Renate

Had a Petscan yesterday, saw my Ocologist today. She recommended 36 rouds of Radiation and Tarceva. Have read all about the side effects, rash, diarrhea etc. The Nurse called the presscription to my Pharmacy and said, it is 4,ooo Dollars per month, but Medicare Part B will cover it. It is considered like you would have Chemo here. The Pharmacy told me Part D would cover it and have to call my Part D first to get it approved. I know that many of you have taken Tarceva and maybe some of you are on Medicare Part A & B One more Question. How long can you take Tarceca ? And are the rashes all the time? Is it very bothersome. Thanks, any input is appreciated Renate

Hi Becky, I am extemely happy to hear you are Cancer free. What a wonderful feeling. You gave me a lot of encouregment I thank you very much for all your advice. When I had Chemo in 2005 for cancer in the anus canal, I had very bad blisters in my mouth. It was very painful. The Doctor gave me a prescription to coat the inside of my mouth it helped a lot I do remember now since you mentioned it. I guess I will go through with it like everybody else. Renate

Dear Connie, It's always nice to hear from you and see your picture, you are a long time Cancer survivor. As you said I will rest whenever I am tired. When I had my 36 radiation treatments in 2005 for Cancer in the Anus I slept most of the time. I had no burns on the outside, but inside and it is still sore and hurts sometimes. Thank you for your input. Renate

Your Sisters radiation treatment sounds encouriging. I hope I will be as lucky as she was. Thank you for responding. Renate

Hi Carleen, I am so sorry about the loss of your husband. He passed away much too early. I always think I had my life and when I see young people in the Chemo room, my heart goes out to these fine young men and or women. I hope you will be healing a little bit as the years go by. Thank you your input was helpful. Renate

Hi Patti, Have you finished your radiation? And how has is affected you? I hope very much the Mets have disaapeard. Have been thinking about you a lot. Aws good to hear from you. Hugs Renate

Hi Connie, Thanks for your good wishes and advice. I am sure I will come back to the board crying for help. My Onco said there is a only 30 % chance of survival. Not very promising. Last night I thought if it's worth to go through with the radiation treatment? Will see the Onco today and hear about the Pet Scan results. Renate

Thank so much you Ned, it works. I could not answer and thank all of you for your replies, due to being attmitted to the Hospital last week. My Cardialigist sent me to the Emergency room, he thought I had a stroke. MRI and Ct Scan of the brain did not reveal that. I had dizzy spells & blurry vision, could hardly see anything. Now I have to see a Neurologist again. This was like an episode of my Neuropathy. And all of this above getting Radition soon. HAd a Pet Scan yesterday, see the Onco today. From all the side effects you have told me about, it scares me to death. Renate

A warm hello to all of you. was thrilled to hear from you. Patti,so sorry to hear you have to go through radiation again. Hope it goes well. Yes, It was the Fentanyl that dragged me down. I got weaker and weaker. Monday 8/10 I will have a Pet Scan. Will take it from there. Thanks for the advice about the radiation. I would like to shorten my profil and do not know how to do it. I am sure Ned has some ideas? Thank you in advance. Wanted to go to Germany to see my Family, I think this will have to wait. Renate Renate

Had my last Chemo in May 2008 and had to stop any further treatments due to severe Neurapathy.My Neurologist put me on Fentanyl. I got weaker & weaker, was most of the time in Bed with pain. Could hardly walk anymore, The Neurologist told me, this is what Nuropathy does.In Febr. 2009. Medicare appoved a Power chair. I had lost 20 Pounds. The end of May, my husband said you have to go to a Pain Clinic. At About the same time I forgot to replace the Fantynyl PAtch for 3 Days and realized it did not do to much to control the pain, and I did not replace it anymore. I was feeling better and better every Day. I got my strengh back, I am driving my car again after 1 1/2 years. I gaine weight and doing geat for the first time in one year. Recently I had a CT Scan and ond of course my Cancer has grown. Still everything inside the lungs. My Onco recommended 6 weeks of Radiation. I am scared what side effects I will have to endure. Any input? I just found my life again two month ago. And here we go again. Would love to hear from you. Renate

Hi Sandra, Thank you so much for your kind words I am still hanging in and wait for the next scan to see what happens. Renate

Hi Ned, Thanks so much for asking about me. Right now I am doing Occupational Therapy, as well as physical Theraphy. My Onco and Neurologist can not understand why the Neurapathy goes worse. They both think it should have stopped right after the chemo. I saw the Neurologist yesterday, he said he thinks I have cancer in the Nerves. In order to find out he would have to do a Bispsy. After that my hand would be paralized. I am not willing to do this. If it is cancer, I will not do any more treatments anyhow. I will just let go. In addition I have seen an Accupuncurist someone I have know for a long time, she is an Anestiologist with a PHD in Oriental Medicine. She told me it would perhaps release some of the pain, but not cure the Neurapathy. My pain is pretty much under control as long as I take all the painkillers which make me sleep most of the Day. Renate

I had a hard time finding my way around this message board and added some news to my profile in the meantime. I have not been here for a while until my good friend Patti B. e maile me, telling me that you asked what happened to me. My Neurapathy is progressing very fast. I posted about this before. It is killing me. Now I am typing with 2 fingers, since all the others are stiff and numb. Going to Occupational Theraphy, which helps a little with strenghening. Also Therapy for balance since my feet are totaly stiff, which makes it hard to walk. Taking lots of painkillers the esult is that I sleep a lot and do not feel the pain.The painkillers do not take the pain away, just taking off the edge. My husband is my total CAre taker, he does eveything around the house, since I can not do that much anymore. As I said in another post. The cure took my lie away not the cancer, this will come later, just waiting for it. I have no symtoms, but my Cancer is rated 3A. My Onco said it will ihit you sooner or later. Renate

