cat127

Sisters are wonderful things. I'm so very very sorry for your loss and hope that the memories of her sweetness will comfort you in these painful days.

Having squamous cell histology, they would not use Alimta, as recent data shows that its effects are seen in non-squamous cell lung cancer. Avastin is also not used in patients whose histology is predominantly squamous cell. In the US it is specifically labeled for use in non-squamous NSCLC. My sister has mixed histology, though I'm not sure if the path report ever told us what the predominant histology was. She had Carbo/Taxol concurrent with radiation Now she is on Tarceva, which has FDA approval as a second line therapy in NSCLC, regardless of the histology. I would think that is a possibility for a second-line therapy in Canada as well. AND JINX to Ned, as we posted at the same time.

There was a great line on Grey's Anatomy last week, when talking about someone's cancer diagnosis, one of the interns said "Odss are, the odds are crap". I like that line. And she was referring to them not being worth listening to, not that they were bad odds. Just to clarify for those that maybe didn't see it.

Regarding the tumor being inoperable - what it boils down to is the fact that even if they could remove the tumor, it would not positively impact the course of the disease and could possibly negatively impact it as it is a difficult surgery and he would then be without a lobe (or more) of his lungs. The fact that he has cancer cells in places other than the primary lung tumor, tells them that the cancer has gotten out of the lung and into the blood stream. Some liken surgery at this point to closing the barn door after the horse is out. You will also hear doctors refer to it as a "local treatment for a systemic disease" - meaning that he has cancer in places other than the lung but the surgery only treats the lung. Does that help at all? Again though, you need look no further than this board to see people who were not eligible for surgery and yet are defying the odds every day. So - always reason to hope. I'd say leave no stone unturned as far as the financial aspect of it. The worst you can hear is that he doesn't qualify. I have a friend who lost his job just as he was diagnosed with lymphoma. The social worker at the hospital he goes to for chemo has been an ANGEL and found him all sorts of aid to help him with co-pays and such. Can't say enough, your friend is very lucky to have you.

You've been given a lot of great advice. I will add one small correction, since you specifically said that the medical terms and such are very confusing to you. The fluid around the heart is not corrected by a pericardial effusion, it IS pericardial effusion. One method they may use to correct it is a pericardiocentesis. You may also hear about a pericardial window as another method to treat it. I understand how hard it is for many people to deal with the medical terms, it is like a second language and it helps to be as fluent in it as you can. I spend a lot of time helping family and friends out, since I'm bilingual in English and Medical. I hope you look around and see all the people here who are Stage 4 and see how well they are blasting away at the numbers. My sister is Stage 3b and doing better than I'm sure most doctors would have told her she'd do. I'm grateful that her dr was not one of those to stamp an expiration date on his patients. Take care and your friend is obviously quite lucky to have you!!

I'm so sorry you are dealing with this and I have to say, I totally relived those feelings of the first few weeks as I read your description of how you are feeling. If it helps you to know, though the roller coaster ride aspect is always there, that overwhelming urgency feeling does settle down. You get into a groove with the treatments, you learn to live from scan to scan. I will preface things with saying that I am very much a realist, and I'm a scientist so I'm all about numbers and data. That said - you NEVER give up hope. NEVER. My sister is stage 3b, and next week it will be 22 months since her diagnosis. Now sure, I wish I could tell you that my sister is now cured, but she isn't. (though please do know, there are people with stage 3 NSCLC that get cured, so again, never lose hope). So she isn't cured, but she is stable, and she is alive. And she has been really enjoying the time she has, knowing that she may not have the 80+ years that our mother had. But she is living a very normal life (as normal as it can be with scans and drugs etc). She and our other sister and I went to Paris for a week in October. I guess there is a degree of all of us trying to pack into the time now, all the things we may have wanted to do in the next 15 yrs. But we also haven't stopped hoping that in 15 yrs we can say to her - how fun was that trip to Paris? We still have lots of hope. Take care and enjoy the time you spend when you visit with your father. I think you will feel a little less scared of it all when you see him. And like everyone else here, you and your family will fall into a routine and you will deal with all that this hideous disease throws at you, because there is nothing more you can do but deal with it. And one day you'll be shocked at how well you are dealing with it. My other sister still says to me - remember how horrid it all felt that first month? Not that it isn't still horrible, but we are learning to deal with all that it hands us. And you will too, I promise!

Outstanding news Patti!!!! So glad to read this.

