PDT is helping me!
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Actually, no I don’t normally windsurf in the winter unless we get a warm stretch. It does happen sometimes. Right now I’m getting ready for a snowboarding trip. Been doing that for a long time too.
A big limiting factor is sensitivity to light due to the Photofrin. I have learned the hard way, a couple of times, what a severe burn you can get. A big help is the protective clothing I’ve gotten from Coolibar.com. This stuff really works. The material is cotton and bamboo fiber with zinc oxide woven into it. They claim 98% protection, and I think that’s about right. But 98% is not good enough if you are going to be right out in the sun for significant periods. It does allow me to be out and about though.
I’m timing my outdoor sports for six or more weeks after the Photofrin treatments. Next PDT is in April, so that means late May through July will be good for outdoor stuff. Of course, the chemo and stent replacements put a damper on things at times. But hey, I’m happy to take what fun activities I can get!
Rohrbork…thanks so much for sharing. Your water sport activities sound great however; can’t imagine you doing this in winter or, are you?
Also wanted to mention that plastic stents last anywhere from 1 to 3 months (on the average) for all the reasons you explained so well. I know that it doesn’t give much comfort, but you are somewhat near the higher end of the spectrum with the 8 to 9 week of duration.
You sound good, Rohrork, and knowing that you are able to pursue your most loved activities makes for a wonderful report.
Hugs,
MarionThanks for the detailed scoop! Your experience may help many people to know what to expect. My best to you for stable health and much adventure on the water!!
One more thing about the PDT and stents: the stents tend to get plugged with bile stones and bacterial infection. I’ve never been able to make it past about 8-9 weeks without getting them replaced. It would be much better if they would last till the next PDT (12-16 weeks). I’m taking ursodiol to help with the bile stones, but they still get plugged. Then my liver function goes in the wrong direction, bilirubin goes up, leading to itching, jaundice, and dark orange urine. It’s always a real relief to get those stents replaced and reduce those symptoms! When they just replace the stents (endoscopically) the recovery is pretty quick as long a I don’t get an infection.
I’m receiving PDT every 3-4 months. Had four treatments so far. As mentioned before, it has opened up my bile ducts so that more stents could be placed. I receive the Photofrin infusion, then they do the procedure two days later. The stents are removed, the ducts cleaned out by dragging a balloon through them I think, then a cold laser is used to zap the tumor from inside the bile ducts. It doesn’t get rid of the tumor, just backs it off. Then new stents are inserted. This is all done endoscopically, under general anesthetic. My last one was done as an outpatient procedure, instead of staying one to two nights in the hospital, as was the case before. The doctor says they are having good success in sending people home the same day, as long as there are no risk indications.
It takes me two weeks to fully recover each time. The treatment roughs things up in there and I have some pain and indigestion. Ibuprofen is normally sufficient for me. Maybe something stronger the first day. I get better each day, feeling fairly good after 5-7 days. And of course I need very careful protection for six weeks of more due to the Photofrin.
Overall, I’m very happy with the treatment. I’ve been able to get back to windsurfing, which I have been doing for a long time, and its my very favorite thing. Plus paddle boarding, swimming and sailing.
Great to hear! You’ve been through a lot but sound like you’re enjoying life to the fullest! I am also interested in your experience with PDat. How many TX does it require? Thank you for sharing your story. I truly hope your hospital doesn’t drop apDT as a tx option.
Rohrbok…welcome to our site and congratulations on your success with the current treatment. What a relief it must be for you to rid yourself of the bothersome external stents. Sounds like you are fairing rather well and are able to participate in some of your favorite activities. What type of watersport does you enjoying most? Rohrbok, we have few reports on PDT and would love to know more about your the symptoms you are experiencing.
So glad that you have joined us.
Hugs,
MarionDear R. WOW! You have really run the gamut but it is great that you are responding as you are. I too am hoping and praying that nothing is cut from the treatments our members need with the ACA. You are a very positive person and that helps as well. I am wishing for you to keep that improvement improving in the right direction. Best of luck to you! And please do keep us posted.
I’m receiving PDT from Dr Loren at Jefferson, and it has really improved my quality of life. I was diagnosed with CC in Dec 2011. The surgeons thought resection was feasible, but when they went in last January it was too extensive. Two internal/external stents were placed, which allowed me to keep going. But I had to carry bags, and get them replaced periodically. Then I started PDT, and after the second PDT they internalized the stents and I now have four of them. It takes two weeks to recover from the procedure, and I need to avoid the sun for at least six weeks (I’ll post more on that later). But I’m able to do water sports again now, plus many other things. Big improvement!
The bad news is that Jefferson is considering dropping the PDT program due to the Affordable Care Act and their losses on the procedure. Hope that doesn’t happen!
I’m also receiving chemo (cisplatin and gemzar) in between the PDT treatments. Will start my 12 th cycle next week.
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