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

Hey Everybody,

In my quest to figure out what I need to do next at this point in my cancer fight, I just read through all 813 clinical trials listed under the clinicaltrials.gov website for either solid tumors or colorectal cancer(that number very well may be different when/if you do a search- it depends upon what you put in for your search and I believe that the trials listed are subject to change at any time, plus some could be deleted and some could be added). Due to my limitations and the limitations of many studies (depends upon your stage of cancer, how many lines of chemo you've already had, what chemos you've already taken, whether you're KRAS mutated, etc), I came up with eleven that I printed out. I probalby could have considered more than just eleven, but I tried to print out phase II trials instead of phase I- just a couple of what I printed are phase I clinical trials. These are studies taking place around the country. Two are at USC, where I'll be going to see Dr. Lenz on Nov. 22nd. The clinical trial he's talked so much about on his blog recently re. the drug that addresses the cancer stem cells is not among the studies I printed out yet, because it's not been approved yet and so it isn't yet on the clinicaltrials.gov website. That trial will be a phase I trial but, as Dr. Lenz described it, there seems to not be any side effects, so I guess escalating the dose "until toxicity" hopefully wouldn't be a big issue in this case (in fact, Dr. Lenz mentioned in his blog it could be a benefit to the patients, but a detriment to the study as if no toxicity is shown in the patients, it will be hard to establish what the proper dosage to give to the patients will be).

My thoughts on looking into clinical trials...if looking into clinical trials for yourself or a loved one is something you're considering now, soon, or maybe in the future and you haven't yet checked this website out, you need to do so! It's kind of overwhelming because there's so much info there. You'll need to narrow down your search to open trials and either colon cancer, colorectal cancer, or solid tumors. The trials listed under solid tumors will give a few more options than simply searching under your specific type of cancer. Then you'll want to check if the clinical trial is a phase I or II (or III, but I didn't see any of those). Phase I clinical trials are where they are testing the safety of the drug and trying to determine the dose of the drug by increasing the dose they give you until you have toxicity. Kinda scary & I personally would rather avoid those if I can. Unless, that is, you or an oncologist knows something about the particular drug and thinks it's worth going for.

This website includes clinical trials all over the world. There were some drug trials that looked interesting, but then I discovered they were in the UK or China or something like that. There was one that really looked interesting & then I realized it was in Jeruselem, Israel. I don't think I'll be going there. (I actually did in 1999, but that's another story... :)
Definitely most of the listed clinical trials are in the U.S. If you want to find out quickly where it's located, after you click on the trial, scroll all the way down to the bottom of all the info and it well tell you where it's being conducted. Some of the studies are being conducted in multiple locations while others are in just one location.
I've discovered that even if the study is located far away from you, it may still be do-able in that some don't require you to go to that location very often, while others do. You've just got to read the info on it. To find out clinical trials at a particular location, you can also just do a web search for a particular cancer center and check out their specific clinical trials, as well. I did that for several places around the country, but then decided that there definitely could be trials at places I wouldn't think of or even know about to do a search on, which is why the clinicaltrials.gov website is good, because it lists all trials everywhere.

Take care everyone!

AnneCan
Posts: 3692
Joined: Oct 2009

Wow, Lisa,

I can't believe you looked through that many clinical studies - good for you! There is a lot out there; no wonder some oncs have a hard time keeping up. Thanks for sharing this info.

Erinb
Posts: 295
Joined: Apr 2010

Wow Lisa! You are amazing! Are you still keeping up with no sugars (did you try that) juicing and supplements? Just curious, I'd like to know if it can work. My husband has went strong for just shy of two months but broke down and had bread (yesterday) and Gatoraid when he was sick with low WBC. I will be interested to see what his scan looks like. He's probably going to be on chemo for a long while unless we can get his tumors to stablize without chemo. I believe it's possible. Thanks for the info on the drug trials.
Erin

