Questions about SBRT radiation therapy targeting liver mets

@gamaryanne, I believe @robee @ncteacher @k13 @brittbk may have experience with SBRT (stereotactic body radiotherapy) relative to pancreatic cancer and/or liver metastasis. You might also be interested in this possibly relevant discussion:
- Switching to chemoradiation (Xeloda + radiation): What to expect?
https://connect.mayoclinic.org/discussion/questions-about-chemo-radiation/
Did I understand correctly from your message that radiation is being suggested to reduce inflammation of the liver related to metastatic spread to the liver? It sounds like you're concerned (probably also frustrated) that treatment may be delayed while waiting for insurance approval. Are you in discomfort? How are they helping to manage your symptoms while you wait?

I actually haven't had experience with SBRT. I inquired, but was told no for me. However, I'm scheduled to begin chemoradiation this Tuesday 6/25. We will target the main tumor. (I never had the Whipple, so my main tumor is still in place, although much smaller than before thanks to chemo.) I know one of the benefits of SBRT is a shorter course of radiation, maybe 3-5 days, and the radiation is much stronger. I was originally projected to have 28 rounds of radiation, but that has likely changed. A few weeks ago, I suddenly developed a blockage in my duodenum and had a stent installed on Tuesday 6/11. The radiologic oncologist was being very cautious with me due to my ATM mutation, which makes the patient more susceptible to radiation's ill effects. But the last time we talked, he said he would likely increase the radiation. I assume that's because of the blockage. So my guess is I'll have fewer rounds at a higher dose, but not SBRT. During radiation, I'll be taking capecitabine (generic Xeloda) on radiation days only--three tabs in the morning, two at night. Capecitabine metabolizes into 5-fluorouracil.

I don't know yet when we'll do another CT scan to determine progress. Interestingly, CT scans taken on 6/3 and 6/4 do not show the duodenal blockage. It was diagnosed from clinical symptoms. I'm told we'll pull CA 19-9 blood tests periodically; we've been doing them every two weeks. FYI, I was told that radiation would likely make the CA level increase at first. My current level, which was taken Monday 6/10, is 177. I was sick from the duodenal blockage, and that's likely one reason it jumped.

Re insurance, I am fortunate in that I've had no challenges, denials or delays for any treatment, at least none that I've been informed about. I'm on traditional Medicare parts A and B and a Medicare drug plan part D. Insurance delays are so frustrating, and I'm sorry you're dealing with them.

I did not have standard radiation. I was/am not eligible for surgery. I found the following article and contacted MSK.
https://www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic
This is not standard SBRT. I stayed in NYC for a month and received this treatment daily. No side effects. Soooo much easier than chemo. Initially markers went up but eventually dropped rapidly. All believe the primary tumor to be dead. There has been no change in over a year. Kept me off chemo for 6 mos until a tiny spot showed up in my liver. So I had to get back on chemo. Because the spot was near my stomach, doctors were concerned but neither the local doctors nor the comprehensive cancer center where I get chemo would touch it. So I reached out to MSK who gave me a couple options. One was a Y90 procedure. My understanding is it’s a radioembolization procedure where radioactive beads target the tumor sparing the remainder of the organ. I was tired initially but no other side effects. That was done at the end of May. I will have follow up in July. Again, markers are all over the place. I was offered a break from chemo but decided I will have the chemo at a reduced dose until I see the scans. If everything looks good and markers continue to drop, I will take another break from chemo.

As everyone in this blog has suggested, if at all possible, go to a pancreatic cancer center like MSK, MD Anderson, Mayo, John Hopkins. Anywhere else just gives “standard” care and unless you bring up options on your own that’s all you will get. I’m fortunate that my oncologist at the comprehensive cancer center is willing to collaborate with MSK. I live in Ohio and went to 3 different oncologists here before I found the one in PGH who thinks outside the box and will collaborate with MSK. I have to snail mail everything between doctors which is crazy in this day and age but it’s been worth it. If MSK was closer I would definitely do everything there. I’m fortunate that my health allows me to be able to make the one hour flight for treatments outside of chemo.

I appreciate both comments. I also had y90 to my liver and it worked extremely well.
I have decided to screen for clinical trial this week of RM drugs designed to target KRAS G12D specifically, as well as a pan KRAS drug being combined with it. If the screening is successful I will delay SBRT in lieu of seeing how this combination of drugs will work. Also I will hope this break from chemo gives my body time to get my blood work back in balance for the time I go back on chemo if this doesn’t work.
I am so so grateful that research continues to be funded to find new resources for us all.

My greatest concern is whether to “use the radiation card now” or hold off as long as possible in lieu of trying a clinical trial. While SBRT is a targeted approach, I’m concerned that is yet another “wack a mole” approach vs systemic.
But perhaps that is what buys us all time!

Hello gamaryanne,
I love your metaphor of trying to beat tumors as “whack a mole”! It really makes me laugh. I go to UCLA and have asked about these different types of radiation and have been told they stay away from them. I’ve been on GAC for 5 months now since I progressed to Stage 4 in late October of last year. I was Stage 2 beginning exactly year before that and then had surgery and then F5 chemotherapy. My numbers (CA19-9) decreased from 3890 down to 17, but now slightly climbing back up to 19 this week. I’ll have a CT on Monday to verify if that recent increase is related to any tumor increase. after removing a large part of pancreas, it was determined I had the ATM, KRAS12D,TP53 mutations. Not a great bunch! The GAC is working well with the exception that it’s creating havoc with my underlying cardiac arrhythmias. If cardiologist can’t find a cure for it I’m afraid they might have lower my dose. This might make me look at my clinical trial that I’ve mentioned in a few posts (CLD18.2). I recall you’ve mentioned a strong element of faith in more than one of your posts. Even the CLD18.2 doesn’t buy much more time than just a paltry amount of months. It’s difficult to accept for me as I have so much more living I want to do. But you never know, we could be the few 1 or 2 lucky ones in the trials with the right systems where clinical trials are the cure. For myself, I’m keeping the faith with prayer and going to mass that God will give me the wisdom to decide when to cross that juncture, and I will be praying the same for you!

I’m not sure why some doctors do not go with radiation and others do but my impression from MSK is that even though I had Y90 and high dose radiation, I can have either repeated if needed. Obviously chemo is more systemic for stage 4 but after 2 years of dealing with chemo, the breaks the radiation treatments give me helps me physically and emotionally.

@mnewland99
A doctor at Cedars Sinai liver and pancreas center first brought to me the idea of the RM9805 trial. Specifically targeting KRAS G12D I have that and TP53. Measurable data for this trial so far is positive. Now they are adding a pan KRAS therapy to it. My TM has risen to 147 so I believe the GEM is not enough. In lieu of adding abraxane back in or staying with GEM and doing SBRT I am going with the RM trial. I will be surveilled closely and can stop it at any time. I hope it will give me a systemic push. I have weighed my 3 options at this juncture a million ways and prayed about my next steps. This one gave me peace. So I will take this road and see where it leads. Meanwhile, I will hold the radiation card in my pocket.
BTW, You may find FB site KRAS Kickers an interesting group.
Stay well!! Stay engaged!! Yes, we all have a lot more to do and a lot more life to live!

I’m glad you got into the clinical trial; are you getting it at Cedar’s? I wish you well and God’s speed with a cure.