The Colon Club

What to do?
Today I saw my HIPEC surgeon who told me have some cancer spots on my small bowel above my illeostomy, most are at the bottom of my pelvis with two under my diaphragm. He has told me that the surgery would mostly not work and the cancer would come back and if I did it, it may or may not buy me some time. As for now I’m doing o.k. Each day I take long acting morphine and work most days and live a somewhat "normal" life. I have terrible neuropathy thanks to chemo i did over a year ago. My surgeon wants me to do more chemo after the surgery (if I have it), which I know, will kill me.
I want to live. I have a six year old with a chronic illness who needs her mother. I just feel like I have no options. I do very poorly on chemo and have nearly died while doing it. Please send me your advice or HIPEC stories. Is there anything out there working to keep pelvic spread at bay?
Cherie

Sorry I have no advice but wanted to say hugs and best wishes

I have no advice but just wanted to wish you the best and send hugs! Sorry you are going through this!

Cherie, I'm so sorry to hear of this spot you are in. Have you checked out any clinical trials?
Hope some hipec'ers chime in.
rob

Cherie, did the surgeon provide any rationale for why he thinks HIPEC wouldn't work for you? Is it because he thinks there's too much cancer? In bad places? If it was me, I'd want more information before making a decision. Did he reference any research on HIPEC outcomes? If HIPEC was potentially my last shot at a cure, I'd expect a very thorough and well-supported explanation for why I shouldn't try it.

Is it possible for you to get a second opinion from a different HIPEC surgeon? Maybe someone in Australia or the States? It strikes me that doctors disagree on this stuff all the time and some surgeons are considerably more aggressive than others. Even if you end up going back to your original doctor for the surgery, it would be good to hear what another provider thinks about your chances for success.

As far as the chemo is concerned, I wonder if you could do a reduced dose along with your IV Vitamin C, since that seems to have really helped you. Either way, I'm sorry you're facing this and good luck with your decision.

Cherie, I would recommend that the word HIPEC be added in your subject line to draw attention to this thread for those that may have had it. People are not spending as much time on here during the summer months.
Other than that I agree w/lpas & Rob. Any doctor worth his/her salt will welcome a second opinion. You may need to search this forum for the top docs in HIPEC recommended here in the States or elsewhere as I have seen on here before, have your surgeon or you send your charts for a phone consult w/you and/or your surgeon if traveling for a procedure such as this is doable for you...AND maybe even if it isn't.

Best Wishes
bitchslapped

Cherie I'm sorry for what you are going through and know that you are in my thoughts and prayers. I feel for you re. chemo - my body did not react to it as well. Peace and love - Kristi

Cherie wrote:...the cancer would come back...Each day I take long acting morphine and work most days and live a somewhat "normal" life...

You need all the immune function you can mount, before and after the operation. It might be possible to still improve several ways there. Things we've found useful: MegaD3 (+ menaquinone-4) at 4-8 min. One of these beta-glucans.
Life Extension discusses replacing opoids with Tramadol for surgery. Is it possible to use a non-opoid pain killer now, since opoids depress immune function? High dose ascorbate interrupts some morphine effects, do you separate the morphine and iv vitamin C time wise (hrs?), or did you go off iv vitamin C ?

my surgeon wants me to do more chemo after the surgery (if I have it), which I know, will kill me.

Maybe, mild Apatone (US FDA approved salvage cancer therapy with menadione, vit K3, we use MK4 instead)+ lowest DPD inhibited dosing of 5FU (e.g. 60-80 mg of tegafur per day, imported from asia/indonesia and recapped for small dosage) +- celecoxib, cimetidine, IV C ???
What do they say about DPD inhibition possibly being the problem, or if it's some other toxic metabolism? e.g. folic acid is bad, natural folate reduces 5FU-LV side effects.

Cherie,

I can't give advice on HIPEC, but if it is at all possible, a second opinion seems to be a good idea. HIPEC opinions seem to vary a lot from surgeon to surgeon so another opinion might be quite different.

Lois