Chemo Regiments for Stage IV

[Rochelle]

Okay. Today I went to my Oncologist and was into my mode of "50 questions". As an individual who wants to stay one or many steps ahead regarding Chemo treatments, I asked her what other regimens would be available for Stage IV if the treatment I am now on stopped working (I am now on Irenotecan and Erbitux) She basically told me that I have used everthing that is available, period.

I am second guessing my Oncologist because she admitted to me today that when I had come to her for treatment after my Stage IV diagnosis in April of 2005, she "didn't think I had a prayer" in terms of survival (I looked pretty bad-liver hard as a rock and distended, pale and underweight). Since then my PET Scan has shown decreased cancer activity, tumor shrinkage and CEA is now 2.0.

I had been on Oxiliplatin, Leucovorin, Avastin for one year. The treatment was changed by my Oncologist to Erbitux and Irenotecan due to elevated liver enzymes (even though they went back down and low platelets (even though they are still low now on my new treatment). The Oncology Parmacist told me that Folfox( Oxyilplatin, and Leucovorin would still be an option for me in the future since my body was still responding to it as long as it was treated).

Searching on the internet, I have found people with Stage IV who have been on :

Erbitux, Captizar and Zeloda
Leukovorin, 5FU and Irenotecan

Here is my question-does anyone have any insight or experience with combining a non effective drug which they have tried combined with other combinations of chemo drugs which have worked for them?

Rochelle

Rochelle

[christy217]

Rochelle,

I don't have any suggestions for your direct questions, but I might be able to tell you where to find the answers. I would contact the Georgetown Lombardi Cancer Center, or NIH, they always have on-going trials of different chemotherapies for patients. THe number to the Oncology and Hematology department there is 202-444-2223, you could ask to speak with a nurse about clinical trials and chemotherapy. I saw a Dr. John Marshall there, he is referenced in a lot of books, one written by a Stage III survivor Pete Teeley, called the Cancer Survivor guide I think. I hope this might help you in your research.

However, I would agree with the pharmacist and I think whatever the oncologist said to you is crappy and pitiful, it takes more than an MD to become a doctor in my opinion.

Good luck,

[Guest]

Hi Christy
Thank you for your response. I am researching through clinical trials and will use the information you sent. Hope all is going well for you.

Rochelle

[mtsko]

Hi Rochelle!
I, too am a Stage IV CC pt. was diagnosed in 3/'04. So far, I've had:
5FU, Leukovorin and Oxaliplatin,
Camptosar and Avastin,
Avastin and 5FU,
Erbitux and 5FU(home infused)
and now he wants to try Oxaliplatin and Erbitux together.
According to the nurses there are a number of combinations that are available.
Some good news, out of all those drugs, I till have a thick head of hair! (or just a thick head!)

[Guest]

...and now he wants to try Oxaliplatin and Erbitux together.

I just got through reading the transcript of a discussion with Dr. John Marshall where he said that, in clinical trials, Erbitux had shown to be somewhat effective but, for some reason, the combination of Oxaliplatin and Erbitux was even more effective... even in people who were no longer responding to Oxaliplatin alone!

Hope it works well for you.

[Rochelle]

Mtsko
Thank you for your input.

Okay, here is some humor

While I was being given chemotherapy a woman and her relatives started having a loud conversation.

First the woman being treated was telling her family that she took her pills for side effects and gave them to her adult daughter, since she wouldn't be using them!

Then the woman being treated got off on another tangent saying that she didn't want to flush the pills down the toilet since she had heard of women doing this with their birth control pills; deer drank from the water and as a result the birth rate went down for that species!

It was very difficult to keep a straight face during this chemo session-

Rochelle

[Guest]

Rochelle,
You need to speak to your oncologist about Avastin I have heard thi s is the drug for stage 1V with a great sucess rate..I am actually suprised noone has mentioned this drug!!!!!! GOOD LUCK

[debcanmcg]

Beware of side effect of Avastin. You can not have any type surgery while on Avastin and must be off for at lease 6 wks prior to and after surgery. That can be costly for recovery. This drug will do good in treating the cancer but can cost you in the long run if you need emergency surgery

[michele]

I took Avastin even though I am stage 3c. He wanted to throw the kitchen sink at me I think due to my age and since my mom also had the same cancer right before me (we believe it is HPNCC, but I can't afford the genetic testing and insurance won't pay).

You are right...no surgery for at least 4-6 weeks after the Avastin. It can cause poor wound healing as well as wound reopening. I had to stop after 5 treatments of the drug due to increased blood pressure caused by the drug. But most people do very well. There are about 6 people in my chemo room on it right now with absolutely NO side effects. I was a strange case I guess.

Good luck. There are new treatments coming out all the time. But, I agree that Avastin is a very good drug...it starves the tumors. I just can't take it.

michele

[drmrgirl47]

Hi,
I have a friend who is also stage 5. She has been on many different chemo meds for 2 years now and she is not getting better. She has colon cancer that spread to the lungs and liver. Her lung tumors are still growning and so is the colon tumor. However, she contacted Sloan Kettering in Manhattan and they have started her on a clinical trial with this new drug called Picioimumab. She went for the first time this past Monday. She tells me you can find this on the internet and for the life of me, I can't seem to find it. I found Panitumumab. But she claims that is not the drug. She did spell it correctly. Anyway, my point is maybe you can get into a clinical trial. It is worth a shot. Good luck and peace, Annette

[Rochelle]

Thank you all for your replies. I don't know what I would do without you. If I find more information regarding this topic, I will post. The Proton therapy looked interesting-I posted a link for this subject on the board about a week ago.

Rochelle

[Christine]

I was diagnosed stage IV (mets to the liver) last August. I was treated with Folfox (5FU, Leucovorin, and Oxaliplatin) with Avastin. I have had GREAT results with this combination. Back in April/May, I developed an allergic reaction (very common) to the Oxaliplatin and had to discontinue that. At the beginning of this month, I was given the news that I now qualify for a liver resection - I didn't six months ago. So on July 11th, I will have my liver resected and then go through 2 more months of chemo. We have not discused which chemo, but I think we'll probably stick with the same thing since it has been working so well.

[MeganWaldrep]

Hi Rochelle,

My sister is currently doing F5-U and Oxaliplatin. She will add Avastin later once she's off her blood thinner medication. She had surgery one month ago and will do her second 48 hour round of chemo on this Monday, July 3rd.

I have researched many people who have used xeloda and CPT-11 (continuous infusion). I've also read a good bit about bevacizumab. I would definitely, definitely get a second, third, fourth opinion and good for you for doing your own research.

That's awesome that you're in the health to do so.

Megan

[MeganWaldrep]

My sis's website...www.brittanywaldrep@wordpress.com

Please keep me posted on what you're doing Rochelle!

Megan