stage 3 c and Avastin

[tandys24]

I just came back from my 6 week follow up appointment with my radiation doctor. I am stage 3 c with one out of 9 lymph node infected after chemo and radiation. First question the doctor asked is if i was recieving more chemo and now for a longer period of time because of the lymph node. Next question was and your on Avastin right? Well my chemo doc said that i didnt quilify for the study and my ins. would not cover it, so no i am not on Avastin. His reply to this was well you didnt hear this from me but i would ask your onc. if this would help you and if so you should fight the ins. company he than said that i have a one and three chance of this cancer metasteses somewhere else! One in three! I thought my chances were so much better than that. I am just so mad that I may not have a better chance of fighting this because of ins! Any replys would be great.

God Bless and always BELIEVE!

[missjv]

HI TANDY,
YES IT SUCKS WHEN YOU ARE NOT GIVEN THE TRUTH BY A DOCTOR I HAVE BEEN THROUGH IT, I WAS TOLD BASICALLY I WOULD HAVE CHEMO UNTIL IT QUIT WORKING AND MY CANCER TOOK OVER THEN I DIE, ISN'T THAT NICE?? I WAS NEVER TOLD THAT MY 3 TINY LITTLE LIVER LESIONS COULD BE SURGICALLY REMOVED AND I WOULD HAVE A GOOD CHANCE OF BEATING THIS CRAP THE WITCH NEVER TOLD ME ABOUT ANY OF THAT. I WOULD QUESTION YOUR DOCTOR BECAUSE ONCE CANCER IS IN THE LYMPH SYSTEM IT HAS LIKE YOU SAID A 1 IN 3 CHANCE OF ENDING UP EITHER IN YOUR LUNGS OR LIVER AND IT IS A HELL OF ALOT HARDER TO TREAT AND IS CONSIDERED INCURABLE WHEN IT METASTASIS THERE ARE NEW DRUGS AND OF COURSE SURGERY TO REMOVE THE TUMORS. AS FAR AS AVASTIN GOES I AM ON IT AND IT IS USED TO STARVE AN ALREADY EXISTING TUMOR BY SHUTTING DOWN BLOOD VESSELS THAT FEED THE TUMOR, IM NOT SURE WHAT IT DOES FOR TUMORS THAT DON'T EXIST YET IM THINKING THEY WOULD GIVE IT TO STAGE 3 TO PREVENT TUMOR GROWTH BUT I DON'T KNOW. WHAT I DO KNOW IS THE STUFF IS ABOUT $4000.00 EVERY TREATMENT WHICH IS RIDICULOUS BECAUSE SO MANY PEOPLE CAN BENEFIT FROM THIS DRUG AND CAN'T GET IT BECAUSE OF THEIR CRAPPY INSURANCE OR NO INSURANCE AT ALL. A PERSON IS ALMOST BETTER OFF TO QUIT THEIR JOB AND FILE FOR MEDICAID I HATE TO SAY THAT BUT ONE OF MY DOCS TOLD ME TO GET DIVORCED AND FILE FOR SOCIAL SECURITY DISABILTY AND MEDICAID AND THAT CAME FROM THE DOC. LUCKILY MY CRAPPY INSURANCE IS COVERING MY AVASTIN FOR NOW. BUT FOR SURE QUESTION YOUR DOCS AND AS FAR AS INSURANCE I THINK THEY WILL ONLY PAY FOR STAGE 4 USE OF AVASTIN AS STAGE 3 USE MIGHT STILL BE EXPERIMENTAL. I JUST HAD IT WITH THESE DOCS HERE IN FLORIDA WHO TREAT EVERYONE LIKE THEY ARE 80 WITH 1 FOOT IN THE GRAVE. IT IS COSTING ME DEARLY BUT IM HEADING TO SLOAN KETTERING IN NEW YORK IT IS WORTH IT EVEN IF I HAVE TO SELL MY HOME AND LIVE IN A BOX AT LEAST I WILL HAVE A CHANCE TO LIVE. KEEP IN TOUCH.

MISSJV

[northern lights]

Hi Tandy,

Have you had surgery to remove the primary tumour? I am also stage III with 2/20 lymph nodes. I was told that chemo (folfox for 12 rounds) was the BEST course of action for this stage.

Please tell me more about what treatment you have received so far and when I go in for chemo on Weds I will talk with the docs about Avastin and see if I can get some info from here.

Sharon

[tandys24]

Good Morning,
Yes I have had surgery to remove the tumor, I had chemo (5FU) and radiation for 6 weeks before surgery. After surgery i am getting something that ends in plation cant remember the name i am sorry I will get it for you when i go in on Monday, I also wear the chemo pack for two days after i get my push of the other that i cant remember the name of.
I swear chemo does something to your brain i cant remember anything anymore! Anyway I do this treatment everyother week. Thanks so much for asking your doctor, any other input would be great.


