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Chemo Sensitivity Testing?
Has anyone here sent their live tumors or fluid to be tested for chemo sensitivity? I am seriously considering this and would like to hear of anyone else that has done this.
The first standard line did not put a dent in my cancer,,,now the clinical trial of doxil and ec145 is not showing progress. My CA125 is over 2400. Not a lot of trial and error time left for me. My doctor says this testing is unreliable but the research seems to say different.
Thanks in advance for any advice....
Hugs
Teresa/Doicat
The first standard line did not put a dent in my cancer,,,now the clinical trial of doxil and ec145 is not showing progress. My CA125 is over 2400. Not a lot of trial and error time left for me. My doctor says this testing is unreliable but the research seems to say different.
Thanks in advance for any advice....
Hugs
Teresa/Doicat
My doctor didn't even ask me if I wanted this or not it is his standard procedure after debulking surgery. During my first consult pre chemo he showed me the results....it was all greek to me but basically it was a graph showing the compatablility of the drugs to the tumors.
Dear Teresa,
You don't know me from Adam (or Eve for that matter), and unfortunately, my computer is old with limited ability to read others profiles. However, I briefed some of your journals and based at face value of what you posted above, it appears you went directly from the first line of chemo to a clinical trial that is for plantinum resistant patients.
Although you have many friends on this forum, look at your pathology report and inquire to the entire forum seeking women with the type & grade of ovarian cancer you have to compare treatments & such. I understand you have clear cell. I do not, but my understanding is that clear cell is more unique and not as receptive to the standard chemotherapies. Maybe this is why your onc suggested the clinical trial. I can't assume what has been discussed between you and your doctor, but, this is where you have to be proactive in your own research and ask lots & lots of questions. Maybe through asking numerous questions, you & your onc can come up with an answer as to the next step in your fight against this disease.
With that said, I have not had tissue tested for sensitivity. And, at the moment, I am not considered plantinum resistant. And, it seems a mute point for you if you are on a clinical trial for plantinum resistant ovarian cancer. If your doctor believes the standard chemotherapies are not working, there are several trials through-out the USA that are being performed for immunology or vaccine should you feel the trial you are currently in is not showing any improvement in your progress.
It's my understanding that live tissue is required for these trials. So, if you are contemplating having a biopsy done for some type of testing, you may want to check out the trials that are currently recruiting patients. If you have not discussed this type of treatment (i.e. immunology/vaccine) with your doctor, check out all trials for ovarian cancer and do a little research to see which ones YOU are a candidate for. Then, propose these to your doctor. All trials are found on clinicaltrials.gov so you will need to refine your search.
You can search by the terms: ovarian cancer AND vaccine AND USA or ovarian cancer AND immunology and USA. Or even refine it to the State you live in. Before commenting, I searched ovarian cancer AND vaccine AND clear cell. One trial came up and is currently recruiting in Seattle. A collaborator of this trial is the National Cancer Institute. This trial may not be geographically convenient for you, but search terms that will help you research the trials that are recruiting at this time where YOU may be a candidate for.
Sometimes we have to get a little angry and research anything & everything on the internet till our eyes are tired of looking at the computer screen. Have a family member help you with this if you are not up to it. Doctors are only as good as what they have been informed with. And, not one doctor has complete knowledge of everything that is currently involved with our disease.
I hope and pray the best for you.
Angie
You don't know me from Adam (or Eve for that matter), and unfortunately, my computer is old with limited ability to read others profiles. However, I briefed some of your journals and based at face value of what you posted above, it appears you went directly from the first line of chemo to a clinical trial that is for plantinum resistant patients.
Although you have many friends on this forum, look at your pathology report and inquire to the entire forum seeking women with the type & grade of ovarian cancer you have to compare treatments & such. I understand you have clear cell. I do not, but my understanding is that clear cell is more unique and not as receptive to the standard chemotherapies. Maybe this is why your onc suggested the clinical trial. I can't assume what has been discussed between you and your doctor, but, this is where you have to be proactive in your own research and ask lots & lots of questions. Maybe through asking numerous questions, you & your onc can come up with an answer as to the next step in your fight against this disease.
With that said, I have not had tissue tested for sensitivity. And, at the moment, I am not considered plantinum resistant. And, it seems a mute point for you if you are on a clinical trial for plantinum resistant ovarian cancer. If your doctor believes the standard chemotherapies are not working, there are several trials through-out the USA that are being performed for immunology or vaccine should you feel the trial you are currently in is not showing any improvement in your progress.
It's my understanding that live tissue is required for these trials. So, if you are contemplating having a biopsy done for some type of testing, you may want to check out the trials that are currently recruiting patients. If you have not discussed this type of treatment (i.e. immunology/vaccine) with your doctor, check out all trials for ovarian cancer and do a little research to see which ones YOU are a candidate for. Then, propose these to your doctor. All trials are found on clinicaltrials.gov so you will need to refine your search.
You can search by the terms: ovarian cancer AND vaccine AND USA or ovarian cancer AND immunology and USA. Or even refine it to the State you live in. Before commenting, I searched ovarian cancer AND vaccine AND clear cell. One trial came up and is currently recruiting in Seattle. A collaborator of this trial is the National Cancer Institute. This trial may not be geographically convenient for you, but search terms that will help you research the trials that are recruiting at this time where YOU may be a candidate for.
