Yorktown Linda

Carole, I own a timeshare in Cabo San Lucas. If you decide to eat lunch in town rather than on the ship, I can heartily recommend Pancho Villa's. It's Mexican (of course), cheerful, wonderful and not very expensive. I'm not sure where the cruise ship port is but Pancho Villa's is in the downtown area not too far from the harbor. Have a great trip! Linda

Hi! I've been on alimta, avastin and paraplatin every two weeks since the end of May. I've noticed that everything tastes funny and it's gradually getting worse. My appetite is great and the first mouthfuls go down fine but then there's what tastes like rancid fat coating the roof of my mouth. Have you had this? What did you do? I'm sure it's the chemo 'cause my onc was in Italy and I had 2 1/2 weeks between last 2 chemos. Actually was able to eat fine those last few days. Linda

Ah Judy, that's what husbands are for. I think I would have a very tough time traveling this road without Stuart. I'd do it, of course, but it would be tough. Love your spirit. I've never been the energetic one but like your friend I admire you and would love to watch you bouncing around. Keep it up! Linda

Carole, I went on a cruise between my diagnosis and first surgery. It was a wonderful way to vacation and relax! You can go to bed and wake up somewhere new without the hassle of packing, driving, etc. If money were no object, I'd be on a Hawaiian cruise right now. Alaska is second. Before cruising I did some research on the boards on cruisecritic.com. In one post, I happened to mention the reason for my cruise. I guess the cruise companies monitor the boards to see what people are saying about them 'cause the very next day I got a free upgrade to a grand suite! Have a great trip whatever you decide, Linda P.S. This year I'm borrowing a friend's house in the Vermont woods for a week.

Sandra -- After my first alimta, I had fevers and extremely low blood pressure. Have you measured yours? Doc said it was amazing that I wasn't "fainting all over the place." Also my liver enzymes went way up. I was hospiatlized for 3 days to get the blood pressure up and the liver enzymes down. I've had 2 infusions since then with nothing but some mild fatigue. Hope your reaction setlles down and it works for you, Linda

I had 2 surgeries, one in May 2007 and one this past April. Last year's was a lobectomey (ULL) and it took me months to recover. I was still on pain meds 4 months post-surgery and was still very tired all the time. This year's surgery was a wedge resection and the recovery has been quite spectacular. The doctors told me this recovery might be slower because the same nerves and ribs were being cut a second time. But I feel much better already. I think the difference is that I had the second surgery at Sloan-Kettering and they had me up and walking a mile (yes, really!) the day after surgery. The walking seems to have sped up the healing process. We all heal at our own pace. Last year, when I was fretting, my husband reminded me that it had taken him several months to recover from hernia surgery. As long as the doctors feel that all is okay, I wouldn't worry too much. It's very important to keep on top of the pain. Maybe if he takes enough pain meds, he'll be able to move around more and speed his recovery. Best of luck, Linda

Karla, I'm so sorry. Thinking of you and your family, Linda

Kerri, Glad your mom is doing so well on the alimta. Gives me hope. I had a bad reaction to the first chemo on 5/28 -- elevated liver enzymes, fevers, severe hypotension. No one is really sure why. Had 2nd round on 6/14 and so far no side effects at all! Will continue every 2 weeks until next CT scan and then we'll see. Linda

Anne-- I was diagnosd 14 months ago. According to Dr. West on Cancergrace.org, I'm stage 1V but according to my onc, who really didn't want to be tied down, I'm stage 1A. I have had 2 primary tumors surgically removed (different morphologies), margins and lymph nodes clear, and AAH (pre-adenocarcinoma lesions throughout both lungs.) The AAH leads Dr. West to stage 1V; the fact that both primaries were stage 1 and the AAH are pre-cancerous leads my onc to stage 1. Who knows? Linda

I know that there have been many studies showing that routine chest xrays have no value, but like several other posters, my cancer was found on a routine chest xray during my annual physical. I think routine screening is a must at least for people like me --an ex-smoker and have lung cancer in my family history (my dad died of it). Lind a

Sandra, I am most definetly not a workaholic. In fact, I've always been known as the lazy one in the family -- not fair, I'm just laid back. When I was 16 I thought that the best thing I could do was break my leg. Then I'd be able to lie in bed all day and read and no one would pick on me. But when I was pregnant with my first, I had toxemia and was put on bed rest. I couldn't do it. I walked the dog, went down to the pool, etc. I was not employed at the time. My most recent surgery was April 28th. I fully expected to be back at work by now but a bad reaction to chemo has me still at home. I miss work terribly! A lot of that is due to missing the people. It's lonely here. But I also love my work -- I'm a librarian in a public library 35 miles north of NYC. I have talked my boss into letting me do some of the work at home -- reviewing and ordering books for the library. When I go back, I'll probably take it slow and work part-time at first but I can't wait till I feel up to it.

