sorry for the multiple posts, the internet/DS was having a wobble last night

Markarena, those are the same thoughts that come to mind. Just spoke with the on call onc since mine is out of town yesterday about stopping oxy. He tells me that all chemo is a carcinogen, (different answer from my onc), and if he were in my shoes ( he's 40 something), he would take both oxy and 5fu as tolerated ( since I'm not showing extreme symptoms). He said I would more likely chance get hit by a bus crossing the street than getting reccurant malignancy. So when I read your post, it was exactly what I was thinking.

I'm at the joyful stage where I'm looking to chemo again, as my cancer is slowly increasing, although I am still totally symptom free as the cancer is in my abdomen rather than colon, and because of it's location is now inoperable.

So giving I don't tolerate 5FU (I have an allergic reaction to it) very well I am looking at alternatives ... just hope the onc tomorrow doesn't recommend 5FU as I might get a little angry with him, as it would be case of him not reading his notes properly!!

It seems like most who have taken the Oxi have had issues that cannot be reversed. I'm so glad that I didn't take it. One of my nurses whispered to me one day.....'good for you for doing your homework! People have been taking just the 5FU succussfully for years. You will be just fine'. One of the physicians assistants told me pretty much the same thing.

It's so sad to think that some doctors put the $$$ in front of the treatment.

Mark I don't know what it is? I have been embarrassed (when I should have been infuriated)

We take all the time to write out 'EVERYTHING' and what we may be allergic too, all of our symptoms, only to be hit with something so far off the wall when the doctor comes in.
It makes you wonder just what they have read? (if anything?)

I have been in a car accident, received severe whip lash and a brain concussion. To make this short I really needed P/T. My GP could not prescribe it because of numbness on my left arm and two small fingers. No pain and I could move them fine, but I had to see a Neurologist first to make sure my brain was not causing the numbness! OK I made the appointment and filled out everything. (All I wanted to do was start P/T) I even stopped at my Hospital and got all the records and the disc of my brain showing the concussion.

In comes this Neurologists and does all kinds of tests sticking needles in my hand and arm. The next visit he comes in with a big smile and says you have carpel tunnel? Probably from keeping your elbows on your desk?

I was a Nurse, Floor nurse and hardly ever set except to chart.
I was floored at what he said. I finally spoke up and said I am 'HERE' to make sure there is nothing wrong with my brain from a car accident. (I don't usually sit at a desk and have not my entire life)
WOW! He wheeled around in his little stool and I think for the first time looked at all my reports, The brain disc, (Which I am sure he had never looked at)
I said I only want a clear report so I can take P/T, and my arm even numb does not bother me.
Only then did he report to my GP, and said my concussion should totally be clear in a year (or maybe never)
That 'maybe never' meant I could never work again!

HE knew very well (I KNEW) he had not even looked at my file except to see numbness in left arm. He did say I could take P/T, which only helped me up to the 60% area! (I had hoped for at least 80%)

Much more to the story, but goes to show they don't read your files.

I would like to go (if something else happens) and I pray it doesn't and when they give me all the papers to fill out in detail, just say "NO" why should I bother when they won't be read anyway?
We do all that to cover their butts, if something goes wrong.

I wish you the Best Mark!
graci01

Hi, My husband is on this Oxaliplatin with Xeloda. He had just one treatment this last week and he's sick, shivering, has jaw spasms along with alot of other side effects. When he first started with them, I was adimant that he get on something else... Well, I have researched this weekend and found numerous articles about how these two drugs are the leading treatment for Stage III Colorectal Cancer. Prayers to you!!! I know the side effects are horrible...

Graci01 thank you so much for your bluntness!! I have learned so much from just your one post. Would love to chat with you. Finished my 7th treatment last week and have an appointment tomorrow with my Onc to discuss my side effects from the Oxcilaplat. If it wasn't for this thread I would have just trusted that my doctors have my best interest in mind and felt like I wasn't giving myself enough of a fighting chance if I don't listen to their "expert" opinion.

