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Clinical Trials?

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

I was just told my PET scan shows 3 new mets. I have a mutated KRAS and have had Folfox 4, Xeloda, and Irinotecan. These and the 2 surgeries have not kept it from coming back. So my Dr.has set up an appointment mon. for me to meet Dr.A Patnaik at the Start center in San Antonio regarding treating me on study. I think that means clinical trials. Has anyone had experience or knowledge about taking this path? I'm scared I have run out of options.
I am at stage IV.
Thank You,
Cyndi2324

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

It sounds like we're almost in the same situation. I've done Folfox once and Folfiri twice, and my lung mets just do not want to shrink or go away. In addition to where you're going, also check out www.neoplas.org about Dr. Stephen Cantrell's clinic in Nashville.
It is an "off label" treatment, but really sounds very promising. I have an appt. set up to go there the first week of December. There is also a youtube video of "Dr. Stephen Cantrell and Neoplas Innovations"- check it out- he was interviewed by the Fox network just a couple of weeks ago. It's very impressive.

Best wishes to you-
Lisa

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Lisa Thank You. I looked up his site and watched you tube interview. Please keep us posted on how well this goes for you, and I hope it does. I don't understand why more isn't know about this if it is so successful? I wonder what his rate of cure is. Gosh I hope this works for you because that would be great for you and maybe show it can help some of us. Do you have the mutated kras gene? It sounds like you might if traditional chemo didn't work for you.
The VERY BEST OF LUCK TO YOU
cyndi2324

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cyndi,

Yes, I do have the k-ras mutation. I would also like to find out more about Dr. Cantrell's cure rate. I spoke w/ a woman on the phone yesterday a.m., but I'm going to email today and ask a few more questions. So far as why more isn't known about this treatment if "it's so successful", is probably because a clinical trial on it was never completed. "Regular" doctors are very hesitant about using something that hasn't had a clinical trial done on it. Actually, I am too, but I just feel something about this. I'm still willing to spend the inital consultation fee ($960 plus my airfare there) to find out.

Best wishes to you in your search for a clinical trial. Please do let us know how it goes and if you're put on in a clinical trial, then definitely let us know what it is.

Take care-
Lisa

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

I'll try again t get this to you.Here is where I'm going this mon. http://www.startthecure.com/
They are also doing trials connected to MD Anderson and probably others. Dr. Amita Patnaik she is HIGHLY RECOMENDED. I can tell you that a friend of mine had cancer a few years ago and she was with this Dr. when she was with CRTC anyway my friend is cancer free. She said she was an angel. I don't know what I will get yet as they will need to find the best fit for me. As you know clinical trials are free. They work as a team with you and you needs. There are cheap Southwest Airline flights to San Antonio. If you want I will have more information after I meet her Mon. my email is cyndi_horses@yahoo.com if you want to email me so I can email you back. I will try and post tues on this site but I have found it is not always reliable.
I am getting more excited as it gets nearer. Oh and my daughter inlaw Jane just found out she has a friend that is a clinical nurse there and she said she wouldn't work anywhere else the people are kind, and all about the patients care and results with good life quality.
Hope this message makes it. I type with 2 fingers and I'm tired. HA! saved it this time and am posting to a different comment bye maybe this one will work this 3rd
Bye Lisa,
Cyndi

califsue
Posts: 80
Joined: Oct 2007

Hi Cyndi and Lisa,

Sounds like I'm in the same boat - KRAS mutantion and all. Hopefully we're all sailing towards a successful treatment outside of Folfox or Folfiri. Even though Dr. Lenz has offered me two clinical trials, I'm not sure if they are the "best" trials out there for me right now. How do you figure that out?

As I wrote in another post, Dr. Lenz was not very impressed with Dr. Stephen Cantrell's work. I called the Neoplas Innovations number and talked for a long time to a gal. She gave me the name and phone number of a colon cancer patient that is on the treatments and has benefited from them. If you want to PM me, I will give you his information.

Best wishes to us all,
Susan

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

hi cyndi im also stage 4 found out march of 2007 mets to liver had the colon and liver resection same year. then on folfox and avastin then on to cpt11and erbatux but 6 months ago ct scan showed spots back in the liver and 2 in the lung. my first thought was o my god i am done what more can i do ...but they had me wait 6 weeks and i started in a study it has been 4 months first ct showed stable didnt get smaller but good news is it didnt grow.had a ct scan on mon i will get the results next mon. but best of all i feel wonderful my only side effects are a small rash on my face and chest and head and shoulders shampoo takes care of that.please try not to be scared(easy for me to say)because im sure the dr will come up with a good plan for you take care tammy

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Tammy I wish all the best for the results of you CT on mon.
Thank you for your info.
Cyndi2324

califsue
Posts: 80
Joined: Oct 2007

Hi Tammy,

Just read your post. I'm glad that you feel wonderful and that your mets are stable so far. I hope that your scan results on Monday are good.

