rick-kamp
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Lainy,
I’m so glad that you are both coping so well. You’ve had a miraculous run and it isn’t over yet! You are so giving and unselfish with all of the efforts you make here and yet you are in the middle of your own battles. God bless you.
Rick
Pam,
Welcome to this group – sorry you have to be hear. Your Dad’s story is not uncommon because this cancer is often difficult to see on imaging tests. The same thing happened to me, in a way. I was doing the Mayo protocol for a liver transplant to treat the cancer, but at a staging surgery it was found to have spread.
As for the question of how much time is left – that is one that is just so variable by the experiences of so many on this website. Some are doing quite well and going on several years while others seem to pass quickly after diagnosis. I wish there was a chart that we could be input a couple pieces of information and output a survival time – but there is not. The ones that seem to do the best and have a suprising fight in them seem to be the ones that try chemo and change drugs every time they become ineffective as shown by cancer growth. I am now moving onto my 3rd chemo regiment and hope that it gives me more success than the last. I’ve had CCA for at least 11 months now, but I’m certain I’ve had it much, much longer than that.
I wish your Dad and your family the very best of luck. This is a tough boat to be in, but somehow we all manage. You will be in my prayers.
Rick
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.
Rick
Good thread and good list. After my most recent trip to Mayo and finding out that my local radiologists SUCK I have a new one to add:
*Radiologists who simply MISS a 4+cm tumor on CT scan staring them in the face. Seriously, did you see it and forget about it or something? This is my life you are working with here.
Rick
Lainy,
So sorry to hear about the surgical consult. It sounds like that cancer is being a buggar now. Is it worth trying to get another opinion on it? I’m sending prayers your way and wishes for this to get figured out!
We were just in Milwaukee for a few days, sounds like we are just missing each other. I hope you have a good time there.
Rick
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.
Rick
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.
Peace.
Rick
Gemzar/Oxaliplatin shows fantastic results and it is less toxic than Gem/Cis. This is what Mayo Clinic recommends as a first line treatment. The Oxaliplatin is still a platin based drug like Cisplatin and is still effective in combo with Gemzar, but less side effects.
I was on that combo for about 6 months until I started getting a rash/reaction to the Oxaliplatin.
Rick
Thanks for all of the replies. Unfortunately, I wasn’t able to have the repeat CT scan done yesterday at Mayo. My morning ERCP ran long and I had some pain management problems afterwards so I missed my time to get the CT scan done. Soooooo – I am staying here until Monday and have both the CT scan and a consult with Dr. Gores as soon as those results are in.
I know that Dr. Gores has several recommendations for treatment if this is all confirmed but he didn’t go into much detail yet until he has this confirmed.
I did go through my prior reports and re-read all of the Radman’s comments and even looked at the images on CD. (How convenient that I had to hand carry all of this to Mayo and they just made copies and handed the others back to me). After I learned what to look for on these scans, even *I* could see this area on the scan going back to November. I know that I’m no radiologist, but sheesh the guy should have asked for a 2nd opinion if he had any doubts about it. This is my life he was messing with.
I have very strong feelings about goiong through 6 months of chemo treatments that would obviously have been stopped as being ineffective. But since the scans were not read properly, the oncologist continued on. What if a different chemo combination would have worked better? What if this mistake costs me valuable time with my family? What if I endured chemo treatments when they truly were not necessary (or on the wrong combo?)
I’m not the kind of person who likes to “lawyer-up” but I certainly think I have a right to know what this radiologist was doing or when the last time he had his eyes checked, etc.
Rick
Thank you all for your support over this. I’m still at a loss for words to explain how upset we are about this. I don’t understand how a radiologist can miss this – and it takes only a few minutes for a hepatologist to find it. This is my life that they are playing games with – and that is exactly what they had to have been doing – playing games!!! I took out the CD and loaded it on my laptop to do side by side image comparisons. Even I can it sitting there over the last 3 scans.
I guess I should reserve my anger until after today’s repeat CT scan and the radiologists here at Mayo read it. And I can hope that maybe these spots were just some kind of artifact in the same spot on all 3 previous scans.
Rick
Thanks for the link Kathy. It sounds like anesthesia is possible for the procedure but as you say I need to provide all the records. In addition, my oncologist decided it would be best for me to cancel today’s treatment in advance of the ERCP on Friday. So, I think I am all set. I’ll report back and close out the thread when I find out details from the anesthesiologist.
Rick
It seems like there isn’t much info out there about this. I’ve searched this site and elsewhere on the internet and cannot seem to find any publications about it. So, I suppose the plan is to call my chemo nurse on Tuesday AM and ask her then, since everything will be closed up for Memorial Day holiday on Monday.
I was hoping someone here has some firsthand experience with this.
Rick
I hate the rash that Tarceva causes. It makes me look like the worst pimpleheaded teenager in town.
I hate that colon cancer ultimately led to a colectomy and replacement of the colon with a J-pouch. It’s continent, but not nearly as functional as original equipment.
I hate that I have lost a lot of my muscle mass and feel weak most of the time.
I hate so many little things AND big things about cancer and my health condition. Perhaps the thing I hate the most is that I never saw this coming and there is nothing I could have done to prevent it or cause it.
I could go on and on also, and it does help to vent a little bit sometimes. Sometimes the reality of having terminal cancer rules every aspect of my life. But when I realize that, I ask God to help me perservere through the little things and then the big things too. Yes, the route my life has gone has caused a lot of difficulty and trials. There is no doubt about that. But, I have been given the ability to perservere through it. I can’t say that I don’t long for the day that I no longer need to ‘perservere” and can be joyful and painfree all of the time.
Rick
M & T,
Good news back from Mayo Clinic, hopefully they will be able to follow through for you and get the internal squared away. They are supposed to be among the best for this, so you are in good hands. I’ll be there this coming week so I probably won’t be there when you are. Lets hope that they can get both of us squared away and on a better path.
Best of luck to you both.
Rick
