Topic: Gemcis Results/Proton Beam trial at MD Anderson

Hi All,

I met with my doctor today to discuss the results of my bone scan and ct scan. There are no new growths, the existing tumours have remained the same except for the one biggie - it shrank from 8cm to 7cm! I know I should be happy with these results, as it was within a span of 4 treatments on Gemcis!!

After talking to my oncologist, we have decided to try to get into the Proton Beam Therapy trial at MD Anderson in Houston. Perhaps with a combination of it and chemo it'll make a bigger difference.

Has anyone here participated in this trial yet? I was just wondering what to expect as far as time spend at MD Anderson each day for the therapy, side effects you experienced, or any tips to prepare.

Thank you,
Mel

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

Yeah Mel. You just got about 15% shrinkage after four treatments. Keep it up! Could you possibly now qualify for cyberknife aswell?

Need to look at proton bean therapy. I have no clue but I am always interested in bringing more papers to my doctor.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Gemcis Results/Proton Beam trial at MD Anderson

Hi Kris,

The doctor said I won't qualify for a resection until my staging drops down from IV to III. I hope this will happen soon!! But I know I have a long fight ahead of me.

As for the cyberknife - I haven't even looked at the information yet - I just figured I wasn't there yet and didn't want to overload myself with information. There is just so much to know.

If you are interested - I found the trial on the clinical trials website - search with Cholangiocarcinoma AND Proton.

My radiation oncologist explained that it is only a phase 1 trial - so it is basically a theory one of the doctor's is trying to show has merit. My doctor advised me that the drug they are using in combination with the Proton Beam Therapy theoritecally makes sense, and that she would never be able to give me radiation dosage as high with the standard method of radiation. The biggest advantage of proton beam is that the beam's width and depth can be controlled - so less harm to surrounding tissue and organ's.

Dana Farber in Massachusett's is currently doing a phase II trial on proton beam therapy, but they aren't using the drug Bevacizumab. Bevacizumab blocks the growth of blood cells in tumours.

I believe Sloan-Kettering in NYC also uses proton beam therapy for our cancer.

Anyhow, I have nothing to lose. I might as well hit it hard while I still have the strength and energy!

Thank you for the support,
Mel

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

Hi Kris,

I was doing some cyberknife research and found that Canada has just installed it's first cyberknife in Montreal, Quebec on the 16Sep!! So if the proton beam therapy falls through, I can always try the cyberknife angle.

Thanks for the nudge,
Mel

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

Mel,
I had Bevacizumab during my first chemo regime. Although in the end, the combo did not work for me, my doctor was very positive about the posibility of it working for this type of cancer. Apparently how well it works depends on if your cancer has a KRAS mutation (I think I am remembering that right). You might want too check into this.

Thanks for the information. I just found out Sweden has a proton beam radiation machine so I will definately question my doctor about it next visit. I would not qualify for the trial in the US as I have a tumor (Big Ole Leroy) hanging out in my stomach.

Best of luck!

Question....will they stop the chemo for the proton beam trial?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Gemcis Results/Proton Beam trial at MD Anderson

Hi Kris,

Good to know about Bevacizumab. They haven't tested for K-RAS. There is another clinical trial being done in Denmark where the inclusion criteria is for K-RAS mutation. I will be checking into this if Proton Beam and Cyberknife don't work.

For the proton beam trial, I do have to be free from chemo and radiation for 1month.

I hope Leroy isn't causing you to much discomfort. I need to think of a name for mine smile My biggest plan is to downstage my cancer, have my resection, and then go get a tattoo of a yellow ribbon on my liver area:) I don't have any tattoo's and thought this would be a cool one!!

Mel

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

I always wanted a tattoo. Perhaps if I can beat the odds and get another sugery too, I might just do that. Perhaps I will get one of a ladybug so that it looks like all my beautiful scars are ladybug tracks.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Gemcis Results/Proton Beam trial at MD Anderson

Mel & Kris,

I say go for it!  My son is a tattoo artist and I had always said I would get one when I turned 50.  Didn't happen.  Then Jim passed away & my son also is having some health problems, so at the age of 60 I felt it was time and finally got my tattoo.  Mine is a heart with wings & a tiny tear drop on my left shoulder. The meaning behind it is that although I am sad that he is gone, my husband will be with me forever in my heart and he is the angel on my shoulder looking out for and protecting me.  I am glad I did it and am even considering getting another.  I think both the yellow ribbon and the ladybug are great ideas. 

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Gemcis Results/Proton Beam trial at MD Anderson

Hi Darla,

Thank you for the encouragement! Once I am finished with the treatments I will go get my tattoo!

Mel

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

Dear Mel,
You should have your tattoo. I had one when I turned 50 I had always wanted one.  Also that year I decided I was going to do something each year I call it a "no regret".  Its all the things I have wanted to do but for whatever reason have put off, they don't have to be big things some of them include going to see Bob Dylan (waited 30 years for that) Neil Diamond (20 years) moving to a warm climate (23 years). This year my no regret is veging out, watching the grass grow, not having to wear shoes and spending more time with the family.  hmm that is more than one no regret.
I am glad now that I did that.

peace, love and good vibes  Wendy

Re: Gemcis Results/Proton Beam trial at MD Anderson

Mel and Kris,

Your discussion on tumor names reminds me of an article I just read in our Sunday paper about an Ovarian cancer survivor:


A week later, she had surgery to remove a 17-centimeter tumor, which she dubbed

Re: Gemcis Results/Proton Beam trial at MD Anderson

Thank you Wendy and Ashley!

I am still trying to come up with a name for my tumour. It is difficult to name something you want to die. Hmm - I hate lima beans - maybe I'll call it Lima - LOL!

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

Dear Mel,
Mine is called Alien, my sister in law named it, because we think like the ones in the movie it will burst out of my body and be gone.

peace, love and good vibes  Wendy

Re: Gemcis Results/Proton Beam trial at MD Anderson

I like Alien!!

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

well anyone can borrow it we could call them Alien ! 2, or 3  LOL

peace, love and good vibes  Wendy

Re: Gemcis Results/Proton Beam trial at MD Anderson

My sister finally came up with a name for my tumour!! and I love it!

MOFTA - MOther F****** TumA. So that is what we call it smile

Don't let cancer ruin your day!

Re: Gemcis Results/Proton Beam trial at MD Anderson

Funny!

I am glad this post was brought back up because I was wondering what the results on this trial have been. I think I saw that it was cancelled because of lack of participants which was a little upsetting since now we wont know how this treatment works "officially" but I was hoping for some anecdotal info.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Gemcis Results/Proton Beam trial at MD Anderson

I can't believe they canx it. I think Sloan Kettering or Dana Farber are doing similar trials with Proton Beam. I just wish my cancer hadn't metastasized so I could be a candidate.

Don't let cancer ruin your day!