kris00j
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Michele,
Fingers crossed for the PET scan!
I don’t know what kind of insurance you have, but it’s hard getting approval with Aetna. PETs are not approved for cc patients! I don’t make the rules: I’m trying to break them! I had to fight like crazy to get a PET approved. Among other things, like care… New onc….
Maybe that is one reason your onc has not asked for one? He may know it won’t be approved anyway. And it’s tough to get those insurance guys to change their minds.I have been inoperable since the beginning. Stage IV. I think it’s extra hepatic. I always forget that.
My first onc and surgeon were from Abington near me. When I heard CC I went to Sloan. Dr. Yuman Fong at Sloan is wonderful. I absolutely love him. He speaks to you, not AT you, if you know what I mean. Great guy. In Jan. 2012 we thought I could get a resection… The tumor has been wrapped around my vena cava. He thought it might be possible to get it out and oblate the cells that would be left. He was very sure it would be good results. BUT then it spread to my lymph nodes again while we waited for a lung infection to clear. I had a portal vein embolization to start to kill off the left side of my liver and grow the right side. Unfortunately they nicked my lung. By the time that was clear enough, the lymph nodes had grown again and were wrapped around too many organs. I was told I was very sick. We tried SBRT (at Fox Chase) and it worked, then a new node popped up. All radiated nodes are stable and showing necrosis.
My onc, Dr. Nancy Kemeny, has been very detached. I ask questions and might get half of an answer. She frustrated me to no end. But her reputation is amazing. She is brilliant. So I stuck with her. And I miss her assistants. They were great.
When the latest node popped up I asked about choices, trials, etc. her answer was to check out any clinical trials and do my own research. I asked if there were any at sloan and got no response. So I called fox chase. They have a clinical trial which I Entered. I love Crystal Denlinger, my new onc. She discusses any questions I have. I feel we all need someone like that. And my rad onc, Joshua Meyer, is great! All the staff so far are wonderful. Every one of them seems to enjoy their job and seems to want to help.So to answer your question, there are good and bad at both. Sloan is better known, and Dr. Fong is wonderful. Bad point: Dr. K. Sloan is also willing to consult with a closer onc for your treatment, if you can find one you like. And they have the Basking Ridge satellite office for scans, etc.
Fox Chase: not as well known yet. But 40 clinical trials, 1 aimed at cc. And great doctors and staff. Oh, and easier to get to! I don’t know if Fox Chase will consult with a closer onc. They are 20 min. from my house: another plus for me.
Good luck with your decision. They are both great places and I am still here because of dr. K so she can’t be all THAT bad!! I just need a little personality and hers is lacking.
If you do decide to go to SK, it’s also easy on the train. Jump on a line to NY Penn Station, then take the E subway to 53rd and Lex. It’s right there.Have you looked at Fox Chase in Philadelphia? I realize its a bit of a drive but I like it there. Just changed to them from Sloan Kettering. So far, everyone I have met is compassionate and seems to enjoy helping others.
I used to make day trips to NY to Sloan Kettering. They are a great hospital and have a satellite office in Basking Ridge. The only thing I will say is I do not recommend Dr. Nancy Kemeny, unless you don’t care if you are treated by someone who doesn’t seem to care. I stuck with her for 2 years because she is brilliant, but finally gave up and am so happy I made the change.So far so good. My hands are feeling bloated and sore/tingly but they say it isn’t a side effect… Hope it goes away soon or I’m gonna have to say it is a side effect!
But that’s my only complaint so I won’t complain. June 17 is the big day when I find out how well it’s working. Thanks for asking: you have enough to worry about!
I’m accompanying a friend to B.R. In June for a pre hospital cert for her… Maybe you will feel up to visiting for lunch at Panera or somewhere close. Need to find out specifics. And not be working… Looking for a part time job now.
Have a good Mother’s Day. And keeping you in my prayers for your last radiation to go thru and for it to stop the progression and do some damage to those $&!!! Cancer cells! I’ll try to send my troll to visit: he stopped by the other day to eat some cancer! His favorite treat!Mary,
You have been thru a lot lately!
I pray you feel well enough to enjoy Mother’s Day. Get one last treatment in and then let the docs do what is best for you. I hope the radiation begins to work fairly quickly so you can get start to feel better.
Hugs and strength to you!Tiff:
Excellent news!! I am SSSSOOOOOOOOO excited for you!! No worries: God brought you here!! You just have to BELIEVE!I can’t wait to hear the great news!!!!
You have been in my prayers every night: now I’m changing them!! “Thank you God for getting Tiff where she is! And thanks for the successful transplant!!”
Love ya!! And LOTS of cyber hugs!!
Mary,
I am sorry to hear things are not going well. I had so hoped you would find some relief and start to feel better. Ugh! I hate this cancer!
I’m praying that your docs have the knowledge and skill to help you feel better soon.Mary,
I had no issues. But they didn’t implant anything either. And I had my SBRT at Fox Chase in case… I wanted to be closer to home.Jason,
Gem/Ox will eventually cause neuropathy. Make sure you have warm socks, gloves, possibly a scarf handy. Your onc should tell you this, but… Don’t drink cold beverages until your throat can handle it. For me it was about 4 days. Good thing I don’t mind room temp liquids! And you will possibly have nausea. My second round I felt nauseous. I used the meds to control it but fought it for a couple of days. By the 4th treatment, I just let it go. 4 hours after treatment, I felt so much better after! And didn’t have to fight it for days!
It is much easier on the other organs than cisplatin. Sloan Kettering uses it before cisplatin now.
I also have Dr. Fong at Sloan, and he is wonderful! I wish I had been able to see how well the resection went, but I was inoperable for the first year. Then he thought he could try it… But before my surgery, it spread so surgery was out.
There are a number of clinical trials that you might be able to participate in, too.Jason,
Sorry you have to be here. It sucks, plain and simple.
I went for a second opinion and stayed with them for 2 years. After 2 years, I started to feel my onc didn’t really care about me… Just statistics, etc. so I went for a 3rd opinion 2 years into this fight. I am now being treated by a new onc, closer to home, and feeling this is where I am supposed to be.
Don’t ever hesitate to get another opinion if you don’t like what you hear, or feel your onc is not listening to you…it’s your life, after all.
Many prayers for you…Crissie:
There is no expiration date the doctors can see. They are going on statistics. One year ago I was told I should be very sick and to put my affairs in order. I still feel fine a year after I was told that. I refuse to believe them! A positive attitude is the most important thing. And being proactive.
