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Oxaliplatin; Results are in.

Posts: 6
Joined: May 2003

As some of you may know, an international symposium on clinical cancer was held this week in Chicago. Lots of new data on treatment of colon cancer. The new biotech drugs have been making a lot of news (Avastin, and the Imclone drug). These are only used for metastatic disease, and only in experimental phase.

As for me, a large multi-center study showed about a 25% redution of recurrance of cancer in Stage II and III with a combination of 5FU with Oxaliplatin, when compared to 5FU/leukovarin alone.

So, me, being Stage IIb, 40 year old,male,wife, two young kids...it makes sense for me to be as agressive as possibe. I met with my oncologist today, and next Tuesday I will start on this 5FU/Oxaliplatin combo. I had been preparing myself for the relatively "benign" side-effects of solo 5FU (including leukovein, of course). But now I have to contend with coping with this other agent Oxaliplanin. All I've heard is that it can cause neuropathy; the diarrhea, nausea and vomiting tend to be worse; it is more toxic to the veins, and most people can not complete the entite course without going from IV to some sort of central line; and lastly, there is some rare phenomenon where you feel as if you can not breath or swallow, when in actually you can do both, but the sensation is supposed to be pretty horrifying.

I feel lucky that the study was relased just as I am about to start chemo, and that I may be able to reap some of the benefits. But I am worried about the increased side-effects. i wonder if I will be able to hold down my job over the six-month process. Thoughts, ideas, sharing experiences, help would be greatly appreciatied.

spongebob's picture
Posts: 2598
Joined: Apr 2003

Mornin' Dylan -

I just missed the windo to be part of the study on Oxaliplatin - wish I could have tried it out. You seem awfully young (I was diagnosed at 37 myself) Do you know if your CC is due to genetics? I have HNPCC (hereditary non-polyposis colorectal cancer). It is caused by a particular genetic defect. Seems I got my dad's build and my mom's cancer gene! I think I would have preferred to get her big blue eyes!

Anyway, the gene is autosomal dominant, which means if you pass it along to your kids they will inherit the trait despite what kind of good genes mom may pass along. Just because they inherit the trait doesn't necessarily mean they will express it (i.e. get CC), but they are at an extremely high probability. If you are interested in maybe being part of a genetic study that will test you for the HNPCC gene(s) drop me a note and I'll give you the contact info for the study director. It won't cure you or make the genes go away, but you can find out if you have the trait so you will have an idea as to your kid's propensity of getting it.

Take care. Hang tough during the chemo. Be well.

- SpongeBob

Posts: 6
Joined: May 2003

SpongeBob, I haven't had the tumor genetically tested yet. But I soon will. Not only will it be important for my kids, but I also understand that belonging to the HNPCC group is somewhat favorable in terms of higher survival (5% or so). They do testing at several centers, including City of Hope in the LA area.

Five more days before I have the lovely opportunity of being infused with 5FU and Oxaliplatin. Too bad I only get to receive it for six months (I hope the ironic humor is evident). Actually, I thank God that I get this opportunity, but I'm nervous about the side-effects.

Posts: 4
Joined: Mar 2001

Hi Dylan (one of my favorite names btw)
I have been supporting my husband in his 2 year battle with CC. It metastized last August, and he received Oxaliplatin and 5-Fluorouracil (5-FU - I love the FU in that one)for 5 months from Emory Clinic in Atlanta. He is a guinea pig there because this chemo is so new. Chemo finished mid January.

It was much rougher than the Leucovorin w/5FU, but has been EXTREMELY successful. Everyone is different, but the nausea wasn't as bad, but the diarreah has been horrible. We had to buy medicated Witch Hazel wipes from Eckerds. Also, he is still battling Peripheral Neuropathy. A medication called Ultram seems to help this.

It sucks, but it works. His tumor seems now to be necrotic (dead cells). All I can say is fight, fight, fight...

Posts: 6
Joined: May 2003

Yes, diarrhea (worse) and neuropathy are some of the side-effects. The figures I heard were 12% developed neuropathy, though only a third of those significantly effected functioning. I'm glad to hear about your husband's progress on it. What stage was he to begin with (nodes?) and where did it metastasize? Oh, and did he have a central line for the oxaliplatin, or just plain IV? Was he able to work while going through the courses of treatment?