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

Hi Erin,

I wish I could say I've kept up with no sugar and juicing- ugh. I was just reading about nutritional types the other day and I believe I am a carbohydrate type- I just couldn't give up breads/pasta/cereals. I definitely have made a good effort to cut back on sugar and I use stevia or blue agave nectar in my tea instead of sugar now. I don't buy sweets nearly as often, but they're definitely still in the house- my husband has his nightly ice cream & I probably have some too about once a week. That's great that your hubby went so long without bread or sugars. I don't know the benefit, honestly, of going without bread, as long as it's not just the white stuff.
The juicing was hard for me to keep up with, BUT, I HAVE been taking "vitamineral green" which is full of all the green veggies- it's nasty tasting, but very healthy. I also am taking daily: vitamin C,rose hips, resveratrol (red grape seed extract), cimetidine (Tagamet), pomegranite extract, acai berry liquid gel caps, selenium, fennel seed, turmeric (stopped for awhile and started again), blue-green algae, spray vitamin D-3, calcium, & fish oil. I was taking even more before for a while, but these are the "staples" of the supplements I'm taking. I stopped taking all of them the couple weeks before my recent scan- my thought then was that maybe I should be testing the chemo itself more on the scan and don't know if my supplements would have influenced it or not. I started them all up again yesterday. Don't know for sure if they'll help my cancer (of course, that's the reason i'm taking them in earnest- but, even if it doesn't help the cancer- I don't think it can hurt (my onc agreed) and they should definitely help my immune system and help me with feeling more energetic while going through all this garbage.
Hope all goes well with your hubby- you might google the above mentioned supplements and have him consider taking them or at least some of them.

Hugs,
Lisa

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Wow is right! You really did your homework! I didn't realize that there were so many ongoing trials - thank you so much for passing on all of this information. I pray that you'll be able to locate a viable clinical trial in the very near future. My thoughts are with you. God bless you always, Cynthia

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Lisa, the trial I am on is a Phase 1. I would love to be on Phase 2 or 3 or even dream big and say 4, but they aren't readily available. I have been so impressed working with Dr. Kelley and Dr. Pamela Munster at UCSF. Even though it is a phase 1 trial, I have felt very cared for and encouraged. It certainly is something that a person has to really believe in as I am finding that I am in SF about l time a week for the lst and 2nd cycles, with some visits being actually 2 and 3 days. It's what I signed up for, because that is what there is. I have to say the experience has allowed me to grow in so many ways, I have conquered fears that I would have cried over before this. I have forced myself to learn and accept this trial as a gift to buy me time, until something better comes along. I get so scared when I really think to much, so I try to concentrate on on the positive aspects of it! My hope is I can stay healthy enough to try, try and try again, until I win! I hope you will have incredible success in trials and learn as much as I am! My very best wishes and prayers. Jean

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

Hi Jean,
I know you've been through a lot. After realizing there aren't a whole lot of clinical trials that suit my situation in southern Calif other than the 2 or 3 at USC (none matched my needs at City of Hope, UCLA, UCI, or UCSD)- I did also check under UCSF. I didn't notice anything there either, but my eyes were starting to glaze over after scrolling through so many, so I guess it could be possible I missed some. Hang in there- and you're right- what doesn't beat us down makes us stronger, like you mentioned conquering fears that would have made you cry before this. I will be praying for success in this trial for you, at the same time I pray that I can find some trial for myself.

Hugs,
Lisa

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Lisa, you are still in my prayers. God will honor us, I know it!! Keep the faith. Jean

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Hi Jean, My husband was refered to UCSF for a clinical trial as well. He will go to see Dr. Munster on No. 23rd. How is your Doctor at UCSF currently, Dr. Kelly or Dr. Munster? I hope the trial will work great for you. I may need to contact you for more information about the clinical trial. Thanks. - Lucy

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi newperson - Dr. Kate Kelley is my onc at SCSF, after my doc here referred me there. She is a very warm and optomistic young momen as are her staff. Currently, I am under Dr. Pamela Munsters care but beleive I will still see Dr. Kelley again....(I seem to stay a bit confused!) What is your husbands diog? I am stage 4 cc with mets to the lungs. I am on my 2nd trial there. The lst was with Dr. Kelley on the medical side, as all drugs had been approved, but the trial was in how they were using them. Now I am with the research side and the drug I am on is not approved and just a phase l trial. I beleive it would be very difficult for a stage 4 patient to see a phase 3 or 4 trial. I don't know that for a fact. Anyway, I do travel to SF a lot, but it is a choice I make. Everyone will have to do what they can do. Where do you live? I am in Chico, Ca, about 80 miles north of Sacrament. Feel free to contact me Whenever, as some of if I get, but I still have lots of questions to! The staff is incredibly nice and totally respective of me, yet we laugh and try to make the best of it! Best to you. Jean

