Help for an English member

In the UK we are only funded for a small number of treatments if we have ovarian cancer. We never have radiotherapy. Some of you do and I am know that some of you consider it a successful intervention.
While we have access to the "gold" standard drugs, carboplatin and taxol our other options are very limited. I am at the end of the list now and the drugs I have had have been carboplatin, taxol, Caelyx (hycamtin), taxotere, etoposide and lastly topotecan. That is I think our full list of funded drugs. I only ever responded to carboplatin but am allergic to it now and another try at this would probably send me into anaphylactic shock.
I would be so grateful if you ladies who have had other treatments could let me know. I know that your survival rates are much longer than ours. We are not allowed IP therapy either.
Please tell me if you have had radiotherapy and how it worked out. Also please let me know the names of any other drugs you have been treated with unless they have been part of a clinical trial.
I would like to compile a list of all the treatment otions our American sisters have and see if I can do a little "stirring" over here about our restricted treatment options.

By Crit
Posted April 10, 2009 at 4:48 am
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My wife's Doc says he is seldom able to use radiation. I noticed your list is absent of Doxil, my wife just started that for her first sign of progression from disease that is apparently resistant to first line treatments. He has many patients that stay on this drug for years if it works for them.

By OvCaMom
Posted April 10, 2009 at 5:54 am
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My daughter, diagnosed over 5 years ago with stage IV ovarian cancer, has a very similar reaction to carboplatin and cannot take it. Radiation is not considered a standard of care for most ovarian cancers and it is my understanding that most women in the US do not receive it (although in some cases it is at least an option). Anna has also taken many of the chemotherapeutic agents you mention above. She has also taken Velcade, Doxil, and Avastin with Sorafenib.

Have you considered various research options for experimental drugs? There are a lot of new and exciting things going on out there in the research world. I know that the National Institutes of Health here in the US (Bethesda MD) will accept potential research participants from outside the US. Have you checked their website about potential drug trials as a means to access new options?

By FavoriteAunt
Posted April 10, 2009 at 9:06 am
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Radiation is not routinely used to treat ovca here in the US. It can be used, but it is not the first line of treatment.

I've had Carbo/Taxol after my initial surgery. For my first recurrence I had Carbo/Taxol and Carbo/Taxotere. I am now on Doxil for a second recurrence. I've been fighting ovca for over 8 years now. I know we have many more drugs available, but I haven't had them yet. Many of the ladies of this site have, and you'll probably here from them too.

It's terrible to be so limited in treatment. This disease is hard enough to fight even with everything available. I wish you the best of luck!

By aquilega
Posted April 10, 2009 at 9:17 am
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Hi Phyliss

I too am in the UK and am concerned about how few drugs we seem to have here to treat ovarian cancer. Doxil has been mentioned, but my understanding is that is the American name for Caelyx, as we know it in the UK.

From what I have picked up Avastin seems to be a very helpful drug which is obtainable in the US (insurance permitting) but not available to us in the UK as NICE have not approved it.

The options you have may also depend on where you are being treated. I am being treated at the Royal Marsden in Sutton, where Professor Kaye is researching new drugs all the time. The difficulty is that so many tretments have carbo as a base.

It is worth while putting Pazopanib in google, I understand that it is an oral drug a bit like Avastin, and also look at the possibility of having Thalidomide with topetecan.

Have you looked at Cancer Buddies Network, it is a UK based internet support site which I find hugely helpful for day to day support.

Sending you much love

Aquilega

By momanderson920
Posted April 10, 2009 at 9:36 am
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Do you mind if I share your plight with my Congressman and friends as they are considering nationalized healthcare here in the USA and I think it is a big big mistake. I will not use your name. If you prefer not, no offense taken. I wish you the best in getting help.

By scubadvr
Posted April 10, 2009 at 12:29 pm
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I agree with momanderson. If we do go to nationalized healthcare, not only will OvCa treatment be affected, but many, many other chronic treatments will be affected. The govt. is already doing cost-effect analysis of treatments with money from the stimulus package that we have all funded. This will eventually dictate, what is and isn't paid for. Please write your Congressmen!

By momanderson920
Posted April 10, 2009 at 2:25 pm
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I know for people without health insurance at all, it seems like a good option. Personally I would rather see a private insurance availability with big tax breaks and a safety net for people without insurance. I experienced military healthcare when my husband was in the US Navy. It was horrible...you had little or no say about your care, who treated you, what they ordered, nothing. They almost killed my daughter and I when she was born and the hospital care was nonexistent. I fortunately was able to go private with my next two children and it was like night and day. When I told the obstetrician what treatment protocol was followed his eyes got very large....I asked what was the matter and he said they had quit doing that years ago due to malpractice. I don't want to criticize all military care since there are some wonderful medical practitioners in the military community, but the system does not allow for choice and the government has too much power to decide your healthcare options. There has to be a better way to correct the problems we have than to nationalize it.

By Phyllismay
Posted April 10, 2009 at 8:11 pm
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Thanks so much for sharing your drug treatments with me. I will go through them at length and see which are those we are not allowed. One or two of the names vary from ours.
Our system of having medications assessed lengthily through the National Institute of Clinical Excellence is seen as a method of rationing treatment and only agreeing to use those which are deemed to be cost effective. I think that they will not recommend a drug if it costs more than £20,000 for a year's extra survival.
Avastin is one you mentioned and that has been used here in clinical trials but only when added to carboplatin.
Aquilega, I did go to see Prof. Kaye at the Marsden but all he recommended was weekly taxol. Unfortunately he didn't have any drug trials for which I might be eligible. Cisplatin was mentioned but my oncologist decided that my renal function was now too poor for this.
I am not sure about accessing trials outside my area. It can mean an enormous amount of travel and living in a rural area that can present a lot of problems. Our surrounding cancer networks do not have any suitable trials.
I shall keep trying however! There is always an opportunity for something exciting to apear on the scene.
Thanks again for drugs information. A national health service is great for many conditions but not for those where the expense of new drugs is so high. It's particularly frustrating when the armoury of drugs at our disposal (as in OC) has not really shown any significant improvement in the last two decades.

By momanderson920
Posted April 11, 2009 at 9:46 am
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I agree, FavoriteAunt. I am very concerned about going to a nationalized system. I know we have to fix some of the current problems we have but nationalization is not the answer. I want choice....to be able to pick my doctors, where I go for care, etc. Thank you PhyllisMay for letting me use your name and post. And I pray that you get some results in your country in improving the current situation.

By momanderson920
Posted April 11, 2009 at 9:56 am
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When healthcare is subject to cost effectiveness and other criteria like that, it obviously means lack of available medications and rationing. With our disease that could mean early death. My aunt who is actually younger than me (she is 53) developed breast cancer last year. She was destitute and immediately applied for Medicaid. She was in surgery in less than a month. I think it is the people who are in between who suffer most....the poor can get help but the middle class who can't afford healthcare but don't qualify for help are left out in the cold. I will say I don't have sympathy for people who just choose not to spend the money on health insurance and then cry wolf when they develop a costly disease. My brother in law is one of them...he makes decent money but was too cheap to buy it as he does private contract work and doesn't get it through his employer. Personally I think people should be required to have health insurance like they do car insurance. I have seen people who are healthy and don't think they need it yet could afford it, though it is expensive, but choose to spend their money on other things. Some of the reason it is so expensive is the many uninsured who use the system and don't pay anything or the money can not be collected. I have never understood why people are willing to pay huge amounts of money for entertainment but begrudge paying health insurance when your health is the most valuable and important thing we have.

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