cat127

My niece got whooping cough when we were in France in 04. We think she caught it on the plane. It caused much uproar with her Dr. when we got home, until the doc spoke to the CDC and the state health department. I thought she had asthma and realized then how amazingly similar my asthma cough sounds to whooping cough, something my work oc health doc had kept telling me.

I find these words tremendously moving, and will remind myself of them during this journey. Thank you Lynn.

I used to go to Ontario to spend Remembrance Day with my Dad's best friend. They met when my father got off the train in Hamilton looking to sign up with the Royal Canadian Air Force prior to Pearl Harbor. He asked Danny for directions and by the end of the day they were both enlisted and they were life-long best friends. Danny introduced my Dad to Mum that very night. Dad died many years ago, so my Veteran's day was spent honoring him and all the other vets, and doing that by going back to where Dad enlisted and celebrating with a bunch of RCAF vets. Danny died a few years ago and I find this day very hard without him. I will also email my brothers, a Viet Nam era Army vet, and a Viet Nam Navy vet.

I have no idea what it is with apples, but it makes my mouth tingle. When I was 4, a candy I ate made my mouth tingle, followed by my throat closing and I turned a lovely shade of blue on my way to the ER. So that feeling is usually a signal to stop eating something. And it is a shame as I used to be able to eat them and I loved them.

My family has to have my late mother's apple pie. Not that she made it, cause that would be really old pie. But her recipe. I'm allergic to apples though, so I don't eat it. For me, I have to have the pumpkin pie like you Ann!

I sorry to read this Patti. I am sure the radiation will do the job. And don't apologize for whining too much, there is no such thing with this disgusting disease. Whine away!

Is hydrochlorothiazide the only thing they have tried? There are a lot of BP meds to try after a diuretic. Increased BP is a common side effect with avastin and although my sister is ineligible for the drug, so we haven't had to deal with it, lots of folks on here have. I think the GP will try some other meds for high BP before giving up on the Avastin, but hopefully other folks on the board can tell you what they take. But again, a diuretic is only one way to combat high blood pressure.

Although I often wondered if I was......... I am the image of my mother and have my father's personality. Or, as I used to tease them, a cruel genetic joke, a mix of all the really bad traits of both of my parents. The person below me is close to their cousins. (which I am, but seems a lot of folks aren't)

Oh very nice. Where and when? Point me to the info, I'm not far from Charm City. Plus, as the granddaughter of a bookie, I've been known to gamble a time or two.

More details! We pulled this trip off in a week. Exactly one week from when we left I had three windows open on my new computer and said to the sisters - are we really doing this? They said yes and I clicked BOOK BOOK BOOK. Then we had to find a place to stay. We had a few sites we had been looking at for the last couple of years so in a day or so we had an apartment booked, about 12-15 blocks from the Eiffel Tower. Very cool! The weather was GORGEOUS, in fact I had packed for cooler weather and was worried I would be too warm. A couple days were in the 80s! We spent every day getting a relaxed start, then picking an area in Paris we wanted to check out, and hopping the metro 2 blocks from our apartment. Kelly found herself tiring out easily and seemed upset that she was ruining our trip. I laughed while sitting outside at a cafe, having a wonderful glass of wine at about 1 in the afternoon "Yeah, this really stinks!". Of course she tired easy, she's spent the last 17 months battling cancer. This trip wasn't about covering the most ground in one week. It was about making memories with my sisters, and it was priceless! There was much wine and champagne and lots of great food. One place we ate at is owned by a guy whose sister lives here and is a neighbor of a friend of mine, he was so thrilled to have us there and so happy to recommend lots of great things. It was probably the best meal of the trip, and there were many great meals. Here is another pic.

Add my prayers to the list. And I understand your feelings on Tarceva, Kelly has had a rough go of it too. But you have just started, which I assume means you haven't tried to dose reduce yet. They will likely want you to try it for a longer period of time, as many of the side effects diminish over time. But if you really don't feel like you can keep on it, try dose reduction first. Has worked for many folks. Kelly just started back up at 50 mg/d and we have our fingers crossed. I hope you realize you can always come here for the support, but I also understand if you have the 'hide under the covers' thought process, I'm a long-time proponent of hiding under my covers.

My sisters and I talked about this trip about 8 months before Kelly was diagnosed, and I really thought after that day when we learned she had cancer, that it would never happen. But it did. One of my best friends is an oncologist who has lost his own sister to breast cancer and on that first day I said to him, but we were supposed to take a trip together. He told me - make it happen! Well it was a year later than planned, but we made it happen. Carpe diem!! I had one photo request of them and they were nice enough to pack accordingly and to humor me.

Cortisone is great for orthopedic issues when it is inflammation causing the problem. That is not what is going on here though, so it would not likely be indicated or helpful. Pain medication is the way to go and let the Drs play around with the right combination/doses of drugs. I'm sure they will be able to help you. Good luck.

Jaime, I can forward your petition to a friend in Memphis, from my Ole Miss days, and ask her to also forward it around. She's a pharmacist so she's got more than the average person's understanding of mediciine and this disease. I'm sure she'd love to help. Let me know how to do it and I would love to do whatever small part I can to help you. I'm sorry that all your hard work feels like it is going nowhere in TN.

