AVE8062 and today's cynical rant.

Some of you may remember me. My wife was diagnosed OVCA stage 1a clear cell in Dec 2006. She is from Switzerland. We are here now getting treatment for a recurrence. Best health care in the world, some say....
She's a got a 3cm tumor on her supraclavicular lymph node, and also another small one in her chest. They gave her carbo/taxol for 2 rounds to see how the tumors responded. They are shrinking a bit. So, now they want to add "AVE8062". A phase 1 clinical trial. The drug is a cousin of the vascular restricting drug "Combretastatin". A similar idea to what Avastin attempts to do. Cut off the blood supply to tumors by disrupting vessels. Sounds promising right? Thing is, there are so many trials with so many drugs in so many combinations, who the F&** knows if anyone of them will work! DOCS don't even know if they will "work", yet they will stick it in your vein or through your port freely. And, what does "work" mean to an oncologist anyway? To someone with OV it means "cure", to a DOC it means something entirely different. Our DOC tells us we can't stop Taxol cause there is an antitumor effect going on and we can't be sure if it's Taxol that is helping. The DOC does not know if the drug she's administering is actually the drug that's working! Fantastic....... My wife is not tolerating Taxol well at all. You see, 2 years ago they decided to give her carboplatin alone. I argued that the double agent regimen is the standard. the DOC said she was 1A, so it was "preventative". Well now she's stage 4. I guess they guessed wrong. maybe my guess was right. We'll never know.
The point is DOCS have no idea what will work..... They just guess based on statistics and studies (the ones they say we shouldn't read). Then they offer drugs manufactured by greedy drug companies looking for a patent and a profit. So, should I just accept AVE8062 (cryptic name, eh?), as the potential new wonder treatment for my beloved wife? Put all my hope and faith in an experiment? Of course....I have to. They've got us all on the hook.....
I'm so upset by the greedy game of Cancer and how we are all pawns. They say cancer is individual, each case is different, then they throw GROUPS of people into POOLS of TRIALS and look for "results". 33% here, 41% there.......very individual. To be truthful, I'd have to say that I do not wish all of you out there the best of luck with experimental treatments... I really don't want any of them to succeed. I want MY WIFE'S trial drug to be the miracle. And truthfully you want YOUR DRUG to be the miracle. And on it goes...that's how they keep the money flowing. What a nightmare.

By quacker
Posted July 13, 2009 at 8:33 pm
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Biofocus. They have a website in English. The cost is around $2500 US dollars (1900 euros) but had I known about it earlier, could have saved $2000 for IV high dose vitamin C treatments that did nothing. The German study predicted that Gemzar would be the best bet, and it has been. They also recommended several vitamins and supplements to ease the side effects of chemo and make the chemo more effective. Right now am also on two supplements that have been shown to produce remissions in the absence of chemo. One is AveMar from Hungary, and the other is ImmPower from Japan. Will let you know if they are working as my markers have started to slowly creep up although am still on chemo.

By thinkgreentoo
Posted July 13, 2009 at 9:17 am
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I am so sorry for all you are going through. I was diagnosed 12 years ago with stage IV. I am now on Abraxane and Avastin. The Abraxane is a sister of Taxol and tolerated much easier. Your wife may want to try it.
I wish you the best, Terri

By mary_randall
Posted July 12, 2009 at 7:06 pm
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Thank you for venting, I almost jumped out of my chair to say YAY, complaining is good. The medical profesion has a different vocabularry than we do and different expectations, all very unsettling.
mary

By tg4love
Posted July 8, 2009 at 9:01 am
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Thank you for asking. I have asked the same question, why was the test done if you don't use it? I was told it is only a tool! When I question the doctor and the company about it the only answer I get is "it's not 100% fool proof" I'm so confused! As for a second opinion, I've tried and because I'm on going with chemo, 2 doctors I've gone to think I should finish chemo before I move on to another doctor. Wait, wait for what? Or I never get a call back from another one I've tried to get into see. These doctors take a lot of vacations. At this point my doc has now decided to start me on another chemo that is the least effective on the test. Doxil. The one that is showing a better response is Gemzar, but that isn't even on the tip of my doctors lips. How do I "tell" my doctor without causing the "who is the doctor here", or what if it doesn't work and that gets thrown back, "well, I told you to use Doxil" words? There really aren't many doctors familiar with my cancer around here and they all, including mine, don't want to think outside the box. They put you on the bell curve and you have to go with the flow. At this point, I just want something done, anything, and as far as the test goes, I'm dumbfounded. This is my 4th recurrence and the last chemo of Taxotere/Avastin had such terrible side effects, and after reading up on Doxil, well, I'm scared about them too. Especially "if" it doesn't work! I guess I'll do it and wait until the four months are up and a CT Scan to see if it works. What else can I do?

