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Tarceva: $2,500 per month


icbn

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I didn't know cancer was a rich man's disease.

One day a Pharmacy will be held up by someone who says, "Give me all your Tarceva."

There is no way I even have the cash to buy the first month's subscription, so my Oncologist wrote me a subscription for 5 pills. That's all the extra cash I have after all the expense of the first go around with this disease. I have to come up with a solution by the end of next week or just not take it.

What have others done?

Don't worry. Something will turn up. Or as I said I'll not take it. I'm also getting Avastin and Gemzar, as well as Cyberknife surgery to remove the subcarinal lymph nodes so maybe the Tarceva won't matter.

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It is absolutely disgusting how much the drugs can cost. That is why when people say "money can't buy happiness", I get on my high horse and explain about the cost of certain cancer medicaitons which are needed and then bring everyone down.

I don't have a solution for you, and unfortunately getting left over drugs from patients through LCSC or anywhere is illegal, but have you talked to your onoclogist to see if they have a program for donated left over medication? I know my mom was able to donate the Iressa and Tarceva she was taken off of to the oncologist office.

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Do you have no insurance at all to cover the drug or is it that your insurance co. won't pay for it? The Tarceva website can help you fill the 'script if you're having trouble with your ins. co.

Some of the other drug co. have programs to help those who cannot afford the medication. I thought Genentech was one of those that did. Have you tried contacting them directly?

I will pray that you find a solution and be able to try Tarceva.

God Bless.

Antoinette

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I know of someone who works for Genetec and she passed on a message to me that they have a foundation (most drug companies do) and that they will help anyone who can't afford the drug.

I'd say contact them or have your onc's office do it through their rep. There has to be a way, this person implied that Genetec will not let anyone go without a drug that they need.

Good luck

Geri

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I hope Geri is right about Genetech. It only seems fair to provide the meds for those that don't have a way to pay for it. If I were you I would get my doctor to call them directly and start whatever procedures are necessary to get this show on the road. Best of luck with all of this new plan. Keeping my fingers crossed for you.

Nina

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Sadly and Oddly enought Geri Is right. It is so sad to me that the Drug Companies can charge exorbitant amounts for Meds to the Insurance Companies and Consumers who can not afford these drugs and then turn around and offer financial assistance from them to help us pay for the Same Prescription? Why not lower the price. Oh yeah they have to pay for all those training seminars held at Ruths Chris Steakhouse in order for Drs to understand and sell their praoducts. Michael Moore is working on a documentary that uncovers a lot of these problems with healthcare. I also Work For RuthsChris Steakhouse and Know they use us all the time. Click on this Link For Genentech;

http://www.gene.com/gene/about/views/pr ... =Genentech

If I can be of assistance Let me know in obtaining Aid for this problem. Sending PRayers

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Mom was on Tarceva for 16 months and didn't pay for any of it BUT she has no drug insurance, and a very dedicated onc. office. A woman at the onc office (Jan--Mom got to know her very well) had to fill out all the paperwork, as I recall. That is a good point about donating--I don't know what Mom did with hers when she was taken off of it.

I hope something works out for you. The costs associated wqith these drugs horrify me. Mom almost refused to go on chemo b/c she thought she couldn't afford it. Luckily, Jan was able to show Mom that Medicare would cover chemo. It's just a shame to have to make treatment decisions based on $$$.

Kelly

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Definitely check into the idea of Genentech support for the Tarceva and/or whether your local onc. office does anything with donated medications that might help you. I know folks have gotten help that way in the past.

My understanding, however, is that policies on donated medications to offices vary -- I can sort of see why for "quality assurance" reasons. I was encouraged to contact our local chapter of the American Cancer Society with leftover meds. when I was searching for options other than flushing everything down the commode. You might try contacting local cancer-related associations like ACS as well.

Linda

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Before you reveal your identity to any of these PAPs I'd urge you to review your income, assets and available medical coverage. Then, review the eligibility requirements for the relevant pharmaceutical companies. Some companies have very generous eligibility requirements but some companies want extensive personal financial info and have strict limitations. Most, if not all, will want a copy of your most recent Fed tax return. Also, some companies are starting to charge a mandatory co-pay on participating drugs.

B

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It is so sad to me that the Drug Companies can charge exorbitant amounts for Meds to the Insurance Companies and Consumers who can not afford these drugs and then turn around and offer financial assistance from them to help us pay for the Same Prescription? Why not lower the price. Oh yeah they have to pay for all those training seminars held at Ruths Chris Steakhouse in order for Drs to understand and sell their praoducts.

Randy, I know you mean well with this comment, but pharmaceutical companies spend millions of dollars to research, develop and market these drugs. They are in a business to make a profit. If they don't make a profit then they wouldn't be there to research, develop and market cancer drugs or any drugs to save the lives of everyone here. Then where we would be? Dead!

Why bash pharmaceutical companies that offer the drug free to people that can't afford it?

I agree they are incredibly expensive and it's a big problem, but I don't think biting the hand that feeds us will help solve the problem.