Wendy makes a good point. I guess I jumped to the conclusion that the dr didn't agree with tarceva due to the patient subset. If that is true, he is wrong. But he could have other reasons why he thinks for your mother, it is not a good fit. So best to find out exactly why. And while I do understand how tough it is to seek out another dr, how emotionally draining. I also have to say there is something so very comforting in finding the right fit. My sister really loves her dr. We think he is a kind and compassionate man, but a very good dr who is totally up on all the latest news, willing to listen to our input and letting my sister dictate how aggressive he should be. The right fit of Dr:patient is a tremendous help during a really horrible journey. Best of luck to you and your mother!

Well first it is different for non-smoking Asian women, not one of those three groups but someone who fits that description. Clinical trials showed that there was a significantly greater likelihood that a non-smoking Asian woman would have a strong response to Tarceva. However it didn't show that they are the only ones that will respond. But in addition to the subset of patients (about 10-15%) who have a strong response, ie the tumor measurably shrinks due to tarceva, there is a larger subset of patients that will have stable disease for a significant period of time and a noticeable increase in survival. So while we all want to hear significant response/shrinkage, we also LOVE the sound of stable disease. I do think on average, the results with stable disease have been in the 3-6 months range. But when trying any of these drugs, you aren't doing it in hopes of being the average, you are aiming to be in the right hand of the bell curve, to be the person who is stable for 5 yrs, not 5 months. My sister smoked and did so heavily for 40+ yrs. And obviously she is a female but as she told the Dr., she isn't an Asian non-smoker unless there was something our mother never told us. And she has been on Tarceva for about 8 months and each scan shows the size of the tumor about the same, but the activity is less and less each time. SHe's had a tough time with the toxicity, but she's also had a very nice response. All this is to say - your dr is wrong here. I don't think this is one of those things where there is room for different opinions. If it were so that only non-smoking Asian women responded, then the FDA would label the drug for the indication of treating only that group of patients. It just isn't true, it is just that the odds are way better for a strong response in that subset of patients. This board alone is proof of how people in different subsets can still benefit from Tarceva.

I have to add my little science trivia here. The Dr that postulated that ulcers were due to a bacterial infection was pretty much laughed at by the medical community. So, he did his own study with an N of 1, he infected himself with H pylori, and whaddya know, he got an ulcer. I'm glad to hear the DoD is taking on lung cancer. Certainly they have done their part to promote smoking, I have a brother who smokes, and as he says it was one of the things he brought back from Viet Nam with him. Had a boyfriend who took up smoking for the same reason as said above, it was the only way he could leave the Navy hospital he worked in for a short break. Also though, the DoD has funded a very active and successful research program into breast cancer. It's about time the spread the wealth around, so to speak.

Lots of positive vibes your way! I sent you a PM with Kelly's results but we were quite pleased. Though for her, a CT would likely have not shown much as it seems the size isn't doing much changing. But her SUV keeps going down and this time, the surgeon that implanted the fiducials has postulated that maybe the SUV of 3.1 is actually inflammation and not active cancer. Oh here is hoping that is so! Can't wait to hear Joel's results. Kelly was exhausted a lot during the procedure too, but that got better rather quickly.

It is such fun just looking at the pictures, I can only imagine how much fun it was being there! Good for you and what a great idea. Glad you had so much fun and so many Harveys and Lucys to celebrate with!

Not knowing what the drug is, all I will say is, give it a little time. Fingers crossed (after I'm done typing) that although you don't feel today like it is doing any good, that maybe it is something that will take time and/or several injections before a beneficial effect is seen. Ok, off to cross my fingers.

Good luck Kasey!! People that do these everyday all day, are amazing at how they can find the smallest of veins. I've got high hopes.

YAY!!!!!!!!!!!!!! Great news!!

So nice waking up today without the same fear as yesterday, I'm going to enjoy these 3 months. We did do a little celebrating. At lunch she tried to order a glass of champagne and the waitress recommended something called a French martini - equal parts grey goose and chambord, then some pineapple juice. Mix it up and put it in the glass and top with champagne. It was TASTY! Kasey, I am working on another video with more pictures in it, that one is taking a bit longer but when it is done and I figure out how to compress it (still learning lots on my new computer), I'll load it up to youtube and share as well!

We met with Kelly's doctor today and I was about to scream at him - TELL US THE RESULTS, since we were a good 10 or so minutes into the appt and he was still asking Kelly a lot of questions. Which just made my mind wander, worrying he was putting off bad news. In his defense, she was in the hospital last weekend due to her just not eating a dang thing and sending her magnesium levels plummeting. So he was looking into how she was doing now. But I swear he must have seen me fidgeting because it was like right in the middle of a sentence when he said "oh and the scan results are good, I'm sure you were wondering about that". YOU THINK??? I did say, I was about to ask for some imodium for me. So, the tumor is still there, and the size doesn't seem much changed, but the SUV went down yet again, from 3.9 in May to 3.1. Nothing new shows up either. So, here I am in the "good news" folder, and it feels quite comfy in here. I'm hoping to stay here for quite some time!

I'm so very sorry for your loss Jean. My sister means the world to me, I can only imagine what you are going through. Your words let us see that she was a remarkable woman who was dearly loved. May you find comfort in that.