Chemo for Life - Just found out

I am on "maintainence chemo" for the rest of my life too.  I get Avastin infusions every 3 weeks, and take Xeloda for 14 days and then 7 days off xeloda.  I was very worried about side effects, but hasn't been as bad as I thought it would be.  I was very surprised to see that my tumors continued to shrink while I was on the xeloda.  I had no idea that taking the tablets orally could be so powerful - they look like my vitamin D supplements.  It is supposed to be the same medicine as in the 5FU, or at least similar to it. 

I asked my doctor if the side effects get worse the longer you are on it, but he said usually people get them right away if they get them at all.  He said it has to do with how the enzymes in your body react to the medicine.       

What type of chemo are you on?   

You have alot to live for and kids who love and need you.  It does stink being on chemo, but much better than dying from cancer.  I keep hoping for a miracle too, like you said.  I believe that my miracle for now is the chemo.  It has kept me alive so I can see each day with my family.  Being tired takes some of the joy out of your life, but just be good to yourself and get the rest you need to fight this battle! 

You should ask your doctors about going on the xeloda and Avastin.  When I saw Dr Axel Grothey at Mayo Clinic in Rochester, he said that most people will do better and survive longer if they have 8 treatments of the traditional IV chemo, and then go on the Xeloda tablets and Avastin maintainence. Grothey is one of the best doctors in the world for treatment of colon cancer.  You can look up his studies and clinical trials.  He said there are fewer long lasting side effects and that the overall survival rates are better. Also that after 10 to 12 treatments many get sick from the chemo or have permanent neuropathy. He talked about all the new treatments they are developing.  He gave me hope that I could survive this and  said that he thought I had many more years of life ahead of me. 

I am wondering why they have had you on all the IV meds for so long.  Maybe you should seek a 2nd opinion about your long term treatment.

I agree - waking up from the nightmare would be so nice... It is so hard to understand why some get hit with these life threatening diseases, and  other just sail through life with no problems.  As we have all learned the hard way - life isn't fair.  If it was good people would never get sick, and only the bad people would die young.  We would all live to be 100 and die peacefully in our slepp without ever getting senile.   

For me, it seems that I was under extreme stress for several years prior to my diagnosis.  My doctor said he thought I had developed the cancer about 3 years prior to the diagnosis.  That period of my life was the most difficult time in my life.  Many on this forum have said they were under a great deal of stress prior to their diagnosis too.   

What has given me hope is seeing so many on this forum who have survived for many years - some have survived for 20 years!      

Keep praying, and never give up.  I wish you the best of luck!   

Joan

Joan

We prepare for the worst, and hope for the best, and deal with ping-ponging between the two poles. It sucks to deal with, but it really comes down to perspective. Yours took a big hit when the doctor said "forever", mine would too. For the third time I've seen/read a story recently, on the success they've had with targeted immunotherapy on glioma patients [thats the brain tumor that took my wife], they're getting closer to being able to make the body destroy the cancer. They now can cure 90% of Hep C cases, which 8 years ago was a "forever" thing. Don't give your hope and faith up to a word that may not mean a thing. All you need to do is hang on.............................................Dave

I wish you all the luck in the world Icy. You have encouraged me before and I hope me or someone else in this forum can encourage you as well. We are all here for you anytime you need to vent. We understand. 

I'm so sorry you're having to deal with this. And don't apologise for feeling down about it and posting on here. I think I might be the worst for posting my feelings on here. But even people I know who have dealt with cancer haven't had this cancer and nobody can relate. Plus they've all beat it, beaten it? Whatever. I was so hoping that I had, too. But I was told that I'll have to live with it. I don't know if my future will be something like yours or if I'll gewt something to stop the mets for a bit and then do it again once they start growing again. I don't want to think about that at this point.

I will never get to say NED, either, and that was a huge blow to me. I hate the idea of the CT scans and doctor visits and treatments that I'm looking at for the rest of my life. It makes me angry and feels so disheartening. But the alternative is unthinkable. And Im grateful that we have options these days. Not so many years ago I'd already have been gone. But at the same time I get very down about it.

I hope that there will come a time when you get a happy surprise and they tell you that they can hold off for a while and you get a good, long break because things have improved. I hope that they come up with something that's an alternative that really helps and soon. I pray for a day when we wake up and can spend a day not thinking about our cancer even once.

Best of health to you. Sending you hugs.

Jan

PhillieG said:

Jan

I know we view things differently but I try to not use the words "never" and "always" because they don't realistically apply. Well, I'm pretty sure I can safely say "I'll never become President of the US".

There are new treatments in the works. Maybe you or I can benefit from them. While at first my goal was to become NED, it's changed over the years. The likelihood of me becoming NED is slim but one never knows. I honesty don't think about it much. I'm more concerned with not becoming DEAD :-) 

I do realize that how we approach our disease is different. I'm been fortunate to have avoided an osteomy but on the flip side, I've been in continuous treatment for over 13 years. I'm tired but I manage to live what's become a normal life. 

Yes! NED would be great for you! I hope it happens. 

PS: I'm sending you a PM shortly. 

-p

Well, I do hope you're right Phil! I'd love to be able to say I'm NED. My onc says I'll live with my cancer for however long I live. She's said about 10 years and my surgeon had said thirteen years last year so it sounds like they're both at around the same mark for longevity. And you're absolutely right. Something could come up suddenly and we'll all be NED, wouldn't that be a blessing? I've told my onc that I'd be interested in doing trials if anything comes up.

I don't think I'll ever be a model or run a marathon or be rich, Phil, and I'll stick with that. I got your PM and have responded, thank you!

Jan 

So sorry that you had to hear that.  I must say that 8 years ago when I had my first recurrance my onc said basically the same thing, and gave me 18-24 months, based on the stats at the time.  Well, as you can see, I'm still here. I decided to get a second opinion and got another oncologist that treated my cancer more as a chronic disease.  I would suggest a second opinion, perhaps at a big cancer center.  That's what I did and it was encouraging.  There are different drugs and drug combinations out there, see what works for you.  At the very least try Xeloda.  Most of us that have had 5-FU and Xeloda, the pill form of 5-FU, have far fewer side effects on the Xeloda which at least gives you a better quality of life.

I'm sorry that you are here and in this situation.  Were always here to listen.  Take care, Traci

we're looking forward to hearing from IcyMoonston, who had her brain surgery scheduled last week.