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Hi Rick,

I hope it all goes well and I will be keeping my fingers crossed for the best possible outcome for you. Tons of good wishes and positive thoughts coming your way.

Best wishes,

Gavin

Will be sending positive thoughts you way Rick - good luck, hope it goes well!

Jen

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.

Rick

Rick....wonderful news.  I am wishing for a quick recovery and an uneventful trip back home.  BTW:  I love "wordy."  And, you are so right in that all information is so very beneficial for all. Thank you for your kindness of taking the time to share with us.
Get well soon.
Best wishes,
Marion

Hi Rick,

Thanks for all of your updates and I know that they will be of great help to all of us. I am glad to hear that your treatment went well and that you had a safe trip home. No apologies are ever needed for your "wordy"posts as you put it, and everything that you say is relevant here and helpful to everyone. I am hoping that your fatigue doesn't get any worse and that you start to feel better real soon.

Best wishes,

Gavin

Rick,

I so enjoy your posts because they really are so informative.  Here's wishing that you get over the fatigue quickly and only find the fatigue from being with your girls!  Good luck with everything.

Linda

Keep strong Rick and rest up. That radiation sure can put you to sleep. Falling asleep in church is okay too. God knows what you're treatment is. LOL

Rick....I am with you on looking forward to your " next step".  I hope for your to recuperate real quick from the last treatment.
Best wishes,
Marion

UPDATE/DAY 11:

Where did that truck come from?  I feel like I've been run over by an 18 wheeler today.  The fatigue and general pain/unwellness really hit hard today.  I can't figure it out.  It might have contributed that I didn't get a good night of sleep and I think the pain meds I took made me nauseous.  I just don't know what to think - most of the literature about this procedure says that the recovery is worst a few days after treatment and generally better by day 10.  It looks like I am an exception to the rule once again!

The other new things are that 1.) I notice a tinge of yellow in my eyes.  Not sure if it is jaundice yet but it is looking that way.  It's possible to get toxicity from this treatment which causes the jaundice so hopefully it goes away as my liver heals.  2.)  My abdomen has a full/bloated feel to it so I wonder if I am holding any fluids.  If there is some toxicity to the liver this could certainly cause it - but so could the cancer and especially the mets in the peritoneum.  3.)  I'm not looking forward to starting up chemo again on Thursday.  But - I know it is quite necessary as I've been off for 3 weeks now and I need to keep those mets at bay.  4.)  I've been nauseous all day and I think I am starting to get dehydrated - so trying to drink as much water as I can without it coming right back up.

I am glad that I researched ahead and know that some of these things can happen with this treatment.  If I had not, I would probably be really concerned right now.

I will post back again in a few days with another update of my experience.  I am still very optimistic that this treatment will be effective and extend my life.

Rick

Rick...This must be the same truck many others have spoken of.  I hope for you to feel better a little bit more, each day.
Best wishes,
Marion

Update: Day 16

I feel great today.  Yesterday was an entirely different story!  I was put into the hospital for the day yesterday because I had severe pain, dehydration, fever, and chills.  I'm not sure exactly what caused that, but I wouldn't be suprised if it was the beginnings of a cholangitis attack.  I was pumped full of fluids (4 bags!) and antibiotics and that seemed to help tremendously.

The other thing that I found out is that my bilirubin has risen sharply since my radioembolization procedure 16 days ago.  It was at 3.4 yesterday (normal range goes to 1.2) and it was within the normal ranges when I left Mayo 2 weeks ago.  I really doubt that my stents have become blocked in that short of a period of time or that the tumor has advanced because of the theraspheres treatment, so my best guess is that it is a toxicity from the treatment itself.  I also know that it "can" damage the bile ducts and I was at increased risk for this because of my underlying liver disease.  So I guess now it is a waiting game to see if it gets any worse or if it improves.  If it gets worse, I suppose I will be off to Mayo soon to have everything checked out since my local GI's arent' comfortable (or capable?) of managing my stents or performing the ERCPs.  I'm really hoping that it will just subside and that it is just a temporary toxicity from the radiation in the theraspheres.  That theory makes the most sense to me given everything else.

But as I mentioned at the top, I am feeling quite well today.  There is no sign of yellowing in my eyes or skin (it seems to be intermittent anyways), my pain is mostly resolved, and I have some energy again.  Ohhhhh sweet energy!

The verdict will not be in on this treatment for some time yet but I like to post about all of the little details along the way.  When I have my CT scan to check on the treatment I will be able to complete this thread.

Rick

Rick, I have gone thru the same thing many times.  It seems to me that the infection is always burbling away, and when it starts to get inflammed in the bile duct area, it blocks the drainage and the bilirubin goes up.  I've learned to take antibiotics at the first sign of dark urine and overall malaise in order to nip the cholangitis in the bud.

Also the plan for me is to be proactive on stent replacement.  We are not going to wait until I am sick and in the hospital with blocked stents.  We are going to replace them every 6 to 8 weeks before they get blocked.  My first ERCP on this new schedule is this Friday to replace the stents that were put in on July 1.

Rick,
Thank you so much for how amazing you are to share your journey with all of us.
I hope you know how helpful and hopeful it is to read your posts.  My daughter's dad had very similar symptoms in the last month that turned out to be cholangitis and he ignored the chills for several weeks...then while visiting his son in Wisconsin (we are in California)...he became septic and the massive fluids and antibiotics given there gratefully did the job and he recovered...I thought Lisa's idea was a really good one to be proactive and not wait...we have learned our lesson!!  My daughter's dad is also named Rick and has almost identical course as yours but now is in the stage of chemo not being effective...his C19 has doubled and I was just looking at the site for ideas on where we could go next...I don't know that he meets the criteria for your treatment but I will research it further.  You truly are our pioneer and I, among others, am very grateful for all that you have shared.  Keep fighting and our family's prayers are with you!! I will look forward to your posts and thank everyone on this site for your encouragement and sharing your journey.
Gaye

Last edited by savingrace (Wed, 18 Aug 2010 23:19:50)