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Clinical Trials, anyone have an opinion?

Devasted
Posts: 186
Joined: Jun 2009

We have an appointment Monday to discuss clinical trials?
Any opinions?

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

Well, since you asked.....

A clinical trial is an unproven option. As long as you're about to
try "unproven options", why not explore all the alternatives too?

There are "unproven otions" dating back thousands of years that
are still being used to fight cancer to this very minute...... And some
very recent discoveries that show some promise....

Looking into "clinical trials" takes courage; so does looking into
the alternatives.

Do what you feel is best for -you-, and always, always, always
keep an open mind to anything that sounds reasonable.

You'll do fine.

John

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I don't know about any trials. I'll ask my Onc tomorrow if he knows of anything. Where are you going.
Good luck.
Roger

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

They have many types of clinical trials. They cover phase I, II, III, IV (and maybe more) I was involved with one that was already proven to get be effective but they were still working on the dosage issues. It was a phase III trial. I'm sure somewhere I have the paperwork as to what exactly it was but off the top of my head I can't say exactly what it was. There are of course trials that are only at phase I and that could be something that could put you in a situation where you could get a placebo instead of the actual medication they are testing.

Like John mentioned, there are also alternative methods of treatment that you could consider too. Like most all cancer related questions, there are a million different answers/approaches you can do and not a single one comes with a guarantee.

If things are not going well, I would seriously look into changing your course of treatment.

PS: when I did my clinical trial, I did not see myself as a guinea pig as some people do. I saw myself as a test pilot. I also thought if things didn't work then hopefully I could help someone else by being part of the trial. Someone had to take the steps before I did so I could get to phase III.
Best of luck

Devasted
Posts: 186
Joined: Jun 2009

Just completed 9 treatments of Irr. and Erbutix...no shrinkage of liver tumors, and it appears from CT Scan cancer has not spread, but he is having some back pain and had a bone scan today. We don't have results yet. The onc. said she thought maybe the liver was inflamed and may be pressing on something, causing pain?? The onc. and rad. couldn't find any problems on the CT Scan that could cause the problem. She didn't think the bones were involved but said a bone scan would determine that for sure. The onc. thought the next step should be UNC-Chapel Hill with Dr. Bert O'Neill. We have a consult for clinical trials...not sure what to expect....His cancer has not had any shrinkage of liver mets from Folfox/Avastin for 6 months or the last 9 treatments of Irr. and Erbutix. The Xeloda wasn't effective either. I'm very concerned...

Thanks for your input

drookID
Posts: 20
Joined: May 2010

After the local doctors are out of options (I don't say ideas because they are constrained by what's been approved), a clinical trials also offer hope. My father was diagnosed almost 7 yrs ago, and currently has mets to lungs and bone/pelvic area. He has already run through the list of approved medical options. Not only are clinical trials giving him new options, the positive attitude feels so much better than the previous doctor who was sad/frustrated that he didn't have anything else in his arsenal.

After talking to clinical trial staff recently, I strongly feel that if they didn't have some idea/proof that it will work, they wouldn't be taking it forward as a trial. You can see the excitement in their face when they tell you about it. However, there was no pressure at all, and I didn't feel like they were trying to sell us anything.

Yesterday, dad found out he qualified for a Phase 1 clinical trial at Huntsman in Utah. He will be only the 8th person. This Phase 1 trial does not include placebos, so it is different from some of the others. The trial he will be part of is testing a combination of a drug currently used to treat colorectal cancer and another drug currently approved to treat leukemia. So, the drugs are already approved for use, just not together and not for CRC. The side affects of each are well documented and fairly minimal. The main "negative" is that the drugs must be administered at the location (9 hrs from home). This is the case with most (if not all, but I'm not sure) clinical trials. If for ANY reason and ANY time he decided not to continue, all he has to do is say so. Overall, there is very little reason why he wouldn't want to be part of it (other than the need to temporarily relocate for a while.)