How did you go about choosing your trial? What's the name of your trial and where is it being conducted?

Thank you,
Susan

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

I started clinical trial at Johns Hopkins two weeks ago, after 12 Folfox and 12 Folfiri. I also have KRAS mutation, so Erbitux is not for me. My onc actually encouraged me to seek clinical trial, even though I have not run out of chemo options yet. There are lots of clinical trials available, some of them are very promising. I am sure your doctor will find a good one for you.

Peter

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Thanks Peter
John Hopkins is certainly well know so I hope they can help you. While you are helping them and us find a cure.

Cyndi

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Tammy and Peter,

What clinical trials are you in? What is it that you are being given? Please share more info- thanks!

Lisa

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Lisa Did you get my reply? it is not showing up on my site.
Cyndi 2323

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cyndi,

I didn't get it- can you try sending a PM instead? Let me know if you don't know how to do that.

Thanks,
Lisa

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Lisa,
I do not know how to send a PM. I did try to send info to you 3 times yesterday.
Cyndi 2324

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cyndi,

I did see your info on your clinical trial- it is posted slightly above this now- thanks!
I actually did speak to a man from Tenneesee who is taking Dr. Cantrell's treatment. It was great talking to him and he says it's like a miracle. He was ready to go on hospice and his PET is now showing Nothing and his CT show just one tiny nodule left, which they will surgically remove. He told me lots of details, which I think I'll post on another thread so more can see and read it.

By the way, to PM, you need to go to the "CSN Homepage", then click on "new email" (or maybe it's "new message". You then need to enter the person's screen name, then type the message to them. Hopefully it will work for you in the future.

You take care and hope finding a trial will work out for you!

Hugs,
Lisa

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

My trial is a phase 1b/2 open label study of AMG655 and AMG479. Both drugs are made by Amgen. AMG655 is an antibody that binds to the death receptor of cancel cell and induces apoptosis (cell self destruction) in cancer cell. AMG479 is an inhibitor target IGF (insulin-like growth factor) receptor. It is supposed to disable the growth of cancer cell. Because it is an open label study, so I and the doctor know which drug and how much I am getting. The phase 1 results look very good.

Peter

califsue
Posts: 80
Joined: Oct 2007

How did you go about choosing your trial? I'm new at this and could use all the help I can get. When I asked my consult oncologist about the trial that you are in, he said that he was not famiiiar with the data and couldn't comment.

Thank you,
Susan

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

I chose the clinical trial after talking to the doctors at Johns Hopkins. I also visited University of Pittsburgh, Sloan Kettering and Georgetown. I am very impressed with Hopkins program. They have lots of trials going on. You also can find available trials at http://clinicaltrials.gov

The detail of my trial is here http://clinicaltrials.gov/ct2/show/NCT00819169

Peter

califsue
Posts: 80
Joined: Oct 2007

Thanks for the information. I will search the sites. Seems overwhelming, but I suppose that you have to start somewhere.

Please keep us informed about how you are doing. Best of luck to you,
Susan

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I think clinical trials are options, so you do have that. I am keeping you in my prayers. Let us know how it goes. My sister is also stage iv. She is 39 with mets to her liver and peritoneum. Marie

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I hope everyone understands that when you sign into a clinical trial,
you -do not- know if they are giving you something that might cure
you, or if they are giving you a placebo.

Understand: They do not tell you what group you will be in.

I was a 3c/4 colon cancer victim 3+ years ago. If I get worse,
I will try other options, but I wouldn't want to give a year of my
time, only to find out they were giving me protein and water to
see how I compare with the one getting "the cure".

Life's short, and there other options aside from the blind trials.

Listen, cancer scares us all. It's difficult to think straight when you're
so afraid of dying, but we should really try to take time out to think.

We should take time to research other options that many others
are finding success with.

Shake the fear!

califsue
Posts: 80
Joined: Oct 2007

I read from your bio that you are into TCM. I would love to go down that road. I live in Orange County, Calif. and already spent $2,500 on a "TCM" specialist. Who gave me and everyone else the same bottles of pills and the same accupuncture treatment no matter how different my body was each time I went in.

How do you find a good TCM practitioner?

Thank you,
Susan

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I'm attempting to locate a referral. It'll take a bit.

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Cyndi,
So sorry about your cancer. My husband David was diagnosed stage 3C in 2008 earlier this year found out his cancer had metastisized to his liver. He also goes to an oncologist in the START group but not the same one you are going to see.

Since his cancer was aggressive, he was put in a study, or clinical trial, for his adjuvant chemo treatment. It was NOT BLIND. Many medical tials are blind, but I don't think that's ever true for cancer patients. He knew exactly what he was getting. And it's not true that clinical trials are free. Only the part of the drug that is in the trial is free. In my husband's case it was Erbitux, but insurance still was billed for the FOLFOX and all the other related treatment drugs. There was very little risk to David as he could opt out of the trial at any time. It was later discovered that Erbitux doesn't work for those with KRAS mutations, which he had, so it was discontinued.

