June 9, 2010 at 4:43 pm #38803lainyParticipant
Tom, may I just say you are a breath of fresh air and I needed that today! I love your sense of humor as it matches mine and Teddy’s. Yesterday we called his sister in Dallas to tell her the bad news and in the course of conversation he said to her, “I love you so much and you know I would take a bullet for you.” Then he burst out laughing and said, ” heck what do I care now?” He must have laughed at himself for minutes.June 9, 2010 at 4:19 pm #38802kentuckyjackMember
Rick–In response to your chemo treatment experience question (which I may have misunderstood): I am on infusion of oxiliplatin(sic?) and Gemzar once every two weeks, plus Xeloda pills daily for the week starting on infusion day, then rest a week. I’ve not heard of the other agents.
By the way My tumor’s bigger than Your tumor, so there! God help us laugh and pray and fight rather than suffer the gloomy pits!
God bless you, senior brother!
-TomJune 9, 2010 at 3:40 pm #38801
Thank you all for the encouragement. Went to my local ONC this am and told him about all of the happenings and he really didn’t have much of a reaction. He’s probably just being tight lipped and doesn’t want to see anyone get into trouble. I thought he would have had something to say about it.
Anyways, it looks like I am having trouble getting insurance approval for the new drug that was recommended for me at Mayo, which is Afinator/Everolimus. I can get the prescription for it no problem, but if insurance doesn’t pay then it isn’t really an option!! The cost of this drug is over $7000 per month, so that’s not an out of pocket possibility even if it was a cure. So we will see what happens. Hopefully it will work out somehow.
Has anyone else here taken Everolimus (generic for Afinator)? I’d be very curious to hear from someone who has. It has been in recent clinical trials and I think the docs at Mayo have some inside knowledge about it that hasn’t been published yet because it was really being pushed as the top choice.
Anyways, that is the latest on this saga. We’ll keep on plugging away.
RickJune 8, 2010 at 8:00 pm #38800kayMember
I am so sorry that the doctors missed this. On my fathers last scans 1 radiologist said the cancer was back and the other said no it wasnt. Same hospital. I have a lot of respect for doctors but with my dad it was their negligence that ultimately did him in at 62 leaving a wife of 38 years and three of us lonely daughters. We were scheduled for a different oncologist the day he unexpectantly passed from a blood clot because they were not watching him, although we saw the doctors weekly for a month complaining of the same symptoms.
I urge you to get 2nd and 3rd opinions because my father would still be alive today, as his surgeon told us. I will always remeber a show that doctor OZ did that said you must be your own advocate when it comes to your health.
kayJune 8, 2010 at 6:31 pm #38799gavinModerator
You have every reason and right to rant away so please do so and feel no need at all to apologise for doing so. I think if I was in your shoes then I would be doing the same. I know you must be so angry and disappointed right now, but please try and stay as positive as you can. I so hope for the best for you and am sending you loads of positive thoughts.
GavinJune 8, 2010 at 6:20 pm #38798darlaParticipant
Rant & rave all you want. It must all be so frustrating & disappointing. I hope things start to turn around and you have some better news soon.
Think Of You,
DarlaJune 8, 2010 at 5:50 pm #38797ashleyParticipant
I know you are dissappointed over the news of the tumor – it amazes me how much reading scans seems to be an art and not a science as one would expect. Keep your head high.. Like Gores said ( I think you mentioned this on your caring bridge page) you still have SEVERAL treatment options. You were concerned over your rising CA 19-9 before heading to the Mayo – so maybe this trip all happened for a reason to get you onto a new treatment and get the Mayo docs back into the mix. I have not heard of this everolimus chemo – but I hope your ins. covers it. Is it new?? I think of you often and hope once you switch treatments you can see your stabilizing levels trending downwards once again.
AshleyJune 8, 2010 at 2:07 am #38796kathybMember
You now have a plan. That’s good news. I usually pray for God to decide which treatment option He wants me to have, and that He will somehow block the ones that don’t fit into His plan. He is my main physician. I only tell you this because I know you are also a Christian with faith much like mine.
