Histotripsy: My experience

Yes, there seems to be a handful of us who regularly post on this board that seem to be on the same track. One thing to offer is that these 2 modalities are not exclusive, in fact many of the general clinical trials I see these days pair a chemo with the trial drug or vice versa. The IR Dr. said to continue chemo alongside the histotripsy (which is 1 treatment day). I had my Naliri 3 days after histotripsy which was great because the steroid they give with the chemo brought down the inflammation from the procedure on my liver. I pray the your health care providers steer you in the right direction! I'll let you know how I treat my peritoneal nodules. Did you have the distal or Whipple or did you have surgery? It's great that you can play golf still!

I have some good news to report! It's been 2.5 weeks since my histotripsy. My CA19-9 has gone down from 13,900 to 4,840. It's possible that it could down even more. My follow up appointment is in 10 days. I'm also scheduled for a CT. It should be noted that I also have several peritoneal nodules which are a contributing factor to the CA19-9 count. I just started an aggressive chemo regimen of gem-abraxane yesterday of 3 weeks on and 1 week off to address the nodules. The CA19-9 is taken before I start my chemo session.

Oh my gosh this is such good news @mnewland99 !

Maybe we shouldn’t be getting our CA19-9 every two weeks and should give it time to settle. Mine is rising on Naliri as I patiently(#%!) wait for SBRT.
My question to you-is will histotripsy procedure be denied for any precious treatments? IE too much chemo, precious surgeries, etc? It seems it would not since it doesn’t affect us systemically?
So excited for you. This is good news. Now let’s see if this major gem/abraxane attack does its work.
Meanwhile, we have to find ways to pump up our immune systems to handle some of this battle!

Prayers and joy for you. One step in front of the other!!

Hi there! I had the modified Whipple, kept my stomach intact. Praying for you too!
❤️

It's been about 6 weeks since my histotripsy. I read and dr confirmed that it's effects can last up to 2 months as far as destroying liver lesions it worked on. I'm also on abraxane-gem chemo and my regimen is 3 weeks on and 1 week off and I just completed this and am continuing with this aggressive schedule. I did lose most of my hair before I got a chance to decide whether I wanted to try the skull cap which prevents hair loss in about half the patients who try it. I am using the iced booties and mittens to avoid neuropathy to hands and feet. I don't sugarcoat anything if you read my posts or comments. I already had a bit of leftover neuropathy in bottom of my foot from my gem-abraxane treatment which ended in early Jan. 2024. Even with the booties and mittens I did incur a little more neuropathy in that same right foot, but nothing too significant. My current oncologist said the theory behind the iced booties is that it is supposed to freeze the nerves in those locations so that they are not affected by the chemo. It occurred to me after 2 treatments that it's better to put the booties on about 10 minutes before they actually start infusing the abraxane so that your nerves are already frozen and I THINK this has helped as the neuropathy is no more for the worse.
I hadn't had my CA19-9 taken for the last 3 weeks until today. 6 weeks ago my ca19-9 was 13,900. And I had 3 lesions in my liver and 3 1.0-1.5 cm peritoneal nodules across my abdomen like a belt. I also had several other peritoneal nodules too small to measure. I've had a CT and MRI within the last 6 days. No mention of any SIGNIFICANT sized nodules. Today, my ca 19-9 result is 450!! A scary number to the average pancreatic cancer patient, but a miracle number to my family, my friends, and myself!! It's down from almost 14,000 just 6 weeks ago. Histotripsy and the abraxane-gem regimen works. My OPINION is that abraxane works on peritoneal nodules. I recommend histotripsy as a potential alternative to radiation to liver lesions, or at least it's another tool to put in your arsenal bag!!

It's been about 6 weeks since my histotripsy. I read and dr confirmed that it's effects can last up to 2 months as far as destroying liver lesions it worked on. I'm also on abraxane-gem chemo and my regimen is 3 weeks on and 1 week off and I just completed this and am continuing with this aggressive schedule. I did lose most of my hair before I got a chance to decide whether I wanted to try the skull cap which prevents hair loss in about half the patients who try it. I am using the iced booties and mittens to avoid neuropathy to hands and feet. I don't sugarcoat anything if you read my posts or comments. I already had a bit of leftover neuropathy in bottom of my foot from my gem-abraxane treatment which ended in early Jan. 2024. Even with the booties and mittens I did incur a little more neuropathy in that same right foot, but nothing too significant. My current oncologist said the theory behind the iced booties is that it is supposed to freeze the nerves in those locations so that they are not affected by the chemo. It occurred to me after 2 treatments that it's better to put the booties on about 10 minutes before they actually start infusing the abraxane so that your nerves are already frozen and I THINK this has helped as the neuropathy is no more for the worse.
I hadn't had my CA19-9 taken for the last 3 weeks until today. 6 weeks ago my ca19-9 was 13,900. And I had 3 lesions in my liver and 3 1.0-1.5 cm peritoneal nodules across my abdomen like a belt. I also had several other peritoneal nodules too small to measure. I've had a CT and MRI within the last 6 days. No mention of any SIGNIFICANT sized nodules. Today, my ca 19-9 result is 450!! A scary number to the average pancreatic cancer patient, but a miracle number to my family, my friends, and myself!! It's down from almost 14,000 just 6 weeks ago. Histotripsy and the abraxane-gem regimen works. My OPINION is that abraxane works on peritoneal nodules. I recommend histotripsy as a potential alternative to radiation to liver lesions, or at least it's another tool to put in your arsenal bag!!

Would insurance pay for your histotripsy?

How are you doing @dalegantous?

Hi @mnewland99! I'm not doing too great. The Naliri did nothing for me and I have had progression, several new lesions in my liver and nodules in and around my peritoneum. However I have been accepted into a pan-KRAS clinical trial at Princess Margaret hospital in Toronto, which gives me hope. I am number 2 on the list, I will probably start some time October-November. Until then I am on capecitabene which is a pill form of 5-FU. It is knocking me for a loop, I have lost weight (down to 89 pounds), low appetite, and very tired - sleeping 5 hours during the day plus a good night's sleep. So my hope is for that trial, we'll see what happens.
Did you make it to your 50th reunion Marie?? Was it fun?