New treatment plan
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Rick,
I’m glad you’re feeling better. I think the treatment itself can make you tired and that underlying infection can really wipe you out. I’m glad you got treatment right away. I agree with Lisa too, you should never wait until your stents are blocked and you are really sick- you need to be proactive. I’ve seen my husband go from feeling really well and “normal” one day , to being so sick we’re on a dead run to the hospital the next. It’s really crazy. Take care and best wishes for a very successful outcome. Thanks for keeping us updated! MaryRick,
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.
GayeRick,
You really are an inspiration to all (especially me). Thank you so much for your diligence in posting. It’s great to hear you are feeling great.
Here’s to hoping that the “greatness” continues and this new “possible” problem will not surface and just go away.
Hang in there.
Linda
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.
Dear Rick, we feel proud to go on this journey with you so keep posting this thread as we espically love it when you are feeling top notch. I am also sure that your posts will help others in your same situation. I love rading what and how you write. Feel good! Your cheer leaders are all cheering.
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
Hey Rick, I think I saw that truck. Hang in there. I know things may take some time to pass, but you know from experience it does.
Best wishes, and with God’s speed in some recovery soon.
Linda
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,
MarionUPDATE/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
Hi Rick,
Thank you very much for another update on how things are going for you. I hope that you will feel a bit better today and that the fatigue is not as bad.
Best wishes,
Gavin
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,
MarionRick,
You are such a strong person. Even despite your side-effects and what you are going through, you are thinking of how your treatment can help others. Thank you so much. Everything that I see on this website I hope to “store” away for my possible future use, and your posts are many that I hold on to.
Hang in there. I’m sure you have gone through worse, and this is just another step forward. Way to go in bringing up something your doctors haven’t yet! Keep them on their toes.
Best wishes,
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
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.
Rick
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