Running Out of Options!

Do you have to wait for your digestive problems to clear up before starting gem/abrax? If your problems are even partly caused by the cancer/ascites, then chemo might help.

I had a horrible episode of ascites this summer and could barely eat, just because all the fluid was crowding out my stomach. I went on a chemo regimen that greatly reduced the ascites (although had little effect on the cancer). That allowed me to eat and greatly improved my quality of life.

Yes, I am hoping chemo can start next week and that it will help!

I’m truly sorry to hear about everything you’ve been going through. It sounds incredibly tough, and I want you to know that you’re in my thoughts and prayers.

Have you had a chance to get some exercise? I know it can be really challenging, but sometimes even a little movement can help boost your energy and ease some of the pain while you’re going through chemo.

I can’t pretend to know exactly what you’re experiencing.

Have you called pancan to see about clinical trials?

It might open up some new options for you.

Please remember to keep hope close to your heart. You’re not alone in this.

@azsunshine7 I have done my best at getting exercise but it's a balance. If you look at my original linked post you will see I was a very heavy exerciser most of my life so the current situation is very foreign to me. I also have been in contact regularly with Pancan but no new options there recently,

@wpprescott

You are doing amazing! Keep using your secret weapon!

One of the patients I am mentoring with peritoneal carcinomatosis was suggested she do Gemzar /Abraxane after doing 21 cycles of Folfirinox and was no longer effective. I suggested the patient inquire about doing the triplet Gemzar/Abraxane /cis-platin. Yesterday I talked with the patient and they sent me an image of the CA19-9. While on Folfirinox, a low of around 145 had been achieved after starting at over 4K. When it began gradually rising and reaching 1,242on 11/19, he switch to G/A/cis. The recent measurement on12/22 is 352 U/ml after 2 sessions in a one month period. I know of another patient that had excellent results with the triplet.

It is hard to find surgical oncologists willing to do HIPEC or PIPEC on pancreatic cancer patients because of mixed results. Only a handful do it. It is an option I would pursue as in treating pancreatic cancer, one needs to think outside the box doing standard of care gives standard results and we know what that gives. With my own treatment for stage IV metastatic to the liver 13.5 years ago, I knew it would take some thinking outside the box in order to try for achieving a better outcome. I advocated for more aggressive treatment and it was successful. One must be there own advocate and be respectful in being assertive in getting one’s points on treatment made known.

@stageivsurvivor
I'm wondering if 352 is due to just the peritoneal cancer? If also includes say liver or lungs, then there are other modalities (eg histotripsy or MRIdean radiation) that could be used to bring down those numbers). I'm also curious why cisplatin was used? What mutation are you dealing with?
I also received peritoneal carcinomatosis in April this year along with lesions on my liver (2-3). I treated the lesions with histotripsy which brought down my CA19-9. Of 13,800 to almost 440. I then went back on Gemzar-abraxane (no cisplatin) at a very aggressive schedule of 3 weeks on and 1 week off which brought my CA19-9 back 60. I started this regimen in early August. I'm on a month pause from chemo starting today as the aggressive schedule (I wanted it) caused a severe inflammatory reaction (by gemzar) to the bladder snd abdominal area (unless it's bladder cancer as the lab results are still out on that after about 3 months of just testing!!!!). The abraxane also caused just harsh neuropathy that I almost lost the ability to walk and all feelings in my fingers ( I wore the iced booties snd mittens). Try to knock down that CA19-9 related to the peritoneal as best as possible. I didn't do cisplatin this year (I did it last year up until September) as the triplet made that regimen much more difficult to tolerate. Yes, and true local drs refrain from HIPEC.

As an aside, might cisplatin be most favorable for those with BRCA?

@stageivsurvivor @mnewland99 @gamaryanne Thanks for all your advice and wisdom. Truly appreciated. Hope you enjoy the day and Holidays.

@wpprescott
Of course. May we all make at least 2026 together and in good health!!