kris00j
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Mary,
I’m sorry you had to put your trip off temporarily. I’m positive there is a bright spot in here: you are still in this country and you get treatment sooner!
Praying its successful and you get to go to Lourdes in a month or two.At this point, I believe the drug company is now paying… But who knows? If the insurance co. has to pay for scans, etc., I’m hoping its no longer a problem. Of course, the company I used to work for is shopping out the insurance coverage, so I sure hope it’s still Aetna. Not that I like Aetna, but I’ve been through all the BS with them to get stuff covered. The paperwork is kind of unclear: I’m sure Eli Lilly is paying for the drug, pretty sure they are covering all the blood work… And I was told they were paying for everything, but I’m not sure after reading the paperwork. It does NOT say they are paying for the scans every 2 months.
And, yes, Marion, I agree. I believe the trial drug is going to work. I believe it will shrink and hopefully eradicate the cancer. But, failing that, I will settle for “stable”!
Marion: I wish I was farther along in the trial I am participating in. So far, I had trouble getting approval for Fox Chase itself for testing, since my “preferred” (not my preferred, but the insurance co) hospital is right here… Finally got approval. As far as I know, the drug co. is paying for the trial… I guess I will find out, but not until mid June. Getting approval was tough. I got my case manager involved and she went to one of the top doc guys who has been an onc and understands the problems with getting the correct care. He overrode the denial. Hopefully I don’t have to go through that again.
And 7 days in I have no side effects. Unfortunately, I won’t know how well it’s working until mid June.
My new onc suggested the trial to me. It is aimed at patients (15 of them cc) that have had the approved treatment plans, with either no success or who had to stop because of side effects. Since I fit the criteria, I’m in. She spent quite some time explaining to me. The woman running the trial also went over the “rules and regs” of the trial.
It will continue (as I understand) as long as it works for me with no major side effects or damage to other bodily functions. As long as the cancer cells either shrink or stay stable, I can continue the trial. At least that’s how I understand it.Is this what you wanted?
6 days in and no side effects at all!! Yippee! Scan is set for mid June so won’t know much until then.
I was on it for 2 months. The hand and foot syndrome wasn’t bad until the last dose. Even then it wasn’t too bad. I stopped it because it didn’t work on one of the mutations of cc in my body. My feet started peeling because I got lazy about lotioning them after I quit taking the Xeloda. I kept it up for about a month then started slacking. Then they peeled. It wouldn’t have been that bad but it was summer time and my feet showed!
Suzy,
I don’t know how your insurance is, but you can contact Genentech and they might reimburse you for the Xeloda depending on how much it costs. My copay was something like $350 and my adjusted copay was around $80 if I remember right… The brain is one of the first things to go….. And mine went for a walk when chemo started and hadn’t come back yet!
My main side effects were the hand and foot syndrome. Just keep the hands and feet lotioned. I found socks that keep the lotion so I used them.
Good luck with the new treatment!I don’t know where, but the trial I am in is using molecular testing. Eli Lilly is doing the trial at 3 cancer centers.
Huong-my,
Sorry that you had to find us. I am glad Pamela chimed in. I was going to send you her way so you could hear her daughters story.
My story in a few sentences is: I, too, thought this was a death sentence. I was healthy and 47 when diagnosed February-march of 2011 (tests and scans, etc took 2 months). I immediately sought another opinion at Sloan Kettering, which is about 3 hours away. I am not operable either, but in 24 months, have been in the hospital less than 1 month total. I am otherwise still healthy, and no longer consider this to be a death sentence. I consider it more of a life sentence because I know how precious each day is and most people don’t get this chance.
After 2 years with Sloan Kettering, I recently changed to Fox Chase and have entered a clinical trial that seems very hopeful.
I know it’s a lot to handle, but stay positive and find the best doctor for your father. One he trusts is very important.
Prayers go out to you and your dad.I started the trial today. It was a long (can you say long?) day! 8 hours of not much… Blood work, wait….. Meet with onc…. Wait….. EKG and first day of pills….. Wait 4 hours UGH! And I forgot my chargers so my iPad died and my phone was about to!! Then another EKG and I was FINALLY free to go! Back tomorrow for 1-2 hours.
I will definitely keep everyone in the loop about this as I’m very hopeful we will ALL benefit from the results!! Just me first!
— I like to be first!!
I’m hoping for little to no side effects…..Susie,
Good thoughts only!! Good thoughts and positive thinking work!!
Prayers that your scans are clean!Lainy, you are so punny!! Haha. As long as he knows Jack about something and isn’t a Queen or a Joker I’ll be happy! Haha
I’m ranked pretty high again this quarter in the league. Last quarter I split 1st& 2nd with another guy for money.
But I’ve never played for REAL $$$.
I didn’t do well today but I don’t normally do well when I’m running a game. And I ran it all… 3 different raffles, counting $$, etc.
