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new kind of treatment

pattieb
Posts: 176
Joined: Mar 2003

Hi to all my fellow semi colons,
I just had my visit with my onc about my latest ct, not real good but not real bad either. There are 2 spots on my lung and 2 spots on my pelvis that have been there for a couple of months which I knew about but they have not grown any. So I asked him what are we going to do about these I don't want to wait for them to grow, and he has recommended for me to go into a clinical research group. With this group I will get oxaliplatin/5-fluorouracil/leucovorin and the new drug or a placebo. My question is regarding the oxaliplatin which I never had before and I don't know much about it or what it does, can anybody give me any info on this type of chemo. The sponsor will pay for my co pays and the test drug as my insurance won't pay for anything that is not FDA approved. Also this program is in what they call phase 3 so it must be doing some good.
So semi colons I need some in put so I can make up my mine wheather I want to do this.
Pattie

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

I believe Dr. Ralph Moss did an article on clinical trials. Check out www.cancerdecisions.com and see if you can dredge it up.

If you are looking for some kind of treatment why not something that does not involve chemo?

Why not try something that makes you healthier rather than puts your immune system in jeopardy?

just a thought.

peace, emily

hyler1
Posts: 12
Joined: Feb 2001

Emily, my Mother has Stage IV colon cancer and refuses chemo. what do you mean by a healthier choice? Maybe this is something she would trY?

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Pattie -

As you know, this is the one subject where Emily and I are polar opposites. While I fully support Emily's position that nutrition plays a significant role in our health, I also feel strongly that you should do everything you can - to include using experimental drugs - to kill the beast. It is very similar to conventional warfare tactics; using Em's diet and nutrition advice, cut the enemy supply lines and start starving it out. While it is weakened, start a frontal assault with the most deadly and modern weaponry available. Sort of a physiological version of "shock & awe".

Just my two-pennys.

Be well.

- SpongeBob

andreae
Posts: 238
Joined: Sep 2003

Hi Pattie,

I started on an oxaliplatin/Xeloda regime on November 17th. Eleven spots were detected on my lungs back in September during a routine CT after I had just completed my protocol for stage 3 rectal cancer. I have just finished my first cycle of the oxaliplatin/Xeloda regime and so far so good. My doctor chose to put me on Xeloda b/c it is at least as good as 5FU and it mimics the infusional 5FU (which some doctors believe to be better than the bolus administration) without the fanny pack. The oxaliplatin does result in some cold-induced peripheral neuropathy for a few days after administration (and living in Quebec, it's tough to stay warm!) but apart from that inconvenience, I'm doing well. I'm staying busy writing my finals and I often forget that I'm even on chemo (I can't tell you how many times I nearly forgot to take my Xeloda!). I can't personally tell you about the effectiveness since my response is only going to be assessed in early January. But I have done quite a bit of research since the metastatic detection and oxaliplatin is looking quite promising. Of course, no one can ever really predict how an individual is going to respond, but I told my doctor that I was ready and willing to fight and go to the brink. He seemed to appreciate my attitude and agreed to be really agressive and this was the protocol he suggested. This was also the drug I was pushing for after my research, so the scientific evidence supporting oxaliplatin effectiveness was enough to convince me that it could be the drug to save my life. As an aside, I'm also looking into radiofrequency ablation which could be an alternative option for me. Take good care of yourself, because, like Emily and SB, I believe that good nutrition, diet, moderate exercise and rest are incredibly important factors in beating the cancer. And don't forget to treat yourself to something - you deserve it! Be well and good luck.

Sincerely,
Andrea

aleftina
Posts: 102
Joined: Nov 2003

Andreae, what is your scheddule for Oxaliplatin/Zeloda? When you say your first cycle what does it mean? I am starting on Oxaliplatin/Zeloda December 15. They said I would get 2 moths and then get scanned to see the response, that's all I know. I am so hopeful I will be like you and will be able to work, how many injections are you getting and for how long, and how many times you take zeloda? thank you for any info. I am anxious about my treatement a little. Tina

efw
Posts: 20
Joined: Jul 2003

I was on oxaliplatin, 5-FU, and leucovorin for 6 months. My CEA went from 8 to 2.5 during chemo. My treatment ended four months ago, and I still have neuropathy from the oxaliplatin -- not the horrible feeling from cold, but just a constant tingling/numbness in my hands and feet.

My last blood test showed my CEA is now back up to 3.7, so my onc is doing another blood test in a couple weeks to see if it's gone up again, and then may do a PET scan. I know the PET scan may not pick up on anything, because the CEA can be an indicator for metastasis that may occur up to two years from now. (I'm thinking I may head to the Mayo for a 2d opinion if my current onc doesn't know what to do with me -- the Mayo is only an hour away from me).

Anyway, I say it can't hurt to go with the oxaliplatin if you're willing to put up with the tingling, and I'd be willing to try the test drug. My philosophy is that, for most of us, how will a drug hurt us any more than the cancer?

pattieb
Posts: 176
Joined: Mar 2003

Thank you all for your input, I have tried to do some changes in my diet and get plenty of rest, I just hope all this is going to help. I don't start this new series until after the new year my onc wants me to have a holiday without any sickness or after effects, but I will keep all of you informed. Again thanks and lots of hugs to you all.
pattie

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