By Mom82
Posted July 8, 2009 at 7:18 am
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tg4love,
just curious, why did your doctor have you do this test in the first place. Even if it is not 100%, wouldn't it be better than putting you on a protocol that is least likely to work? It does not make sense to me at all that he completely ignores those results. What does he base his decision upon? I really don't understand why not give it a try if doc is shooting in the dark anyway? Can you ask for a 2nd opinion? Are you stuck with this doctor?
Anyway, I hope that this will work for you at the end of the day and that he was right after all.

By shela
Posted July 7, 2009 at 8:58 pm
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To all the responders to Tom's email & to Tom, I have just returned from the Tues. plenary sessions of the OCNA yearly conference in Wash. D.C. where there were several brilliant doctors sharing new information on clinical trials (pros, cons,etc.) Two of these docs were Elise Kohn from NIH & Deborah Armstrong from Johns Hopkins. Their life's work is dedicated to helping women, both patients and survivors, and getting closer to a cure or a better marker. There seem to be some new trials with promise. Fortunately I am a five year survivor . Just yesterday I was at NIH where I am in a pediomics study with Dr. Kohn (not a trial, but where they test my blood for clues) and I just graduated to going once a year instead of every 6 months. I look forward to going back next year, but should my fate change, I would seriously consider participating in a trial with one of the doctors I was fortunate enough to listen to today. Stay well ,
Shela

By drummedup
Posted July 7, 2009 at 3:58 am
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Jethro:

My wife was clear cell, 1A, grade 2. Now with distant metastisis she is grade 4. The good thing is she has two very small tumors, and they were responding to the first 2 rounds of carbo/taxol. So now they will continue with that, while adding a third drug.
Yes, it's frustrating and yes, we hope it works, and yes we are all guinea pigs.
II wish you all the best with your treatment. Please keep me posted.

By jethro
Posted July 7, 2009 at 3:21 am
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Drum:

I am stage IIIC Clear Cell. I believe that it is a different cancer than other OVCA's. I did the standard carbo/taxol for 4 treatments, didn't work, then did a phase II study with EC145 and doxil for 4 treatments,,,again didn't work but kept the cancer in check. Now I too am doing a phase I trial at MD Anderson in Houston with Taxotere and Perifosine.

Am I willing to be a guinea pig? Hell Yes! I know that they have given me the best that they have approved and that the only chance of survival is trial drugs.

I feel your frustration here! I am mad also at the drug companies and the doctors! Why the ***** can't they find something that works for us?

Please feel free to contact me...clear cell is very rare and we all have to look for things that work. I'm hopeful that this will work...but.... You know.

Hang in there.

Teresa

By quacker
Posted July 6, 2009 at 5:37 pm
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I had the genetic testing done on my cancer by sending blood to Germany. It cost me almost 2,000 euros to have it done, but it has made all the difference in the world. The drugs my oncologist recommended did nothing. The one recommended by the German lab dropped my CA 125 into the normal range after just two doses. What was recommended by my onhcologist and didn't work were Carbo/taxol, then topotecan after the first recurrence. What is working now is Gemzar and carboplatin. If you are not seeing a good response, I would definitely go with the lab recommendations regardless of what anyone else says.

By Laurel-J
Posted July 6, 2009 at 11:06 am
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Let me ask this question? If, at the conclusion of your wife's treatment with this Phase 1 drug added to the drugs she's already on, and the result was a very positive result, wouldn't you be glad she chose to use that drug? All the treatments we're now on were once trial drugs where the patient no doubt wondered if this one was THE one that would work!! Ovarian cancer isn't the most common cancer so I'm delighted there are drug companies willing to risk research dollars on my/our behalf.

