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I plan on being there! Unless something comes up. See you all then.
Day 6 after Theraspheres/radioembolization:
Fatigue is getting a little bit worse over the last few days. It probably has a lot to do with the fact that I’ve tapered off the steroids pack that I was given (a 4 day pack) and the radiation has peaked and is doing its’ thing. Even though this is a targeted treatment, there will still be some healthy tissue damaged so I’m not too suprised by all of this. The other thing that I have noticed is some increased stomach pain, which is also not too unusual if any of the beads leak out into the stomach or small intestine. I don’t think that is anything to worry about long term though, as I am told.
So it has been my experience that if you are offered a steroids pack to take after the procedure, TAKE IT! And, if you are offered anything such as prevacid to help with stomach/intestine irritation it might be worth taking that as a preventative measure as well.
We know that the results from the treatment will take some time – up to 3-4 months to tell the whole story. It’s tough to wait that long to see how effective this has been. I will have a CT scan around this timeframe and then the decisions will be made as to whether or not I’ll have another treatment and how to proceed with systemic treatment. For the time being, I will continue on the Xeloda chemo pill after my 2 week break is up. Hopefully this will keep the area of metastases under control until we know what is happening with the primary Klatskin tumor.
My hope is that if the primary tumor can be controlled with Theraspheres that I can do something more radical for the mets on the peritoneum/omentum. I have thought about intraperitoneal chemo (directly infused in the abdomen cavity) or surgery to remove the omentum. There isn’t a lot of support for this from my physicians unless the primary tumor can be controlled or destroyed. It seems like I’m always a step ahead of them!
That’s all for now. I’m going to rest today and take things nice and easy.
I wouldn’t fret too much about this considering his recent hospital bout and all of the testing, etc. that he has gone through. I’ve lost a fair amount of weight on several occassions just by being in the hospital, having to fast, or just plain because of poor hospital food.
Give him another week or 2 and see what happens. If it is a consistent lack of appetite, then I would bring it up to the Dr. – otherwise I would chalk it up to his recent thing and hospital stay.
Best of luck…
Today is day 3 and the fatigue is starting to settle in a little bit. I actually fell asleep in Church today. Whoops. I’ve heard that day 4 is the peak day for radiation activity so the fatigue may get a little bit worse. We shall see. In the meantime, we had safe travels all the way back home and have had a busy last 24 hours visiting with family that was in from out of town.
The other good news is that the puncture site looks good and starting tomorrow I will be off the lifting restrictions.
Nice and short update for today. I’ll keep posting as anything noteworthy comes up. Hopefully the fatigue doesn’t get worse but I am kind of expecting that it will.
Today was treatment day. It seemed to go pretty well. It took about an hour in total from the time I entered the treatment room until it was over. A few more things that I found out today: 1. I got a BIG dose since my study of shunting was so favorable so I got a total of 116 Gray. 2. Since I got such a big dose, I really should not have another for at least 3-4 months if it is necessary. The healthy liver tissue needs that much time to heal. 3. As a part of the protocol you get pre-emptive scripts of a steroids pack, prevacid, and anti-biotics to help prevent ulceration, acid problems, a reaction to the radiation, and to help keep up energy. 4. That physicians who have access to recent raw data are very optimistic about this treatment and indicate that studies on this data will reveal good things about this treatment.
I was especially happy to hear about the big dose and that it would be about 4 months before I would be evaluated to see if I need a 2nd dose. The break from all of this travel out to Mayo Clinic will be VERY nice. Not that I don’t think it’s the best place to be for medical care – we just need a break from here. Also, due to my particular situation and minimal shunting I could have 5 total doses of this before I reach my max on the liver. That is almost unheard of and most people have 1 or 2 total treatments, occasionally 3. I’ll push the limits and do as many as I need to as long as progress is made.
I was released and told to stay in town overnight just to keep an eye on the puncture site. It would be good to be close by if it decided to start bleeding out. So tomorrow morning we start the long trip back home and will work with Mayo over the phone if needed over the next several months and otherwise rely on my local Docs (I’m not super impressed with my local docs, if I haven’t mentioned that before). I can’t wait to get back into my own bed again though.
So far I haven’t had anything substantial for side effects for the treatments, but it is still early. The only thing noteworth is that soon after the spheres were fed in through the catheter I did experience a little bit of sharp pain. This was promptly taken care of with another dose of fentynal. I’m still waiting to see what the fatigue is like because I’ve heard that is a crushing side effect. Hopefully that one just skips me completely.
So – as I promised – I will keep updating this thread until I feel that I’ve offered up all of the information I think could possibly be useful to someone else. Pardon me if it gets a little bit wordy or if much of what I say doesn’t apply, my intention is just to help others considering this route of therapy in the future.
Thank you all for your outpouring of support as well. Several of you have visited my Caringbridge Website and left some encouraging comments for me. It is much appreciated.
I also wanted to let you know there is a new medication that has been shown to do wonders for confusion from high ammonia caused by Hepatic encephalopathy. It is called Rifaxain or Xifaxan and it is an antiobiotic. This is considered to be mostly an off label use right now, but in patients with liver disease hepatoligists are prescribing this medication frequently to deal with the high ammonia.
You might want to ask your Dad’s oncologist. If he doesn’t know the details about it, perhaps he could look into it or contact a hepatoligist who could help. I personally know several folks that have severe liver disease and whom this medication helps substantially.
