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 zircons
Posted July 4, 2009 at 8:21 am
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You are correct. We are all in clinical trials hoping our treatment will be the cure. We have to participate in them because we are looking for a cure. Wouldn't it be great? I really don't care whose trial works, as long as they find one that does. I, too, will be in a phase 1 trial soon. I would also be happy if they could find some definitive way to detect this horrible disease. The doctors don't know which is treatment is better either. We are all pulling at straws.

By Patricia123
Posted July 4, 2009 at 9:24 am
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I am not in a trial.

It is not required to be in a trial. I think there are treatments that can be used without going the trial way. The anxiety and fear about all of this can be overwhelming.

I hope you can find a solution that you can feel confident about. Best to you!!

By momanderson920
Posted July 4, 2009 at 10:03 am
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I have not tried this myself but know others have, did you look into the cell assay studies? They take some tumor tissue and test the cancer for sensitivity to the various chemo drugs/cocktails. I think one reason one works for one and not another is that the cancers are not all exactly alike, nor are our overall cell structure/DNA/cancer fighting immune systems. As for the drug companies, my daughter worked for a company that did contract work for a drug company working on a Parkinson drug. It was an eye opener...many millions of dollars are spent on research which often doesn't pan out...they may spend millions on one drug that never makes it to human trials or doesn't make it to manufacture due to many factors. I don't doubt there is profitmaking going on but it is not that simple....a great deal of financial risk is involved in producing these drugs. One of the reasons the US has been so successful in producing so many is that these companies have the money from profit to start some of the research and then some research projects are donations true, but much is through drug companies who take great financial risk. Believe me, I too wish they were less expensive but I thank God that someone is willing to take the financial risks so we have continued efforts to find a cure and/or better treatments. I wish they knew more too since sometimes we do feel like guinea pigs and these drugs can do alot of damage to our bodies and then oftentimes not work. I continue to pray to God that a cure and better treatments will be found and have faith that He will help us in that end. I pray your wife is successful in her treatment. Also if you are having financial difficulties in paying for her treatment I think there are some companies that will help out...I have heard about Astrazenaca. My mother in law had them pay for one of her chemo drugs as she was older and on Medicare. I wish you and your wife the best.

By Shearaw
Posted July 4, 2009 at 10:48 am
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Drummedup, Your raw pain comes through in your post very clearly. And it can only come from the place where your deep love for your wife anchored.

You are correct that at this point the oncology community (and our insurance system) prefers to go with whatever treatments work best on the greatest number of patients. On the other hand, it has been well established for many cancers that combination regimens seem to produce synergistic effects not found with either drug alone.

I echo zircons thoughts. I wish my trial were to be the miracle cure. Actually, I wish that the high-dose antioxident trial was the miracle cure. But truly, I wish that both cures and early detection could be found for all forms of this miserable disease. Until then, I feel I have to give the research my best shot.

Please keep us posted on your wife's progress. She and you will be in our hopes and prayers.

By lissa-G
Posted July 4, 2009 at 12:19 pm
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You really hit home with your "cynical rant". We all try so hard to be positive and hopeful and sometimes it just all falls away and we realize what we are really dealing with. I think it really helps to unload every now and then. I know that my husband struggles the same way you are. It must be incredibly hard to be in the role of caregiver/husband. Feel free to rant here so that you can be positive and hopeful for your wife. We are all hoping for a miracle!

By drummedup
Posted July 4, 2009 at 12:58 pm
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Thank you all. And thanks for letting me vent....

Now back to our regularly scheduled program of hope, joy, and positivity!

love to all you strong ladies!

Oh, and one last thing....Cancer sucks! :-)

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?

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 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 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 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 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 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 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 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 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 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 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 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 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.

Welcome to Inspire!

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