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Hi Jean,

We have an appointment with Dr. Munster on 23rd this month to discuss the trial. We only know it's gonna be phase I trial, nothing more. We live in Moraga, about 40 miles east of San Francisco. We have visited UCSF a couple of times for second opnions. But my husband has been treated at our local Onc office. He was dx. in Dec 2006, had reccurrences in 2008 and has been on chemo since then. Both chemo (Folfiri+avastin, irinotecan+vectbix) failed. He is not doing well now. His Onc is refering him to UCSF for cilincal trial. Please keep me posted how you are doing with the clinical trial. My best wishes to you on getting great result from the clinical trial.

-Lucy

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Hey Lisa,

I thought the same thing about Phase I trials also...too new...too scary. The first trial I was on was a Phase II trial...not the best results. So I then switched to a phase I and I've had great success. Last scan showed no growth and actual shrinkage in some of the lung tumors. And my nagging cough has disappeared! Now, I do feel like more of a lab animal and I spend quite a bit more time at the hospital being studied, but with results like the last time...I think I can deal with that. Interestingly enough, my side effects have come more with the FOLFIRI which I'm getting in combo with the experimental drug. The experiment drug is oral...I take 5 pills a day, every day...no side effects. If you remember, FOLFIRI didn't work for me the last time as the standard treatment. And even now, I don't start to suffer except with my bi-weekly infusions of folfiri...and boy do I suffer. Just like before. That drug cocktail is horrid for me. I just have to think...6 days per month...6 days per month...I can do it. I certainly wish I could just take the experiment by itself. But of course, we don't know if the lapatinib gave the good results or the combo of the lapatinib/folfiri. UGH.

Anyway, I can't wait until we all find the correct combo that will work for each of us individually.

-Sheri

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Sher, thanks for sharing. I was happy to hear you have been successful with trials! My lst trial didn't work, and I will have scans in about 3 weeks to see how this is going. Where are you going? I agree, I do spend a lot of time at the hospital, but....what ya goin' do!
Best to you and again, thanks for sharing. Jean

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Hey Jean! I'm over at lombardi comp cancer center at Georgetown u hospital. What about you? And what trial are you on? My first trial was ABT 888.

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

hi Sheri, I am in California and about 3-4 hours (depending on time of day and traffic) from San Francisco. I go to UCSF. I was Dx 3/08, had surgery with a complete hystr. and resection, but still have mets to the lungs. I have not been a candidate for lung surgery as I have lots of little spots that seem to continue to appear. I might be a candidate if they would stop appearing, but no go! I am on a Gaxco Smith Kline trial of an inhibitor. I am positive for KRAS mutation, so drugs have been limited. My doc here in Chico referred me to UCSF and it is nice to know that they agree on treatments and dx. The lst trial I was on was avastin, and another older chemo (sorry - I'm blank) . The drugs were all approved but now used in that combo for colon cancer. I feel good and am still working full time. I have nueropathy really bad in my feet from ocy and that is the worst problem I have.... I told them when I am cured using this new drug I want it named for me!! Love to talk with you more. Jean

taraHK
Posts: 1961
Joined: Aug 2003

Thanks so much for posting this -- really useful. And I wish you all the best with your situation --

Love,
Tara

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

Hey guys- thanks for the comments Anne, Cynthia, Erin, Jean, Lucy, Sheri, and Tara!
Lucy- hope all goes well on the 23rd with the consultation for a trial for your husband at UCSF. Sheri- thanks for the comments on the phase I trials- ok- now I won't rule them out and am so glad you are getting better results with this trial so far than the last one.
Tara- good to hear from you! How are you doing lately? With you being in Hong Kong, I'm wondering if there is another clinical trials website that shows more drug trials/studies in your part of the world. For studies near you, I only came across one in China and I think another in Japan (there were maybe a couple dozen in Europe and one I saw in Australia). Are there actually more studies than that going on near you? My thought is that maybe clinical drug trials in countries outside the U.S. don't all post them on the clinicaltrials.gov website.

