Day 55
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Kris, I wish you well on your upcoming surgery and hope for the best possible outcome. Intuitively, one would think applying chemo agents directly into the tumor would be more effective than in an IV. After we’ve found a doctor we think has what’s needed in skills, we just have to trust their judgments.
Let us know when your up to it.
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.
KrisKris,
Good luck to you for Tuesday. Your attitude is great, realistic, positive and inquisitive. Do you know what form the chemo will take? 5-fu? Did you ask about Cyberknife? Lainy raves about it, although not sure about the location near the vein.
We’ll look out for you in the good news section for sure,
KateKris: Just wanted to wish you the best of luck on Tuesday and congratulate you for doing what you and Dr. Fong feel is the best thing. I will definitely be looking for your post under the “Good News”! We are all praying this goes really well for you. Stay positive and be well.
CherylTuesday 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!
KrisKris…..Dr. Fong is highly respected by his peers. You are in excellent hands. On the other hand I believe that most physician welcome informed patients and that includes as Jim has mentioned, consulting with other specialists. It is up to you and you should not worry about offending Dr. Fong because, I don’t believe that you would.
All my best wishes,
MarionKris, I’m glad you are well organized. It’s important for doctors and patients, and so many patients are so caught up in the confusion and fear, that they are totally disorganized.
Kris, I can’t comment about Dr. Fong, since I have no personal knowledge of him. But there is no harm in seeking more opinions until you are totally comfortable with where you’re headed. If you are already in or near NYC, I would recommend getting a second opinion from Dr. Kato. He’s a really caring, humble surgeon with unbelievable skills and courage, and has a reputation for helping ‘inoperable’ patients. I was, as I found out later, likely to be in that category, save for Dr. Kato, who I found through remarkable good luck and fate. If you go to the 4th section of the thread “Hospitals” under my name, you will find complete contact info for Dr. Kato. You can count on him to give you his honest opinion.
No doctor should be offended because a cc patient is seeking additional opinions. This is a very challenging disease and it requires patients to be resourceful because it is also rare, and no one in the field has huge numbers of patients, given only about 2000 new cases per year in the US.
Again, good luck.
Jim:
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.
KrisKris, you can take some comfort that you are being treated at one of the best places for cc. I was treated at NY Presbyterian and operated on Dr. T. Kato with a resection two years ago, and so far, am still clean, but looking over my shoulder when CT scans come up. I can understand the anxiety (I had a couple of cardiac events while awaiting a pre-surgery meeting to be scheduled). There are only three places in NYC I would have considered for myself, MSK, NY Presbyterian and Mt. Sinai. Most other places have way too little experience with cc.
It would be nice if one of your friends would volunteer to be your “advocate”. In any case, I would suggest starting a notebook and jot down significant stuff, BC your mind may play tricks on you regarding accurate recollection of events.
I hope the infusion pump has a good outcome for you and you become a surgical candidate. Has the doctor given any time range expectation for results from the infusion pump? BTW, ‘normal’ kind of changes once we have a cc diagnosis.
Try to stay positive and keep us posted on your progress. Good luck.
Thanks 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).
KrisKris – One other thing I wanted to mention. I have a good friend being treated in NY for leukemia. There is a wondeful facility in NYC called The Hope Lodge where cancer patients can stay — for free — if they are being treated and have difficulty with transportation or need to stay nearby a hospital. Check into their website — it may be something that may come in handy if you need to stay nearby Sloan. – Nancy
Hi Kris,
Welcome to the site. Sorry that you had to find us all but glad that you have joined in with us, as you will get so much support here from everyone. From what you have said, it sounds like you have made some excellent decisions about your treatment and with changing your doctor and are taking good control of things for yourself.
We are all here for you, so please feel free to ask any questions that you have and we will all do what we can to help in answering them. I will keep my fingers crossed for you that the tumour does shrink so that surgery can be done. I know what you mean about wading through all the information that is out there, I felt like that when we heard my dads diagnosis of inoperable CC. You will find a lot of information here on the website and the search forum function at the top of the page will help a lot when searching for specific topics, and this will throw up many discusions by the members here. Please let us know how everything goes.
My best wishes to you,
Gavin
Thank 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.
KrisKris….Welcome and I am glad that you have found us. I believe for Sloan to see in excess of 200 CC patients per year. This may not sound like much in comparison to some of the other cancer occurrences but, it represents a large amount of CC patients. We love to hear of shrinking tumors therefore; good luck and please, keep us posted.
All my best wishes,
MarionKris, welcome to our wonderful family but sorry you had to join us! You have done everything exactly right. A good attitude and listen to your gut feelings. You also may want to do some reading on our site as knowledge is power. You are entitled to as many opinions as you want. Where there are options there is always hope. Don’t listen to odds as we were not born with expiration dates. Do you have anyone who can take this journey with you or are you flying solo? We are all here for you and please let us know what happens.
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