Yorktown Linda

I took Wellbutrin for hot flashes -- supposed to be the best for that. Did my research later -- what a mistake! Once you are on this stuff, it's supposedly almost impossible to get off of it.

These guys are terrific. They really seem to know what they are doing.Not just the big things, med-wise, but the little, comforting things. Such as drinking through a straw -- I was having choking issues. I wish I could talk my husband into in-patient hospice as he seems so over-whelmed at times, but I guess he would miss being there. Anyway, I can unequivocally (assumming I've spelled that correctly, what's it worth in Scrabble?) recommend these guys. They've been there, done that and they're very good at what they do! Linda i

Didn't mean to sound like I wanted money for it; just wanted to find it a new home. If you have any ideas, please let me know. Linda

I have a $1000 wig from Tiffany Wigs, insurance paid $500. Won't need it much longer. Does anyone know someone who could use it? Linda

So I woke up choking and couldn't catch my breath. My husband gave me some morphine and ativan but I still had trouble breathing. After some investigating, it seems that one of the cats (I suspect Bert) had chewed through the oxygen tubing. I don't know know when. Right now I've turffed them out -- except for fatty, he just lies there and purrs. Anyway, the cats keep me going and give me joy. I don't want to get rid of them. Has anyone faced this? What have you done? Linda

Thanks to the hospital nurses who kept ignoring my complaint of constipation, I left the hospital not having gone in over a week. The hospice nurse de-impacted me when she brough me home but there was still much to come. The nurse increased my meds and spoke to my doc about other options. She and the home health aide are due in abour an hour. But I woke up covered. Need I say more? My poor husband. Don't see how my daughters (29 and 26) would have coped with this. I know he says it goes with the territory but this is so unfair! Linda

(((((((Marci))))))) She and I seem to have made this journey together. She knows you were always there for her. Take that with you as you go forward, Linda If there's anything I can do in the time I have left, please let me know.

When I first started reading these boards, Dr. West was discussing a patient who seemed to be sleeping more and more and he seemed to feel that at some some point she would just slip away. I remember thinking, yes I can do that when my time comes. Well, it seems my time has come. On my cruise I seemed to get shorter and shorter of breath. The day after I returned home I was admitted to the hospital. While I did have some fluid on my lungs (310 ml drained from the right side), this was not the main problem. Rather I seem to have more and more tumor and less and less lung. I am now home on hopsice care with morphine, oxygen, prednisone, etc., etc., etc. Anyway as I said at the beginning, I think I can cope with slipping away. But I have had a few coughing/choking attacks. The thought of choking to death, sort of drowning on my own lung, scares the hell out of me. I t is the most unpleasant feeling and I'm not sure I can take it -- not that I'll have any choice. So I guess I'm hoping for some reassurance that as things get worse they'll increase my meds so that maybe I won't be aware of what is actually happening. Any possibility of that? I'm so scared, Linda

I've been on alimta (in combo with other drugs) every 2 weeks since the end of May '08. The neulasta shot was scheduled automatically -- changed to neupogen when I switched from paraplatin/avastin/alimta to taxotere/avastin alimta. My blood work has always been good so I can't say if the neulasta was necessary. As it it no big deal for me to get to my onc -- about 20 minutes away and my semi-retired husband is happy to drive me -- I don't mind going for the shot. Good luck, Ned! Linda

I saw my oncologist yesterday. He said I seemed much improved and okayed the cruise, though he will keep me on biaxin for the duration. Yay! I'll be sending you all warm thoughts. Linda

Marci, I first had paraplatin/avastin/alimta then taxotere/avastin/alimta. As you know, like your mom I did not react well to the taxotere. I had no real side effects before the taxotere, so I guess the alimta was rather easy on me. I hope your mom has the same result. Linda

[quote They are taking her off also. It really did a number on her out of all the chemo's she has ever been on. Get well soon- Marci Marci, What's your mom on now? Linda