Unfortunately during my journey all my Oncologist keep telling me "Oh the chances of that happenning are so small" But each time "That" has happenend. when doctors completed surgery to remove rectum and give me temporary illeostomy I kept saying I don't think it's working. I can't eat, it hurts it's uncomfertable. Doctors and nurses said "you'll get used to it" "Just walk to release the gas and you'll feel better" They sent me home only for me to have to come back 2 days later completely backed up, perferated lung, increased liver enzymes, heart trouble, and a complete blockage that they had to pump out as well as me vomiting my own feces for 48 hours. Then they finally decided to operate and found my stoma kinked.
Talked to my Radiation Oncologist about my bladder problems ( can't urinate or feel the need to urinate anymore)--- He said it wasn't due to radiation and it should be ok, some people have problems after surgery. Surgery was 6 months ago. Asked him also about possibility of vaginal closure (sorry to those that don't want to read about this) Once again he said not likely. Just use a dialator and I will be fine. Guess what? I have 2 strictures and need to undergo surgery to fix/reopen. in two weeks.
Chemo oncologist keeps saying "You seem to be tolerating the chemo ok" leading me to believe that I'm complaining about the neuropothy too much, the thrush, naseua, migrane headaches, back pain, tail bone pain, anxiety, inability to sleep, skin sensitivity. ..................

I feel like I'm having an epiphany just reading your post and writing back. So I just want to say thank you for helping me to take charge with the oxci and learn from others that I can refuse it in the future without feeling like I didn't try hard enough.

plainjen: Your story really touches my heart and we have so much of the same things! (They kept telling me I was doing great on the Oxi too besides the fact I couldn't breathe, and it felt like elephants was sitting on my chest with a heart rate of 130?) Then my right leg swelled turned red hot and of course blood clots were found! (The only time my Onc seemed scared and concerned)



I found this at another site I visit. Some of you may like the site also.
This is a medium read article and I sure wish I had known about all this before I took Oxi. I still have heart irregularities, and breathing problems, besides the Neuropathy. (That 3 to 5% would never have been worth it to me as I feel the Oxi has ruined my life)

The message board link is below too and on this subject!

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=35499

http://jco.ascopubs.org/content/early/2012/08/20/JCO.2012.44.1949.full.pdf+html

It stats stage 2 but there is plenty about stage 3 also and member remarks helped me understand more.
I really think there should be laws about what Oxi can do to one on the treatment.

"since I'm not showing extreme symptoms). mykids2"

This may very well be for now, but I have met so many patients that never had any neuropathy symptoms at all, until they had finished the treatments? Most are more than angry, and one in a wheelchair. Please don't think I want to scare you! Not my intention, just research I have found.

Soon after this post, my doctor was out of town and my next treatment was so I requested to speak with the on call onc on dc ing oxi. First the nurse said probably not a good idea.
The doc in a very stern voice said, you should be more afraid of it coming back being stage 3b! N reminded that I have mild symptoms etc. the 11th treatment was the worst, the neuropathy kept me up at night and finally dissapated a few days before my last treatment which is tomorrow... Yay! I have no room to complain and very grateful to be alive. Even thpugh i was depressed the other day of the possibily of it returning, my husband reminded me that it was an adjuvant teeatment .Really hope your symptoms go away soon eventually. And keep the faith that it will. Nerves really take a while to heal. Learned that working in medical field.

mykids2: I am happy for you finishing with out too many problems. As I said before I don't know many that have finished all of them.

We are all different (as you know) I read your profile and you are so young. Seems this disease gets more and more of the younger people.
That article I gave does mention the Oxi being harder on the older patients.

Please don't let things I say upset you! It is just my research and I try and always give 'good back up links' I only wish the best for all of us.

We all worry about it coming back, regardless to what treatments we take.
My last few treatments, I just did not do. I really felt the Chemo was killing me!

I went to a Naturopath. I still have problems, but each day I feel better. I don't dwell on it coming back because I won't take any more Chemo anyway.

I want quality of life over suffering of the treatments. I just wish us all the best, as we do what we think is best.

Gracie, please don't feel what you've said upset me. If anything, everyone on here including you have been very helpful and I thank you all. Wish you all well!