jur777
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Love to hear the good news Kris. And would love to hear about the Swedish summer now that you can enjoy it some.
Yes, send reports to other doctors. Even if you’re happy with the doctor you have, some times for convenience sake you end up with another doctor or group of doctors. That’s what happened with me and it’s worked to my advantage so far.
Walk- for what it’s worth, I had a CE combo of oxaliplatin, mitomycin and doxyrubicin. I did not have much nausea but the fatigue really kicked my behind for two weeks after treatment.
I really haven’t had any problems with endoscopies – they knock me out each time when they do them, so the only side effect is a slight sore throat for a day or two.
These posts are so encouraging. Congratulations. It’s very inspiring as I start my chemo regimen today that other people are scoring positive points.
Something else that inspired me today was a letter I received from a friend… Pardon me for digressing, but he said this:
“John, your fight is not over, not by a long shot. You wrote at some point that maybe you would be the ‘miracle kid’… But it’s kind of like the old paradox of Predestination – – You are saved already, but you should nonetheless demonstrate this fact by the way you live your life. In other words, you ARE the miracle kid, so live like it.”I found this little bit to be especially motivational – no matter what age you are diagnosed with cancer, we can all be miracle kids.
Jean et al. – Thanks for the support.
Plitidepsin is a new drug being developed by PharmaMar which is a Spanish drug company. This is a Phase 1 trial so it still has a ways to go before coming to market. I believe it is a cytotoxic drug like Gemzar which kills cancer cells (and healthy cells) directly. The only places where this is being tested are the Cancer Institute of NJ and some place in France.
Jim – I get night sweats off and on as well. One oncologist I talked to mentioned offhand there is a medicinal remedy to this… I’m not sure exactly what it is. You should ask.
My tricks for dealing with night sweats:
1. I try to wear wicking shirts to bed (any material that pulls the sweat away from your body). This doesn’t stop the problem, but helps me to dry off quicker sometimes without changing shirts.
2. I occasionally sleep on a towel.
3. Down blankets trap the heat too much for me. I prefer cotton blankets and sheets.These remedies only allow me to ignore the problem while I’m trying to sleep. You’ll still probably have to wash the sheets more often.
Good luck.
JohnWhen I first started treatment about 3-4 months ago, I thought I would be doing myself a favor by combining some alternative treatments (diet and supplements) with traditional (chemoembolization).
I do not want to put down alt treatments – we all could prob use a change in diet and I think that supplements are helpful – but I ended up losing too much weight too quickly and it severely effected my mood. I went into depression and if you are feeling sad/depressed, it is EXTREMELY hard to fight at all – traditionally or alternatively.
So my advice, for what it is worth, is go forward with diets and supplements only in so far as you can handle it. Any one of them might (or might not) work, but most importantly if you lose faith in them, come back to the things (foods) that make you happy and keep on weight.
Rose May – If your Bili’s haven’t dropped to close to normal (~1) than I would imagine that things are still not draining correctly. I’m not sure how the pain works in (maybe the stent is dislodged or something), but I definitely wouldn’t be satisfied with the doctor’s work until things start draining.
Elizabeth – Like everyone else, I send you best wishes. I wanted to comment on your experience with Memorial Sloan Kettering re: Cholangio. When I was first diagnosed, my local gastroenterologist recommended I see someone there. Before I got the chance, my gastro and the doctor he recommended spoke on the phone and I was quickly referred to Mayo Clinic in MN, thinking they see more CC cases and have more advanced techniques.
After Mayo, I was looking for east coast locations for microsphere treatments (SIRspheres or Theraspheres). MSK does not (at the current time offer this). So, through my own experience and thoughts, it seems that although Memorial Sloan Kettering may be a great place for many different types of cancer, it does not seem to be the most advanced place for cholangiocarcinoma. Even Mount Sinai in NYC seemed to be a bit more up to date.
Again, this is all my personal opinion.
David – Sounds like good news. Congrats. One thing I learned from one of my PET scans is that there is always a build up of glucose around the kidneys and bladder – just the way the stuff pools together I guess. So yes, agreed, best to leave the evaluation to the experts.
Best of luck for continued good news.
-John
I had a chemoembolization procedure using doxorubycin, mitomycin-C and cisplatin. Since the procedure I’ve been dealing with night sweats almost every night – but not a fever. One oncologist I spoke to said there is a medicine for night sweats (which I will ask about again the next time I see her).
They used three drugs for the TACE: Doxorubicin, mitomycin-C, and cisplatin.
The past three days have been a rollercoaster. I felt perfectly fine on Sunday. Then Monday, I felt nauseous and had to vomit once in the morning (dulling my appetite for most of the day) but now today, I’m back to feeling good again.
The trials and tribulations, I guess…
Vincent – Hopefully, I’m too late in responding and your mom’s BR levels have come down, but from what I was told at the Mayo Clinic it’s often common for BR levels to jump after a stent placement – especially if the test was run that day or the the day after. My BR levels were fine before getting a stent for my gall bladder and then after it’s placement, they jumped to over 3.0. It took a few days for them to come back down as the gall bladder drained and things got back to normal.
Please let us know the outcome. I’m interested to see if the levels drop naturally.
-John