Great picture. Thanks for sharing, Linda

Hi all, Okay, saw my oncologist yesterday. I’ve been extremely weak and short of breath. My cough is back and I’m hoarse. I have constant back pain, which is exacerbated by coughing. All in all, not good. He listened to my lungs and sent me for a stat chest x-ray, wet reading. He also said that he thought the hoarseness was caused by a swollen lymph node pressing on my vocal cord nerve. He called my first surgeon and asked him to stand by in case I needed to have fluid drained from my lungs. Uh oh! The radiologist said I had some fluid in my lower left lung (no longer have an upper left and the right was okay). She also said there was some consolidation (infiltrate) and the lung was partially collapsed. She didn’t feel that there was enough fluid to merit tapping or draining and sent me on my way. I called my oncologist, who set up an appointment for tomorrow, started me on a new antibiotic (biaxin), said it appeared that the chemo was not working, said we should be thinking about changing drugs( gezmar instead of taxotere), and suggested that I think about cancelling my cruise – Feb. 1st through the 13th. Well, I am not willing to cancel my cruise, so I guess I’m going to have a fight on my hands. Fortunately, we are sailing from NJ (about an hour’s drive from home), so air travel is not an issue. If, as it appears, my long term prognosis is not great, it’s definitely time to have some fun and create some good memories. Before I saw the oncologist yesterday, I was thinking of stopping the chemo as I agree that it is not working (tumor markers continue to rise) and I haven’t have a full day out of bed for months. It appears now that many of my symptoms are from the pneumonia and not the chemo, so I’m willing to reconsider. Bu I want my cruise first!! I can always take some biaxin with me in case the cough comes back and if everything goes to hell in a hand-basket, I do have insurance so the Coast Guard can airlift me to a hospital somewhere – don’t really expect that to happen though. Anyway, that was yesterday. Today my hoarseness is gone! So I guess, if it was a swollen lymph node, it was swollen with bacteria and not cancer cells. My back pain is better, coughing a little less, and I feel a bit brighter. Don’t think I’ll go out dancing – I’m watching the inauguration in bed – but maybe I’m not quite as weak as I was. Hooray for antibiotics! So that’s where I am. Short term, things are looking up. Long term, maybe not so good – but I’ll think about that tomorrow. I hope be in the southern Caribbean for the first two weeks of February. I’ll send you all warm thoughts. Linda

Barb, My oncologist usually gets the results the day after the scan and phones me to tell me what's what. There really shouldn't be any delay in finding out what the scan showed. Linda

My 26 year-old daughter smokes. When I ask her to quit she says: You quit 30 years ago. A lot of good that did you. I point out that her grandfather died of lung cancer, I have it, and she needs to do all she can to lower her odds. What else can I tell her? Is there anything that will get her to stop if she's just not ready? Any ideas gratefully appreciated, Linda

Hi all, I had a CAT scan Monday. Saw my oncologist Tuesday and he said I have pneumonia. Yay! The pneumonia could explain all my current symptoms – fatigue, hacking cough, shortness of breath, rising tumor markers, etc. The pneumonia so clouded the scan that they can’t tell the size or status of the 2 nodules I’ve getting chemo for since late August. My doctor says we’ll do another CAT scan after the pneumonia clears up and possibly consider radiation if the nodules are still there. Linda

When is a lung infection a good thing? Today! I went for my chemotherapy this morning and my oncologist said he thought that my cough might indicate an infection. He put me on levaquin and postponed the chemo until next Tuesday. That means that my trip to Philadelphia should be easier and I may actually to eat and taste (!) Christmas dinner. He also said that the infection might account for my CEA tumor marker continuing to rise. Personally I think that’s happy talk but we’ll find out next week. I have a CAT scan scheduled. I don’t think my New Year’s present will be as good. I keep you all informed. Enjoy your holiday! Linda