Hi Bette, I am very happy for you regarding the Neuropathy, and congratulation you will soon be a 2 year LC survivor. Your Cancer was discovered early an that is the key for survival. I do undrstand your Neurapathy was almost as bad as mine. I would like to ask you a few questions if you do not mind. Did you get the symptons already after the first Chemo treatment? Or did it accumalate? What Medication did you take ? Neurontin or Lyrica ? And what kind of Painkillers. And most important: How long did it take to go away? I am seing another Neurologist who is specialized in Neuropathy next Wednesday. I feel it's getting worse every Day. My husband has to do all the household chores. My fingers are getting stiffer every Day. It takes a long time to type this message. I see myself in a wheelchair petty soon. I have a walker already. Renate

Hi Rich, I am taking B12 and have tried Neurontin. It stops the stabbing and tingling. You are taking a very high dose of Neurontin. I am on Lyrica now, it works better for me. Renate Hi Carole, I have read your entire Profile and must say you went through a lot of side effects. You said you have no symptoms or any pain, neither do I. My Onco put me on a research progrom, for people with LC and no side effects. But sooner or later something will pop up. Renate

Ned, You are right, this Neurologist should have said, a few mayby's. I will see another Neurologist 7/2 and hear what he has to say. You know I am not very familiar with the board and I could not locate Ernie's post's. Pattie B. told me the easiest way, but could not find it. Maybe you can sent me a PM with the link. I would appreciate it very very much. I have an appointment with a Pain Clinic next week and hope they can help with the pain at least. And Acupanture is also on my mind. Thank you Ned. Renate

Thanks to all of you. You have given me a world of information. I am taking lots of Vitamins every Day. Lots of B 12 Fish oil. etc. Will have a second opinion with a Neurologist in July. Thank you again. Renate

Patti, What do you know about supplements? I am confused. Is this what Randy is referrind to? Or who is EMROL EMIES? Do you know? Renate

Thanks Randy, Could you please help me find " Emrol Emies " Posts ? Renate

Saw the Neurologist today, he will make arragements for me to see a Pain Clinic. I asked him, what can they do for me. He said they could give me Steroids, I ask how long will that last. He said it depends, from 3 month - 3 years. I am desperate and must try eveything, since this disease seems to go fast to destroy me, not the Cancer. The Neurologist said, it will not get better, but worse. You might not be able to dress yourself and eat without help. I feel how my knee's let go, my hands can not hold a knife and fork properly anymore. I have no symptoms of Long Cancer at all. I am asking myself : Will I die from LC or the Neurapathy? I can not tell or express my anger, about my situation. When you read about side effects,do you think they will last forever ? Tingling, stabbing. What do you think? I thaught this is just during the Chemo and will go away. I complained after the very first Chemo, he decreased the Taxol, I complained a lot more after the 2nd and 3rd the Onco said only one more. After the 4th I said that's it. By that time I was already on Painkillers, Morphine Lyrica and my life was gone. Onco wants to put me on Avastin until something pops up. I said no, I wait until something pops up without the Avastin. He said: I am sorry and left the room I am more than depressed, angry und very upset. Renate

Ned, you are giving me hope,maybe a miricle will happen for me too. I did tell my Onco. Dr. Ramlingham a well respected Lung Oncologist after my very first treatment ec. I can not undertand it either, that he went that far. Sometimes I have the feeling these Doctors want to experience certain treatment planes. Emery University prides itself as one of the best Cancer Clinics. Right now it gets worse with the Neurophaty. I will see a different Neurologist 7/2 and will see what he says. I am desperat and will do whatever it takes to get better, but right now by 8 PM it is so bad, I just want to go to bed and take the Morphine and slep. One more question for Ned, since you seem to be a Computer Expert. How do I insert my picture. I did try, but my picture is too big. I do not know how to decrease its size. Renate

I had 4 Carbol Taxol teatments and I can hardly fuction anymore. Hands and feet incl. knees are numb and stiff and very painful. Have seen a Neurologist, he told me I have to live with it, if I would be young the nerve endings would repair itself, but not at my age. I take Lyrica for the stabbing, tingling and burning and Morphine at Night for the pain. I had a Scan done last Monday and will see my Onco tomorrow. He wants to put me on Avastin. However, I will not take any Chemo anymore. I have no symptoms of Long Caner. I just wait for it to come up.My Onco said: Will put you on Avastin and wait until something pops up. From exercising 5 times a week, playing Tennis & Golf I will pretty soon be in a wheelchair. Can you imaging how angry I am? Thank you for letting me vent. Renate

Hi Debi, I am sorry to hear you also have this terrible pain, that Neurophaty can give you. I had it prior to my Chemo treatments also from surgery in my arm. Damaged nerves can repair themselves over the yard. Did you try Neurontin and Lyrica for at least one month. Both Medication need some time and must be increased slowly ovet time. I am sure you will get relief if you have tingling and stabbing pain. Renate

Ned, thanks I changed it already. Now I can read your profile. Renate

Hi Connie, Thanks for writing. Please ask your friend how she is dealing with this. And as you said it was so painful, that lortab did not help and my Onco gave me Morphine. Then I had to wait for this morphine one week. No Pharmacy had it in stock. By the time I received it I only used it twice. The pain comes at Night. During the Day I could not take Morphine.Last NIght I did not take it ether. I do not want to get hocked on Morphine. I was shopping for a pair of shoes today. I walked through the mall like sombody who has MS. I have no balance. Thank God I have my Husband who goes with me everywhere. Coniie the type setting is so small I can hardly read it. Can I somewhere enlarge it? Do you know? Hugs, Renate