Today we've met with my Moms doctor to her his treatment plan for her recurrence.
His first recommendation is a clinical trial. Im not sure on what the full name of the drug is but its abriviated MOBAR 003-005. Its given interviniously and it is antibodies. The study has 2 groups. One group gets just this MOBAR and second group get MOBAR + Carbo. His second choice of treatment is back on taxotere/carbo. I asked about Avastin clinical trial and he said there is no room left on that trial. Im not sure about any of this. I sort of wanted to reserve the taxotere/carbo if needed in the future. He said this clinical trial looks very promissing and would "recommended it for his mother". We are going to get a second opinion.
Has anyone heard of this particular clinical trial? and its full name?
I tried to search it on yahoo and couldnt find any info since I dont have its full name.
This sounds a little odd to me. I'm starting a clinical trial March 12th in Toronto - I contacted the Dr about it and because it's a "trial" they aren't allowed to say what the results have been. Fair enough. He said, as my Dr, he can't sway my decision one way or another. He offered me Doxil or Topetocan or the Trial. (I'm platinum resistant) For your Dr to say it looks promising and then say he would reccomend it for his Mother... does he have something to gain from this? Is he running the trial? My dr is the person running the whole thing - he's actually overseeing it at three other hospitals as well. But again, as my Dr, he can't suggest one direction or another for me when it includes a trial drug - the choice is mine. I don't understand why he wouldn't put her back on Taxol/carbo - it sounded like she responded really well to it the first time. Anyway, it's a tough decision no matter what way you look at it. I hope your Mom asks lot's of questions before jumping into anything and I wish her the best.
Thanks for the reply. No her doctor has nothing to gain from it at all. Its just one of his first options that he recommends. I asked him how he felt about this trial and he said that he would recommended to his mother as first choice if he had too. I asked what is the second option and he said her recommends taxotere/carbo. He is not pushing her on the trial just recommending it as his first choice. We are not gonna jump into anything until we do more research. We are meeting with his nurse that will tell us more about it. We are not sure either weather she should do this clinical trial or just do chemo, so we're going to U-Penn to get a second opinion. I've heard they have a very good gyn/oncl team there.
Hazel30... Hello, I'm a little 'iffy' about trials when there are other proven treatments out there that maybe your Mum hasn't yet tried. There's no guarantee with a trial, that your Mum will actually get the trial drug, so wouldn't it be better for her to stay with the Taxotere/Carbo at the moment, as she knows that works? I'm on this combo at present, and it's working a treat for me. I was offered the Phase 3 trial for Phenoxodiol, but because of the excessively high CA.125 and no guarantee that I would get the trial drug, I declined. It's an o.k. thought to keep this proven combo for a later date, but if the cancer goes crazy it will be harder then to 'peg it back'. I had Taxotere/Carb in 04 and it worked great for me then... and again now, so even if your Mum has it now, it will work for her again in some months from now. In the meantime, there are many others out there that she can try in between, if need be.
I've not heard of the trial that your Mum's Doctor has put to her, but if it's in it's infancy as far as trials go, then I wonder if sometimes we are being used as 'guinea pigs' so they can see how it goes.
Anyhow... these are my thoughts only, and I can only wish your Mum well with whatever she decides to do.
I think the thing I didn't like was that there are 2 trial groups - one with carbo and one without. I asked my Dr about the chance I'd end up in a group that might be recieveing less of the drug and he said they don't fool around with that when they are dealing with cancer - it's the same for everyone. If your mom responded so well to carbo initially, what if she ends up in the group without the carbo? The only reason I'm jumping to a trial at the point is that I'm not responding to taxol/carbo again, and the trial is specific to my type of ovarian cancer - Micropapillary serous carcinoma. It's a very rare cancer version of a borderline tumor. It doesn't tend to respond well to conventional chemo and is usually better managed through surgery. I figure if there is a drug out there that was targeted at MPSC, I have to try it - there's no more a guarantee, for me, that Topetocan or Doxil will work any more or less than this trial.
Good luck to you,
Thank You all so much for your input. I agree with many of your comments as far as being sort of speak "ginue pig" for clinical trials which is why we initially refused maintanence chemo because its not proven for anything. Which is why we are probobly going to refuse a clinical trial. Not saying that people undergoing trials are ginue pigs, but clearly these are all studies. I was always under impression that these trials are for platinum resistant people or those that have tried many different drugs in the past. Because of my Moms situation I just dont feel like she needs to be in a clinical trial. So we are going for a second opinion and I think that will finalize our decision.
And yes its all a gamble. Im begining to understand it now more clearly. Just because it works for one person it doesnt mean its going to work for another. Sometimes it may take a few different treatments to find one that works. I just feel like its a shame that women need to go through this like that. There needs to be more aggressive reaserch into this. Im not even talking about a cure any more just a long remission so that women can restore their bodies back to normal and live a good happy life without this stress.
Actualy this clinical trial its primary study is to prolong remission after first recurrences.
We are going to also get a secon opinion at university of pennsylvania.
Everything with regards to treatment of this horrid disease is a gamble. My Dad likened it to high stakes poker - you don't know if you've won until the last card is turned. They need to come up with better tests to maybe direct women in the right direction of which chemo they should be taking. Couldn't they just use some of the cells from the tumor and apply the drugs and see which one works the best? Sounds so simple sometimes, but obviously it's not. Like I said, if I didn't have MPSC, and just regular epithelial ovarian cancer, I would be moving on to another drug, not a trial. When you get told that you have a 30% chance of Topetocan or Doxil working, I figure, what have I got to lose by trying this? Whose to say I won't get better results? You just never know.... I hate this disease.
I feel what you saying. It is horrible and also unfair. Its unfair that women dont have anual check ups with ovca screening. Its horrible that women discover this diseas mostly at stage 3 or higher. Its horrible and makes me so angry. My Moms early signs were shortness of breath, and bad ones too. She quit smoking in one night and thought she was dying cause loss of air. All the doctor in the world diagnosed her with ASTHMA. You know what I say BALOGNY. She has no asthma that was cancer showing signs. Now if every doctor knew excatly what to look for in signs for ovca even if they are as small as shortness of breath or back pain I bet more women would survive this and be detected at an earlier stage. My Moms cancer wasnt detected until 10 months later after her first real sign came through.
Its ashaeme that women have to battle this cancer like this at this day and age. There should be more research and like you said cell test ( I forgot what its called) To see which drugs work and dont work without putting your body through chemo thats useless to you.
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