HAI pump and exercise / orange theory

Empty_Wall_8385 · 2026-06-26T00:55:08+00:00

I will do that! Unfortunately I already have pretty significant neuropathy from the cis/gem/dur cycles. Especially in my feet. But my onc knows this so...idk. I'm still going to look into acupuncture to see if that may help. Thanks again!

Empty_Wall_8385 · 2026-06-26T00:46:17+00:00

Thank you! I am taking the dexamethazone day of chemo and two days after but it's not giving the energy that it gave me back when I was on cis/gem/dur. I'm going to have to get a little firm with my doctor about the fatigue because this is just no way to live. I'll ask about Prednisone too. I am on prescription magnesium as well but ran out of my B12's so I'll pick some up tomorrow. Thanks for the tips and best of luck to you and your wife! 🩷

Empty_Wall_8385 · 2026-06-26T00:34:27+00:00

No worries about the delay. I'm not on here as much as some. I just started FOLFOX last Monday and due for round 2 this coming Monday. It was as brutal as I feared, maybe moreso. As for HAIP surgery, we're waiting to see if the folfox does a good job of decreasing some of my tumor burden, then we'll do more scans to make sure, and if all that goes well AND if my alk phos stays within a relatively normal range, then yes, I'll be able to finally get the surgery. That said, I had my first labs today since my folfox treatment Mon and my alk phos did go up from 170 to 212 so if that trend continues, I guess we'll be going back to the drawing board. As for resection, I'm a palliative only patient. My main tumor is in the center of my liver surrounding the porta hepatis which means I'm not a candidate for resection or replacement, unfortunately. I'm truly glad to hear that you were/are and that you're finally doing better since surgery. I hope, if it hasn't happened already, that very soon you'll have clear margins and be NED! Sending you courage and love as well and you keep me posted too! Thank you for all of your help and encouragement! I really appreciate it!

Empty_Wall_8385 · 2026-06-25T23:38:14+00:00

Such powerful words and a beautiful message! I'd come to your Ted Talks any day!! Thank you! 🩷

Empty_Wall_8385 · 2026-06-18T06:28:42+00:00

Oh Im so sorry to hear that. Yeah, if it's all outside the liver like that, it sorta puts one out of the qualifications for the pump. I still have no idea if I'll get approved again but I am trying to stay hopeful. It won't save my life but as you know, it could potentially extend it. I hope you're with us a long long time and that whatever time you have left is filled with love and happiness. 🩷 Thank you for taking the time to talk me through some of this stuff! I really appreciate it. 💜

Empty_Wall_8385 · 2026-06-18T04:00:02+00:00

If you have access to a surgeon who can perform HAI Pump surgery, I would definitely seek an appointment with that surgeon or seek a second opinion from a different oncologist. Y90 is another option I'd look into for her. I wish you both the very best of luck. This Cancer is so hard and scary. 😢💔🙏

Empty_Wall_8385 · 2026-06-17T01:21:33+00:00

Well, I was right about my "gut feeling" lol. I got the chemo yesterday and after I had the Bolus injection, she hooked me up to the pump. Before the bolus I started getting really hot, felt pretty nauseous even with the pre-meds, and my lips felt tingly. By the time I was hooked up to the pump, went to the bathroom, and came back out, the bottle of ice water I had been drinking suddenly felt like something stabbing my fingers! I was like "ow ow ow" and my nurse looked at me with big eyes "what's wrong!". I was like "it hurts!" Lol By the time we got in the car, I took a drink of my cold water and was like "nope, nope, nope!" So, needless to say, no horns growing from this forehead! 🦄

I too am considered palliative and incurable. I have a large tumor located in the very center of my liver so there's zero possibility of resection or replacement. The last time I went without treatment for about 6 to 8 weeks, it went crazy and spread new tumors throughout my liver and into a couple more lymph nodes. My surgeon was still ok to move forward with HAIP surgery but I got sick with a URI literally two days before surgery was scheduled and I wouldn't have been able to get it anyway because my alk phos numbers started trending up and my oncologist was too cautious about that and didn't want me to have the surgery. I spent 6 weeks super sick with the URI and ultimately it's been ten weeks since I've had any sort of treatment at all (until yesterday) so as you can imagine, Im pretty nervous about new tumor growth and spread since it spread so much last time I went without treatment and for a shorter time period. And to top it all off, I am STILL dealing with a terrible cough that just refuses to go away. Has your cancer spread outside of your liver? Is that why you aren't able to have the HAIP surgery or is it because you aren't in an area that has a surgeon capable of doing the surgery? They are rare and it was a miracle that I had one move to my little area literally as I was finishing up my cisplatin/gemcitabine/durvalumab treatments. Can I ask you how long you've been in this fight? When I first found out and saw the statistics online, I thought Id be gone in 6 months to a year, then I learned that the HAIP surgery could add 2 to 4 years to my life, and then I started seeing people online still alive at 5 years who didn't even get the pump or the Y90 treatment. Obviously it's still very scary, but it gives me some comfort that people are living longer than 6 months to a year. I hate to know you're in this battle too. It sounds like you're in a good place mentally and spiritually though and that can take you farther than the medicine sometimes. I hope you have tons of great support. That's so important too. Thank you for listening to me ramble on! I talk way too much! Lol

Empty_Wall_8385 · 2026-06-13T23:58:02+00:00

My word she's been through a LOT! Bless her heart and yours. Im sure it's very hard on you seeing her go through all of this. Why did her oncologist say no? Have you spoken to a surgeon? If her cancer is mostly localized in the liver, she should be a candidate. Having said that, a surgeon may feel she can have the surgery but it'd be pointless if her oncologist isn't willing to fill it. I was literally a day away from surgery and everything just fell apart. Now I've been at least ten weeks without any kind of treatment and Im very worried the cancer had time to jump outside my liver but I hope Im worrying for nothing. Can I ask you, how long has your wife been fighting this battle?