All of that said, depending on the trial, there are going to be many things to consider: phase, longevity of trial, known/unknown side affects, placebo vs. not, costs (dependent on insurance, trial protocol, etc), location, results of past participants, what other options are available, etc., etc., etc., Every person, situation, and trial are different. They are going to spend a lot of time with you explaining the particulars of the trial. In dad's case, they encouraged him to not make a quick decision, but think about it. They also made sure my mom and I understood everything and felt comfortable with him participating.

I can't imagine where cancer treatment would be today if not for the doctors/researchers and especially patients that are willing to try something new. If it weren't for them, most of the treatments available today would not be. Phil mentioned it already, but my dad feels almost a duty/honor to be a part of something that could be tomorrow's standard of treatment. He said even if it didn't help him, it may help someone else, or the researchers will find out it doesn't and can focus their efforts on something else.

As his daughter, I am SOOOOOOO thankful that this clinical trial is an option, that my dad is eligible and I'm proud that he has chosen to participate.

Danialle

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

Re:
"I can't imagine where cancer treatment would be today if not for
the doctors/researchers and especially patients that are willing
to try something new. If it weren't for them, most of the
treatments available today would not be. "

After deciding that chemo wasn't the best route for me to take
so long after my initial cancer surgery, my oncologist and I had
a long, long talk... What he told me was repeated in context, with
what is said in this article that was published long after our talk..

Kennedy’s War on Cancer, and Our Own

We allow ourselves to become guinea pigs to the industry, believing
that they will use our life to benefit others, if not us. But do we also
believe that those that gave their lives before us, did so, so that we
are now enjoying a cure?

Fight cancer any way you can, but don't put all your eggs into one basket.

If you see that something isn't working, change directions; try
something else.

Sometimes, being "radical" can actually save your life.

Best wishes....

John

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

"After deciding that chemo wasn't the best route for me to take
so long after my initial cancer surgery, my oncologist and I had
a long, long talk... "

I'm glad you had your talk and decided what was best for you. I read the article you linked to from the NY Times Opinion page. It seemed to have things pretty much right on I thought. They have not won the war on cancer but the overall comments were about how there have been some big advances in life expectancy and some cures in people. One of the most important issues that remains is that we are not catching the cancer early enough. That is so key with this disease

"We allow ourselves to become guinea pigs to the industry, believing
that they will use our life to benefit others, if not us. But do we also
believe that those that gave their lives before us, did so, so that we
are now enjoying a cure?"

Yes John, some of us "guinea pigs" do believe that.
Please correct me if I'm wrong but I don't recall you participating in a clinical trial. How are you using the word "We"? You can call us "guinea pigs" or whatever you want but some person put their life on the line. I would even imagine that some of the treatment you received possibly came out of research that "guinea pigs" participated in.

People certainly have a choice. They were told up front that what they were helping to test may or may not help them, and that the person would have understood the risk involved. They chose to give it a try so they might benefit and others might benefit too. I would also imagine that there would be people who's only reason was to try to get a cure for themselves and didn't care about other people. I won't pretend that the sole reason I participated in a clinical trial was so I could only help other people. I wanted it to help me but I also understood that I did not have many options with the route I chose and that if it didn't help me it maybe could have helped someone else. Even with something like TCM, people have to test the therapies. It is not a cure by any means just like chemo isn't a cure. They too are "guinea pigs".

Is this all a big business, you betcha. Does that mean that people are not really trying to find a cure? In my opinion no, I do not believe that. I believe that some people actually want to cure this disease. We've butted heads on issues before and I'm sure we will again. It is usually the S.O.S. though and I doubt we'll ever find a cure for that!
;-)

"Sometimes, being "radical" can actually save your life."
And...sometimes being "radical" might actually help save someone else's life. Now there's a thought...
-phil

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

Re:
"Please correct me if I'm wrong but I don't recall you
participating in a clinical trial. How are you using the word
"We"? You can call us "guinea pigs" or whatever you want but some
person put their life on the line. I would even imagine that some
of the treatment you received possibly came out of research that
"guinea pigs" participated in. "

Re:
"Even with something like TCM, people have to test the therapies.
It is not at always a cure by any means. They too are "guinea pigs."

