Naliri and breathing difficulties

Did you not tell your onco you had breathing issues? Tell him/her and let him give you his views.

I am on it, but did not have lung issues coming into this other than a small lesion in my lower right lung. It was hit with SBRT just prior to starting Naliri .
My greatest side effect from Naliri has been fatigue on days3,4,5 and blood pressure drop. Lots of sleeping. Today is day 6 and I have a full day planned. I will ask others I know about the propensity to exacerbate existing lung issues and their results.

Thank you gamaryanne. I can imagine, being how active you seem to be, that it’s a bit frustrating not to have the energy you’re used to, but at the same time I’ve read your posts how it has decreased your cancer antigen. I’m thankful for that because I’ve been there a few times now; at that crossroads of looking for the next best treatment and hoping that it works. I spoke with my radiation oncologist and he says it’s only small spot in my liver so we are going to try SBRT again. I’m not sure how the chemo will work. I still haven’t heard from my oncologist regarding the breathing side effects. Please keep your positive spirit gamaryanne as it’s an inspiration for all of us!

Hi there and hope your husband is doing well. I wrote to my oncologist about it over the weekend, but haven’t received a response as of yet. I’m going to give the SBRT another shot at the liver again.

Have you gotten any feedback yet on doing histotripsy for the liver? I didn't realize until last weekend that one of the super-early adopters and high-volume practitioners (Dr. Kevin Burns) was near you in Orange County (Mission Viejo).

Thank you, Mark. Yesterday I asked my City of Hope oncologist about histotripsy and he let me know Hope doesn’t have that technology yet, but will be getting it in 2 months. He actually referred me to the dr at Mission that you mentioned. He also said SBRT has a longer, proven track record, but I could consult with Dr. Burns, if I wanted. It looks intriguing, though I haven’t found a lot of info about it, particularly at Mission. However, I did make appt last week with my original oncologist at Hoag since they have the equipment for Histotripsy though I swear she announced at the PanCan walk that Hoag was the only facility in Orange County that had it. It seems like it would be an excellent alternative for patients that have several lesions or tumors in their liver and consequently are not a good candidate for SBRT or SBRT-like radiation. I want more information on it now to have in my back pocket as a further line of treatment.

@mnewland99
Did you have side effects from the SBRT?
I had 5 shots to my lung and at the end I did have crazy amount of fatigue for about two days.

Also considering it for my small liver lesion but it’s near “some things” so not sure. Did you have effects other than fatigue from the liver SBRT?

Hi gamaryanne,
I did have some fatigue, but nothing too extraordinary and some nausea, but nothing extreme. I was also doing chemo, gemzar, at the same time but on the weeks that I didn’t have the radiation. I had 3 treatments. The only reaction I had was inflammation that for 1 day in particular was excruciating and sent me to ER. it was unusual because it occurred in late December or about 10 weeks after my last treatment. Typically, inflammation occurs earlier. Following my most recent PET scan, dr says it did eliminate the liver lesion. I’m set up with appointments to get another SBRT on a liver lesion, but this time I’ll be getting 5 treatments at doses a bit lower. I don’t know if treatment in lungs is different than liver as far as side effects, but tiredness and nausea didn’t last long. I’m praying you’ll be back to your old self again, soon!