Any other end-of-treatment options?

Posted by marcia @marciak9, Jan 25 8:43am

So I was taking Lumakras because I have the mutated genes KRAS and G12C. It worked well for about 5 months, even shrunk a couple of tumors. My last PET scan I did on Monday showed growth in those tumors and lymph nodes.

My oncologist wants to give me the Irinotecan that they pulled because I was having an allergic reaction. I’ll have to spend the night in the hospital to monitor me for any signs of reactions.

It feels like the beginning of the end. Any other experiences with Irinotecan?

What do you do when you run out of options?

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markymarkfl | @markymarkfl | Jan 25 4:48pm

Is it the new liposomal irinotecan (Onivyde)? Will that be done in conjunction with the at-home 5FU pump? I've had two oncologists propose it, but don't want to do the pump again.

I guess when you run out of options, keep looking for more options! Hope this treatment serves as a bridge that holds you over until another trial opens up.

There might be more options overseas if you're able to travel. I've heard Germany is a lot more open to combining treatments that aren't approved for use together in the USA, but I also read that they had many changes scheduled to take effect 1/1/2025, so I'm not really sure what's available there.

I did get a quote for a "personal peptide protocol" treatment (in Germany) derived from my own tumor tissue (or NGS results if tissue is not available). It was in the range of $80K. I haven't seen any peer-reviewed papers supporting it, so I can't tell if it's just snake oil, but it has the markings of it. Being stage-4 myself, I'm open to a lot of unproven options (on top of my SoC chemo), but I'm too cheap to drop $80K on anything without a clear history of benefit.

marcia | @marciak9 | Jan 25 5:52pm

In reply to @markymarkfl "Is it the new liposomal irinotecan (Onivyde)? Will that be done in conjunction with the at-home..." + (show)

Wow! That is a lot of money for a trial. My oncologist found 2 trials here in the states. One is in Philadelphia and the other is in North Carolina. I can’t afford the expenses. I’ll have to see if my insurance covers trials.

gamaryanne | @gamaryanne | Jan 27 7:59am

@marciak9
you may also want to contact Pancan.org and give them the details of your situation to have them send the trials that could match with you. Each one has different exclusions, usually dependent upon previous treatments and location of tumors. My guess is there are more than 2 that you match with. Some may be recruiting, others not. When I found a trial I wanted, even though they were not recruiting, I sent all of my records, interviewed for it, then got a slot about 3 months later when someone dropped. Insurance typically only has to cover standard tests (like blood tests we normally receive anyway) and the trial most often covers the rest. I travel to a trial site in NC which is driving distance for me. It began with travel every 3 weeks and is now at 6 weeks. What gene mutations do you have?

marcia | @marciak9 | Jan 27 8:40am

Thanks! My mutation is kras and g12c

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