She really was quite inspiring in how she faced each facet of this disease. My thoughts and prayers go out to her family and friends. This site has lost a very inspirational member.

I do think Tommy goes to jail. I'm not that sorry to see him leave. The previews make it look like someone dies and it sure seems like Rob Lowe's character. But the tvguide summary for the show in 2 weeks says something about Rob Lowe's character's governor quest continues in light of a recent medical issue and birth of his son. So, he's at least still alive. And seems that the medical issue is directly with his part of the family, so is it him or the newborn? It's funny how much you can learn by the tvguide summaries for upcoming shows. They do often give things away not so much in that night's summary, but in ones for the next couple of weeks.

I'm so very sorry to read this. Far too young and terribly not fair for all of you. You are in my prayers.

If you do a search here, you will find lots of information as many folks are taking it (my sister included). It is new, but not brand new, as it came on the market in the US nearly 5 yrs ago. You should also check out Dr. West's site at cancergrace.org. Specifically check out this thread http://cancergrace.org/forums/index.php?topic=618.0

I can really appreciate the need for the sun and relaxation and I'm all about making memories. Maybe one place to start is to ask the doctor why. Find out the reasons he is concerned about you going. It may be that they are all things that you can answer, things that maybe he thinks are worrisome but you don't. I feel like you would be able to make a decision better if you had more information from the doctor. Can't hurt to ask. And I hope you get to go and enjoy yourself, take lots of wonderful pictures and making many wonderful memories!!!

I think my sister is one of those people that Don's talk of cyberknife may have helped. If not to save her life, certainly to extend it. And for that I will be forever grateful to Don. I'm so very sorry for your loss, but it is obvious you all realize how truly blessed you were to have him in your lives. We here all feel the same. You are all in my prayers.

Oh Amanda, I'm so very very sorry to read this. Please know that we coudln't have nearly been as much a support to your father as he was to all of us. I know he certainly was for me personally. It was his talk of cyberknife that prompted me to pursue it for my sister, and who knows how much extra time that may have bought us. So he has had a tremendous impact on our lives. You and your mother and the rest of your family are in my prayers. And I hope your father is smiling at all the replies your post has gotten and will continue to get.

I think your mother just misheard them and is scheduled for a PET scan. I know of no scan called a PEP scan.

I found that sometimes with my sister, I just wait until she tells me of a symptom before telling her that it is likely the Tarceva. No need telling her the possibilities. If she is like our mother, she'll just develop all the symptoms that are possible if she knows about them Kelly had the diarrhea kick in about Day 3, with her Dr telling her that just wasn't possible. But she continued to have a lot of issue with it. We went to 150 mg 2 of every 3 days. Ultimately, we took a drug holiday (which we then spent in Paris!) and she started back on the drug at 50 mg/d and while she has had some rash issues, and her mouth is again sore, she has had no diarrhea, her appetitie is fine, and the mouth isn't too sore that she can't drink red wine. She has had 2 scans since starting and each one the SUV was lower than the previous scan. We scan again in 1 week. Fingers crossed. It has been a rocky bit of road, but a good one for us so far. So here's hoping your road is way smoother but equally as successful!

Oh Barb, I'm sorry you are having such a tough day. I'm sure you were very scared to hear about your daughter. Take a few deep breaths and maybe put down all the info for tonight. Look at it again when you have a fresh eye. OK, that was the other study, but I was lazy and didn't want to type out the code name for it. It is Phase 2, which means there is definitely some human info out there for this drug, but they still don't know a lot and are definitely going to put everything they can into the documents for you, to ensure that people are warned of any and all possibilities, which isn't the same as likelihoods. As you look at the papers and at the side effects that most concern you, be sure to ask the dr if there is any information out there about the severity of those toxicities or the frequency, and hopefully he can help you with that. Good luck and I'm sure tomorrow will dawn much brighter than today.

Is the trial one of Tarceva plus Sutent? Just searching clincialtrials.gov to see what the study may be. I can tell you this, as someone in the field, those forms are required to tell you all the possible risks. If you look up the other drugs, they would have a lot of risks too. Sometimes it helps to see the percentage of patients and the grade of the toxicity. Smaller percentage, less common. Smaller the grade number, less problematic the toxicity. If this is a Tarceva plus experimental drug, then the list of risks is also large because we don't have enough information about the experimental drug, and some of those risks are taken from what we have learned in animal studies. One thing about the trials, they monitor you like a hawk, if that helps at all. I can understand the fear, I really can. Though I'm grateful everyday for the people that choose to go on a trial, without them we don't know anything. They really should be proud for adding to the database of knowledge! Talk with your dr, he can help put a lot of it into perspective for you.