Kathy, You'll show them. Don't listen to the naysayers. When I went for my first chemo, I got to chatting with the woman in the next chair. She said she'd been doing this for 10 years -- she is a breast cancer survivor. When I made a face, she said that her first oncologist had told her that she had at most 2 to 3 months and that nothing could be done for her. So she went to my oncologist for a second opinion and 10 years later is still going strong! Linda

Renate, My 29 year old daughter has a chronic pain condition with some of the symptoms you described. She sees a doctor in CT. who is board ceritified in both pain management and neurology. He is always trying something new -- latest drug to receive FDA approval is giving her immense relief at the moment. My two cents worth would be to see a pain specialist and/or neurologist. They really can perform almost miracles. Don't give up! Linda

Actually, I saw him yesterday and called again today when I still had the fever. He put me on levaquin and said to call if temp went over 102. Otherwise to call Monday. It's kinda strange -- temp was 99.7 when I woke up this morning. Took 2 tylenol and was fine all day till about 4:30 or 5 when I could feel temp rising again. Took 2 more tylenol immediately but temp soared to 100.7 before they took effect. It's normal now. I guess I'll see how tomorrow goes. Thanks guys! Linda

Had my first chemo on Wednesday -- avastin, paraplatin and alimta. In the middle of the night, I woke up freezing with temp of 101.2. Saw my onc yesterday -- for neulasta shot and he said lungs were clear, surgical incision looks good. Alimta does list fever as a side-effect but he's never seen it. Have any of you? Tylenol seems to keep the fever under control but it was over 100 when I woke up this morning and I feel generally yucky. If this is as bad as the side effects go, I'll consider myself one of the lucky ones, but I was just woondering if any else has experienced this. Thanks, Linda

Thanks for all your replies. No need for woodsheds. The last thing I want to do is hurt Stu -- he's a very loving, gentle soul. I just need to get through to him that sometimes some repsonses are better than others. I think I'll just suggest that he read these post. That way he can quitely absorb the info without there being any direct confrontation. Thanks again, Linda

I know he means well but, as I sit here worrying about my first chemo starting in 2 hours, my husband is trying to cheer me up with inappropriate suggestions like : let's rent bikes and pedal over there or let's go out dancing later. It just so pisses me off! Professionally he knows better( he's a big-shot excutive who has been trained in NLP) but it's me and he's upset. I tried yesterday telling him that this just wasn't helping and a "oh poor you" would be much better but he just got upset. What do I do? Linda

Cathy, My heart goes out to you. This is not an easy road to travel when the docs and hospitals are doing everything right. What a nightmare for you! Hopefully, it'll all be uphill from now on. Linda

Lilly, I know just how you feel. There is one woman at work who smokes quite a bit. I used to gently chide her about quitting. When I was diagnosed, she couldn't look at me or be in the same room. It was as if she either felt guilty for my cancer or maybe that she would catch it. Anyway, I finally made a big effort to talk to her -- just work things, not health -- and normalized the relationship. Not for her, but because it was making me so ucomfortable. I get "happy talk" from my boss. When I asked for medical leave before my first surgery, she tried to convince me that I would soooo enjoy retirement. When I told her in Feb about my new tumor and probably needing anothe medical leave, she just pooh-poohed everything. When I scheduled the surgery, she was suddenly in an uproar, looking for a temp worker. She said things like "Do you really want to do the surgery so soon?", even though I had given her plenty of warning. She just didn't want to think about it. Others at work have been wonderful but I sometimes feel that they see me as the librarian with lung cancer not as Linda. I have 2 co-workers who are cancer survivors, one colon and one breast. The breast cancer survivor has been very supportive; the colon cancer survivor just doesn't want to talk about it at all. Enjoy your camping -- hope the weather is great -- and try to forget about work for a while. Linda

