2-stage liver resection -- boo. update at end

[Ashlee H.]

Don't you just hate these roller coaster rides? Just wanted to let you know about my results so far with Stivarga. I was one of those that just wasn't going to go on it..but it was all that was left. My cancer markers seem to double every two weeks. I just completed 2 1/2 weeks on Stivarga and I got my CEA yesterday. Not only did it stop doubling, it went down three points. Now, this might just be a shock and awe response, but I'm encouraged. This has been the easiest (especially gut-wise) chemo I've been on. My voice comes and goes. The worse has been the bottom of my feet - feels like I'm walking on hot rocks. But, I am finding things to help with that problem. If this can keep me stable I don't think there will be a problem staying on it. My ONC did not start me on the max dose - we are easing up to the four pills. Let us know what happens with the blood clot situation.

[skypup]

Thank you, friends, all you wonderful people all around the world. No clot--the doc was 100% sure I'd be giving myself Lovenox injections, but at least I am saved from that. My traveling companion did rename me Stumpy, however. Am about to google lymphedema. Any info would be appreciated. Another thing cancer has taken from me recently, btw, is the ability to wear blue jeans. Knit pants only because of inguinal lymph nodes, and now this. Ha! At least I still look healthy.

[Bev G]

Pup--just a short word as it's super late and I'm super groggy. Several years ago I noted that my left ankle was crazy swollen and I figured I had a malignant inguinal node. All my pals here told me to go to the ER, maybe I had a clot....Well, I had neither. Seems I had torn the crap out of 3 of the four ligaments in my ankle, and broken a bone on the top of my foot and didn't even know it. Couldn't feel it. Almost 4 years later and it's still all torn up, plus a little more from an additional fall. No one will touch it to fix it. "You have stage IV cancer and 50 years of type 1 diabetes---what do you want us to do about it??!??"

Crazy swollen all the time. (Did go back the next day for Doppler to make sure there was not a clot as well, and there wasn't) Any chance you should get an ankle x-ray?

xox

Bev

[Cherie]

Hi Skypup,

If you LN mets are "indolent" what about an HIA pump? Get rid of the liver mets then go after the LN mets....surly someone wants to give it a try?

I'm just happy to hear that they are shrinking rather than growing.

[pukalania]

Skypup!
What an adventure! Glad you can avoid the lovenox at least!
Hope you got some rest after all that frustration and a bit of fun!

[skypup]

Cherie, I asked both the surgeon and my onc about the pump, and neither was a fan. Their reasons were good, IMO, and, kudos to my onc, he was willing to send me to Sloan if I wanted to pursue that. I don't want to go that route, though, even though I am glad Dr K is having success with many of our friends. He is in favor of the spheres, but my lesions are now too small for them. So we'll keep doing the least amount of chemo I can get away with to keep them under control and then look at spheres later.

I am going to ask them about Dr Lin's protocol (thank you , Maia!).

Yay for all of us kidnap-ees!!!! We keep rolling along, don't we?

[Maia]

In a rush during the morning, Skyppupy, but about lymphedema... check this thread, follow surfingon link : viewtopic.php?f=1&t=32192#p211014 also check viewtopic.php?f=1&t=2229&p=14124
There is a National Lymphedema Network, you can find a practitioner here: http://www.lymphnet.org/find-treatment

xoxoxo

[Hall0731]

Hi Sky Pup,

My 23 year old daughter just went through a 2 stage liver resection this year at MD- 5 mets on her liver. Stage 1 was a wedge removed out of her left lobe. The did it Laroscopic 3 nights in the hospital. 8 days later did a portal vein embolization to make her left side grow more. Her liver volume grew to 33 per cent in the segment removed. Our liver surgeon was looking for 40 per cent due to her age and the fact she had only had 4 round of chemo. They went ahead and removed her entire right love on 4/3 via open surgery. She was in the hospital 5 nights. First week was rough but although tired is only on advil now and is doing wonderful walking everyday. Dr. Claudius Conrad is an amazing surgeon. He told us only 1 out of 10 surgeons would have attempted what they did for her. Wish you the very best for your procedure.

My surgeon was also Dr. Conrad. I had mine in January with him. He removed 3 mets off my left lobe with wedges and 2 off my right in the same surgery. He also told us most surgeons would have just cut my whole left lobe off. He wanted to take a little bit more time and save as much as he could in case it came back to do again. My surgery was open from the beginning. They also removed a harmatoma from the backside of my liver.

[Hall0731]

skypup,

How much liver involvment do you have? I had 5 mets between the two lobes and a harmatoma on the backside of my liver. My mets were small though. Did dr. vauthey tell you how much liver was involved? I so with you could see Dr. Claudius Conrad. He really fights for you. He had to fight for my case. I have had complete success with my liver so far. I also had asked for the Hai pump, but it seems MDA doesn't really like to do them. I haven't needed it yet.

[sdp]

Dear skypup,

I would,still suggest that u try to seek other opinions on the liver resection.
If you allow I would suggest

Dr Henry petrowsky at UCLA
Dr dave Geller at UPMC
AND
DR yuman fong at MSKCC

Don't give up hope