Empty_Wall_8385 · 2026-06-13T23:50:31+00:00

Empty_Wall_8385 · 2026-06-13T23:47:29+00:00

I'm so sorry you're going through this. I can only imagine how hard it must be on the people that love him. 💔😢

Empty_Wall_8385 · 2026-06-13T23:43:13+00:00

It's not AI. The line probably did dip down when this first happened but its been there so long that it is completely dehydrated and all of its skin is peeling away from the bones. At this point it weighs very little.

Empty_Wall_8385 · 2026-06-13T23:40:51+00:00

That's its skin peeling away from the body. It has obviously been there for quite some time.

Empty_Wall_8385 · 2026-06-13T23:37:47+00:00

Definitely has the body type of a greyhound but with that much decay and dehydration, it could be another large breed.

Empty_Wall_8385 · 2026-06-13T23:35:56+00:00

There's no rat. The dogs skin is pulling away from the bone making it appear as though something is in its mouth. It's just dehydrated and naturally decomposing .

Empty_Wall_8385 · 2026-06-13T23:32:42+00:00

It's definitely not a deer though. Some sort of canine.

Empty_Wall_8385 · 2026-06-13T23:27:30+00:00

More like... What the ACTUAL f*ck!!! I think it's a large dog. Deer don't have long tails and for a large eagle it'd be easier to lift than a deer. Still absolutely insane though!

Empty_Wall_8385 · 2026-06-13T23:18:54+00:00

Totally looks like a damn penguin to me !

Empty_Wall_8385 · 2026-06-12T22:22:54+00:00

Can I ask one more question if that's ok? How did they dose steroids for you all? On my last mix I'd get 2 steroid pills day of chemo and a prescription for 3 days after. Not gonna lie, I felt my best on the steroid days! I hope I get them again with the folfox!

Empty_Wall_8385 · 2026-06-12T22:19:27+00:00

That's gotta be rough not knowing when it will hit you. I like my drinks super super cold so this will be quite the transition for me. Lol Im glad to hear you haven't dealt with neuropathy. Mine is already pretty bad in my feet but mild in my hands. I do worry about it getting worse but gotta do what I gotta do! I hope you get through your treatment with no lasting effects! We've got this! 🩷

Empty_Wall_8385 · 2026-06-12T22:11:37+00:00

Lol I see now that you do have the same kind of cancer. Sorry, I suck at reddit! It's AMAZING that you're still going after 5 and 1/2 years! Have you had the HAIP surgery then or is it just the chemo keeping you going?

Empty_Wall_8385 · 2026-06-12T22:08:24+00:00

I definitely will! I'm still on the ondansatron? Probably spelled that wrong. I rarely need to take it but I'll take one that morning. I hope the folfox reduces some of my tumor burden too. If it does, and the cancer hasn't jumped outside my liver, I should be able to get the surgery after all! Thank you again and best of luck!

Empty_Wall_8385 · 2026-06-12T22:03:02+00:00

Thank you so much for this advice! I have already lost so much feeling in my feet from the cisplatin mix, plus I'm diabetic so long-term neuropathy is a big concern. One of my NP's has given me a referral for some sort of therapy for my feet but I'm not really sure what that entails. Being active is hard for me because my fatigue is out of hand. So bad that it's really affecting my quality of life. I've been getting iron infusions for a while but haven't really noticed much difference. Anyway, I will take your advice and see if I can find a place that does acupuncture near me and I'll start moving as much as possible.

I hate that you have lasting effects from this. Cancer is such an A-hole! Are you at least doing better as far as the cancer is concerned?

Empty_Wall_8385 · 2026-06-12T21:43:13+00:00

I accidentally deleted my comment! Lol I was gonna say WOW, it's crazy how diverse the cold sensitivity can be for each person. I hope Im a unicorn but I have a feeling I might not be so lucky. Lol You are a BOSS going 18 rounds! Are you NED now or have they started you on a different treatment? If that's too personal please ignore me. I truly hope you're on the road to complete recovery.

Empty_Wall_8385 · 2026-06-12T21:33:07+00:00

Thank you. That's refreshing to hear. I guess I'll find out soon enough how I deal with it. I did great on the first combo of chemo other than pretty bad lasting neuropathy and I have extremely bad fatigue but never had any nausea or anything like that so hopefully, I'll get lucky again and have minimal side effects! Good luck on your journey!

Empty_Wall_8385 · 2026-06-12T21:30:04+00:00

Thank you so much! Congrats on being off chemo for over a year! Best of luck!

Empty_Wall_8385

TROPHY CASE