If my husband does not make it, I will feel that we have tried all options presented and be thankful that we have had the time together, even here in the hospital, to be close . You know, the past two years, we traveled the world upon retirement and kind of did the bucket list....not knowing the beast that was awaiting....but the time we have spent fighting this dreaded disease has been so poignant and brought our souls even closer together. For sure, every hour is a gift. Oh Linda, how poignant, how lovely. I am reaching the time when all I'll have left to give my husband and daughters are memories and I want them to be good ones. I have almost talked my onc into a 2 week break in Feb so we can cruise the Caribbean. I think that all too soon, I, like your husband will be in the hospital on my final run and I don't want that to be all they remember me by. Sorry you have to face this during the holidays but I know you will do so with the grace and love you have always shown. Another Linda

Thanks for all your kind words. One of the things I have done this year as I don't get out as much as usual is shop very carefully online. I'm thrilled with my choices, and the amount of money I saved, and am looking forward to exchanging presents. I missed chemo this morning as I had to pull of the road to vomit. What an embrassment. Don't do it often, maybe once or twice a week but there's never any warning, no nausea or anything. Onc did mention the possibility of reglan but I'd have to take it regularly as I've said I get no warning. I really don't want to add any more drugs to my regimen. Also my daughter had a very scary reaction to reglan a few years back -- muscle spasms every where -- and I had to take her to the ER by amublance. Certainly don't want to go through that. Guess I'll just smile, tough it out, say the right things and then go have a nap. As long as I keep the tree and cards far enough away form the menorah, we should be okay. Please enjoy your holidays as best as you can. I hope this current economic situation has not put a damper or worse on your holiday spirits. Linda

First I want to thank all of you for keeping this magnificent resource alive and well. I am having a hard time this year as the holidays approach. Last year at this time I was recovering from an ULL (June '07), had 2 negative CAT scans under my belt and was feeling kinda upbeat. This year the cancer has recurred twice(!), still just in the lung, additional surgery in May. I have been on chemo since June, first papaplatin/alimta/avastin and since Augst: taxotere/alimta/avastin. On a subjective level, my onc with his 30 years experience thinks I'm getting better even though my CEA is still rising and we haven't yet scheduled the next CAT scan. I'm just having trouble with the holiday spirit. I find myself thinking things like "Will this be my last Christmas?" or "Do I really want to usher in another year?" Physically I'm okay. I'm sure my symptoms (alternating constipation and diarrhea, nausea, vomitting, fatigue, shortness of breath and cough -- well maybe not the cough) is from the chemo and not the cancer. I go every week -- one week taxotere, the second week everything followed by neupagen the next day. Anyway I know this too shall pass but right now I'm not feeling great and I'm not sure it's doing anything for me. All the lights, parties, forced happiness just seem like too much to face right now. Any secrets as to how you cope. I really don't want to be The Grinch! Linda

I am on avastin, alimta and taxotere. And yes I get the neulasta shot the day after. I get what I call the "kicked-in-the-back" feeling the day after the shot but it only lasts for a day and then I'm okay again. Linda

Marci, There's a good wig store in Yorktown -- Tiffany Wigs. Your mom's wig should be covered by insurance so ask her onc for an rx. My hair has thinned to a very baby-thin covering but so far I haven't had the last of it buzzed off. I know I should but somehow it seems like admitting defeat. I do wear the wig outside of the house but I don't want to be completely bald when I'm home. We normally travel to my sister's at Christmas and I want to have hair when I get up to pee in the middle of the night. Silly, yes? One of the other things I got at the wig store is a fringe to wear under hats and scarves. My younger daughter is busily knitting hats for me for Christmas. BTW, her name slips me at the moment, but the woman who runs the wig store is a cancer survivor, has been through chemo and is very sympathetic. She also seems to have the knack for choosing just the right wig. Mine looks like my normal hair. Have your mom go, if she's up for it, while she still has most of her hair so the wig will look entirely natural. Thinking of you both, Linda

Marci, In late August I switched from paraplatin/alimta/avastin to taxotere/alimta/avastin. Since then I have been troubled by shortness of breath and I am now losing my hair. But overall I have to say I'm doing better. As long as I pace myself I can get out and around much more than before. I've made a couple of trips into the city to see old friends and am travelling to Boston tomorrow. Hope your mom does well on the taxotere, Linda

Ah Marci, You and your mom are really going through it! My thoughts and prayers are with you, Linda