esamolytz
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Hi all. Here’s the update I promised after meeting with the surgeon …
We met with the surgeon again yesterday. He plans to proceed with the intent of surgery. I am having an embolization procedure on Friday, 4/10. I will have CT scans on 4/27 and 5/11 to check on the growth of the left liver (it’s at 28% now and he needs it to be at least 30% to feel safe that it will have the volume/capacity to handle my liver function needs after resection). If he doesn’t see the required growth, he won’t be able to proceed with the surgery.
Surgery will take place sometime after 5/24. I am hoping to be able to push it back a bit, at least to 6/9, so I won’t be in the hospital the last week of school (I have boy/girl twins in Kindergarten).
The surgeon (Dr. Reddy) told us more about the procedure. He’ll do a diagnostic laparoscopy to look for disease outside the liver that wasn’t shown on the CT or MRI scans. If he doesn’t see anything, he’ll open me up. Then he’ll look for disease elsewhere again, including in some lymph nodes that are suspicious. He may abort surgery at that time if he sees something he doesn’t like.
If all goes well and he is able to do the resection, I will end up with about 1/3 of my liver remaining. He does not see a need to do any reconstruction of ducts or vessels. I will remain in the hospital for 7-10 days and then recuperate at home for 4-6 weeks.
I am scared that I’ll either not have the growth needed in the left liver or that he’ll open me up and have to abort the surgery. It’s one day at a time until those scans prove growth, then I will just have to wake up from surgery hoping for good news of a resection. Either way, it’s one day at a time.
I’ll keep you all posted on how things progress. Your support and understanding mean a lot.
Love the poem – especially the “subdued” part! Thanks for the positive comments. Every bit helps. I’m still waiting to get my follow-up appointments scheduled … hopefully will have more information to share next week. Meanwhile I’m going to keep those cookies handy, just in case.
I just realized that I should have proofed my post from last night – I typed it on my phone. “I will have to post an update again next week when me know more.” I sounded just like Cookie Monster! … which leads me to recall something that popped up in my Facebook newsfeed recently. It’s a picture of Cookie Monster with this quote: “Today me will live in the moment unless it is unpleasant, in which case me will eat a cookie.”
I ate several cookies yesterday. Today I’m back on the positive train. I am no worse off than when I started this cancer business. Just because the tumor didn’t shrink doesn’t mean there’s not hope. And if Cookie Monster can make me chuckle, so much the better!
Turns out there was no change in the tumor at all. It didn’t grow, so that’s the good news. We will meet again next week with the surgeon to discuss surgery further. That is the direction we are leaning, as it offers better long-term survival than chemo. The surgeon needs to do some volumetric calculations to determine whether to embolize the blood supply to the diseased portion of the liver. I will have to post an update again next week when me know more.
I am also strongly considering asking the doc at Mayo to review today’s scans and offer another opinion.
I will let you know what I learn in the near future.
My husband and I did go to Mayo for a second opinion in January. I’m sorry for omitting that part from my previous posts.
The oncologist at Mayo confirmed what we had been told in Minneapolis – that chemo is the standard treatment for ICC – and said that’s what he would do if he were treating me. He had seen my scans and reviewed the treatment plan for the clinical trial (I had already begun treatment) and said that he thought we should continue with that as it seemed reasonable and offered some hope for a future resection.
The Mayo oncologist also said that it’s difficult to get a liver transplant to treat ICC. I believe it’s because of the high risk of recurrence and lack of available livers. We didn’t talk about a living donor.
We were not expecting any miraculous offers of different treatment. We left it open with Mayo – if the doctors in Minneapolis don’t see the results needed to get me to the operating room and don’t have a treatment plan that they think will be beneficial, we will likely return to Mayo to see what they might offer. The good news is that, unless you’re in a clinical trial at Mayo, the treatment can be “imported” to the hospital in Minneapolis so I don’t have to travel each week for treatment.
I wanted to post an update. I completed my treatment this week – four cycles of gem/cis with low dose radiation under the clinical trial at Abbott Northwestern in Minneapolis. The goal was to shrink my tumor enough to make it resectable. I will have CT and MRI scans on Monday to see how the tumor responded. To recap, the tumor was 12 X 10 x 9 cm on the dome of the liver and had invaded the portal vein. I am hoping to be heading for the OR soon, which is a strange thing to say, but as I’ve read elsewhere this is a group that likes that word. I will post another update when I know more.
I have joined this clinical trial and am starting treatment on Tuesday, 1/13. Thus far, I am the second patient in the trial; the first patient has completed treatment but apparently was not a candidate for surgery.
What kinds of updates might be useful to the group as I progress through the study?
Wheels are in motion for a second opinion at Mayo (I even have a patient number!). However, we don’t want to wait any longer to begin treatment, so we’re forging ahead in Minneapolis. I will still travel to Rochester once we’re able to get that appointment set.
Thanks for the warm welcome everybody. It sucks that we all are here, but I’m glad there’s a community of people who understand.
