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re: Yer not gonna believe this

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Well, I went to visit my friend Mark today and he announced that there is no room on the trial that they had him agonizing to decide on, had him fill out lengthy paperwork and spend an entire day yesterday without food to stand in line for bloodwork, a PET scan and more in preparation for this.

I am flabergasted! I didn't want him on it anyway - it is completely experiental using Erbitux with a drug with no name (too new). But he was looking forward to starting treatment and was mentally geared for it. Another emotional roller coaster. They "may" have room in one month.

Now the choices are - do Erbitux and Irinotecan (that, unfortunately would disqualify him for the trial) OR do just he Irinotecan alone (only a 1 in 6 chance of this doing any good according to the doctor) OR do nothing at all for an entire month. He's already been off chemo for 5 weeks. Last scan show lots of progression so doing nothing is not a good option.

I'm frazzled so I can't imagine how he's feeling. He's calm as a cucumber, very rational. The opposite of me who kept asking the doctor "Why? Why?".

Anyone do Irinotcan alone and have any success? I'm going to do a separate post to ask that again. Thanks!

AuthorUnknown
Posts: 1560
Joined: May 2006

Have you seen the post on Protocel last week or so that I was advocating? Maybe he can try it.

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Yes I saw it. I'm just not sure how it will work with chemo. I'll print it out and give it to Mark. He wants to be treated. He's imagining the tumors growing since he's been off. It will be hard to convince him to not be on treatment and trust something that has no scientific track record. I understand studies cost a fortune and most things that can't be patented will never be in a study but there is some comfort, usually, if something has been proven to work. Testimonials from people I don't know from the internet are not enough to base a life or death decision on. Nevertheless I will print it out and give that to Mark. Thank you.

AuthorUnknown
Posts: 1560
Joined: May 2006

Here is my logic:

1. Mark has to wait anyway and meanwhile do nothing or do something that he already knows does not work. So, meanwhile you could try something that potentialy can help. Waiting is not very good factor in the matter of life or death.

2. Mark has already been on several trials with scientific record which did not help and not so scientific. So, this is not much different from this alternative method. Except that this may help.

3. Testimonials of people that you don't know from Internet, meaning from the forum where people discuss this method is not different from this one. But you trust this board? People would not make things up in cases like this. I just can not believe it.

4. Even if it is does not help, it is not supposed to bring any harm. Chemo would have to be stopped though. It does not work together. But if he is not doing it anyway, what is the loss?

With all this said, it is, of course, Mark's decision. Have him look at those web sites that I posted there. I have been in personal correspondence with Elona McKibben (one of web site's owner) who was diagnosed with the cancer in her spine, IV stage, could not walk, was given a couple of months to live. She refused the conventional treatment and went on Protocel. She has completely recovered, has been NED for 17 years. There are many cases like this in that book that I posted there.

Please do not misunderstand me: I am not trying to impose anything on you, just trying to help with the logic or in any way I can. I am very sorry if I sound persistent. My best wishes for Mark whatever he decides to do.

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

You've got a point. Chemo's been around for ages, works sometimes, doesn't work other times. I'll get the info to him. Thanks again.

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi,

I'm so sorry that he was turned away. I agree that you can't just wait again if there is progression. What did your doctor recommend? Did he try the Erbitux and Irinotecan already? That sounds like the best option if the other probably won't do anything. Or can you send out some of the cells to be tested at a lab with the chemo to see if they react before going on the chemo? That might help in your decision of waiting. HUGS to you and Mark.

Lisa F.

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Thanks Lisa. If they put him on Erbitux with the Irinotecan he will be disqualifed from the study. The study is not even a guarantee. The plan is to JUST put him on Irinotecan hoping that will stabalize him long enough to get on the study (maybe) in one month. This so damn frustrrating. Meanwhile I've been on the phone for ages with MD Anderson trying to see if I can talk with a doctor before I put him on a plane there. There is also a four week wait at this point for an appointment. Mark is tired as hell, getting weaker and trying to stay positive and hope this is all going to work.

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