Glad to help Ned. PI's for drugs are always evolving as new information is obtained and reviewed by the FDA. But people may not always be working from the latest version. So folks can definitely go to www.fda.gov and find on their website a new version of the insert (though even that may not be the most up-to-date, but only by a month or so). If folks have a dr that isn't aware of the issue with gastric pH and Tarceva bioavailability, then it may be worthwhile printing a copy of the latest PI and taking it with you to the appt.

I wouldn't use the word controversial, but the issue is that although we KNOW it interferes with the absorption of Tarceva, we don't know if it interferes with the efficacy of Tarceva. And we will never know that, as those studies won't be done. So we recommend not taking them together. The dr's advice to space them a couple hours apart is WRONG, as something like prilosec actually alters the gastric pH for a very very long time, so it is not possible to space them apart to overcome the decreased absorption. And this information is in the current label of Tarceva, but you are correct Ned in that it wasn't in there prior to the latest label (from a couple months ago). So any dr that isn't looking at the most recent label, would not know this information if they hadn't really been out there looking for it. I know Kelly's Dr. learned it from me. Here is the comment in the newest PI for Tarceva, and FYI omeprazole=prilosec Co-administration of TARCEVA with omeprazole, a proton pump inhibitor, decreased the erlotinib AUC by 46%. Increasing the dose of TARCEVA when co-administered with such agents is not likely to compensate for the loss of exposure. Since proton pump inhibitors affect pH of the upper GI tract for an extended period, separation of doses may not eliminate the interaction. The concomitant use of proton pump inhibitors with TARCEVA should be avoided if possible. The use of antacids may be considered in place of histamine 2 receptor blockers (H2 blockers) or proton pump inhibitors in patients receiving TARCEVA. However, no clinical study has been conducted to evaluate the effect of antacids on erlotinib pharmacokinetics. If an antacid is necessary, the antacid dose and the TARCEVA dose should be separated by several hours

This is one of my all-time favorite songs, very good taste you have! Thinking of all of you missing someone this holiday season. It is so very hard and I wish I could take away the pain.

Deb - I will be thinking of you this holiday season and sending up an extra prayer or two that you find some peace during this very difficult time.

Who makes the drug? Many of the companies have a charitable arm. It would help to know who makes it.

Restless leg is also a side effect. My sister took ativan for it and it helped a lot. Again, many of the side effects can be reduced/eliminated by other pre-medications or meds to take at home. But it is vital that the medical team be told the problems, then they can try and reduce them. You should go with your sister to the dr if you can and ask them why no radiation. Location of the tumor could be one reason, as could size of the tumor. If the tumor is too big, they fear damaging too much healthy tissue. My sister had to take a few doses of chemo to get the tumor smaller, then she was able to get radiation. Yes, radiation is commonplace in stage 3 NSCLC, but there are reasons why it isn't used. You/your sister should ask the dr what the reason is here.

My sister had cyberknife treatments this past summer. She had a follow-up PET in Sept and the tumor was less active than the previous scan (indicative of less live cancer cells). though the size hadn't much changed. She'll be having another PET in Dec so our fingers are crossed. She tolerated the treatments very well and had previously had traditional radiation the summer before. She is 19 months out of a diagnosis of 3b NSCLC. While I do understand how hopeless your sister feels, she at least must contact the dr and tell them how she is feeling, because it is important that they know. They may need to adjust the doses for her (I'm going to assume she doesn't know the doses she is on, my sister never did, the joke was always "that's why we have you", since I work in the field so I made a point of knowing all her details). There are many things they can do to mitigate the side effects of the treatments, but they have to know she is having them. The side effects themselves can be deadly. Diarrhea/vomiting, coupled with loss of appetite, can then lead to plummeting electrolytes, and that can be very dangerous. So it is very important your sister talk to her medical team and treat the symptoms. Good luck. And I know how you must be feeling. I'm drivable to my sister, but I'm still in another state and 3.5 hrs away. I would move heaven and earth to help her and despite how much I've been able to do for her, I still feel helpless. Hang in there, once she gets the side effects under control, she'll feel better and feeling better leads to feeling more optimistic.