Best of luck to you and your Dad!
I will try to make it – have appointments at Mayo until probably about 4:30 est so I will be a little late but hopefully will still catch you.
I understand your frustration. Perhaps a little bit of persistance with the surgeon’s nurse or assistant may help you get it moved up a bit. I’ve found that surgeons are usually booked up in advance and sometimes it takes some manuevering and coaxing to let the right people know that this is an URGENT case and not someone having a much less urgent surgery performed. At a major center, you should be able to get this done within a few days – so if you really want to get it done soon maybe you can try that. I know that Mayo was prepared to have a surgery for me if I was a candidate within a day or 2.
Good luck to you. I hope the tumor is resectable and that the surgery goes well. This must be an anxious time for you.
Well………….. I am packing my bags right now and leaving tomorrow morning for the trip to Mayo. I must say it hasn’t gone as smoothly this time around for transportation and lodging, but it will work. I’m quite anxious/nervous about the upcoming radioemobolization procedure with Theraspheres and I hope that it is effective and kicks this cancer’s butt. So we arrive Wednesday night with some bloodwork and planning appointments on Thursday and then the procedure Friday morning. I am to stay overnight to make sure that there is no bleeding from the entry point and then we travel home on Saturday.
I will let you all know how this goes and then at the followup CT scans how effective it has been. Hopefully this collection of data will help others as they make treatment choices down the road.
Thank you all for your support and help.
Worriedson, I agree with marions fully that a 2nd opinion with someone who has a good deal of experience with this cancer would be a great idea. I’m not sure of contacts at MD Anderson, but Dr. Gores as Marions mentions is a great physician and he is now at Mayo Clinic in Rochester (not at MD Anderson currently, but may have been before?) He helped to implent the now widely used Mayo Protocol for liver transplantation for unresectable cholanciocarinoma (or those arrising in liver disease patients).
I am sure there are probably some folks that are specialist in your area or at MD Anderson, too. I’m sure some more experience in that area will be around soon.
If your Dad is just getting over an infection then that could certainly be the cause of the elevation in ALK PHOS. Looks like his other liver functions are good, so not even close to liver failure! Bilirubin takes time to come down after a stenting procedure. It sounds like he has an external drain – have you thought about an internal stent at all? These do a great job of drainage and there is no bag to contend with.
I would ask for some followup bloodwork in a few days to see if that Alk Phos comes down because it could be a signal that the infection is still looming. Your Dad should stay on the lookout for other signs as well such as fever, chills, pain. But it could just be that it takes awhile for this enzyeme to return to previous levels after the infection.
Dr. Gores advised me against PDT also (I agree – a fantastic physican!). I made the argument to him that I wanted to try a targeted therapy since my mets seem to be under control and the radioembolization/theraspheres is what we came up with. I’ll keep you updated on how it goes.
Funny you ask about my gallbladder. It’s also distended quite a bit and my cystic duct is occluded. This is the cause of most of my pain and I’m taking some heavy duty pain meds because of it. I’m not sure about any cancer being there, but it is suspicious because of the blockage. I also have PSC liver disease which could potentially cause this also.
I also have the metallic stents in at the bifurcation. One into each main hepatic duct. They have done pretty well for me, but they became blocked with sludge a few months back and when I had an ERCP to correct it they placed plastic stents within the metal stents.
It seems that there are a lot of people lately that have gone through Mayo protocol and get disqualified at the staging surgery. What a bunch of work and sacrifice to go that far and then not get the cure.
It looks like we’re neighbors. I live near Muskegon. We have more in common as I went to Mayo in Rochester for workup for the transplant protocol and was declared ineligible at the time of the staging surgery – after going through all of the transplant workup, etc.
The one thing that I am doing at Mayo next week is a different type of brachytherapy called Theraspheres which is supposed to be very effective and I hope that it will do a lot of good in battling my primary tumor (my mets are in the peritoneum).
I have found that my local oncologist really doesn’t have a lot of experience or ambition in treating my CCA, but he is willing to follow the lead of my Dr’s at Mayo.
Welcome to the place that noone really wants to be. I hope that things go well for you moving forward. Maybe you could look into Theraspheres at Mayo as well? I assume that you met with Dr. Gores at Mayo – he is the one that is giving me the green light for this treatment.
Alk Phosphatase is an enzeyme that is let off by the bones and by the liver. It is elevated in liver conditions when the bile ducts are inflammed. My own levels seems to fluctuate quite a bit and also get high when I have an infection coming or already onset (called Cholangitis). That would be the biggest concern and is easily treated with antibiotics. So, your Dads’ physicans should be keeping an eye on that as well as the other Liver Function Test (AST, ALT, AlK PHOS, Bilirubin).
The Alk Phos level by itself does not mean that he is in liver failure. It is the other levels such as the AST and ALT which are more meaningful for liver damage and function.
Best of look to your and your Dad.
Gavin, that sounds good to me. I’ll check in tomorrow to see if it’s working but if not then will try next week. I hope that this catches on. (By the way, I am not the Rick that does all the great work on this website – I am just the Rick that suggested setting up a set time for the chat).
It will take some work to get this into a routine, but I think it will be well worth the efforts. When I did this at the J-pouch.org site it was a huge hit and it was great to chat in real time with dozens of others in the same boat.