Sometimes we have to get a little angry and research anything & everything on the internet till our eyes are tired of looking at the computer screen. Have a family member help you with this if you are not up to it. Doctors are only as good as what they have been informed with. And, not one doctor has complete knowledge of everything that is currently involved with our disease.
I hope and pray the best for you.
Angie
Jane,
I actually have never been a health food store customer since I'm more into eating real food to get my vitamins. So, my first initiative has been to purchase some ginger root at the store to make some tea.
I was passing on information from another OVCA survivor who cautioned against buying supplements from the grocery store or discount stores, and recommended the health food store option. Once I finish chemo and my CA-125 baseline is established, I will try the ginger capsules should my level start to rise. I, like you, have concerns about quality issues, overloading on certain elements and throwing something else out of whack, etc., but I don't want to close doors on something that might help.
Minnie
I actually have never been a health food store customer since I'm more into eating real food to get my vitamins. So, my first initiative has been to purchase some ginger root at the store to make some tea.
I was passing on information from another OVCA survivor who cautioned against buying supplements from the grocery store or discount stores, and recommended the health food store option. Once I finish chemo and my CA-125 baseline is established, I will try the ginger capsules should my level start to rise. I, like you, have concerns about quality issues, overloading on certain elements and throwing something else out of whack, etc., but I don't want to close doors on something that might help.
Minnie
Hi Minnie,
As a side issue, I'm concerned about some capsules or pills purchased at a health food store, or a pharmacy. Can we really be comfortable that what the label says, actually is what is in the product? My concern is also the purity and safety of the product.
I bought some resveratrol at the health food store, it's a brand I never heard of and now I'm concerned about taking it.
You seem to have some knowledge about the issue, so maybe you can guide me.
Jane
As a side issue, I'm concerned about some capsules or pills purchased at a health food store, or a pharmacy. Can we really be comfortable that what the label says, actually is what is in the product? My concern is also the purity and safety of the product.
I bought some resveratrol at the health food store, it's a brand I never heard of and now I'm concerned about taking it.
You seem to have some knowledge about the issue, so maybe you can guide me.
Jane
Teresa,
I asked my doctor about this, and he said he felt it was a waste of money. He said you usually know within the first couple of treatments whether a treatment is working, and they sometimes rule out a treatment that might work for you.
That having been said, if nothing is working and you have live tissue, why not.
I'm looking a couple of homeopathic remedies recommended by a few of the ladies. The first is shiitake mushrooms with garlic to help with my wbc count, and ginger to help fight the ovarian cancer cells. I will just eat the foods as is, but some of the women are taking 2 600 mg. capsules of ginger ( bought at the health food store) 3 times a day with their meals. One lady swears it has lowered her CA-125 levels after they started going up. The U. of Michigan did a study on the ginger, and since taxol comes from the yew tree which is a member of the ginger family as I understand it -- it makes some sense. I figure it can't hurt, and am looking for anything to get my CA-125 levels down.
Minnie
I asked my doctor about this, and he said he felt it was a waste of money. He said you usually know within the first couple of treatments whether a treatment is working, and they sometimes rule out a treatment that might work for you.
That having been said, if nothing is working and you have live tissue, why not.
I'm looking a couple of homeopathic remedies recommended by a few of the ladies. The first is shiitake mushrooms with garlic to help with my wbc count, and ginger to help fight the ovarian cancer cells. I will just eat the foods as is, but some of the women are taking 2 600 mg. capsules of ginger ( bought at the health food store) 3 times a day with their meals. One lady swears it has lowered her CA-125 levels after they started going up. The U. of Michigan did a study on the ginger, and since taxol comes from the yew tree which is a member of the ginger family as I understand it -- it makes some sense. I figure it can't hurt, and am looking for anything to get my CA-125 levels down.
Minnie
I've seriously been considering having this done but my oncologist too, does not think it's necessary. I guess it's one thing to put chemo on top of cells in a dish and another to have them infused into your blood stream. It doesn't guarantee it will work any better.
Having said that though, it's got to be better than just randomly choosing a drug, right? I would think so...
I know here, it's a lot of money, but I'm still really thinking about it.
Becky
Having said that though, it's got to be better than just randomly choosing a drug, right? I would think so...
I know here, it's a lot of money, but I'm still really thinking about it.
Becky
Hi Teresa,
My oncologist does not favor the chemo sensitivity testing, because he feels that tailoring a chemo that way is not conclusive, because the cancer can change, even slightly, making the chemo ineffective.
My specimens after debulking surgery were sent away for chemo sensitive testing by my surgeon,, but my oncologist doesn't think that's the way to treat my OVCA. He prefers to go by the current CA125 and CT scan results.
I wish you the best of luck, I know how tough this whole monster disease is and we have to just keep our confidence, that the next drug will be the right one.
Jane
My oncologist does not favor the chemo sensitivity testing, because he feels that tailoring a chemo that way is not conclusive, because the cancer can change, even slightly, making the chemo ineffective.
My specimens after debulking surgery were sent away for chemo sensitive testing by my surgeon,, but my oncologist doesn't think that's the way to treat my OVCA. He prefers to go by the current CA125 and CT scan results.
I wish you the best of luck, I know how tough this whole monster disease is and we have to just keep our confidence, that the next drug will be the right one.
Jane
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