Back to reality - and HIPEC question

[Kathryn in MN]

I haven't been very active on the board most of the winter. I spent a lot of it in Mexico, living in denial that I have a life-threatening disease - out living life, and living large! But the time has come to return to "cancer life" and face reality. I got my labs and scan results back. Nothing surprising, but it sucks just the same. I've had a lot of spread and tumors are larger than I've had in the past, plus I have pleural effusion and ascites. Ascites is usually very end stage. But I'm going to push to get the fluid biopsied to confirm that it is malignant, and then I'm going to send my records to a HIPEC surgeon and explore that possibility.

Has anyone who had HIPEC done had multiple lymph node mets along with peritoneal disease? I'm wondering if they would still take me and removed the nodes and any cancer they can see, and do HIPEC? Or would my multiple node mets disqualify me? I do have a little activity with bone mets too, but I don't think that should disqualify me. They are stable and improved over last fall.

http://www.caringbridge.org/visit/kathrynblume/journal

[gep]

Don't know the answer to your questions but just wanted you to know that I'm thinking of you.
Gloria

[SkiFletch]

With someone with your history Kathryn, it's almost entirely gray area. My personal guess is that you'd be somewhere less than 50/50 for acceptance for HIPEC, but how much less is entirely impossible for anyone other than a HIPEC surgeon to say. My best advice would be that if it is something you want to pursue (and you have to travel regardless), to get opinions from multiple HIPEC surgeons. Do remember, much as you hate chemo, the surgery is MAJOR and a huge risk, especially later on in the journey as you are. If you do find a willing doc, make sure you're ready for the risk.

[ams5796]

Kathryn,

I've always been very inspired by you and the way you live your life. Just want you know that you're in my thoughts and I'm wishing you the very best.


Ann

[Rob in PA]

Keep hitting it with all you got. I've no hipec experience, but you've certainly been an inspiration to me.
Rob

[kiwiinoz]

Kathyn
Not a positive situation you are in and I'd be asking everyone I could for further options for as long as I could.
I think that they way you have approached this disease has been a good example for us all as you face it with strength tinged with a good dose of reality.
I am trying to approach the future in the same manner, and when I was trying to get my head around my diagnosis I looked at how you handled things and have tried to emulate that.
Kiwi

[Asterix]

Sorry to hear your latest results Kathryn. Thinking of you.

[BrownBagger]

All my best wishes to you, Kathryn, my friend, in whatever route you take. I remain inspired by your recent video and uplifted by your experience with advanced ablation techniques.

And, I must say that Mexico was a much better place to spend this past winter, in every respect I can think of, than Minneapolis.

[concernedrelative]

Kathryn-- We're terribly disappointed to hear of this setback. My family's prayers are with you. Hoping for better days ahead. Concerned Relative

[juliej]

Kathryn, I can picture you as a bandito hiding out in Mexico! I'm sorry to hear the cancer found you again. I don't know anything about HIPEC, but I'm hoping (and praying) the fluid in your abdomen is benign. Let us know what you find out.

[Maia]

Sorry to hear this, Kathryn. And I have not input to offer about HIPEC. Just remember what was posted here Xilonix (MABp1) -on trial, and read the comments also --maybe cachexia wouldn't be a requisite.
I'll be sending my best thoughts those ascites are just benign ones!
As Rob said -keep hitting it with all you got, you're great at doing it! (((hug)))

[Kathryn in MN]

I wanted to be prepared to discuss all options with my oncologist tomorrow, so I just spoke with a HIPEC surgeon from Iowa. He said that my situation is different because I am further into the journey having already had a resection, a lot of systemic chemo, radiation and RFA, rather than newly dx'd like most people considering HIPEC. He was concerned that my bone marrow and blood counts might not be optimum after almost 4 years of treatments which could make tolerating the surgery and recovery very hard. I think if I have enough break between chemo and surgery I would do fine. My blood work is really good when I'm not on chemo. Well controlled metastasis in liver, lungs, bones or lymph nodes would not disqualify me automatically - he's done several cytoreductions and HIPECs for patients that had a limited amount of other active tumors in organs or nodes. That was my biggest concern, so it was a relief to hear that other metastasis wouldn't disqualify me.

He seemed hopeful that I would qualify but said there is no way at all to say much over the phone without having my records. His take was that if you can handle it, for peritoneal involvement, the cytoreduction and HIPEC used in conjunction with systemic chemo is the best way to manage the disease long term. And that is what I am looking for. If this fluid is malignant, and I don't do something radical, I know what my chances are for long term - and I don't like them as well as my plan to try to stick around several more years.

First step for me is to ask for the fluid to be biopsied. If it is malignant then I'd need to send all of my records (especially concerned with radiation records) to a HIPEC surgeon and take it from there. I would likely need exploratory laproscopic surgery just to check things out to be positive of what we are dealing with. Peritoneal involvement doesn't really show up much on scans. He also recommended that if my oncologist offers systemic chemo right now, to start it. Then take a break before surgery if I qualified. At least I feel more prepared to go into my oncology appointment tomorrow and discuss the options.

I'm still chuckling about contacting physicians in Iowa for the complicated stuff the last year! I live in MN which is supposed to be one of the greatest health care systems with the U of MN and Mayo Clinic. But I went to Iowa for STAR Ablation and now I'm checking into Iowa for HIPEC. Not sure if I'd go with this guy in Iowa - more research is needed on him first. I may go to one coast or the other for one of the top guys I've had recommended to me. But it sure would be nice to stay closer to home and would be easier for my family - my parents live in the Des Moines area, and it is only 3 1/2 hours away from home for us.

I imagine the next week is going to involve a little more testing and some big decisions, but will ultimately mean going back on chemo within a week or two at most - either next Friday or the following one. I sure did enjoy my time of not worrying about medical appointments or tests. But it is a necessary evil in my case - time to load them all up again!

[Hapa]

keeping my fingers crossed that the fluid comes out clean! If not, sounds like you will have some other options. Really glad to read that.

[CRguy]

Kathryn,

Sending huge POSI ++++++ Vibes your way today, for you and your doc to get a good plan for the next stage of the Journey.

Prayers, Harmony and best wishes
CRguy

[tchan8888]

Kathryn,

I hope that all goes well and I appreciate your warrior mentality. I am an Olymphian (Stage IV, lymph node mets only at this point, none in organs) and have responded well to Folfiri. Am expecting to get a chemo break in July when 12 treatments completed. My oncologist expects to see NED in the CT scan at that point. In your journey, how long were your chemo breaks?

I am trying to get a sense of what I can expect. Am having a very difficult time with the constant uncertainty and inability to plan for the future, as such. Your advice would be greatly appreciated.

Thank you.

Tom