My advice is don't be afraid of a trial. They are carefully monitored and you would more than likely have an extra RN to track your progress with each visit. I am a definite proponent of agressive treatments, especially if you are stage 4.

It sounds like you live near or in San Antonio. The doctors who are connected to START are excellent. Also, have you considered M D Anderson? My husband is currently
getting prepared for liver resection there. We have found MDA THE PLACE TO BE if you need more than just a great oncologist. Their team approach is amazing.

Good luck in your journey and I truly wish you the very best. This board is really great and the support here is terrific.
Hugs,
Priscilla

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Priscilla,
Thanks for getting back to the topic. I know MD Anderson is a good place and they are doing some good stuff especially with surgery on cancer. However one of my new mets is at l2 of my sacrum and since I almost died the last time they did surgery in that area I almost died my doctor and surgeon told me it is inoperable. My oncologist also told me That I would not get a placebo drug at START CENTER when I ask her. But I will ask again at my Mon. meeting with Dr. Amita Patnaik. I was also told that some of the clinical trials at Start are also being done at MD Anderson. I also wish you luck in your journey and hope all goes well. You are right about this being a great board, I wish I had joined the 1st year I was in chemo and had surgery. I think I was pretty naive then. Not so much now.
Hugs back at you,
Cyndi

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I really didn't want to scare the poster, or anyone that's considering
to take part in a "clinical trial", however.......

To do the testing according to set standards, there needs to be set
control groups of those taking the med being tested, and of those
not taking the med being tested.

The entire testing is preformed "blind". I.E.: the patients do not
know what they are being given. That requirement is there to
remove the psychological aspects of the test. Patients can be
influenced by the thought of taking, or not taking a new med,
and not revealing the fact to the patient helps defines the reactions,
if any.

Most often, the patients accepted for trials have little, or nothing
to lose...... Well..... according to the medical prognosis....

The tests are usually offered to those who are no longer being
prescribed any medication, or whose medication is no longer
providing improvement.

In either/any case, control groups are required.

I would strongly suggest some reading is done regarding "clinical tests",
and exactly how they work. Any test that does not use "control groups"
and "blind testing" are usually not considered valid to medical standards.

If there are exceptions to that type of "clinical testing", I would
appreciate a link to the data.

For some insight into the testing procedures, and why "end-term"
patients are usually used, read at the link that follows, and try to
understand exactly what is being said:
Clinical testing and placebo

There are plenty of other, safer options.

There is no reason to panic. You can beat cancer; you can beat the odds.

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

The clinical trial I enter is not "blind", nor "placebo controlled". It is an "Interventional, Treatment, Non-Randomized, Open Label, Parallel Assignment, Safety/Efficacy Study". Here is the link http://clinicaltrials.gov/ct2/show/NCT00819169

When I talked to the doctors that do the research, they are very clear about which group I will be in. It is an "Open Label" trial, so we all know what drugs and how much we are getting. If it is a "double blind" or "placebo controlled" study, they need to let the patients know before they sign the consent form.

Peter

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Correct, Peter!

There are trials using adjunct therapy, that have to be used along with
a patient's prescribed Chemotherapy.

And there are trials (preliminary studies) of new compounds.

What you are referring to, is as they state:

"Part 1 is a dose escalation segment to identify a dose of AMG 655 in combination with AMG 479 that is safe and tolerable.

Part 2 will evaluate the safety and estimate the efficacy of AMG 655 at the dose selected in Part 1 in combination with AMG 479 "

Those are preliminary studies.

These are generally studies to find the amount of product that won't
cause a major problem, yet have the response they are looking for.

Neither of those studies are what is needed to learn what effect the
product will have as far as actually curing anything. For that, they
do tests that use control groups, as mentioned in the link I had provided.

To actually "prove" that the compound will do what it's makers say,
it has to be compared with groups that are not taking it, and the elimination
of any factors that might disguise the true effectiveness.

Phase 1 and 2 are "studies" (in this case), and may or may not proceed to
full trials of the product. The full trials undoubtedly will conform to the
usual blind and double-blind tests, along with placebos.

I hope you fare well with the study. If you have decided to go ahead
with it, then you should face it with full conviction, provided they have
given you an honest accessment for a chance of improvement due to it.

Stay healthy Peter, and keep us posted!

(I may want to join you)

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

cyndi sorry i didnt get back to you sooner the study i was on was called panitumumab i went every 2 weeks for my half hour treatment. some people are having good results i was not one of them i found out today that the cancer is still growing in the lung. so they will put me in another study that is called phase 1 multi-arm study of brivanib and capecitabine it is oral chemo. i will start in 2 weeks will let you no how things are going take care tammy

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