Has anyone had this treatment? I'm going to start it on Friday and I'm really scared because I don't know what to expect. I was doing a different treatment (Avastin and Folfox), but I became resistant to it. Please, Please respond if you or someone you know has gone through this chemo treatment. I would really appreciate it!

Sarah :confused:

Sarah:
I have been on the Saltz regimen... Camptosar/5FU/Leukovorin, but have not tried Erbitux. Erbitux is a new antineogenisis drug... stops blood supply from forming to the tumor. I hear little side effects with this one... Camptosar, on the other hand, can be brutal. I got very sick on it... no matter what they gave me, I would vomit from treatment day one week to treatment day the following week. And go to the cancer center 2ce/week for IV fluids. I'll fill you in more if you like. Remember though, everyone is different and has different reactions to chemo drugs.

Best of luck!
Regards,
CancerDad

Hi sarah

I am sure your clinic/oncos will fill you in with all the details on what to expect regarding side effects etc but I did a quick search on some of the UK sites I subscribe to and they are saying that erbitux combo with other chemo is effective in colon cancer. As I understand it the side effects can be low blood pressure, breathing difficulty, skin rash/hives and dry skin (can be made worse by sun exposure so I suppose you will need to cover up this summer). It might be a good idea to ask about creams and potions that can help you out in this regard.

As you are also having camptosar, you may also get some of the more typical chemo side effects as cancerdad described. But you will know about this already having had some chemo todate.

Please take care and please keep us posted as to how you are doing. I think you are the first person on this forum to mention erbitux so it would be great to bring us all up to speed.

good luck for friday
ktee

Thank you both for taking the time to respond to me. CancerDad, how did you know that the severe vomiting was specifically from the Camptosar and not the other drugs? Could you please tell me more?

Thanks,
Sarah

Sarah,
Nice to hear from you. I had previously been on Oxaliplatin/5FU/Leukorovin and Radiation Therapy pre-op. 6-10 of my nodes were positive. My oncologist DID NOT expect this, especially since I had been thru chemo and 8? weeks of Radiation. He was extremely surprised, and advocated for a MUCH MORE aggressive regimen with the Camptosar (Saltz Regimen) adjuvant chemo. So, basically the oxaliplatin did not work like he expected for some reason... you know, everyone is different, cancers are different, and we all react differently. Just because I experienced this doesn't mean you will.

Hang in there and don't hesitate if you want to know more. BTW: Male 32, Stage 3C (T3N2M0) Rectal Cancer.. still lots of recovery issues with severe pain and nerves not growing back where they are supposed to-- self cath to pee, strictured anastamosis at rectum, needed painful dilations regularly, when I do, I have incontinence, and also still suffer ED. Probably more info than you wanted to know!

Regards,
CancerDad

Thanks Cancerdad for sharing your experience. So far so good with the first treatment. I didn't vomit at all (It's been 3 days since treatment). You never know, it could get worse later. I just hope it works. I sympathize with your pain because I've also been struggling with nerve pain. It's finally starting to get under control better. I hope you have some relief soon.


Best of luck to you,
Sarah :wave:

Yes, I've been on erbitux and camptosar since the beginning of August, 2004. I can only tell you about the side effects that I've experienced myself. I know well enough to say hey to only one other person on this particular drug regimen, and she started only recently.

The most annoying thing has been the acne rash, to tell you the truth. I don't like what camptosar does -- nausea, but not to the point of vomiting, just a medium-grade feeling that you MIGHT hurl. Everyone has their own favorite anti-nausea agent, but I just load up on anzemet and eat and drink whatever feels best at the moment. Curiously, if I keep nibbling it seems to keep the nausea at bay. Or sleep. I try to sleep as much as possible.

And, of course, there's the diarrhea (sp?). I'm missing a lot of plumbing, so my personal preference is to gobble about five lomotil and five immodium whenever appropriate.

Erbitux caused the most nasty case of acne! It was worst for me during the first course of treatment (started my third 12-week course Tuesday). Freakish acne! Head to waist, front and back. Just horrible! It got to where I wouldn't go out of the house! Topical benadryl only made it worse for me. We finally started adding a bag of steroids to my regular weekly mix. Seems to calm the rash, plus gives me a little energy the next day.

If it gets really bad, the doctors also may tell you there's a correlation between the severity of the acne and the efficacy of the treatment. Whether there is, in fact, any such relationship is, I think, doubtful. But it's something to hang onto when one not only feels bad but looks bad, too.

Also, I have a bad habit of picking at spots and a couple very nearly got infected. That can be a problem for someone with an impaired immune system.

The other nasty little side effect of this regimen was that the skin on my fingertips cracked open. It was more like the skin split open when I put any pressure on it -- picking up something heavy, undoing a tight jar lid, swinging a golf club, et cet. I guess this went along with a general skin dryness. I used a number of things for the cracks and dry skin -- Spring Wind Burn Creme (smells like sesame), something called Udder Butter (yes, for cows originally), and also Clinique makes something called After Sun.

The good news is this is all pretty minor stuff. The acne goes away eventually, the skin clears up, and you get your energy back. Plus, erbitux-camptosar seems to work in my case, where no other chemotherapy has. Stable disease. And plus, my oncologists swear there are people on this who've experienced regression, and more. All in all I'm living a pretty normal life, getting close to five years after initial diagnosis.

Best of luck to you. Hope the drugs are as good to you -- better, even! -- as they've been to me. Sorry if I've grossed you out!

John

Sarahtp , thanks for posting topic . I had 6cycles of folfox with avastin then developed another blockage in early April . Had another surgery first week of April . Two weeks in hospital and then 2 weeks in rehab facility . Just home a couple days now . Surgery was jujunostomy due to blocked small intestine and now get nourishment through tpn iv. 14 hours every night. Barely eat at all anymore . I am 49 year old male . Had first diagnosis in September 2004 with a colon resection . Stage 4 with 16 of 17 lymph nodes effected. Scheduled to start erbitux with campostar next Tuesday . I have been worried about starting due to reported side effects and my weakened condition but am glad you are alright so far and I will continue also and post my progress . Thanks and best wishes to everyone !

Speedtherapy,

Thanks for sharing all of that info. I've only had 3 treatments so far, but the horrible acne that you spoke of has started. It's so frustrating because my face is a mixture of flaking skin and pimples. It's so hard to manage making myself look decent enough to face anyone. I'll have to get something from my doc. He said there would be something to help. The diahrea has come almost every day also. Using the Immodium helps, but I'm constantly feeling a lot of rumbling going on inside. I'm so happy for you that this therapy has worked so well for you. Do you mind me asking what situation you were in before starting treatment? Well, I hope that I have the same luck as you've had.
Thanks and good wishes,
Sarah

Not to scare but I have read camptosaur (sp?) has caused early death in studies? is this drug still being used? I would research it first...

Camptosar has caused deaths, and treatments with the drug were halted for a while while the FDA investigated. It was determined safe at lower levels than what they were giving. I hope everyone is still doing well, and continuing to see a reduction in their tumor growth.

Regards,
CancerDad