Asked and answered, Phil. You didn't need input from me at all.

I tried what most are afraid to, and although I may die of cancer
eventually, I did not suffer all the side effects that "modern medicine"
doles out with each prescription.

Was I a "guinea-pig" for the concept and philosophy of "TCM"
and it's herbal treatments?

Well...... knowing that the science is a few thousands years old,
I'm not too sure what number was given to me at the herb farm.

I may have been "testing" the herbs as far as I had been concerned,
but all the thousands of years of individuals that came before me,
gave me some courage that I simply don't have with modern day
chemicals that are produced in factories.

You're right Phil.... we all have to make our own choices in life.

But when I see friend after friend, and poster after poster getting
worse instead of better, I can't help but want to encourage other
cancer victims to step out of the box, and take a chance of being
helped, instead of being an experiment.

Better health!

John

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

"But when I see friend after friend, and poster after poster getting
worse instead of better, I can't help but want to encourage other
cancer victims to step out of the box, and take a chance of being
helped, instead of being an experiment."

There is certainly nothing wrong with encouraging people to seek out other treatments. I applaud you for going the TCM route. I'm happy it has worked for you. Like you've said many times before, if something is not working, seek out alternatives. I totally agree. If something is working, stick with it. Either way one can be looked as as a guinea pig whether it's the chemo route or the TCM route. If people did NOTHING, little is any progress would be made. I've seen many people get worse and I've seen many people become NED. Hell, I've seen people die just from natural causes too!

It's certainly no secret that your philosophy is to use TCM. Your "About Me" says it clear. That's great. Maybe not everyone has seen you around long enough to know that they will rarely see anything positive about western medicine in your posts. I (and who the F am I? just someone with cancer who has benefited from being in a trial) really found your comment "We allow ourselves to become guinea pigs to the industry, believing that they will use our life to benefit others, if not us. But do we also believe that those that gave their lives before us, did so, so that we are now enjoying a cure?" inaccurate at best.

Not everyone has the attitude you need to become part of a clinical trial. There is a certain "leap of faith" that is required. It's neither here nor there, it's how it is. I wouldn't volunteer to just do this stuff if I did not have cancer but I have always donated blood (until I was told I could no longer do it) and I signed without blinking the organ donor section of my drivers licence.

Lest not forget that many of the cancer drugs they are testing are things that have been found in nature but are so scarce that they need to be synthesized in the lab then at some point, someone has to test them.

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

You have been very fortunate to have an oncologist that is very
conscious of side effects, etc., in the administering of your drugs.

You have also been fortunate with locating "trials" that may have
helped you.

But read my post to Danialle; Read about Trovax.

If I took part in the trial for Trovax as it had been "trialed" here in
the USA under the direction of that investing company, it would
have resulted in nothing more than a waste of my time.

How many times have scenarios like that happened? I cited
Hydrazine Sulfate as another example... and that's a chemical, Phil,
not unlike any other chemotherapy chemical (and against my
basic principles), but it actually does destroy cancer tumors,
as well as individual cells. It's an MAOI, and requires a strict diet
for the time it's taken (about 6 weeks).

The trials for HS were as skewed as the Trovax trials. If a strict
diet and the absence of other certain drugs are not excluded from
the diet while on HS, HS won't work. Being on a trial for that
would have been a total waste of precious time for someone
with little time to spare.

So for you, Phil.... a trial has worked out fine. but for a very large
majority (and those numbers are represented here in percentages)
have not been so good. If the time was spent in vain or not, isn't
something that we can tell easily.

It seems to me Phil, that a good oncologist can experiment with
combinations of "approved" chemicals, and do more for a patient,
than some big company's quest for a profit-making product.

I don't "hate" western medicine, I just hate the way it's pushed over
other alternatives that can do so much better, in so many instances.

It's the propaganda, not the product.

Take care, and keep providing "the other side" for me, willya'?

