June 10, 2011 at 10:02 pm #49458
Kris….sure makes you think that the body does what it wants to do. Anyway, good luck on your decision of moving forward. Of course, we have tons of threads on the Gem/Cis combo and you can always read through some by using our own google search function.
But, I also want to mention something I just recently became aware of. In fact, I noticed it posted at UCSF while accompanying my friend to a visit with a physician. It is supposed to be really helpful in re: to chemo induced hair loss. Take a look:
If you so choose you will be the first to try this on our site.
Either way, let us know how you are progressing. And, tons of love and support is coming your way.
All my best wishes,
MarionJune 10, 2011 at 9:44 pm #49457
Hello to the new and improved Kris, you have mustered up a winning attitude!
I am so happy to see you found your white lace boxing gloves and are now going a few rounds. Good for you. You just show that CC who is boss. Wigs can be a lot of fun as our other Kris had showed us, from Sweden. She had ended up with a red one! I am hoping your side effects if any will be minimal. You go girl!June 10, 2011 at 9:22 pm #49456
After a number of weeks of trying to get the body to cooperate so I can use the liver infusion pump, we decided to start systemic chemo. Because the cancer had spread to the surrounding lymph nodes, and another surgery would mean postponing the fight another 2 or 3 weeks, I totally agreed with my oncologist. So we started me on Gemzar and Oxaliplatin. After 1 chemo treatment, I am getting a port. Veins weren’t built for that kind of abuse.
Side effects were minimal compared to what could happen. So I am very happy to have started fighting. Maybe eventually we will feel able to stop the chemo for a few weeks so I can have the surgery to try to get the pump working. It’s still frustrating that I have this weight in my left abdominal cavity that isn’t doing a darned thing, but at least treatment has begun.
I have 2 oncologists: the one at Sloane Kettering (Dr. Kemeny) and another closer one in Princeton, NJ named Dr. Lee. I’ve seen Dr. Lee the past 2 weeks, and he is hopeful that since my side effects were not too bad they shouldn’t get too much worse. There are 2 side effects I will eventually have to deal with: hair loss and neuropathy. I have LOTS of hair so am hoping I only lose some, but if need be, I’m preparing myself to have some fun with wigs. The neuropathy will occur when the Oxaliplatin is becoming too much for my system.
White blood and platelet counts already dropped considerably after 1 treatment. That makes me a little nervous for future treatments. But I keep thinking I’m young and they will bounce back before my next treatment.May 16, 2011 at 7:48 am #49455mariaParticipant
I can feel your frustration, this situation is not fun at all.
TRY to stop thinking about a future that nobody knows. Focus on what YOU can do at this very moment, and thereMay 16, 2011 at 12:34 am #49454
Friday didn’t work again. Suggestion from the radiologist is that the original surgeon has to go back in to block off a couple of arteries or veins that are too large for her. But the artery they are using to feed the catheter into the liver seems to be narrow. Don’t know if he picked a bad choice for this? I don’t like not knowing I don’t know when this next surgery will be, I don’t know if it will work, I don’t know if this pump will EVER work, and I don’t know if I will EVER get chemo started. I wonder how large the tumor is now.
I just really need some answers and for thie breatment to begin. I am getting so frustrated.May 13, 2011 at 3:28 am #49453
Kris….Hang in there. Tomorrow just has to work out for you. Fingers are crossed and a tidal wave of love is heading your way. Can you feel it?
All my best wishes,
MarionMay 13, 2011 at 12:05 am #49452
Kris, Please don’t loose hope! You are with an excellent doctor and 2nd time hopefully will be a charm. Good luck tomorrow and know that we are all thinking about you and sending all our prayers and good wishes your way.May 12, 2011 at 11:56 pm #49451
It’s been a while since I wrote. I had the surgery on April 19th, where they removed my gall bladder and inserted the Codman pump. 10 days in the hospital because I ran a fever the first few days. Since then it’s been nothing but test after procedure after test… Basically the pump is surgically inserted into the left side of the abdomen and “tacked” into the abdomen so it is fairly stable. It weighs about 4 oz. It runs a catheter to the liver, where the veins and arteries have hopefully all been sealed off so the liver is self-contained. Then it pumps strong chemo into the liver and if it does it’s job, it shrinks the tumor so it becomes operable.
Unfortunately, my veins and arteries have not sealed off. I have had 2 pump tests (testing to see if the arteries and veins leak) and one failed embolization. Embolization try #2 is tomorrow morning. It’s been 3 weeks and I haven’t gotten any closer to fighting this tumor. It is getting really scary and frustrating.
KrisApril 14, 2011 at 9:20 pm #49450gavinModerator
Thanks for letting us know about your surgery on Tuesday. I so hope it goes well and I will keep everything crossed for you! Please keep us updated on how things go for you, and I look forward to reading about it all in the good news section!
My best wishes to you,
GavinApril 14, 2011 at 9:10 pm #49449
Kris….good luck on Tuesday. Although, you are the first on our site, the liver infusion pump has been around for some time. These people are out there but, they don’t seem to post on our discussion board. Hopefully someone will read this posting and chime in soon because, any experience shared makes for a better understanding and comfort.
But, you know that we are thinking of you and can’t wait to hear from you.
All my best wishes,
MarionApril 14, 2011 at 6:27 pm #49448
Thanks Lainy. Maybe I’ll even be able to try the cyber knife in the future!April 14, 2011 at 1:00 pm #49447
Kris, I am praying so hard for you for a successful Tuesday! With an attitude like yours, you can’t lose! This time of year is for new beginnings and we will be cheering for everything to come up roses for you. You are the little engine that could. Go Kris go! Go Kris Go! Bottom line is I want that Birthday Gift for you as well.April 14, 2011 at 12:24 pm #49446
Tuesday is my surgery. Dr. Fong will be surgically implanting the hepatic liver infusion pump into my abdomen so I can have chemo directly pumped into my liver and the tumor. The hope is that the tumor will shrink away from my Vena Cava so we can operate. Failing that, Dr. Fong has suggested other alternatives after the tumor shrinks enough. We might try cryogenics or another form of confusing, killing or disrupting the tumor. There are so many options out there.
I will have 4-6 weeks of recovery time… my chemo will start 4 weeks in. Dr. Fong is hopeful that within 4 months we will see improvement. My hope WAS that I would be better by my birthday in June (that was before I found out what cc was all about). My hope now is to be clean by my NEXT birthday!
I hope and pray every night that I have made the right decision by going a different route than everyone else seems to do. But my tumor was caught fairly early, so I’m hoping these other options are still options for me. I would LOVE to post this under good news in about 4 months! Look for me there!
KrisApril 8, 2011 at 6:31 am #49445
Kris: I believe it is called a Hepatic Liver Infusion Pump. This is the info I found:
I hope this helps.
All my best wishes,
MarionApril 7, 2011 at 12:37 pm #49444
I have the info from the one that you sent me, and, like you, was unable to find much information online about the pump. I know Mem Sloan Kettering is big on new developments, so hopefully that’s why I can’t find much. I just pray every day that I made the right decision. I know we all do: no matter which decision you make there’s always that thought that “maybe” there was another option.
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