jim-wilde
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We need to lean heavily on the Secretary of HEW to change this insane policy, if in fact, Medicare still disallows coverage.
Medicare used to require a ‘study’ for a cardiac patient to get an AICD (pacemaker/defibrillator). The ‘study’ included inducing an arrhythmia in the patient, with potentially fatal results. Medicare has since reversed itself on this crazy policy. The apparent genesis of this policy came about when some genius in the Social Security Administration realized that as many as 250,000 per year could benefit from the technology … then came the realization, “How are we going to pay for this?” Thus came the gatekeeper policy of a ‘study’. At the time I had to go through this nonsense, I wrote to my US Senators, Congressman and the Secretary of HEW. Only one Senator even had the courtesy to reply, but it was clear his aide who replied didn’t even understand the policy in question.
There are clearly some circumstances where transplantation for cc patients makes medical sense, and this needs to be forcefully presented to the appropriate administration officials. This is another case of the government denying effective and needed care.
The next program, Thursday Jan. 19 will focus on “Are you waiting for test results? Are the Drs. telling you everything?” Call in number is 610-664-4100 between 12:30 and 1:00 PM EST.
Let’s Talk Cancer
Listen to Let’s Talk Cancer with Kim and Denise over the internet from anywhere:1. Go to http://www.wwdbam.com/
2. If it’s 12:30 PM, you may listen live by clicking on “listen now” just below the ON AIR sign… OR
3. Scroll down to Thursday programming and Let’s Talk Cancer
4. You may select the ‘>’ to listen or download to download and listen at any time convenient to you.. Download is available about 2 to 3 hours after each live broadcast.
WWDB-AM 860
http://www.wwdbam.com… OR
For all you iphone and andriod users you can listen on your phone download the free app “tunein” and search for WWDB 860
Kris, I’m with you on the cure deal!
Margaret, I think I just have to be more patient. I worked years in a world driven by numbers, and just find it unnerving when they don’t mean much. This cancer just makes us more than a little paranoid!
Thanks again for all the thoughtful responses.
Bob, your guidance is invaluable, since you have walked the walk. Thanks for your input. I am slowly learning to live with this monster, and I too, will not let it take over my being. I accept the atta boys, and think you likely deserve way more. I have learned to hate cancer of all sorts, but most specially cc! I guess I need to put the most weight on the PET/CT scans, and just keep chugging along.
Derin, one thing I’ve learned, is Gemzar or Gemzar+Cisplatin are the standard for adjuvant chemo following a resection, although many do nothing at all. I had six months of Gemzar only, 2weeks one/one off, for six months right after a successful resection. I was never a candidate for cisplatin (cardiac issues ruled it out). All that said, there’s no effectiveness guarantees with the chemo, just a hope that it improves your odds of staying clean.
Good luck with your treatment.
Eli, my dear wife reminded me about the quality of life during chemo, so I think we’ll approach this with some caution. I’ll let everyone know after I see my onc mid-February.
Lainy, I don’t like doing nothing, when something is clearly going on. I think my visit with the onc next month will include a question about the wisdom of doing chemo again.
Pam, it was nice to hear Gio and his rock solid support of Lauren. … and all those things you said about Kim and Denise are true. I’ve known Kim almost a year now, and she is one special girl.
It was also nice to hear from Jennifer, calling from Texas as well.
Link to South Phily Review article:
http://www.southphillyreview.com/news/features/Cirucci-talks-cancer-on-WWDB-890-137128513.htmlThe slow results must be a Canadian thing. About half of my scans have been ‘wet reads’, results within an hour or so. The others, next day. We may ‘catch up’ with Canada with Obamacare, if it doesn’t get repealed or the US Supreme Court doesn’t rule it unconstitutional. For now, things are good, though.
… and I should add, the scans have been done at a huge NYC hospital with 29,000 employees. The whole place is uncommonly responsive to patient and doctor’s needs. I just love the place! It’s just horrible to love a hospital!
Interest in the program is really starting to grow rapidly now. A local paper, the South Philly Review is doing a feature article on Let’s Talk Cancer, which should be in print (and on-line) Thursday http://www.southphillyreview.com/. The Phila CBS TV affiliate is also planning a news piece on the program. Facebook hits week to week have doubled each week. I just hope the girls don’t run out of money!
The next program, Thursday Jan. 12 will focus on relationships: need your stories, love stories, break ups, dating. Call in number is 610-664-4100 between 12:30 and 1:00 PM EST.
The process shouldn’t have taken long. In my case, it took a total of ~ 8 weeks. I would not recommend ‘no treatment’ path. Surgery is the only ‘cure’. I’m surprised you did not have an ERCP, which is a pretty definitive procedure for nailing cc. Where are you being treated? If it’s not a major cancer center, you’re not giving yourself a good chance. The symptoms go from almost none in the beginning for many patients to downright nasty as the disease progresses.
BTW, the surgery, if it’s a resection, is not that bad. I was home in less than a week. If the incision didn’t have infection, it would have been very routine, and not very painful at all. I think I used a total of two pain pills after discharge.
This is a rare cancer and few surgeons and few hospitals have experience with it.
