NPC

Kent Cass

Did an intriguing NPC search this AM- finding a 3-part NPC seminar you tube on Google with five C Specialists, at what appears to be a meeting of C Drs. A Swedish Dr is the MC, and there's an Asian, Brit, and American Specialists. NPC was the specific C being discussed. I'm not sure what year it is from, other than it's within the past couple years.

Of note, is the conclusion that Concurrent chemo and rad treatment is the route to take.

ALSO, it is noted that the problem with first getting chemo, alone, for a 9-week time is in some cases NOT a good thing, as it is the radiation that actually eliminates the C at the C site/Primary, and getting only chemo does not stop the problem C area from getting worse- which is why getting radiation from the get-go is critical, at least for NPC. So, for all with NPC- well worth your time to watch all 3 episodes.

The recurrance issue w/NPC is also discussed, I must warn, so one must be prepared for it. Also, the Epstein-Barr/Mono virus is spoken of extensively, and leads me to a question- Is there a blood test that can be done to show any possible red flags for an elevated EBV level that might be a sign that the body is losing it's immune battle with EBV, and said EBV is leading to a recurrance?

kcass

Also of note is the British government healthcare reluctance to allow Pet Scans, due to their cost! Brit Dr actually calls the American's fequency of PS/CT as being a Divine Right in America!

jtl

The chemo sensitizes the
The chemo sensitizes the cells making them more responsive to the rads. The problem, at least as I understand it, is that the platinum drugs are not descriminate and light up all the cells making them more responsive to the rads. This obviously can have a negative effect on healthy tissue that is in the rad field. Targeted therapy like Erbitux is supposed to only affect the cancer cells which may help spare the good cells. New forms of rad therapy also are much better at targeting the cancer and sparing things like the saliva glands and thyroid. It is good that this disease is at least getting attention these days.

longtermsurvivor

jtl said:

The chemo sensitizes the
The chemo sensitizes the cells making them more responsive to the rads. The problem, at least as I understand it, is that the platinum drugs are not descriminate and light up all the cells making them more responsive to the rads. This obviously can have a negative effect on healthy tissue that is in the rad field. Targeted therapy like Erbitux is supposed to only affect the cancer cells which may help spare the good cells. New forms of rad therapy also are much better at targeting the cancer and sparing things like the saliva glands and thyroid. It is good that this disease is at least getting attention these days.

PET scan cost vs CT
It is one of the conundrums of our health care system. These PET scans are darned expensive, compared to CT. OTOH, I've now had three throat cancers. Not one of them even showed on CT. They all did on PET. You basically get what you pay for in health care. Glad I got the PET scans.

Pat

Skiffin16

longtermsurvivor said:

PET scan cost vs CT
It is one of the conundrums of our health care system. These PET scans are darned expensive, compared to CT. OTOH, I've now had three throat cancers. Not one of them even showed on CT. They all did on PET. You basically get what you pay for in health care. Glad I got the PET scans.

Pat

Ditto....
I am scheduled for another annual PET in August.

My MD's so far have had me doing a CT at six months, then a PET the next six months. So far my insurance hasn't given any problems with this, but in August, I'll be going on four years post Tx.

I believe my MD's intent is to continue through five years, I guess I should really ask her. I know my ENT is not a fan of having the extra exposures...I really need to ask my Chemo MD that is scheduling them.

It's a security blanket issue I presume (for me), as like Pat, it seems to be fairly good at finding active cells.

JG

jtl

longtermsurvivor said:

PET scan cost vs CT
It is one of the conundrums of our health care system. These PET scans are darned expensive, compared to CT. OTOH, I've now had three throat cancers. Not one of them even showed on CT. They all did on PET. You basically get what you pay for in health care. Glad I got the PET scans.

Pat

Pat
I agree, the CT did not show mine either. Medicare paid $1310 for my PET, I believe the non-contract rate was $1700. The cost of the daily IMRT's with the CT therapy guide were about the same price as a PET.

adventurebob

EBV
Thanks for the info Kent. I plan on watching it later today. I do get tested monthly for the EBV. It's a little expensive but it does give the docs a good way to measure what's going on without a PET. Of course I have EBV as do most of us I suppose; doc is just looking at the counts of it to see if it's going up or down as you supposed. The test came recommended from a doc who consults on my case and is apparently the leading expert on NPC. I would highly recommend anyone with NPC be getting that test regularly as an early detection tool.

AB

Skiffin16

jtl said:

Pat
I agree, the CT did not show mine either. Medicare paid $1310 for my PET, I believe the non-contract rate was $1700. The cost of the daily IMRT's with the CT therapy guide were about the same price as a PET.

PET Cost
Man..you're getting a discount if you're only being charged $2000 for the PET...that's about the price of the CT at my facility (non-contract) and the PET is running between $8,000 - $10,000 non-contract.

All of the daily IMRT, Amifostine Injections and weekly chemo for the seven week concurrent period was pushing a total (non-contract) of about $125,000. Add that to the nine weeks of heavy chemo and associated I had, and you can tack on another $125,000+.

JG

Kent Cass

adventurebob said:

EBV
Thanks for the info Kent. I plan on watching it later today. I do get tested monthly for the EBV. It's a little expensive but it does give the docs a good way to measure what's going on without a PET. Of course I have EBV as do most of us I suppose; doc is just looking at the counts of it to see if it's going up or down as you supposed. The test came recommended from a doc who consults on my case and is apparently the leading expert on NPC. I would highly recommend anyone with NPC be getting that test regularly as an early detection tool.

AB

EBV, etc
Bob- thank you. I get blood work every 6-months for my Onco visit, but she's never said anything about EBV, so I don't even know if that's a marker she's looking for. Will make it an issue with the next visit.

PS/CT cost in the Quad City area runs anywhere from $4-$5K, though I don't know what BC/BS ends-up actually paying. Do know there's a huge difference between Provider's charges, and what said Provider is okay with actually getting. For me- it's my ENT that orders my PS/CT, and my Onco has advised against needing more of them due to the rad factor.

The Brit C Dr spoke of America's frequency of giving PS/CTs as American's "Divine rght," in a negative way. He also made mention of the false-Positives and false-Negatives, and that they happen a significant lot of the time. My PCP acted like he never even heard the term "false-Positive" when I mentioned it to him awhile back! Bottom-line, though, is the PS/CT seems the best test to get for detection, and that's priceless.

kcass

jtl

Skiffin16 said:

PET Cost
Man..you're getting a discount if you're only being charged $2000 for the PET...that's about the price of the CT at my facility (non-contract) and the PET is running between $8,000 - $10,000 non-contract.

All of the daily IMRT, Amifostine Injections and weekly chemo for the seven week concurrent period was pushing a total (non-contract) of about $125,000. Add that to the nine weeks of heavy chemo and associated I had, and you can tack on another $125,000+.

JG

That is what it is, I get
That is what it is, I get the reports every month. Shows the contract rate and the amount actually paid. If I added up everything for this ordeal including office visits I bet the pre-contract rate is not much over $125K all included and considerably less under contract. I had very expensive biologicals and I think the intial dose was $10K but the contract rate was $7500. I didn't have it but my Onc told me that cisplatin was only a few hundred per dose. Maybe people without insurance should get treatment in SW Florida. It could be that Medicare gets a better rate I don't know since I just started it last summer. I know the difference between the stated rate and the contract rate is not nearly as big as it was with my private insurance.

A few years back I had prostate surgery and went to a specialist in Miami. I added up all of the bills and it totalled about $63K then I went to my Aetna account online to see what they actually paid and it was $10200 including an overnight in the hospital.