Clinical Trials for Colon Cancer
I have Stage 4 colon cancer, inoperable, with metastases to the lungs and liver (also inoperable). Diagnosed about 18 months ago. The lungs/liver are relatively stable. No new metastases since diagnosis. The tumor in my colon/pelvis is growing so I am changing drugs. Today, my oncologist called and told me that the drug I'm going to start is the last drug out there for me. If it works, it will likely work for 3-5 months. Then I will need to go into hospice.
Forget it. I am not done fighting.
What about clinical trials? Should I call the hospitals in my area and ask about their trials? How do people afford to go to trials in other cities (transportation, hotel, food - for months)? Anyone have any experience with this?
I am so upset. I cannot sleep. Any help would be appreciated.
Thank you!
Vivgrl
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I am a bit tired (late where I am ), so this may be a little shorter than I would normally do in a reply (No cheering ;))
Start with finding a new doctor, or getting a second opinion, immediately. Get a genome test (if they have not one or not done one recently.) Foundation provides a great report. Looks at everything and even IDs trials.
Search here
I am not sure everything is up to date on my about me. But Stage IV since 2015. FOLFOX, FOLFORI, LONSURF 2 drug trials about to start a third. Cancer every where. Not once has hospice been mentioned. Always moving forward and looking into things - which includes my doctors doing the same. A couple of weeks ago I washed out from a trial, was going to maybe go to FOLFOX to see how much I could get from it, then Stivarga. Was not the best situation, but there was a plan. At no point was I told hospice or I was screwed. And this was with knowing that I probably could tolerate another 4 rounds or so of FOLFOX and that Stivarga (generally) is kind of last chance with limited effect. (Though many people do have success with all these things and I did better on Lonsurf than most)
Your lungs and liver are stable. Maybe radiation for the other spots if they are growing fast or becoming very symptomatic?
Again, sorry for kind of short post/more bullet point sentences. Get you steps in place now and get ready to jump to the next thing as needed. Also contact ACS to see if they can help with $$. Also note that studies may supplement some costs - hotel and a bit of travel. They hospitals may also have long term/discounted housing available. The main goal is to find what you need, then address the rest. Do not let the tail wag the dog. Not saying that is easy, but do not be deterred.
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Which drug is the last one for you that will only last 3 to 5 months?
I appreciate that the onc is honest, BUT, no one has ever taken hope away from me. I think you should get a second opinion. My onc put it in a much easier on the psyche way, he said something like, we both know you don't have a lot of options left, so let's try ....
Is it that you have a mutation? Or did you have drugs that didn't work for very long?
Anyway, you should look at a 2nd opinion, and definitely look for a trial. Has your oncologist looked into trials for you? Even if where you go doesn't do trials, they should help you find one. There are different mutations, so there are a lot of trials that are specifically for them and such. I can't really say how to look, because I go to a center that has trials, so that is how I found mine.
Don't give up hope!
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The last drug is Oxaliplatin. I'm going back to it (was originally taken off due to allergic reaction). I have two mutations as far as I know. The doctor did not propose any clinical trials. Six months ago, he mentioned one drug that I'd take in a clinical trial and, when I brought it up during his call this week, he said maybe. No indication that he would help me find trials. Instead, he told me that he had found a hospice for me. We had never before discussed hospice in any way, shape, or form. So, the plan he communicated to me is hospice, not trials. Devastating. That's when I turned to this board. You guys have been a life saver.
I'm calling a cancer center for a second opinion on Monday. Thank you for the info re clinical trials - every little bit helps me learn.
I can't begin to tell you how helpful you have been - I woke up and found an email waiting in my inbox and read your post. I will not give up hope. That's a promise.
Vivgrl
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100% agree on both NewHere and Abita, same with my father was never told about hospice, he been through 4 lines of chemotherapy and going to start 5th one.
I second on getting the genetic test, almost every CRC trial I saw looked for some sort of genetic markers and targets it. Find out what exact mutation/genes are involved and you can look for the trials.
Few key genes with some sort of targetted drug/clinical trial available in colon cancer.
RAS, KRAS, HER2 Amplification, EGFR
Two widely used genetics test
Foundation One (The one NewHere) mentioned https://www.foundationmedicine.com/
Another one is guardant https://guardant360cdx.com/p
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So good to know that your father too wasn't told about hospice. Confirms my feelings which is so important. Makes all the difference.
I got a genetic test - need to find the record. Will be calling for a second opinion tomorrow morning and hope I can get it fast because I'm starting the new treatment this week. Read it sometimes takes a while to get the 2nd opinion.
Thank you for taking the time to post to me - I really appreciate it.
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I had oxaliplatin on the desensitization protocol. It does take a longer infusion time, but if it works, worth it!
I had started it anyway when I got the second opinion, so go to second opinion appt while on treatment. You can decide once you get the second opinion whether to continue with oxaliplatin, or stop and start something else, or at least plan of action for when oxaliplatin stops working.
Also, any good oncologist would encourage patients to get a 2nd opinion when there are circumstances that warrant it. Make sure to get 2nd opinion at a different facility. Some places have protocols all their oncologists must follow. Therefore you have to go to another place to get a different train of thought.
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Yes, get 2nd/3rd opinions. Run as fast as you can from that pharma rep onc (needing to make house and boat payment) you have. He is dangerous to you. He does not have YOUR best interest in mind apparently.
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My Onc said basically "you're too young to have neuropathy, we will stop the Ox if you want." That was a couple of years ago. I still have numbness in a couple of toes but she saved my hands and fingers which is how I make money lol. I dunno, the Ox is probably helpful but is it worth it?
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It's me, Vivgrl. My doctor called me out of the blue to tell me all this one week ago today. Phone call. No warning. He took the time to find a hospice that would allow my mother and pet to stay with me but not the time to find a clinical trial or even discuss that option with me.
Got a referral this week for a second opinion and now trying to set an appointment.
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Told me how it was going to be. No discussion. If I die, I want to die at home. Never even asked my preference. Told me in-stay. I'm the only one who gets to plan my death.
Got an appointment early next week for a second opinion. Let's see if I have options and, if I do, what they might be. I will look ahead, not back. That's what survivors do and I plan to be one.
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