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5 FU -- supply run out??

4law's picture
4law
Posts: 112
Joined: Dec 2004

I just received a call from my oncologist telling me that the hospital's supply of 5FU has run out! He says the only factory producing the drug no longer manufactures it because the patent is running out, etc. I only had 2 additional tratments scheduled (6 weekly treatments followed by 2 weeks off X 4=32 weeks) and he felt it made no sense to start me on a new drug to complete my adjuvant chemo treatments. I was diagnosed with rectal cancer in Sept. 2004, had 6 1/2 weeks of radiation along with 5FU via an infusion pump, followed by surgery in Jan. 2005. No spread to lymph system as per path report at time of surgery. Has anyone heard about this? Any advice or comments?

jdzed
Posts: 12
Joined: Dec 2005

Wow what a call! I have not heard anything about it, but I'd certainly go to another clinic and see if you could get treatment there, under the care of your primary oncologist. I sure hope the US isn't running out of 5FU!

CAMaura
Posts: 719
Joined: Feb 2005

It does seem strange to read your post -- but who knows about supply (or demand). You have had a pretty strong treatment already, though. But I am certainly not here to sway your thoughts. I would get a second or third opinion. With dosages being set by body weight and mass -- and not by the individual situation -- it really becomes a very personal decision. The GREAT thing is that you had no spread to your lymph nodes and that your docs were being particularly protective, and that is wonderful. I would talk to one or more docs about your case and see if they feel you have received enough. Something will click and you will have a feel for what you want to do. And if you want to push for more 5FU, you can also call your insurance compnay and they may be able to search on your behalf (if the docs/hospital group are not). I am sure that you will find the answers that you need; plus, if your onc wants to stop now he can schedule follow-up testing to confirm the lack of spread. I'm sure all of this caught you off-guard (and it is even harder to deal with anything while we are on chemo....just ask me!) but with a few phone calls and appointments you will have it sorted out and be stronger for it. All the best and please let me know if I can be of any help. Take care -- Maura
BTW - Once you are sure that you are done, I've had great luck (I think and hope) working the chemicals out of my system; happy to chat with you about it.

fredrick55
Posts: 9
Joined: Oct 2005

I was told that there is a nation wide shortage ( I live in Pennsylvania ) and on my lasty treatment I was given xeloda which is an oral treatment in place of the 5 FU 46 hr drip. Who knows what the truth is?

glimmerofhope
Posts: 53
Joined: Oct 2005

I haven't heard this, but I'm not suprised. It's all about the Benjamins ($$$) with the drug companies and they are always trying to steer oncologists and their patients to their new drugs where they have invested hundreds of millions of dollars and many years to develop.

5FU has been around for 40 years and has long been off patent as I understand it and is much cheaper.

Most studies show it works better than the newer stuff and is LESS toxic, but the drug companies want a return on their investment.

4law's picture
4law
Posts: 112
Joined: Dec 2004

UPDATE: I did a little research and learned that 5FU is still being manufactured, however there is a national shortage in supply at present. My hospital ran out! It is unknown when supply will begin to meet demand again -- it is a day-by-day watch. Since I received 22 weekly treatments (6 weeks on and then 2 weeks off) and only had 2 weekly treatments left to go, it was felt that substituting xeloda for the last 2 treatments didn't make sense when weighing possible new side effects from using a new drug. CAT scan will be scheduled in the weeks ahead, followed up with new colonoscopy sometime thereafter. Adjuvant chemo using 5FU was an "insurance policy" in light of good news showing no spread into lymph nodes or anywhere else at time of surgery. At this point, I am just taking a big sigh of relief and am happy that I am thru with chemo. I will still have to deal with getting used to bowel functions without a rectum (less storage space) and hopefully train portion of colon to act as my new rectum – this was result of low anterior resection. Thanks for responses. Good luck to everyone.

SKelem
Posts: 1
Joined: Jan 2006

Kaiser in California cannot get 5-FU. Stanford says they can still get some, but will be down to one supplier next month.

What can we do?

I wrote to my congressmen and senators:
There is a drug shortage that's seriously affecting my wife's ability to get the chemotherapy drugs that she needs. She needs chemotherapy to fight her metastasized colon cancer. One of the drugs she was on (5 Fluorouracil, or 5-FU for short) is no longer being manufactured, according to my wife's oncologist, because there isn't enough profit margin for the manufacturers. This is in spite of the drug being effective and having tolerable side-effects. The "replacement" drug, Xeloda, has a list of side-effects as long as your arm, most of which are "death".

This is a general problem that affects many people in America, not just my wife.

There is a nationwide shortage of 5-FU. According to an article written December 6, 2005 in Florida Today (http://www.floridatoday.com/apps/pbcs.dll/article?AID=/20051206/LIFE01/512060305/1023/life01),
"As of this month, the American Society of Health-System Pharmacists listed 25 drugs in short supply, while another 29 -- including five cancer drugs -- garnered a "limited-availability" rating, meaning acute shortages can crop up at any time."

This is a horrible state for the health of our nation. This is a case where the government should step in and make the drug available as a generic or appoint a drug company as the manufacturer. The government can either pay the drug manufacturer a "fair profit" on top of the manufacturing cost or pay a fair licensing fee. There are precedents for this action. Brazil and South Africa have done similar measures for Aids drugs. Those countries have taken the position that drug companies' business decisions and profit margins should not stand in the way of patients getting the treatments they need to cure diseases or maintain their health. In this case, the drug companies have made a business decision to halt production of a drug because they weren't getting enough of a profit. This decision should not force patients to die because patients cannot get the drug.

The U.S. government needs to step in and make this drug (and other drugs) available to the patients who need it. It's my guess that it's too late to save my wife, but you can save others' lives by enacting the appropriate legislation to help protect patients who need lifesaving drugs. Make those drugs available through other channels, subsidize the drugs or make the drugs generic. But don't leave the status quo where low profits mean that drug production is discontinued and no other company can make the drug because of the patents rights of the inventor who chooses not to manufacture his life-saving invention.

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