[Good News for Cancer Patients]

Christy,

Thanks for posting this. I love to see encouraging news. I came to the same conclusion as John after further investigation on the shark cartilage so I really appreciate the information he added. My aunt still believes in it and continues to give it to my uncle who is a 6 year survivor of liver cancer with a recent recurrence.

Jenny

[Oh, dear God, I miss her so.]

Dear friend,

I am so shocked and saddened to hear this news. I know that any words will be empty to you now, but I hope that you will be able to find peace in knowing that you were there for her and did all that you could to comfort her. Your love and devotion are obvious and I am so sorry for your loss.

Jenny

[Anyone using Celebrex with their chemos?]

After reading on this board that some people had been prescribed celebrex, I asked my onc for it. He said no as I see some others on this board have also been told. I said it is possible that it will help and couldn't hurt, but he didn't agree with the couldn't hurt part so I let it go. He just said that it was an anti-inflammatory and I guess he thought that the possible side effects didn't out weigh the possible benefit. As for the onc that said "you aren't in a trial" well, I don't like his attitude. If you or he think something may be of benefit and he can prescribe it then why not? I don't always agree with my doc, but since he has more education and experience than I do, and because he is usually open to my suggestions, I decided not to argue about this one. I may change my mind if I get more information so would like to hear what others experience has been.

Jenny

[Hope this isn't just wishful thinking !!!]

Kathy,

That is indeed wonderful news. I've heard that when the Iressa works, it really works. My onc told me that if my chemo wasn't working I'd know it. Everything is pointing to positive results for Tim and I'm very happy for you both.

Jenny

[I just found this site yesterday]

Hi June and welcome to the group. I hope we can offer you some support and information. At least you are not alone in this, but it must be hard to be so far away. It's good to know that he is responding to treatment, hopefully it will continue to improve.

Jenny

[Sore Mouth]

Hi,

Different chemo, but I had pain/sore on the roof of my mouth. Like it was burned. At first sign I swished with diluted peroxide and it kept it under control. I'm pretty sure mine was thrush and I know that Nystatin works wonders for that. I never even mentioned it to my doctor since the peroxide worked and I knew that mouth sores were a possible side effect. My radiation oncologist had me take diflucan (anti-fungal) during treatment also. Glad you found something that works.

Jenny

[Finally...]

Margaret,

Glad you joined. Isn't it amazing how much comfort and support a dog can give! Hang in there and stay strong. I look forward to seeing more of your posts.

Jennny

[Very scary]

Ginny, thanks for the reminder. Like John says "question everything". You were lucky that you knew, most of the time we wouldn't and that is scary!

I'll be looking out more in the future.

Jenny

[Feeling good]

Hi Cindy,

So glad to hear you're doing well. I can certainly relate to the house cleaning. My son is no help at all in that dept and it's really gotten bad. I also spend more time having to sit here and look at it which makes it worse. I'd love to have someone come in, but I feel like I'd have to clean first. Hope things continue to get better for you.

Jenny

[Not Great News & Oncologist who wants to WAIT!]

Hi Bess,

I always try to keep up with your posts because we were diagnosed about the same time and our treatment schedules are parallel. I totally agree that you should find another doctor and get a second opinion even if only because you don't like the one you have now. I too just finished my 6th round of chemo and although the CT looked very good I am waiting for a PET scan to be sure. I also wanted to continue on with chemo, but my doctor said no. He said he felt that 6 rounds was very agressive and that he didn't want to do more. You have to weigh the benefit vs the cost and that chemo can also kill you. If this was also your doctor's thinking then why didn't he say that? I have also done very well on the chemo, but did get low white cell counts and had to be hospitalized for a few days. Neulasta has taken care of that. I must admit I'm looking forward to a break, but am concerned to do nothing. We will talk about it more after the PET. If it looks good I will do the PCI, but in any case I'm not comfortable taking too long of a break and will be looking at my options. Will be very interested in hearing what you find out.

Jenny

[Ethyol??]

Hi Wenna,

I've been gone and just read your post. It sounds like you've already found your answers, but I'm copying excerpts from my May posts anyway.

Now we can have all of our information together. Who knows how I would have done without the injections. Some people don't have a problem. I did end up having about a week or 2 of soreness, but never to the point where I couldn't eat. Also, they took extra precautions because of the twice a day treatments and I do remember that the lowered blood pressure was something they had to keep an eye on.

Thought I'd share some of the preventative measures that are being taken (for twice daily chest radiation). He has something to give me that I must take 4-6 times a day to coat my esophogus. I drink it, then wait an hour before eating or drinking anything. I've also been told to take compazine and a generic Claritin (lorathadien) first thing monday morning. My treatments were scheduled for 9 am and 4 pm. Now he has decided that I need to come at 8 am to receive an injection of Amifostine (ethyol) which needs to be given 45 minutes before treatment. This is used in head and neck radiation to protect the salivary glands and he is using it as a precaution because of the twice a day treatments. I have also been given a cream to use on the skin.

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.

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. 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.

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.

Well, Friday should have been my last radiaiton treatments, but will now finish up on Monday. I've got 29 behind me and things are looking great. They feel the Amifostine did it's job and they will probably be using it more often now. I can eat anything with very little problem. The downside of this medication is of course the injections, I didn't have too much trouble with that, but they are giving this to another man now and he is very needle shy which makes it more difficult. Also, I found out that it is even more nausiating than the chemo, but that has been controlled with anti-nausea meds (pretty much). Of course, we don't know how I would have done without this, but they think I would have been having a lot more difficulty with my esophogus. The carafate probably helped this too.