I totally agree with your assessment of Mayo and I’ve heard wonderful things about Dr. Gores. I do know first hand about the stent doctors. They are the best. I was recently sent to the ER at St. Mary’s to be admitted with a clogged stent. By the way, my tumor is on the large size, too. 5×3.. since last Sept. I’m doing great.
KathyJune 8, 2010 at 1:03 am #38795marionsModerator
Rick…..You might already have seen this, but I thought to include it anyway.
Rick, stay hopeful. Your tumor may very well respond to some of the other agents. We have seen it several times before.
The power of positive thinking is heading your way. You are in my thoughts and please, rave as much as you care to. This is a save place to do so.
Hugs and best wishes,
MarionJune 8, 2010 at 12:45 am #38794
Well today came and went…… The news was a touch worse than we thought last week. The tumor is actually 5cm X 4.5cm now so pretty big. And yes, it was missed by my local radiologists. Believe it or not.
Needless to say, my treatment is changing due to this development. I am going to be placed on either everolimus/Afinatab or on Xeloda plus Gemzar. I prefer the everolimus option because it is a targeted therapy with less side effects, plus it is an oral pill. But it depends on whether or not insurance will cover it. I guess we’ll find out soon enough and I’ll let you all know. (anyone else here on this treatment? I haven’t been able to find anyone!!)
I’m mad. But I’m glad that I decided to go to Mayo for the stent maintenance otherwise we might not have gotten this issue of tumor growth on the CT scans figured out for months. I don’t want to waste months on ineffective therapy, thank you very much.
Also found out that the metal stents were mostly occluded and it was a hard case to get them cleaned out and place some plastic stents within the metal stents. They claim this was the best option due to the amount of tissue that infiltrated the mesh of the metallic stents. Dr. Gores wants me to replace them every 8 weeks to avoid any of these pesky chonangitis infections I have been having. So it was also decided that I’ll have my CT scans and reviews with Dr. Gores at the same time on that 8 weeks interval to hopefully prevent any future problems/miscommunications.
I’m pretty much at a loss for what else to say. You all know that I’m pretty disappointed. I’m afraid that the size of this tumor is pretty big now and severely limits my chances of prolonged survival (although I know some of you are doing ok with larger tumors – god bless you!).
If there is a lesson here, it is to get multiple opinions when you feel you need to. Even when you like/trust your physician. You just never know when a mistake can be made. This is what I love about Mayo Clinic. Almost everything is a team approach and is looked at by more than 1 skilled professional.
Ok, I know I’m babbling but if I did miss something, ask and I’ll fill in the blanks. Thanks for being here to let me rant.
RickJune 7, 2010 at 7:56 pm #38793marionsModerator
Rick…..positive, positive, thoughts are coming your way.
I am thinking of you.
MarionJune 7, 2010 at 5:25 pm #38792cherbourgParticipant
Thanks for the update Rick!
Try not to be nervous. Know that we are all lifting you up in prayer and are always there for you and your family.
Hugs to all!
PamJune 7, 2010 at 3:37 pm #38791kathybMember
Thanks for posting your update. I know your feeling before one of these appointments. Praying for you and your wife, too.
Did they replace the stent or clean it out? Is it a metal stent?June 7, 2010 at 3:16 pm #38790
Well I am back at Mayo now. I couldn’t have the CT scan on Friday because the ERCP made me so sick and landed me in the hospital for awhile. The radiologist briefly looked at the results to approve me getting down from the CT scan so at least I know we have a good scan – now I wait for him to read the whole results and issue a report and then a followup with Dr. Gores this afternoon.
I am so incredibly nervous for this appointment. I have a bunch of questions that I am preparring for it and I will let you all know what happens. I’ m going to spend the next hour or 2 in prayer and relaxation.
RickJune 5, 2010 at 4:01 pm #38789devoncatParticipant
Let us know what the doctor says. I have had my share of doctor screw ups but nothing like this. Hang in there and listen to what mayo says.
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