Gracie, My heart goes out to you and your family. Praying for you, Linda

Teresa, Please do everything possible to get your dad to walk, even if just a few minutes every hour or two. I had my upper left lobe removed last June and the recovery was awful -- pain and fatigue for months. This past April, I had a wedge resection at Memorial Sloan-Kettering. They told me before the surgery that they would have me walking a mile a day right after the surgery. Yeah, right. But they did! And this recovery is so much easier. During my week in the hospital, I saw patients who followed the walking protocol and those, like my roommate, who didn't. All the walkers seemd to be doing much, much better. If your dad feels unstable, maybe your doctor can arrange for a walker for him. I just can't stress enough what a difference the walking has made. Yes, I'm still in pain (and on perscoset) but it's manageable and I'm moving very easily. Not only does the walking lower my pain but it raises my spirits as I feel I am recovering! Linda

I'll be starting all 3 next week so I would appreciate any experience you have with these drugs. I saw my oncologist yesterday. He said that the tumor they removed in April was morphologically different from the one removed last year. It appears to be a different primary tumor. Lucky old me! The pathology report says that it is a poorly differentiated adenocarcinoma with extensive lymphovascular invasion. So it’s basically a more aggressive tumor than last year’s. There was no lymph node involvement seen on the CAT or Pet scans. Because I had just a wedge resection, no lymph nodes were removed and biopsied. The oncologist at Sloan-Kettering, Dr. Miller, recommends a wait-and-see policy basically because there is no evidence that chemotherapy helps in cases like mine. He is not against chemo and says most oncologists would recommend it, even naming the three drugs he would use if he did decide to do chemo. My oncologist in Westchester says that there are no studies showing what works (or doesn’t) in cases like mine ‘cause my case is fairly unique and there really are no studies at all. Had there been demonstrated lymph node involvement or had the tumor not been a candidate for surgical removal, there would be no question but to do chemo. He is more comfortable doing chemo just in case. He is going with the 3 drugs recommended by Dr. Miller at MSKCC – alimta, avastin, and paraplatin. Interesting -- I asked Dr. West at cancergrace.org how he would stage my cancer as I had 2 resectable tumors in left lobes plus scattered precancerous lesions throughout. He said stage 4 as the cancer was in both lungss. I asked my oncologist yesterday and he first said that staging doesn't make sense in my case, then said that the precancerous lesions don't really count (anybody could have them) and the two tumors removed were both stage 1A so if pressed, he'd say stage 1. Very confusing! Anyway, he says my prognosis is good, so on we go, Linda

Hi, I think it may be a case of noticing more MS patients 'cause it's on your mind. I remember years ago when I was trying to get pregnant it seemd like every other woman on the bus was expecting a child. It was just where my mind was at the time. I suppose though that there could be a connection. Both MS and diabetes have auto-immune components and there's no reason to assume that lc doesn't. Linda

Barbara, I agree with you entirely. I sure think CAT scans are in order, especially for smokers or ex-smokers. My point was that most doctors don't even do routine chest x-rays anymore. I am an ex-smoker whose father died of lung cancer, yet most of my friends (doctors and others) were very surprised when they learned that I had had an x-ray as part of my annual physical. After my diagnosis, my sister went to her doctor and said that her father had died of lung caancer and her sister had just been diagnosed, so could she please have a chest x-ray. He immediately ordered a CAT scan -- fortunately negative. I didn't mean to imply that chest xrays were better than CAT scans, I just wanted to point out that no one is even doing screening chest xrays anymore. I'm glad you found a doctor who ordered a CAT scan and that Bill is still with you! Cough, fire-fighter, ex-smoker -- seems like a no-brainer. But what do I know, I'm just a patient not a doctor. Linda

I notice that the article says: The best hope for an answer to the screening puzzle lies with a large federal trial of 50,000 current and former smokers that is comparing spiral CT screening with standard chest X-rays to see which saves more lives. BUT routine chest x-rays are no longer recommended. I am one of the lucky few whose internist still does them, so my cancer was picked up early. I think they need a third group who are left to flounder until they develop symptoms. Linda