Don and I only went to Ruth Chris Steakhouse one time in our 38 years of marriage because we couldn't afford it. I'll grant you they probably have the best steaks in the world, but they wouldn't be there if they didn't make a profit.

Love to all,

Peggy

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SORRY!!! I get frustrated at the fact that the companies help people pay for prescriptions they can not afford rather than lowering price. Kind Of a catch 22 You know. I also see the Profit statements sometimes about BILLIONS In profits and I get confused and Frazzled. Sometimes Forget about research and where they get some of the Items they use for research. Very exotic sometimes and Fascinating Ya Know. I think interms of Value. Lower Price for Higher quantity. not Higher Quality For less demand. SORRY BOUT THAT!!!!

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You're ok, Randy. It's very understandable that people would feel this way. I, too, am staggered by the cost of prescription drugs - even OTC drugs.

My husband worked for Eli Lilly and Company for 32 years, and I worked for them for 10 years. They are the manufacturers of two of our life-saving drugs here, Gemzar and Alimta. Yes, Alimta, the same drug he helped manufacture killed him. At the same time, he and I both knew the dollars and time that went into developing these drugs - it's staggering.

If they didn't make billions, they wouldn't have billions to spend to keep trying to find the cure. Now, if you want to discuss the salaries the top executives make at that same company compared to the people doing the leg work, then we have to start a new thread . . . . Grrrrr! Besides, we've alredy hijacked Bill's thread. Sorry Bill!

Your thoughts on this subject are appreciated and shared by many, Randy. But like most things, once we start to know the whole story things are at least better understood, even though still a BIG PROBLEM!

Love,

Peggy

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The topic of recycling unused medications for those that can't afford them is a great one. I agree that there should be more programs, oncology offices, pharmacies and drug companies that aid those that can't afford the medications needed to help them survive. You can do a google search on what you can do with your left over medications as to not let them go to waste and that will help others. You can also e-mail each other to discuss this topic and other "options" further.

That said. Posting anything illegal, no matter what your personal opinion, is against LCSC policy and it will be removed.

The policies regarding the content posted on this message board protect both LCSC members and the operation and integrity of this website.

While an individual may never be prosecuted for donating left over life-saving medications, this website and it's Board can be held legally responsible / liable for content posted in regards to such an act.

There should be more options available and I emplore others to join me in searching for resources and links to help icbn get the medications he needs.

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Several states are conducting pilot programs whereby unused drugs and medical supplies, that meet certain packaging requirements, can be donated and redispensed to indigent patients. In some cases the program specifically targets cancer patients ( see KY & NE cancer drug repository program ). BTW, at least in California, it is no longer flatly illegal for a pharmacy that's dispensed an RX to take it back. The pharmacy, at it's discretion, can take back an RX but isn't required to do so.

B

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First, my apologies to everyone. I had just received the news on the cost of Tarceva from my Oncologist. He is going to have someone at his office look at what programs might be available to help alleviate some of the financial cost.

My immediate concern was I did not have the cash on hand to buy the first month's prescription. I had my Oncologist write out two prescriptions, one for thirty and one for 5 pills. I knew I only had enough cash to afford 5 pills.

I was not trying to throw a pity party. I assumed many others here have faced the same situation. I needed your advice and everyone has come through in droves with great help. The community here is a true blessing.

Tarceva works by blocking EGFR cells that block the spread of cancer. That is great concept. But Tarceva works best on those who have never smoked. As I understand it, this may be because that the type of EGRs Tarceva targets is not present i all cancer cells.

Yet, no one can tell me if I have this EGF in me. That means not only does the medicine cost $2500 per month, it may not do any good.

They have us. We are so desperate we will spend this huge amount for a chance, a glimmer of hope. The EGF can be determined in all of us. The Tarceva usage can be refined to a smaller target demographics. Why isn't it done? Could it be because that would mean less gross sales for the companies?

I agree there must be a substantial profit incentive for companies to research and invent new medications. But, if we can refine who will be assisted by and who will not be assisted by certain meds, we need to have that routinely classified. Our EGFs types, our VEGF Scores and even DNA markers should be as standard fare as is our blood types for cancer patients. But the Oncology community prefers to just keep shoveling the same slow response with conventional therapies proven not to work.

My oncologist told me my new metastatic cancer was inoperable and terminal. He recommended conventional palliative therapy or a double blind placebo study of Experimental drugs. Experimental Drugs that had no information on if they worked at all.

I said no to both and asked for a week to study cancer. I had to orchestrate my own "curative" plan for my oncologist. Cyberknife to fry the subcarinal nodes followed by chemo to kill off anything still floating around. He recommended the best combination of Avastin, Tarceva and Gemzar.

My Oncologist is a great guy. Very open and receptive. But why didn't he recommend this treatment plan that he now agrees is very sound on July 18th? Now I feel like I have a time bomb ticking in my chest and everyday I looked at what could be done to at least make a feeble attempt to "cure" the cancer I felt as though I was playing Russian Roulette.

