Patti B

Kjude - I will be thinking of you tomorrow at 1:00 pm and saying a prayer for you. Patti

Hi again Kjude - I had my first treatment of Alimta this past Friday. So far, all is well. The only thing that happened is they put me back on some anti-naseau pre-meds and they always constipate me terribly!! I have had no naseau and actually - my SOB is better than before I took the treatment (could that be just a coincidence??)) The Alimta only is infused for 10 minutes - I was like - is this stuff really going to work?? Don't know if the fatigue is something that has to build up after several cycles or not but right now I feel really good!! Hope yours goes great - keep me posted!!

Peachy - after reading Neds reply, I remembered that I had a terribly hoarse voice after the Carbo/Taxol. It didn't hurt, but even strangers commented on my "laryngitis". As soon as I began taking just Avastin, it went away!!

Fillise - Hope your mom is doing great and the extractions weren't too bad - my oral surgeon refused to put to me to sleep for it because of my lung cancer. Had to do under novacaine - hurt like hell for the first day. Wish you both well!

Hi Peachy- I started out on Carboplatin/Taxol/Avastin and I did tolerate it fairly well. Of course, I lost my hair but then it sounds like you already have. The pre-meds they gave me of Decadron/Aloxi/Pepcid really worked - I never threw up altho a few times I felt a little naseau. I had a few mouth sores (start rinsing with salt water rinses as soon as your chemo is over) and I had a numb, tingly tongue that drove me crazy!! Other than that, I was just really tired all the time. The Aloxi - which worked wonders for nasuea, constipated me terribly. So I would drink a cup of Senna tea and that worked fine. After 6 cycles, I went on Avastin only - what a piece of cake. The only side effect I had was elevated blood pressure and they were able to control that by meds. I got all my energy back and really did not feel like a cancer patient at all. Keep in touch - hope this helps a little. I'll be thinking of you!!

Hi everyone - just sending this post out to make sure that people who have bone mets and may be on Zometa (and I hear Aredia, also) should be very careful if they have dental extractions done. I was on Zometa for several doses and then stopped because my scans were much better. When I was first dx'd with NSCL a year ago, I knew I had a problem tooth that the dentists wanted to do work on. Of course, that went on the back burner for so long. 3 weeks ago, my tooth abcessed and I had to go to an oral surgeon and once he found out I had been on Zometa, he would not pull the tooth until I did a week of antibiotics and signed a million papers as a release form. I guess, Zometa, Aredia (and also Fosamax altho given in pill form this is less likely to occur) are all considered biphosphonates. Biphosphonates stay in your bones for up to 10 years and with dental extractions can cause osteonecrosis of the jaw (AKA dead jaw). The consequences of getting this can be that the extract site never heals, continual infections of the jaw, pieces of the dead jaw falling out into your mouth (gross), and on and on. Even if your jaw heals, there is a possibility that you can fracture your jaw by eating something very hard or even brushing your teeth too hard!! The oral surgeon did say that this is ONLY a possibility and that he has seen in but only with patients on Aredia SO FAR!! So please be careful and make sure if you take any of the above meds that you let your dentist know. And please do not ignore dental work that needs to be done - it was just so easy for me to say, I hate the dentist, I am only going to worry about my cancer right now. So far, my jaw seems to be healing well, the dentist is seeing me once a week and then in two months she is sending me to an oral surgeon who has actually done lectures on osteonecrosis of the jaw. Would like to hear from others who may have had this problem or know anything about it!!

Hi Trudy - I only found this site a week ago (guess thats why I haven't had time to put in a profile yet) but I can't wait every day to see the postings!! They fill me with so much inspiration and hope. You hear all this from friends and relatives how you're gonna make it, you're strong, etc, etc., but until you hear it from another cancer survivor, to me its just not the same. Keep up the good work with shrinking that tumor and remember - so much of cancer treatment is a good attitude and not being willing to let the cancer win by bringing you down. I try to keep my tears to a minimum as much as possible. Will be thinking of you and everyone in the "club"

Please, please, please get a second opinion!! My oncologist actually recommends that all patients should do that just to put them at ease!! There is absolutely no reason for your dads doctor or the nurses there to treat him like that!! I go to the Cleveland Clinic and everyone there is wonderful. My chemo nurse always gives me a huge hug, and once when I had to go in for a Neulasta shot, the nurse realized it was my birthday and all the nurses ran over to me to hug me and wish me happy birthday!! The way they treated you and him is totally unacceptable and unprofessional. If you can convince your dad to see another doctor, then I would write a letter to the hospital administrator and report them!! Will remember you both in my prayers. Good luck with whatever decision you and your dad make and I am hoping you a wonderful wedding day.

I know this is an old posting but after laughing over so many of these stupid things people say, I wanted to tell you all about my experience. I was out in the back yard and had on my scarf. My neighbor, hes in his twenties, came out and was talking to me and asked if the scarf meant what he thought it did. I said yes and we were talking about my treatment and at some point I said, yeah, life can suck sometimes. He looked at me and said, I think I know how you feel, when it rains my car won't start!!!! Boy, I'm glad I don't have his problems!!

Hi Kjude - How intereting that you posted this question - I will be receiving my first dose of Alimta this Friday 10/12. I started on Avastin/carboplatin/taxotered for 6 cycles and then for the past 7 months on Avastin only until my last weeks CAT showed growth. Avastin has virtually no side effects (at least for me) so it is kinda scary to go back on a chemo that might make me sick. I have read on other forums that Alimta seems to run the gamut in people - either extreme fatigue or no side effects at all. Hopefully for both of us it will not cause us a lot of side effects but still be effective. Will post another note after my first dose to let you know it went. Good luck to you!!

How interesting that I see this posting. I just made my one year of being diagnosed this past Saturday. My 15 year old son asked me "Mom, what are we going to do to celebrate your one year? I thought to myself, why would I want to celebrate the darkest day in my life so far?? And then I realized that it was something to celebrate - originally the doctors gave me one year, maybe two. And here I am still doing well after one year. My husband wasn't sure about calling it a celebration, but we went out to eat and spent time with each other, which, I guess, was the most important thing of all. I am new to this website and have read many of the postings and already feel like I have found a lot of new friends - God Bless you all!!