplatin is generic but the original drug is by BMS http://www.bms.com/landing/data/index.html Taxol - BMS also makes that Years ago I got a lot of things from drug companies for 'goody bags' for a relay for life event. Just a thought.

Not sure if this will help him, but the nebulizer is just another way of delivering the drug to his lungs but a more efficient way. Lots of folks use them. I often wish my Dr. would prescribe one for me when my asthma isn't controlled well. I know quite a few young kids who use them. The times I've used them in the Drs office, I felt such instant relief. Somehow he has to look at it from that point of view, not from the idea of "becoming reliant". I wish I knew how to change that attitude for you, but I don't. I did see my sister do that in the early stages, she wanted no other drugs other than what she got on chemo day. She was horrified that we walked out of the office with scripts for like 5 other drugs. I had to push a little to get her to take the ativan or compazine as needed, but once I got her to see it from the "it will make you feel better and there is not reason to not take it" point of view, we were fine. The nebulizer is just another way to deliver the medication he is already taking, the inhaler. It will work much better and I am betting he will get some relief. Hope that helps at least a little.

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!

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.

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!

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.

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.

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.

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!!

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.

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!

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.

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.

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.

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!

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.