Stage IV Adenosquamous pancreatic ca: finished SBRT, what's next?

Hi Dale,
Your post sounds so full of energy. How delightful to hear! My case is somewhat similar to yours without knowing what your mutations are. Also, I had the distal and not the whipple. Interesting you had some bad side effects with the MRIdean radiation treatment. I had 3 sessions for a stubborn 0.9cm lesion on my liver. I say stubborn because even with my GA therapy which brought it from 1.7cm to 0.9cm, it just wouldn’t shrink any further. My next Mission (not impossible) was to kill it. My radiation specialist recommended I stay on the GA chemo while receiving my 3 radiation treatments; I don’t see this dr recommended path very often, but it seems like a good idea to me. As far as post saying that the treatment works for 6 months I would like to clarify that it is hoped that the radiation can be active inside your body for 6 months, but the ultimate hope is that it killed the cancer. It’s been 5 months since I had my MRIdean treatments, and my dr does think that it killed the cancer; but of course only time will tell.
As far as baldness, it was harder than I thought it would be for me. My husband always said my eyebrows looked like Brook Shields and he loved my thick, wavy hair - and actually I used to hate when he said that because I wanted thin, straight hair. Well I miss those days a lot. Because of my good status now, my oncologist took me off the abraxane and I’m only on Gemzar. My hair is very slowly growing back!! Depression is understandable, on the other hand sometimes I would go without my knitted cap as a badge of honor; I’m fighting cancer and I’m still here! For special occasions, I would go to Macys and have them draw in my eyebrows and I would wear those magnetic false eyelashes. Wishing you a blessed road ahead Dale!

Hi @mnewland99, thank you so much for your reply! Very encouraging and that is so helpful. I think the side effects are from the belly tumour where they did use SBRT but not MRI - they targeted the tumour with a CT machine. And it's so close to my skin, it did look a bit burned. It continues to hurt but controllable with tylenol. Diarrhea has subsided thank God!

I've decided I'm going to jump back into Gemcitabene/Abraxane, and see what my CA19-9 does and what the CT scans show in a couple of months. Like you I am hoping that the radiation killed my metastases, I sure hope yours are done and done!

PS: Thanks for the tip about magnetic eyelashes, I am going to give them a try for special occasions. I'm using Benefit eyebrow pens to paint on my eyebrows, they work pretty well!

And, it's been 5 weeks since my last chemo, and indeed my hair HAS started growing again! I have a very very short brushcut - and it's pretty much all white so not exactly lovely, but I can dream of having hair again. So I am going to try the Paxman cold cap when I go back into chemo in 2 weeks, and see if I can stand it, and see if it actually lets my hair continue to grow. Glad to hear that yours is growing back, it's all about hope isn't it??!!

Anyway thank you so much @mnewland99, I find all your posts very inspiring.

The burning of skin sounds unusual. How many treatments did you receive? The pain around my liver just went away, finally so I’m thinking radiation in my body is gone now. I’ll see how my numbers go after my next session or in 2 weeks. 3 months after my treatment, my new oncologist gave me the Gaurdant testing and then retested my biopsy liver tissue from 2023 as he said there were new technologies that might find mutations that they couldn’t find before. However, all testing came back negative. We’ll see and I guess the best thing I can do is to try and eat right and exercise and TRY to avoid stress. I’m praying for the best for you and all of us.

Hi Marie! I had 5 treatments each on my liver lesions and my belly tumor. Radiation was just completed March 7th. The subcutaneous belly tumor was so close to my skin, the bit of burning wasn't surprising. I never felt any pain from my liver lesions, but still have some pain at my belly tumor. My main mutations are KRAS G12.V, and ARID1A. Thank you for your prayers and encouragement, all the same to you!

I recently had 5 rounds of SBRT on a small lung module. On the day of the last radiation, I also started 4 rounds of chemo to hopefully shrink a new tumor in my liver. Directed radiation is proposed for that area, GIVEN with have a little shrinkage. Did you have any side effects from the liver directed radiation? Extreme fatigue?
Trying to figure out if I’m feeling chemo or after effects of radiation!

I asked my oncologist why most drs don’t keep their patients on chemo while doing SBRT and he replied that most drs think it would be too much on them physically so they just limit them to the radiation. I was tolerating chemo pretty well, so the radiation oncologist kept me on both, and possibly because I was only getting 3 treatments. I did a feel a bit weaker after the treatments, but it wasn’t anything extraordinary, also we were radiating a 0.9cm so my guess is that might be a shortened time to radiation exposure given the small size of the lesion. About 8 weeks following the procedure and a liver biopsy following the SBRT, I had severe pain in the area of the liver/biopsy area. The biopsy was negative btw (it had been positive in December 2023). It turned out to be inflammation which I experienced decreased pain every few weeks until last week where I almost have no pain in that area now. Actually Alleve works well for that pain, though it’s not to be used too often as it goes through the liver. The side effects of radiation are only temporary I believe. Are you no longer in your trial? Did they do a biopsy of n the nodule in your lung?
I’ll be praying for you for a speedy and full recovery.

Hi @gamaryanne! My radiation oncologist said that Gemcitabene interacts with radiation. He's also giving me at least 2 weeks after radiation before I restart chemo, to give my body a break. I had directed radiation to my liver lesions, and also to a subcutaneous tumor on my belly. The belly site was painful before the radiation, and continues to be painful now. I was on double doses of Tylenol, but that gave me horrible night sweats. My doctor prescribed 1 ml hydromorphone which I've just started, plus anti-constipation meds. I have been weak, due to chemo-induced anemia, and the radiation also knocked the energy out of me. Gotta keep doing these treatments and hopefully recover to get some strength back! Golf season approacheth! (Although still 18 inches of snow in my backyard 😂!). Thanks all!