BTW, I had my first treatment today. I'm about five hours out of the onc's office now. It wasn't bad. I just feel the tiniest bit of sluggishnish. Yet I also know that the real side-effects tend not to show up for a while. I'm hopeful that I'm one of the lucky few who tolerate it without much problems. I'll kep everyone posted.

Posts: 1
Joined: Jun 2003

Hi Dylan
I am a 42 year old female that was diagnosed with dukes C stage III colon cancer. I was able to try the oxiliplatin with 5FU/leuko. I was fortunate not to have been affected with intense diarrhea and vomiting, but I did have jaw pain when I ate, but did get better after 20 seconds. It was suggested to me that the oxiliplatin is sensitive to cold, and causes intense neuropathy, so I stayed away from cold drinks and did not touch anything cold. I gloved my hands when going into the refrigerator and it took me a while to get used to drinking luke warm water. I had to stop the last treatment of oxiliplatin because my leg was getting numb.

aprilgreen25's picture
Posts: 7
Joined: Jun 2003

Hi Dylan. My name is April and my husband, who is 29 years old, is battling rectal cancer which has metastasized to his liver. His primary tumor was completely removed on May 13th, 2003. Prior to his surgery, he completed 6 weeks of radiation and chemotherapy which included 5FU given through his chest port. He started chemo for the liver metastasis on june 24th and is doing the same regimen as you. The Oxaliplatin effects started immediately for him. The tips of his fingers went numb during his first infusion as did his lips. He hasnt had a problem with nausea so far (I'm knocking on wood). He is on a very high dose due to his size (6 foot 7 and 260 pounds).He is having a problem with not only cold drinks causing him to have throat spasms, but also warm. His treatment requires him to get 2 hours of Oxaliplatin at the clinic once every 14 days and his 5FU is given through an implanted port that he is hooked up to for 3 days a week, every other week. He is in his third day of treatment and is still working 50 hours a week as a mortgage broker. Seeing that your treatment with Oxaliplatin started before my husband's, is there anything that you might be able to prepare us for? We have a good doctor, but hearing it from someone else who is going through the same thing seems to help more. Thanks, and I look forward to your reply. -April

Posts: 6
Joined: May 2003

Hi, April.
Let me start by saying that I would be happy to help you and your family with all the information and support I have. Congradulations on all the progress you and your husband have already made on this passing journey.

As for me, I have had three chemo sessions to date. The first was the oxaliplatin/5FU combo, week later was just 5FU, and four days ago I had my third oxali/5FU infusion. I didn't have any noticable symptoms when I had the 5FU alone. It's a little bit harder when I get the oxaliplatin. I feel a little queasy, tired, and headachey on the first day. The second day I feel pretty much the same. Days three and four are definately the worst days. Periods of nausea (never with vomiting), a bit of diarrhea (nothing terrible), fatigue and sedation, some jitteriness and I suppose depression. By the fifth day, I'm pretty back to my normal self. Oh, I do get a funny feeling in my throat when I drink cold drinks after the oxali, but no biggy.

Things that have helped: I arranged to get infusions on Thursdays, that way I get to feel horrible at home and not at work. Kytrel for nausea helped some, but adding Tigan for break-through nausea made a big improvement. Tylenol for headache actually works. Use Immodium at the onset of any diarrhea. Eat bland fooods, and never too much food at once. Avoid fatty, spicey or excessively fragrant foods (not good for nausea). Pepernmint tea also helps nausea, and I heard that ginger tea does the same. Oh, and for the fatigue, I tried a time-released caffeine pill (normal coffeee would make the nausea worse, and the jitteriness), and to my suprise it actually helped. Talking to my wife, playing with my kids, and going to church helps the blues. Also reminding myself that the sick feeling I'm experiencing are a direct result of the chemo killing the cells (most importantly any possibly remaining cancer cells) helps me all keep it in perspective.

Posts: 1
Joined: Aug 2003

wondering if your CEA has come down after rx with oxaliplatin?been off it for 3 months and hands and feet are numb/painfull.on morphine sublingal to help.would take it again if doc let me.tumors did not change but CEA went from 70 to 12 before I had to stop.

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