Joy, you were especially in my prayers last night because although I had not read your post yet, I felt something might be troubling you.
I can't comment on the stomach symptoms or liver swelling; other than that was what got me dx with liver mets...but I guess one takeaway from that is that stomach symptoms can certainly be caused by what's going on in your liver.
Eric and others beat me to the punch on one of my thoughts - that being have you had your er/pr/her2 levels tested again? I know biopsies are no fun, but...
I also have a few other thoughts I will try to shake out of my head.
IP6 - I think this IS inositol - so I'm not sure I understand Rich's question on that, maybe he can clarify.
On your tykerb/herceptin combo, remember that neither of these are cytotoxic - that's why they are usually used in combination with chemos. Maybe it's just not enough without the extra punch of chemo.
You've received a lot of exotic ideas, and I know you have a great oncologist who has been creative on your behalf in the past. A new option will present itself.
Seems to me you are dealing with at least a couple issues (in addition to all the normal stuff of life which for you always astounds me anyway!). You of course need to regain control over the cancer, but as you and your team consider options you also need to do what you can to maintain your liver and overall health.
If you can do any of the above it will lift your spirits but I suspect your spirit will have pulled itself up soon anyway because that's what YOUR spirit does. And of course we have all lifted you up in prayer as well.
I have 2 suggestions.
First, I notice your list of supplements is too short! I suggest you add Olive leaf to your list. I did a lot of research before going on the DM1 trial and found this study showing evidence that this might help reverse resistance to Herceptin. Here's a link to the study.
http://www.ncbi.nlm.nih.gov/pubmed/17490486
My other suggestion is my now famous liver detox juice fast. It's famous at UCSF because the NP's actually recommend this (with the appropriate disclaimers of "there's no proof bla bla bla") to help manage the elevated liver enzymes from DM1. I'm trying to attach that below.
Both of these things should be firmly in the column of "can't hurt, might help", but of course you want to let your onc know what you are doing.
Joy, holding you in my heart and praying for that next window to open wide for you.
Much love
Chris
7 day Liver cleansing juice fast
Main factors, must take daily:
when I am absolutely religious on the beet juice and carrot salad, I do well. For me, these 2 are the most important.
Beet juice (you have to juice it yourself) 3 oz/day, you can gradually increase this but I pretty much stay with the 3 oz.
Carrot salad Grind up carrots to a PULP. For each cup, add a dressing of 1T each lemon juice and good olive oil. You can use more, but not less. You can also add raisins, pineapple, or whatever to make it more interesting. I eat this with slivered almonds and it is really really good. You have to eat 1 cup daily.
Green juice Again, this is from a juicing book and frankly who has that kind of time! You’re supposed to have 1 cup daily, made from celery, greens, cucumber, whatever. You can also get green powder and make green juice from that.
Green broth 1-2 C/day This is also pretty tasty! Made from 1-2 cups each celery, zucchini, and green beans cook these until just barely softened in just enough water to cover. Then puree in a blender – it should be fairly thick. Add 1-2T fresh parsley and 1T butter and season to taste – with whatever you want! I sometimes toss a garlic clove in when cooking the veggies, and sometimes a bunch of artichokes which are also healthy for the liver.
Drink at least 8 glasses of water of course…
Supplement with some milk thistle
All of this is in addition to your NORMAL diet of varied juices ha ha – remember this is from a juicing book.
This is a 7 day fast but I am on it pretty much perpetually (at least the beet juice/carrot salad part) with no ill effects. My LFT’s rat me out when I don’t do it. One word of warning, after a day or so your digestive tract might start producing…evidence…that you are eating a lot of bright red and orange things. So don’t freak out!