I'll check back in w/ everyone after my consultation on the 20th in Los Angeles.

Hugs,
Lisa

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

Clinical Trials.gov - FAQS

It should be realized that -anyone- (including me) can submit a
proposed "clinical trial" to be listed on the ClinicalTrials.gov web site.

Although the web site is chock full of interesting "trials", one
should consider in depth, the risks involved with being a test
project for some sponsored industry........

We have, or have had, cancer. We all live with a certain amount
of fear that it will get worse, or come back. It should be imperative,
that we do not allow fear to steer us into paths that might only
be of benefit to those interested in making a profit on our backs.

Better health to all !!

John

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

Hi John,

Thanks for the info link- I had not read that info before. When someone is searching through the trials, however, it can easily be seen who is sponsoring the trial- whether it's Georgetown, Norris Cancer Center, or if it were some other unknown individual. All that info is there to be seen, so I don't think anyone would blindly be taken in by some unknown "no one" in a clinical trial.
My search into clinical trials at this time is not guided by fear- I have done a lot of checking out what is available to me at this time. I know that Chinese medicine is there as you are a proponent of and that there are several herbal supplements available, as well. I am trying to be very aware, myself, of what each clinical trial that I look into or consider is. I am being quite picky, actually, at this point & will not consider anything I consider to be "too" toxic. I've had enough of that, honestly! My cancer, however, is quite aggressive and I do not plan on just sitting back. I know the whole frustration of the pharmaceutical industry and how they make so much money off us. Right now, however, my concern is finding something that will stop my cancer from growing- maybe even start to shrink it. I am continuing right now with a large amount of supplements- several things that I believe will strengthen my immune system.
I still haven't investigated the Chinese medicine route, but I still may end up doing that.

Thanks for your input, John- truly- but I also wanted people to realize that they can check it out for themselves who is sponsoring the clinical trials. That is often the problem- too many people don't check things out enough for themselves and rely on what doctors refer them too. I listen to doctors too, but never follow through with what they recommend or not until I've also done my own homework on any recommendations.

Lisa

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

My comment wasn't directed at you; I know you have been
researching things very well for quite some time!

My comment was for any others, that might not be aware that
-any- entity from -any- country, can submit their trial to the web site,
and it can appear to look like a very valid, worthwhile trial to
an unknowing soul.

It's easy to get caught up in the propaganda when we're
frightened as all hell about the possibility of dying; Cancer
does that to us..... it scares us into submission. It makes it
so damned easy for any unscrupulous entity to grab a profit
from anyone in that state of mind.

Cancer's a tough thing to beat, but maybe we're trying to beat it
using the wrong methods. A cancer cell is such a basic life-form,
yet it's made out to be a complex, intelligent thing....

It's a simple one-cell design, using the simplest of processes
to remain alive. How much more simple can it be?

By the way Lisa..... please be aware that cancer uses glucose
by stealing it from our system. Limiting the intake of sugar (glucose)
will only leave our good cells starving for it, while the cancer
cell continues using what it needs from the rest of our body.

That's why late term patients get fatigued and skinny; the cancer
is using the components for energy, leaving the good cells without
what they need to survive.

Take care!

John

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

Thanks, John- much appreciated!
Interesting about the sugar/glucose. I know there are different thoughts on that. I know all cells need glucose. I guess limiting extra sugary foods is not the same as limiting all carbs which turn into glucose (I guess all foods turn to glucose, but I think the carbs do it more quickly- not really sure on that, actually).
I'm not one to talk as I haven't been a very good example- just finished chomping down three chocolate chip cookies right before writing this reply.
I imagine it would always be best to get the glucose from healthy food sources and not presweetened, sugary junk, but what you said does make me think that maybe it isn't so important after all to try to avoid all sugar? Maybe I'll keep trying to eat healthier and less sweet stuff, but I won't beat myself up for eating it some (those chocolate chip cookies hit the spot!)

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