Jenny G.

Just saw this on another forum and thought it sounds interesting. Has anyone read it? Beating Cancer With Nutrition (newly revised edition) by Patrick Quillin (a widely acclaimed nutritionist with Cancer Treatment Centers of America). This book gives therapies that can be used in addition to conventional means (chemo and radiation).

I am so glad to hear about studies like this!

Forgot to sign in, that's me above. Sorry

I've made it through the 2nd week. 19 total treatments behind me now. I had to miss one because of another problem which I'll post seperately, so they are adding an extra day on the end for a total of 31 treatments. This is flying by and I'm still holding up well to the radiation. They asked if I was having any swallowing problems and no I'm not. Then today my son had some crispy fried chicken and I took a piece and bragged about how lucky I was to be able to eat it, well, wouldn't you know it just kind of stuck there in my throat and didn't go down all that smoothly. A little drink and it was fine, but no more bragging. I ain't home yet. A different nurse gave me one of my injections and it hurt so bad I screamed, poor woman, I scared her and she pulled it out and stuck me again. That was the worst shot yet. They really are usually not bad. After learning how expensive this medicine is, I wouldn't dare complain, I feel very fortunate to get it and it just might be working. I'll post again next week. Thanks for the support. Jenny

I also hear a lot about red clover being beneficial. What do you know bad about it? Just starting to look into alternative therapies. Jenny

Me too.

Wow Dave! What a thrill, you are truly blessed. Jenny

Are you getting 3 different chemo meds? That's already more agressive than my treatments and it sounds like things are going well. Just ask him about referral for radiation. There are varying opinions on when is the best time to start, but I felt like I had to push things along in that area, I was anxious like you, to do all that I could. It is important that you have faith in your doctor. Any other health problems you have will affect the treatment plan - they don't want to kill you with the cure. Stay positive and learn all you can. Jenny

Don, I love that you are here! I enjoy your comments so much. Jenny

Hi Greg, Glad to see you back. On my first visit to the oncologist he suggested I might go on disability. I don't know what the future will bring, but as long as I feel able to work I want to continue to do so. If I sit at home, I just have more time to think and it can get depressing. Also, I have a lot of other issues to consider, such as insurance (health and life), my retirement benefits, wages, etc. How do you feel? What kind of leave options do you have? Could you live on disability? There are a lot of things to consider. I'm glad to hear you're a fighter, you'll need to be. As far as prognosis, be sure to read the following article. http://www.cancerguide.org/median_not_msg.html Personally, I was told that my cancer was not operable and not curable. I know this is not always the case. My doctor also said that diabeties and high blood pressure are also inoperable and incurable, but they are treatable. The statistics I found didn't look very good, so I asked him in general terms what the realistic expected outcomes were. I was ready to hear this information, some people are not and would rather not know. The fact is, no one can know, there are just too many variables. Continue to fight and know that we're all in this with you. Jenny

Natural remedies include spearmint, peppermint, marijuana. Have you asked the doctor for different medications? What is he taking now?

Hi everyone, Thought I'd give an update after finishing the first week. It went really fast. I have had 10 treatments and to answer John, I believe it is equal to a normal course of 10 days (given in 5). My total will be 45 gy (150 units, 30 fractions). I must admit, I don't know what that all means. Each twice daily dose is divided into 2 parts, one from the front and one from the back. He told me that my next week's treatments are already planned out and will change a little in the angle of entry. He thinks things are going well. On the first day I experienced a little feelings of nausea, I had not eaten anything that morning and felt better after I ate. Each day after, I tried to eat something every morning before treatment. No more nausea. On Friday, I decided to try to do without the compazine, but about 45 mintutes after the injection I felt a slight bit of nausea and took the pill. I found out that I am a test case for the Amifostine being used for lung cancer radiation. He believes the salivary gland protection may extend as far down as the stomach. Also, the company that makes this drug will work with your insurance company to get it approved because it is more cost effective than treating the problems it is designed to prevent. I was also told that the company will provide it at no cost for those who have nothing. I guess it's still too soon for the side effects to hit me, but I feel absoutely great! I was pretty tired Monday thru Thursday, but by Thursday night I felt almost hyper and still do. Any ideas what this is about? I actually feel good and have more energy than I have in ages. My only side effect is some soreness in my thighs from the injections (the last 4). It turns out the stomach was the easiest, maybe because of my extra padding there. I also had 4 injections in my arms (the first 4) and they aren't sore either. I will continue to post developments in this same thread for those interested. Thanks for the "big ears". Happy Easter. Jenny

Greg, You have come to a good place, please continue to post and share in this forum. Your age will surely be in your favor as you receive treatment. The good thing about SCLC is that it also usually responds well to treatment. Read my post about the twice daily radiation concurrent with chemotherapy, you may be a good candidate for this and might want to discuss it with your doctor. I hope you are able to find the best care and move quickly to start treatment. Look forward to hearing more from you. Jenny