I know that it is too late to get ahead of the cancer in this line of treatment. We've waited too long. I asked my oncologist that "when" it breaks out again we need to be ready to remove the new tumors immediately if we can and then quickly follow up again with chemo. If we move fast we might get ahead of the metastatic spread and kill it.

Aggh. I'm just frustrated. Forgive my rant. I just love this community and all of you here. I think we deserve better than what we get from the entire medical community.

The cure for cancer may well be here in the form of expeditious and efficient medical delivery of currently available treatment regimens.

Then added to my frustration for the month long delay to "start"treatments" I found out I need $2500 to get going.

So again I'm sorry. That's the why of my post and my angst. I didn't mean to cause any problems. It is simply frustrating sometimes and I know all of us here face the same thing. That is why my heart beats in harmony with each of you .

I'm going to hit the submit button now, without proofing or reading this over. That's usually a big mistake. I usually end up groaning on how stupid I sounded.

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But why didn't he recommend this treatment plan that he now agrees is very sound on July 18th? Now I feel like I have a time bomb ticking in my chest and everyday I looked at what could be done to at least make a feeble attempt to "cure" the cancer I felt as though I was playing Russian Roulette.

This is the MOST frustrating to me too. In the four years that I have been a patient advocate for those with LC, I have asked myself this a zillion times.

This is in part what inspires us to work at LCSC to provide an avenue and venue for those effected by LC to compare and share their treatments and successes and failures so that we can make better and informed choices for ourselves.

Sure, we can look at the other side and say in the Dr. defense that he is overworked, sees far too many patients and sticks to standard recommended therapies because he hasn't "read, learned, heard, or been trained" in anything new, aggressive or clinical studied.

But at the end of the day, it's your LIFE and survival we are talking about and in the last 4 years I have witnessed those succeed who advocate strongly for themselves. Just as you are doing.

Don't apologize for your post. It was wonderful and is reflective of so many patients in terms of their medical and prescriptive care. It makes us all think

about this very important topic.

I'm sorry about your delay and the frustration of starting a new treatment AND the cost!

My prayers are for you everyday that your oncologist comes thru for you and that the treatment is a total success.

Keep doing what you're doing. I'm so proud of you.

P.S. I plan to do some research this weekend as well and will post those links soon.

Hugs,

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((((((BILL)))))) Hang in there Bill! I didn't take your post to be a pity party. It's just damn frustrating at times.

Sure hope this all works out in the wash for you.

Your a fighter and I'm sure you'll leave no stone unturned! Go get 'em!

Sending you positive vibes and TON'S OF SUPPORT!

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Some Links for Financial assistance for Tarceva without Advertising

1) https://www.spoconline.com/spoconline/t ... /links.jsp

Gives a few Options and possibilities for financial.

2) Genentech Single Point Of Contact Financial Assistance for Tarceva

https://www.spoconline.com/spoconline/t ... elcome.jsp

These are 2 Different pages not identical.

3)https://www.pparx.org/Intro.php

regarding Effectiveness of tarceva

1)http://patient.cancerconsultants.com/renal_cancer_news.aspx?id=35126

2)This is long but Interesting about EGFR

http://www.forbes.com/technology/2004/0 ... ancer.html

I hope I have found Something THat may help with this situation. Sending Prayers and positive thoughts.

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Charlie's doctor contacted the spoconline and was able to get their help to get the insurance co. to pay for Avastin off-label. I bet that is a good route to go for the Tarceva, too.

Also, I understand about your treatment options comments. When Charlie was first diagnosed, the doctor just recommended chemo only. We questioned that and got the rad. going. After that, the doctor knew we were going to be aggressive and he better get aggressive, too. He helped us go to Vanderbilt for a clinical trial, get approval for the Avastin and get the brachytherapy (internal radiation). I KNOW that he lived many extra months because of the aggressiveness of his treatment. Your hard work will payoff. Hope you can keep taking all the meds. and get the rad. that you need ASAP. You have gotten a lot of good advice here. Take care.

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My mom got her Tarceva approved by Genentech for compassionate use because although she had supplemental insurance, it only covered about $250 of the script, and she paid over $1900 out-of-pocket the first month. She was on over $600 worth of dialysis/kidney meds also, so it was impossible for her to pay for the Tarceva. Her case worker at CTCA worked to get it for her free through Genentech, but she waso nly on it for one month before she switched to IRESSA, and then moved onto Taxol/Carbo.

Much luck to you...I wish so badly that there was something I could do...for everyone here.

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They can test for the mutation that makes you more responsive to Tarceva, I had it done, and, unfortunately, I was not a "mutant" as they call it. However, my doc told me that the largest determining factor of how the medication will work is being a non-smoker. Based on that I tried Tarceva, but it didn't work for me. I had a VAT procedure in April to get a sample of the tumor and it took about five days for the results of the mutation testing. Is this something that you can have done?

Good luckto you. I hope you find the magic bullet.

Tracy

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