kris00j
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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.Kris
Katja:
With the tumor being so close to the heart, radiation is out of the question until we can shrink it. Then depending on how it shrinks, who knows what options will be available? Surgery, cryogenics or something else. I have to wait and see. As far as what kind of chemo: I think it will depend on whether the lymph nodes come back positive or not. I will be sure to post in the chemo section tho, and let people know how this pump is working. As far as I can tell, I’m the only one trying it on this site.
KrisTuesday 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!
KrisTuesday 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!
KrisCathy:
Thank you for sharing your story. I agree that a 2nd, 3rd or 4th opinion is very important. I was sent to an oncological surgeon who knew immediately that this was out of his league. He referred me to one of the top rated liver specialists in the Philadelphia, PA area. I disliked the surgeon, but was willing to listen to him because he is supposedly one of the best in the area. After over 1 month of tests, he changed his views on the success of surgery. When I first met with him, he thought it would be a 90% success rate. After the month of tests and waiting, waiting, he lowered his view to 60% success. I did not like those odds, so went to Memorial Sloan Kettering. Dr. Fong said I would have never lived thru a surgery because of the placement of my tumor, and has suggested a hepatic liver infusion pump. We are going to try to shrink the tumor, and the pump surgery is Tuesday the 19th.
If I had stayed with the “good” local Philadelphia, PA surgeon, I would have died on the table today. So today is my new birthday! I hope in a month or so to be able to blog onto the “good news” section with wonderful news!
Good luck on your journey.
KrisMalcolm:
Thank you so much for sharing your day and pictures with us. As one on the other end of the spectrum (newly diagnosed and frightened) it is heartening to see. It gives me hope that I will be able to achieve a “normal” life again. Of course, “normal” this time around won’t be so normal, but it will be filled with light and laughter and doing things on my bucket list!
KrisMinnie:
I am newly diagnosed with cc. They found a 4cm mass in Feb. because I had a gall bladder attack. Since then my gall bladder has collapsed and the mass is now over 6cm. The only pain I have is a bothersome back ache and an “uncomfortable” feeling in my abdomen. I start treatment next week with chemo. No operation on the tumor is planned right now because of the placement of the tumor. And I guess mine is pretty fast growing. My surgeon says I’ve probably had it about 9 months.
I’m sending prayers and good wishes Karl’s way.
KrisJim:
I’m way ahead of you in the notebook category. I have a calendar with weekly and monthly so I can write notes and meetings. I glued in pockets to hold important papers, receipts, etc. I also have another smaller notebook I bring to all meetings and write everything I can down and then transcribe the “important” stuff to the larger notebook. I think I might have to go with a folder/envelope to put all this in as the “important papers” pile is growing. I have already found it to be helpful when asking for previous tests and talking to drs about dates when tests, procedures were done.
I read about Dr. Kato and wonder if I should contact him or if I should stay with Dr. Fong. I like Dr. Fong. I feel he is on my side (which is a great improvement over the former liver specialist). I think I am making the right decision for me, but I am doing a treatment that allows me to change direction, also. I do not know the time frame.
Thanks for the encouragement everyone.
KrisThanks Nancy. I was trying to find somewhere where my parents could stay while I am in the hospital but Sloan has no housing. They do have arrangements with a couple of the local hotels, but it’s still expensive. I will be sure to write this down just in case I need it in the future. I hope that by going with the treatment plan I am going with that I will have minimal reactions to the chemo. The Dr. and nurse said many people lead “normal” lives (whatever that is anymore).
KrisThanks Gavin
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.
KrisThank you everyone. Lainy: I live alone, but my parents are flying up in time for my surgery and will stay for a few to several weeks during my convalescence. I also have some wonderful friends to support me and to take me to some of these very trying dr. appts. I’ve learned quickly to take the support they offer and grab on! I will probably be going solo to many of my future appointments once I get the hang of dealing with this on a daily basis. I haven’t yet come to terms with the fact that I might be looking at my mortality. I haven’t given up, not by a long shot, but as you all know, it is an unbelievable emotional shock: one that I haven’t quite gotten used to.
I chose the infusion pump because it seemed like a good option for someone like me: I have very few symptoms at this stage. Just a backache and an “uncomfortable” abdomen. Also a loss of appetite, but I believe that is from the stress more than the cancer. I have started eating much more healthy foods and am starting to read up on alternative treatments. Many of these are just adjusting my diet. I am finding it hard to process all the information that is being thrown at me from well wishing friends, but am trying to weed thru it all. My hope is also that by finding a diet that works for me, I can be an active participant in controlling this invasion and an active participant in ridding my body of this unwanted intruder.
Kris