If the present chemo is shrinking the tumors, adding the trial drug similar to Avastin that will shut off the blood supply to the tumors, that sounds good to this ovca patient. I hope to read another posting from you that this was a good recommendation by her Oncologist.

By Jen457
Posted July 6, 2009 at 8:25 am
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People that are in clinical trials are true heros. It takes courage to take a drug that no one knows what all the side effects are, what the dosage should be and how often it should be given. I am probably alive today because of the people that have gone before me that raised their hand and said they would do it.
Tom, all of us can read the love you have for your wife and the pain of going through cancer treatment. I hope for both your sakes that this drug works. Sending positive thoughts your way today.

By drummedup
Posted July 6, 2009 at 2:59 am
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Thank you Gia.
You are right. Switzerland is a wonderful and beautiful place. It's very therapeutic for my wife to be here during this time instead of the grimy, noisy streets of New York City. We've thought about moving here permanently many times. We enjoy the serenity and beauty every day. Long walks, swimming in the lakes. we travel down to Italy and swim in the sea, see art, make art (we're both artisits).
As a musician, I've been all over Europe, Asia, South America. I've seen many beautiful places. But I'd replace all of those memories just to have my wife healthy and happy again.

best to you,
tom

By Gia
Posted July 5, 2009 at 10:13 pm
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drummed up, I am sadden to hear of your wife's recurrence and your frustrations. We are all frustrated with you in our own circumstances. I have survive 5 1/2 years so far, been on chemo this last time for over a year. I am on Avastin only at present.
I hope you are at least in some wonderful place in Switzerland---maybe see the lake or the beautiful mountains. I hope in between the treatments you can enjoy the beauty of such a wonderful place----in the face of adversity seeking diversions is always good for me. Best, Gia

By momanderson920
Posted July 5, 2009 at 10:01 am
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I found this drug company reimbursement site....don't know if it is anything helpful. I do know Astrazeneca is an international company and perhaps you may be able to get some financial assistance through them. As I said my mother in law got one of her chemo drugs completely for free through them.
http://accc-cancer.org/cancer_care/patients/patients_hotlines.asp

By tg4love
Posted July 5, 2009 at 8:53 am
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Momanderson920-you are right about the assay that can tell you which chemos work on your cancer. However, I had that test but, my doctor didn't use it because she said it was only a tool, not 100% true. I called the company that did my test and talked to them because it didn't make sense to have it done if it wasn't worth the money I paid. I was told my doctor was right. Here it was I thought it was fool proof and finally there was a test to stop going from one chemo to another chemo and all the side effects. The doctors are going to do the chemo from the books. It doesn't matter what the test show. I'm getting ready to start a chemo that my assay says is the least likely to work. I don't feel good about this, especially since the assay says it won't work, but if I don't do as the doctor says, I worry the doc will say nothing else can be done for me. Finally, I think the test are good, they need to work getting the results perfect so the doctors will use the assay and we won't have to be the test rats.
I want to tell the husband above, I pat you on the back for taking the time to write on this website, to say "thank you" for your wife, and for ranting because you can do that and I can't without being told I'm a witch. I'm proud of you and all of us wish your wife "the" best no matter where she is getting treatment. Hopefully whatever chemo she gets it works! Much success.

By drummedup
Posted July 4, 2009 at 6:55 pm
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Hey mathwiz,

You've got it backwards. I'm from New York. My wife is Swiss. We live in NYC (mostly). We are in Switzerland now for her treatment. Her Swiss medical insurance is far superior and affordable compared to what we have in the US. We are both freelancers.

By 3bears
Posted July 4, 2009 at 4:37 pm
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I am so sorry you are dealing with this. It must be so hard to see your wife suffering this way. And so frustrating that she has had a remission when you had doubts about the initial treatment.

By mathwhiz
Posted July 4, 2009 at 3:03 pm
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hi drummed up
sorry for hijacking this thread, but since you are from switzerland and are getting treatment here, I assume you are a visitor to the USA. if you don't mind me asking, how are you paying for the treatment? is the visitor insurance covering for cancer care?

Welcome to Inspire!

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