God Bless and always BELIEVE

[suzieh]

Hi Tandy,
Great question about Avastin. I too was stage 3 with lymph node involvement. After 2 oncology opinions and from a friend at the pharmacuetical company that makes Avastin, no one recommended the use of the drug for this stage . Yes many are using it for this stage, but it has a very risky side effect if you do not have a tumor to cut off blood supply from, It will attack healthy blood vessels and cause bleeds, in the brain, lungs, etc. It is an amazing drug, and I am so glad it is out there, but I decided to go with the others opinion and did not take the drug. I think there is so much data to collect on the drug, but we do know it is working on tumors. My friend who decided to use Avastin with her stage 3 has had many blood clots in her legs, and one that broke off and traveled to her lungs. Was it the Avastin? Who knows, but they think it was. Good luck in your decision making.
suzieh

[Lee]

I was diagnosed 2 1/2 yrs ago with stage 3, I was on Oxyplatin (sp ????). I believe Avastin is more for stage 4, but I am aware of some people with stage 3 also getting it. If you are getting the Oxyplatin (along with 5FU and leucorin), your are getting the standard treatment for stage 3 colon/rectal cancer.

Lee

[tandys24]

I want to thank everyone for your reply's. I went to my chemo doc today and have made the choice not to get Avastin. After talking more with him about Avastin and the study for it he said he would start me on it next week if i wanted but again my insurance would not cover it. So I sat and figured it out it is 5,000 a week to get this stuff and I would be on it for 12 months, so kinda like taking out a 30 year morgage on a house. Now do not get me wrong if it was proven to help people in my situation I would do whatever i could to get it. But the doc feels right now there is no proof yet. He said that it has shown improvment for stage 4 though. The sad part is if this beast does come back then my insurance will pay to put me on Avastin!
Lee how are you now?
God Bless, and always BELIEVE!

[Lee]

Tandys,

I am happy to report that everything is doing fine. I've been off chemo for about 20 mths now, I will be having scans done towards the end of this mths, and I will pray for continued success.

Good luck with your chemo treatments.

Lee

[NICK THE BRIT]

Tandy, just to say about Avastin. The UK are fighting to get it over hear. But that is national health. My onco also said, that there is no hard evidence regarding it yet, and also over hear he said it would really be for stage 4 survivors.

[CMeeks]

I had stage IIIC and my onco told me that same thing -- that I didn't qualify for avastin. He also complained about its deleterious side effects, saying that it might harm my heart, etc., etc.

Well, after 6 mos of folfox6, I had a recurrence after just 5 months.

So I am wishing like hell that I had been more forceful with him about avastin. The thing about avastin is that it not only can shrink existing tumors, it can also -- supposedly -- help prevent the formation of NEW metasteses.

If your doctor is absolutely insistent about you not taking avastin, then you have to make your own judgment call. But remember -- the docs aren't always right. Sometimes they are, but often times they put us in a category or a box and we know ourselves, sometimes, a lot better than they do.

[skier03]

Hi,

I was stage III c when they found 5/17 lymph nodes positive after surgery. I was treated very unconventially all along, but when the oncologist saw this, he immediately suggested avastin. It is true that it is not yet approved for this stage and that the insurance companies will only cover it for stage IV. However, I decided to get it anyway and fight the insurance company afterwards. It turns out that they agreed to pay for it - thank goodness! Also, there is a patient assistance program through the drug company, Genentech, that will give the drug to patients in certain circumstances. You may want to look into this as well.

I had Avastin at Stage III c and am sad to report that about 10 months later, I was diagnosed with mets. I am on chemo again, including Avastin.

Do your research. If you want the drug, get it. Look into patient assistance programs or fight the insurance company later. For me, it was never a question...

Good luck, whatever you decide!

Skier03

[tandy24]

I just want to say Thank you again for all your great reply's! I pray for all of you and your journy through this. While i was recieving chemo on Mon. a older man had a button on that read in big letters CANCER SUCKS! I asked him where he got the pin because i really want one. I am still confussed about this Avastin thing. I have read up alot about it and it does show improvements for stage 4 but really does not say anything for stage 3. I just dont want to make the wrong move here. All I want is to be around for my two boys i want to see them grow, I want to teach them the word of our Lord and i want to see grandchildren. So I will do whatever it takes to get to that point. I just dont want to jump on somekind of hope that really will not work for me. I just had my chemo push yesterday and have my chemo bag on me now so i am not myself anyway. I have not yet had my first CT scan but i am already stressing over that. My biggest fear is that this thing will return.