kris00j
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Congratulations, Percy!!! I’m sure I speak for all of us when I say you are a Godsend for our community! I’m sure you will do a wonderful job, and represent our cc community well Sneak that nasty word (cholangiocarcinoma) in whenever you can.
I met with Fox Chase’s radiological oncologist (the one in charge of my radiation) yesterday…he never received the images from my CY scan from Sloan But I brought my own printout of the scan, thankfully, so he could read that. Without being able to see images, he said he is hopeful. The nodes are responding well, and the tumor is large, so it will respond slower and differently than the nodes…. he said to not necessarily look for shrinkage with the tumor, but rather look for scarring and such.
So now I’m more hopeful again…
Now all I have to do soon is set up that appt. for cataract surgery…… UGH!I’m at 22 months and was waiting for some kind of surgery. My doc says I’m sick but I refuse to believe him. The surgeon just told me there will never be a resection, BUT…
I had stereotactic radiation and the cancer cells are barely more active than “normal” cells! It’s the best thing I could have heard. They will wake up “one day” but I’m hoping for years!I actually just spoke to them this morning. My COBRA is due to run out at the end of Nov. and medicaid does not kick in until Oct. 2013. So I have a coverage problem for 11 months….
Called a few numbers, didn’t get any help. Called PCIP and was told my covrage would be around $150-$200 a month, but it would not cover any pre-existing conditions for a year. What do I do about the bills for cancer?? This program is obviously not geared toward people that need it. I am very frustrated about our health care system.
One thing I have to look into is extending my COBRA at $500/month. OR since Sloan Kettering has accepted me as a hardship I have to go to SK for EVERY cancer related problem. Then I can afford PCIP. SK has absolved me of all my bills past and future until June or July 2013. Then I have to file again…
I also have to wait 2 weeks, but they do now have a continuation coverage thru AETNA that might work for me. I can’t talk to anyone until 60 days before COBRA expires tho… it’s hard to try to plan ahead…Well, it didn’t go so well. No surgery, at least not until January or February. If then.
The thing I love/don’t love most about Dr. Fong is he tells it straight. So here’s the scoop:
The nodes ARE dying. He thinks it looks like they are dying from the inside, too, which is GREAT news.
The bad news:
The tumor isn’t reacting as well to the radiation.
The unknown news: the radiation will continue to work at some level for the next 6-8 months. The lymph nodes are finally responding to something, so that’s good. How well they continue to respond is unknown, but he’s optimistic.
The tumor, on the other hand, is an unknown quantity. Will it start responding to the radiation? Will it start growing again?? Will Nov. 2 be too long to wait?
I DID say that I thought Dr. K was not being aggressive enough. Dr. F. said she is, but I have to understand that the liver can only take so much… he agrees we should wait and then may have to hit the tumor with chemo.
He is no longer talking resection only. Now he is talking (something) oblation. I remembered he had mentioned it at our first meeting, but the tumor was too large. He said it is still large, but it is smaller than it was. So it is possible that oblation will work.
Dr. F. said we don’t want to kill the liver with too much at once. But FUDR thru the pump in Nov. if necessary should work. Shrink the tumor a little and pray the nodes die completely.
He also said if we are too aggressive and misuse the chemos, they might not work and then I’m out of options. Also, if the nodes start to grow again, I might be out of options.
Like I said, I love that he doesn’t pull punches but it’s pretty upsetting to hear some of it.
I hope this wasn’t too disjointed. Trying to remember everything and not overreact too much to what he said… it’s tough. i HATE CANCER!!Today’s the day. I wasn’t nervous until last night when I tried to go to sleep. I figure all he can say is yes or no and explain… I’m ready either way. And I thought I was handling it so well… but now the freakies are coming out!
Maria: Wonderful news! I know you run, but every time you say you are running a marathon, I’m so impressed!! I can’t imagine running around the block, and I am “healthy”!! At least on the outside…
Percy: from your lips!! I hope we can have “uncancerlike” discussions soon. Wouldn’t that be great?
I figure the longer I stay alive the better my chances of having those discussions…Tiff:
I am so glad to hear about this!! I have been wondering!!
And freak!! It’s for a good reason. I just freaked for you, too!
I hope your wait isn’t too long.
Love and hugs,I am so sorry to hear about your aborted surgery. I almost know how you feel, as they cancelled my resection 4 days before I was supposed to have it. It is the most depressing news… just try to stay strong and remember: the longer you stay alive the closer you are to someone finding a cure.
I know that doesn’t help right now, but know my prayers are with you for a new protocol that proves successful.YAY!! I’m so happy for you!! I can’t believe it’s been a year already. (already??) what a choice of words…
November 2 is the next scan as of right now. With follow ups on Nov. 5.
We’ll see what Dr. F. says on Monday.
I thought of something else we could possibly do: the silly pump is still in me and still not being used. So maybe we can throw some chemo in there and get chemo directly to the tumor and shrink that while we are waiting… Have to ask that, too.