Thanks,

John

drookID
Posts: 20
Joined: May 2010

I always start out thinking "I'll write a quick response to that" and end up with a book. Forgive the lengthy post.

Short version: That’s not what I believe, I believe in the good of people, great information on this board, your response was thought provoking as always!

Long Version: I refuse to believe that the only reason we don’t have a cure is because of greed and money. (Not trying to open the debate, just telling you where I’m coming from). I do not believe trial participants become “guinea pigs to the industry”. I do not believe that trial participants are being “used” in any way. I do not believe some give their life so that others may be cured. That may be the outcome, but not the plan. To be frank, my dad is very sick. He will die if a clinical trial doesn’t work (soon)! Whether he doesn’t participate, or whether he does and it doesn’t work, it will not change HIS outcome. If he does participate and it works, it would be FREAKING FANTASTIC. Let’s say he does not participate because he is afraid those beliefs are true, and suppose I could have been cured by the drug they wanted to try (or maybe prevented cancer from a related study) his abstention definitely affects my outcome.

There are good and bad people in every entity, organization, group, club and profession. I believe that, as a whole, doctors and researchers want more than anything to find a cure…for the right reason. They feel the loss of each patient that dies, they want to heal those that are sick and they rejoice with each person who sees success. That is what I believe we’ve found for my dad.

This is a great forum and I’ve learned so much here. The fact that so many people provide different thoughts, believes and opinions just makes it more appealing. My kids would laugh at what I’m about to write (they’ve heard it too many times). My rule: “You don’t have to agree with or respect the opinion of someone else, but you must respect that as a person they have a right to believe and express it. Therefore be respectful in your response”. I promise you this. I will never dislike you or disrespect you because of your beliefs or messages.

John23 – Thank you for the article link. I have read your posts with interest. They’ve educated me enough to do more research. I’ve passed info on to the real boss (dad). He’s never been called a “radical thinker”, but to my surprise he read it and was not entirely opposed. He’s not ready to visit a practitioner. I will support him in that, but if/when he wants to talk about it more, I’ll be ready and I’ll have the names of who to call. I can’t say for sure, but if it were me that was sick I might already be there; but only because of what I’ve read here. Keep the ideas and info flowing….it was good to re-read, reanalyze my response.

I still stand by what I said in the previous post. I’m thankful for clinical trials and hopeful for future cures/preventions BECAUSE of the trials and because people are willing to participate.

Regards, Danialle

Just read Phil's post and had to add to this. Yes, I want it to work for HIM! I won't even try to pretend that my first thought is for the benefits it could provide others. I will support and thank my dad every day for trying ANYTHING to stay here with us, and be able to live life to the fullest, even for just one more day. Once I get past that initial thought, I think of all the relief and happiness it could bring to others if it works, and that makes it even more exciting. Just thinking about it makes me smile a huge smile. The fact that dad could possibly help someone else makes it a perfect choice for him.

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

Re:

"Long Version: I refuse to believe that the only reason we don’t
have a cure is because of greed and money. "

I have an even longer version....

And I don't mean this to be argumentive, just an explanation to
try to provide some insight to the situation.

So let me give you a most recent example:
Trovax; Oxford Biomedia inc. ( a sub of Oxford U in the UK)

I personally followed Trovax with tremendous excitement. It was
originally produced to work with the immune system, to fight cancer.

It was similar to any other vaccine, where it would "teach" the immune
system what cancer is, and the immune system would then do the work.

They had fantastic results on various "types" of cancers, but they
were required to continue testing for release.

They were having trouble getting the investors they needed, until
finally a very major corporation that decided to invest millions into
Trovax, and begin trials here in the USA.

That heavy investor was the leading producer of chemotherapy
drugs world-wide.

That major company insisted on using Trovax as an adjunctive
to their heavy-duty chemotherapy drugs, and tested it on cancers they
were already having problems with.

Trovax failed to show any promise at all; there wasn't any advantage
using Trovax with that company's products, and the company - after
spending millions and millions - gave the license back to Oxford Biomedica.

