jur777
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Something I also forgot to mention about my chemoembolization procedure:
Originally, the procedure was denied by Aetna Insurance (they approve it for HCC).
After a peer-to-peer phone call from Dr. Jeff Geschwind (head of Interventional Radiology at Johns Hopkins), they decided to approve the procedure. It was only for this reason that I was able to get everything done so quickly after seeing Dr. Geschwind for a consultation.
Just wanted to let everyone know how my two days after chemoembolization have gone. Yesterday, which was my first full day home from Hopkins after the procedure, was a loss of a day. I was extremely tired – seemingly sleeping two hours for every hour that I was awake. My appetite was low and I was basically in a cloud for most of the day. In the evening, I developed some low grade fever 101 F. But this was after feeling cold for most of the day.
Today has been much easier on the fatigue and appetite front, in the sense, that I had more of an appetite today – almost back to normal – and my fatigue was much lower. However, the annoyance today has been my body temperature. Although the thermometer is reading 98.6 – 99, every 30 secs to two minutes, I’ve had to deal with chills or sweats. Take my sweater off, put it back on. This has been tiring… I haven’t been able to find a comfortable position to rest in all day. But if this is the worst of it all (more an annoyance than anything else), I’ll be happy if my recovery continues so rapidly.
I did not take any pain medication today. Just one anti-nausea med in the morning (more for prevention than nausea), and my antibiotic. Hopefully, things are looking up, and looking up quickly.
what would you consider a tumor shrinking drug? any opinions on what seems to be the best combo to get that tumor to shrink?
Jim – I’m right down the street in Sewaren (Woodbridge) NJ. right now I’m going to Johns Hopkins in MD for treatment. They’re one of the best in the country. I got opinions from Mount Sinai and Mayo Clinic in MN as well as an oncologist that works at Robert Wood Johnson.
If you want to talk more about it, you can email me at john@johnur.com
Ann – I was looking into radioembolization treatment (theraspheres) and besides the Mayo clinic in MN, there are only four other places that were using them regularly (mostly for clinical trials). The two near you are:
Illinois Northwestern Memorial Hospital, Robert H Lurie Comprehensive Cancer Center Chicago, Illinois,
Wisconsin Medical College of Wisconsin, Froedtert Hospital Milwaukee, Wisconsin,
So maybe you are at a good place for CC.
FYI – The others were Johns Hopkins in MD and a hospital in Albany, NY
Hi Stephanie – We all understand how crazy and scary this thing can be. I’m only 29 and have no idea if I’ll live to see 40. I have been reading Patrick Quillin’s book “Beating Cancer with Nutrition” – some other members of the site have recommended it too. Whether it will help or not remains to be seen, but the book helps me to remain positive and optimistic and makes me feel like there is something I can do every day to try and help myself.
I’ve heard that Northwestern in Chicago is very strong in treating this disease.
Suzanne – I’m just about to start chemoembolization (maybe radioembolization afterwards). It seems like these are some of the best treatments because they can localize the radiation and chemo. I wouldn’t be too nervous about it. It’s a great opportunity for some of the best new treatments. We may have to go through some side effects but hopefully they’ll be minor and the treatment will be effective.
Wishing you strength.
JohnLainy – That is so encouraging! You went to Mayo (Rochester, MN) for it correct? I have my consultation with the medical oncologists here tomorrow and I’m hoping they see me as treatable with CyberKnife.
Continued wishes for good luck
John
Wayne – Thank you so much for all of the great, detailed information. Gives me alot of hope. The oncologist that I was recommended to is Dr. Axel Grothey. My gastroenterologist initially recommended a Dr. Fong at Memorial Sloan-Kettering. After Dr. Fong reviewed my records, he recommended Dr. Grothey at Mayo.
I should be getting an appointment call from Mayo on Monday or Tuesday. I’ll be sure to update everyone as things develop.
Many thanks again
John