I think the R.A. Bloch Cancer Foundation site is a great place for someone newly diagnosed. They stress the importance of quick action, competent treatment, 2nd opinions, knowledge, a positive attitude, hope, and support systems. Then sign up here, you'll be in good hands. Jenny

I'm a coffee and pepsi person too and neither of those taste right to me anymore. I also want to sleep a lot and if I manage to make it through the work week, I usually make up for it on the weekend. Spend most of Saturday just laying around and napping. I have been drinking a lot more water now, but the only kind I like is the one from Wal-Mart - Aberfoyle Springs. Even water tastes bad to me otherwise. I started on gateraide or poweraid today, it is pretty thirst quenching and also lemonade tasted good. Otherwise my appetite hasn't been much affected. Your mother sounds like she has a great sense of humor, just be there for her and let her know you love her. Trying not to fuss too much and keeping things as normal as possible might help. Jenny

John, You are an excellent researcher! I had just bought a big bottle of vitamin E before my diagnosis and was going to start taking 500 mg a day. Before this, I had thought that heart disease would be my downfall. Dad died at age 42. Oncologist thought, to be on the safe side, I shouldn't take it because although there is no proof, it may help protect the cancer cells as well. This might work in the same way, as an antioxidant? I'll definitely see what he says. Jenny

Hi Fran, I just wanted to see how you are doing and thank you for the help you have given me. I feel like we probably have a lot in common. You're just a little ahead of me in what you have gone through and are going through. I hope you have settled into a plan of action and things are going well. Jenny

Laurie, I'm so happy for you and your mom. I hope things will continue to go well. Jenny

HAPPY BIRTHDAY! What's wrong with those doctors telling you something like that anyway, guess they don't know about Italians. Caio Jenny

Fantastic news for a fantastic couple!

Welcome Carleen, I think you might both start to feel better once treatment is started and you feel like something is being done. I know I did. You can only take one day at a time. Take a notepad and write down your questions and the answers that you get. There is a lot to absorb all at once. The people in this group seem to find all the right things to say and there is much comfort here. Jenny

Thank you all so much for your support. John, I really appreciate the info, and Deanna you have managed to make me feel better when the doctor couldn't. I'm much calmer now. I will definietly ask about the tumor marker, that's one area we haven't covered. The nurse called me back again today and confirmed that he wasn't worried and believed it was working and yes, I do feel fine, except for nodding off at my computer at work today. A little nap and I'm much better, but then I have trouble going to sleep again later. They said the CT the radiologist used wasn't as acurate as the one they do (that's kinda scary). But she said the doc felt confident it was working so I'm going to trust this for another few weeks. I don't know much about the radiation equipment. It looks like a CT machine, but it's a linear accelerator. I would hope they know exactly what they're shooting at. Praying for us all. Jenny

John, thank you for posting this. This is just the kind of information I've been looking for. I'm printing this out to discuss with my doctor.

Thanks Laurie, I realized that if I look back through the posts I can find a lot of good information about different drugs that have been used. Sometimes I get in a panic. Maybe they'll try the cisplatin next, I get the feeling it might be a bit stronger but maybe with more side effects too. Who knows, the Camptosar may be another possibility, it sounds promising. Isn't it strange how this stuff works so differently on different people?

Thank you all for your replies. Today was the day and I have a lot of good information. First let me start with some background. I guess my first opinion on this treatment came from the M.D. Anderson site. They say it is their standard treatment for limited SCLC for people in otherwise good health. This originally comes from a 1999 study by Dr. Turrisi published in the New England Journal of Medicine. The twice a day radiation increased the 2 year survival by 6% and the 5 year survival by 10%. In this study the chemotherapy used was cisplatin and etoposide. The total dosage of radiation is the same. The radiologist I am seeing had no hesitation when I asked for this (he is my 2nd opinion). Also my medical oncologist didn't seem to have any objections either. Sometimes I wonder if they just humor me, but from the start they have made it clear that I am in charge. I love my doctors and have every confidence in them which I think is as important as the treatment. One of my main worries of radiaiton is the esophagitus and the 2x dose more than doubles this risk. I read from 11% to 26%. But, as they informed me today, that is without precautions they are now taking. Bad news, I have to have 2 injections each morning. The Ethyol given 45 minutes in advance of treatment and is given in a dose divided between my 2 arms, then my 2 legs, then stomach rotating around each day. Not so bad though. It used to have to be given intraveniously and then there was only a 15 minute window to do the radiation. The compazine and claritin are to combat possible side effects of the Ethyol not the radiaiton. On day 5 I will begin taking Carafate (sucralfate). That is the liquid that I need to drink 4-6 times a day to coat the esophagus. I think it is an ulcer medicine and makes fibers that fill in the irritation in the tissues or something like that. On monday of the 2nd week I will start taking Diflucan, an anti-yeast medicine. I also learned today that the RN mentioned in my original post is still with us and her daughter is about to be married. That really made my day! I'm aware that I may be facing some rough roads ahead, but at this point I feel good about this. The best part is that I will only be working from about 9:30-3 everyday which is a dream. I'll get home early and be able to spend more time with my son. Thank you all for your support. Jenny