wenna Posted April 5, 2004 Share Posted April 5, 2004 Just getting so I can type again and catching up on everyone. I've noticed a lot of new names, sorry you had to come but glad you have. I am (so far) one of the lucky ones have been told I'm in remission. So now for the update for those that know me. First I'd like to say, I had another full body bone Pet Scan done and a CT of my chest. NED!! Yes, I love him too! Now the but.... the PCI totally screwed me up. Sorry for the bad language, but I'm still ... angry?.. no, not the word I'm looking for. I just regret that I had it done. I have had so many complications since then that it's been hard to keep the spirits up. Thank God for my hubby (caregiver)!!! I've had surgery on my elbow, been in the hospital twice, dehydration, blood pressure problems, sugar problems and now there's this bump/cyst? on my upper lip. They are having the cyst removed and sent in for biopsy... yet more carving. At least this one is a cosmetic surgeon. Absolutely no strength ... I'm also losing muscle mass all over my body. I've lost 30# since having the PCI and 17# just in the last 2 months. Guess I've turned this into a "venting" post, sorry. I don't know how much all this is from the PCI and "they" can't tell either. I do know the swelling and scaliness on the head and the dead skin cells in the ears are from that. Memory was really bad but is getting better. So they keep treating the symtems of each case. Just fustrating. Wish me luck on my next bout! Of course I worry that it's another tumor.. but the blood work looks great so maybe not. I hate waiting!! Thanks for listening and hope this wasn't too long a post. Marilyn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 5, 2004 Share Posted April 5, 2004 NED, and it is almost a year! Great, Marilyn! Here's hoping the other stuff gets better. Don Quote Link to comment Share on other sites More sharing options...
TheresaKB Posted April 5, 2004 Share Posted April 5, 2004 Hi Marilyn, Don't we all just love NED??!! Congratulations! Wish I could say something of help for the PCI problems but just want to let you know that you are in my thoughts and prayers. Praying that whatever's bothering/ailing you eases up soon. Theresa Quote Link to comment Share on other sites More sharing options...
ginnyde Posted April 5, 2004 Share Posted April 5, 2004 Marilyn, NED is my favorite word. Sorry about the probs from the PCI. Earl had WBR and he has a lot of residual problems from it. Hope you keep on keeping on. Ginny Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted April 5, 2004 Share Posted April 5, 2004 Hi, glad to see you back! I'm beginning to think there just isn't enough info available on PCI. Did you see the poll I posted about it? My mom is wondering whether or not to have it. I hope you will continue to gain strength. Funny how low you can feel, even with NED. My mom says, "The good news is, I'm in remission. The bad news is, I'm sleeping through it." Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted April 5, 2004 Share Posted April 5, 2004 NED is a good thing! Sorry to hear about all the other problems though. A suggestion ... go and get a big ol' jug of Weight Gainer 2200. Rite Aid, Savon and, I believe GNC carry it. It comes in 3 or 4 flavors. Make up a power shake with your favorite ice cream in a blender and drink it down. It stopped my weight lose cold. Dean Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted April 6, 2004 Share Posted April 6, 2004 Marilyn, I had the scaly head and plugged ears also but they do go away. My hair is coming back in (unless this round of chemo knocks it out again). My memory loss comes and goes and I don't know how much is due to PCI, Chemo or "old age"! There are days I wonder if it was worth it but then I think if it gives me one more day with my grandson it is sooooooooooo worth it! Hope things improve for you soon. Prayers and best wishes headed your way. God Bless, MO Quote Link to comment Share on other sites More sharing options...
awpoint Posted April 6, 2004 Share Posted April 6, 2004 Marilyn, I have been wondering about you. So sorry about the PCI. Are you getting Physical Therapy and Occpational Therapy? You really need it to try and rebuild some of your muscles. Avoid Dehydration!!! Try Deans shake and get therapy. Are you seeing a neuroligst? The Nuero finally got my husband back on his feet. He ordered all the therapy. And he said keep it up longer than just the regular amount. All together I think he had about 4 times the normal amount. Best wishes to you--you can do it. Anne Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted April 6, 2004 Share Posted April 6, 2004 Marilyn Congratulations on your return to posting. It is really good news to go so long without any sign of the SCLC return. In the six months they have been treating me, my brain has deteriorated without PCI. I know there are papers out there that claim chemotherapy causes much of the mental problems. It is a nasty disease and all of the treatment modes use nasty poisonous and deadly violent cures. The medical profession has only gross and crude tools to help us. Perhaps one of these days they will find something besides a hammer to beat SCLC. Dan Quote Link to comment Share on other sites More sharing options...
paddy Posted April 6, 2004 Share Posted April 6, 2004 Hi Marilyn, The NED thing is good news! Don't frighten yourself by jumping ahead. Just take your time, I am sure everything will turn out OK. Will keep you in my thoughts and Prayers. Paddy Quote Link to comment Share on other sites More sharing options...
wenna Posted April 6, 2004 Author Share Posted April 6, 2004 Thank you everyone for the words of encouragment! Just what I needed!!! I am truly trying to live by that quote in my signature. But for a person like me that's so hard! Anne, I have a few extra "conditions" thrown in. The major ones being heart disease, diabetes, Epilepsy, lower back pain (what a mess) and COPD. I have a closet full of doctors and specialist.. The mess with my spine keeps me from doing alot of the therapy but I do what I can And I must say.. to me they are all the tops in their field. I'm lucky to have them on my team. Thanks again everyone! Marilyn Quote Link to comment Share on other sites More sharing options...
karen335 Posted April 14, 2004 Share Posted April 14, 2004 Hi Wenna, Praying for you that you get over this little hurdle and things start looking better as far as the PCI. Glad to hear you are NED, you are cured. Those are both awesome words. I pray for your continued good progress and health... Blessings, Karen Quote Link to comment Share on other sites More sharing options...
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