Well, that was my experience. To be honest, now that it's all behind me, I don't know if I'd go through those injections again. On the other hand, there have been people who had serious problems with the burning, even to the point of hospitalization and with a long recovery. I know my doctor was very pleased with the results and definitely thinks the Ethyol was responsible for the good outcome. Best of luck.

Jenny

[I'm just lost...]

Welcome Betty,

There are many here who can relate to what you are going through. That in itself is some comfort. You can speak your mind, vent, ask for information, share information, get support, and offer support to others. Know that you are not alone in this.

Jenny

[Found you to late ...]

Tina,

I am so sorry for your loss. Thank you for joining and sharing with us.

You are stronger than you know.

Jenny

[SMOKERS - Do not take Beta Carotene]

Beta Carotene has shown benefit in reducing the risk of lung cancer in non smokers, but it has actually shown to increase the risk for smokers. If you are a smoker, do not take Beta Carotene, even the amount contained in a multiple vitamin.

[Finished with chemo!]

I finished my 6th and last round of chemo on July 3. Happy Independence Day! I'm ready for a break. The CT shows something still there, but it is very small and I'm hoping this last round will wipe it out if it's not just scar tissue. I'm going to try to put this all aside for awhile. Next weekend I'm flying off to visit my family and leaving all my troubles behind. There will be a festival going on in my home town, my sister has a cookout planned and I'm having a slumber party with 3 high school friends. When I get back, I'll have a PET scan and then we'll know if I'll be doing the PCI. I am so happy to have this little rest stop and plan to enjoy it to the fullest.

Jenny

[4th of July]

Wow Katie,

What a great day! I've heard about the survivor's parks and am glad you got to take your dad there and to see your office, I'll bet he was impressed! I'm so glad to see you both enjoying life and being able to spend great times together.

Jenny

[A Normal Day is such a Blessing]

Hi Carleen,

Thank you so much for sharing your story. I love to read your posts anyway, but his one was especially inspiring and made me feel good. I don't know if I could have given him up for that long, you really are a lot stronger person than you even realize. I feel confident that things will continue to improve for Keith and you will see many more great days.

Jenny

[Just Checking in]

Hi Cheryl,

I'm so glad to hear your treatment is beginning. You are having very near the same treatment I received for SCLC and I also have it in my medistinal lymph nodes. So far it looks like it has been very effective. I just finished my 6th and last treatment. My doctor thinks that the 6 rounds is very aggressive treatment and will stop there even though I've been tolerating it very well. He says you have to weigh the risk vs benefit. But I have been having it for 3 days in a row every three weeks, they may do yours differently and very likely it will be a different dosage as well. In my case, if I get into remission and there is No Evidence of Disease, then I will do the PCI. It scares me, but is intened to prevent a recurrance to the brain and that scares me more. Be sure to read up before you decide. It has been my experience that many if not most people do it and are not sorry, but I know that some choose not to. I haven't had much pain since starting treatment, but did in the beginning when diagnosed. Hopefully the chemo will help you with that as it shrinks the tumors. I do have an occasional burning/stinging type pain or discomfort in my chest, but not bad. I'm wishing you the best of luck that this treatment plan will do the trick.

Jenny

[I'm new to the site and want to share my experiences]

Hi Mark,

Welcome to the group. I love your attitude and agree with your philosophy. Thank you for sharing your story with us. Hope to hear more from you and you will find many supportive people who can relate to what you're going through. Best of luck

Jenny

[Changing things up]

Carleen,

I've been so worried about you and Keith, I've been waiting on pins and needles for your post, I almost emailed you, but didn't want to intrude. IT IS GOOD NEWS! Maybe not what you hoped for, but still good news. I hope that the new chemo will make the difference, please don't get discouraged. I'm thankful that they tested him at this point. It could take as much as 3 weeks for the meds to work for you, but don't give up, they do help. I'm so sorry to hear about your heart problem, but now you must take better care of yourself. Don't forget that we're all here for you and know what you are going through.

Jenny

[Mom wants to quit treatment]

Shelly,

It sounds like your mom has had great success with her treatment, but I know its probably been hard on her too. Maybe this little break is just what she needs and I will be praying for good results on the PET to turn things around for her. Don't despair.

Jenny

[husband has lc]

Deb,

Welcome to this group. I am so glad you found us. My heart is breaking for you. This $#@@! cancer makes me so angry! It does not discriminate, in fact it seems to seek out the best and most undeserving people. Focus on your children, they can help give you the will and the strength to fight this. Don't forget to take care of yourself first. Don't hesitate to accept help when it's offered. I'm glad to hear you have support. There must be an ultimate purpose to all of this and I have to believe that one day we'll understand. Never give up hope.

Jenny

[Mom's scan results and ?]

Deanna,

This sounds wonderful. I'm so happy for you and your mom. I'm getting a break next month too and going to visit my family. I hope you all enjoy the vacation. I know I'm sure looking forward to the break.

Jenny

[An utterly amazing day...]

Shannon,

My heart goes out to you! Everything is falling into place. I only hope you can connect with the organization that provides the free flights, please look into that. I am so glad your daughter can go with you and that Mike will be able to receive better care. It is unbelievable about the malnourishment. What are they thinking? You have got to be the strongest, most incredible person I have ever seen. You make me feel like a wimp! You know we are all praying for you and Mike, thank you for keeping us updated.

Jenny

[Taking a break from chemo]

Margo,

Thank you for this great information. I'm assuming your doc perscribed this for you. What point are you at in treatments?

Jenny