Trovax's stock sank, as other investors dropped out. Trovax is now
"shelved" until investors are found.

Trovax was originally designed to work with a healthy immune system.
Chemotherapy damages the immune system beyond it's ability to fight
simple diseases........ Using Trovax as an adjunct to what would destroy
the immune system, was nothing more than a planned failure.

The story was the same for "Hydrazine Sulfate", and tyhat debacle
took place years ago. (see also: http://www.health-science-spirit.com/hydrazine.html)

I lost faith in the pharmaceutical industry long ago.

It's a money, greed-driven industry that cares more about their
"bottom line", than who's going to the bottom of the 6' hole.

Vioxx from the illustrious Merck, et al, is a great example of just
how much they care about lives vs the dollar.

It's called "risk management" in the corporate world, and it's all
about how much you can make before they catch you and make
you pay something back..... And if the "payback" is only millions to
the billions made, who cares?

That's reality, not tin-hat thinking; I'm no conspiracy theorist,
I'm just a guy that's sick of seeing what's going on, and seeing
good people die from it.

Even the best of caring oncologists have little choice of what to
prescribe (in this Nation), since the industry controls the products
and "remedies". Surgeons can explore other avenues, but a licensed
oncologist is limited to the drugs he is permitted to prescribe.

And let's face it.... what oncologist is going to stray from approved
methods and risk a lawsuit later if the patient dies?

Is it "all about the money"? We don't have to think hard with that one.

What's best for your dad, is whatever he feels is best.

Chemotherapy and radiation kills cancer cells, and at times,
is about the only thing that might do so quick enough.

Surgery will always be my first choice for "quick removal", and
chemo, etc if -absolutely- necessary. There is no room in the fight
against cancer for prejudices against one treatment or another.
We have to figure out what will help us most, and try to keep
the side-effects (especially the long-term ones) at the very minimum.

We should never allow ourselves to get so sick from treatments,
that our own body begins to have trouble staying alive. We have
been "designed" to stay alive under the most severe situations, and
medicine should never be permitted to destroy that complex ability.

They are now finding that in many cases, once cancer cells die,
the immune system fights off the balance, but the immune system
has to be up to par...!

The bottom line may eventually be found, that regardless of what
we use to kill those cancer cells, if we maintain a healthy immune
system, our body will do the rest for us without outside help....

And that, is what so many other cancer-free individuals have;
an immune system that does what it should be doing.

Give your dad my very best wishes

John

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Just had to respond. Just because it is a phase 1 trail does not mean you aren't getting the medication. You need to read. Double blind means that even the doctors don't have an idea who gets the drug. phase 1 with cancer will usually include drugs that are already approved for cancer and they add another that is being studied into the mix. Usually drugs can go before the FDA after phase 3 or 4. Then the FDA can request more study or put it on a fast track. I believe with cancer you get the drugs with something that is not a matter of life or death they do placbos.

Do check all options like ones have said. If we had known all the cancer drugs when John was first DX we may have gone on the trail they had us look at. Nothing was explained and it was only for the people that had not been on any drugs for cancer.

I myself have been involed in trials for MS and they can be a good thing. If you trust your doc that if they aren't working he will pull you off and try something else. Without these trials we would not have the medications out today. Paula

Left Coaster's picture
Left Coaster
Posts: 25
Joined: Jul 2010

Hello,

It sounds like you are in the information gathering stage of clinical trials. This is a great conversation to have with your Dr. I don't know what your situation is regarding health insurance coverage. If you have private coverage, it may be a good idea to make a call to your insurance company. Often times, the decision to proceed with a treatment is tied to the expense attached to getting that treatment. It always helps me to know what is and what is not covered, at least in general terms. The drug or device under investigation is typically not charged to you or your insurance. Your Dr. should be able to tell you if they do charge. Other ancillary charges in relation to the clinical trial are normally covered by the policy. All policies are different in one way or another and knowing how your insurance handles clinical trials will only help in your decision making.

Ryan

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