kris00j
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Wow. What a story… I’m sorry you had to join our family, but you have found the right place for information and support.
Whether to go on a trial or not is mainly up to the patient, if they are eligible. My decision to do it was based on the fact that the new growth that made me eligible was not life threatening. And other treatments had failed. So I was in a great position to try something new!
It is a very personal decision, one which should be made with the advice of the doctors. And, yes, I agree you have a backup plan should the trial fail.Good luck with your decisions, and please keep us informed. I’m sure we have some info on the trial in our clinical trials section. I can’t remember who, but I’m pretty sure someone talked about CABOZANTINIB.
Suzy,
Sorry I can’t help you. You might ask someone in the financial office of MD Anderson if there is help there. Or the trial group. The drug co. just might pick up most of the tab.It was my understanding that Eli Lilly ( the drug co. for my trial) picks up the tab for blood work, pills, but not scans and dr. visits. I guess maybe it depends on the company?
Do you have someone at your insurance co. that can go to bat for you? I did when I was with AETNA. Sometimes she helped, sometimes not.You should be able to get all records by filling out a (usually) easy form. You can get printed copies and copies on disc of any scans, etc. I had to pay for some of mine (the paperwork was over 200 pages) but some places will do it for you by request. I don’t remember what I paid, but it was something like 5-10 cents a page. It might be a little more difficult since it’s been over a year, but it should still be available.
Hi Michelle, I know, all this can be overwhelming. I also have extrahepatic and have metted to the lymph nodes. I was briefly given hope for surgery, but once it metted that option was taken.
There are many of us who are living with this disease, so there is hope. And so many of us have tried different treatments, so hopefully you can get answers to any and all questions.
Percy has answered better than any of us, I believe. I just wanted to say hi and offer my welcome as well.Hi. I don’t remember meeting an Abraham Wu. So I can’t help you. I did have a number of embolizations, so he might have met me! 2 of them I did not meet the dr. first. I think I met Dr. Goodman and Dr. Brown, although Brown MIGHT be from somewhere else.
Good luck on the 10th and TRY not to stress about it!! Just remember we CAN live with stable.Stable is a good word! Yes, shrinkage is better, but stable is good. Dr. Fong is good, and careful. I believe in him. And Dr. Goodman is very easy to talk to, also. She will walk you through the next step and answer questions.
Enjoy the new year and new hope!Mary, you are overdue for good news!! Let’s all pray for shrinkage for you! I’m just glad you didn’t ask for 17!! lol
No stressing this week!Caroline,
Sloan Kettering has a satellite office in B.R. You could work with NY and go to BR for treatments, I believe.
I don’t know who you are seeing in NY, but they could possibly work with the onc in BR and give them treatment plans. Your mom would probably have to travel to NY every couple of months, but it’s an option.
As far as the moods, scanxiety is perfectly normal. As is the pessimism. As a patient, I can’t tell you what to say to your husband except to tell him at calm times that you apologize ahead of time if things get stressful.
I think the mind is a wonderful and terrible thing. It’s wonderful if you are positive and upbeat, but terrible when you worry. I got so bad with horrible back pain that I had myself getting scanned to see if the back pain was from mets to my bones! In my case, the scan came back clear, and the pain went almost completely away. The stress and my imagination had caused unbearable back pain. In my case, there was no reason for it.
I am not belittling your mom’s pain, by any means. Just saying the stress and uncertainty could be adding to it all, making her feel worse.
Praying for some good news tomorrow!Suz, I, too, am saddened to hear of your sister’s passing. I can only offer prayers for strength and healing for you. I hope that, through the pain of loss, you can find comfort that she is now cancer free.
Crisis, I can’t answer the stents question, but I did have chemo stopped a few times, to let my body heal. The chemo will continue to kill cells for a number of weeks or longer. I think it depends on how long you are on it, how the body is dealing with it, and how it’s working on the cancer cells.
Lainy, you chitchat?? NO!!
Sorry, I couldn’t resist!!
DukeNukem, so glad you got a GOOD surprise!! People do sometimes make you stop and go “hhmmmm!”
I had one woman that stepped up, went to my surgeon, scans, new surgeon, new onc, treatment discussions, etc. when I was scared and lost. I had barely known her before my diagnosis. She was there WHENEVER I needed her. And the weird thing? I don’t need her help anymore, and I find it very hard to get in touch with her now. It’s like she payed it forward.
So glad you got to Skype. Not as good as the real thing, but…..Theresa, welcome to our family. It’s a tough road, but this is the best group of people! When it comes to information, answers, options, I think this is the best place to hear about most everything, from medical to patients point of views. We can also get silly… It helps with the stress sometimes.
It’s great that you have so much info at your fingertips. Sloan Kettering has all blood work online, but as of April hadn’t gotten other records online yet. It was supposed to happen.
As far as attention to cc: I hate to say it, but thankfully there’s been a few famous people diagnosed lately… Maybe that will help.
