Beyond chemo?

[banjoman]

My wife has been struggling with ovarian cancer for 5 years. Mayo clinic just informed us that they have no other options for her there, and good luck. Seriously.

With the metastasis of the largest tumor at 8 cm, on the adreanal gland, and some smaller instance in her pelvis area, I'm confused. Surely there must be something to do here? Are there cutting-edge treatments we can explore?

I really don;t want to be the guy that goes to Tijuana for apricots, but what can one do in this situation? She is currently really quite healthy, and open to suggestions.

Thanks for your thoughts.

[Katmal-UK]

Hi I am sorry to hear about your wife. I take it you are in the States as you made reference to the Mayo Clinic? Have you considered researching trials that your wife might be eligible for or looking for a second opinion elsewhere. Sorry, being in the UK I am unsure as to what your options are in the US but there may be other ladies on the forum here with more knowledge of your healthcare system. I wish both you and your wife well. Do let us know how you get on . Big hug to you both. Kathy xx

[banjoman in reply to Katmal-UK]

thanks very much for the hugs.... Yes, in the US. We are looking around for trials, but, even with that option, we might end up with the placebo rather than the treatment? seems risky considering what could be coming. We are looking at all our options, and are hoping that somehow we stumble onto the one that works for her.

[Katmal-UK in reply to banjoman]

Hi I agree there is a risk of a placebo but if there is no option then it might be worth considering, your wife will be monitored very closely. Laura makes a good point about the Cyberknife. x

[Maxjor in reply to banjoman]

Just so you know---I went for a 2nd opinion to Dana Farber in Boston and they said they do not do placebos in trials with cancer patients [anymore]. They can do standard treatment with placebo, but never just placebo. Might be worth ONE visit to get input and ideas to bring back to your local cancer center. They were more than happy to call my oncologist in NY with their feedback and opinions.

[Lindaura]

Dear Banjoman,

Despite your name, you sound quite reasonable. I am with Kathy.

The Mayo has a reputation, but they are not infallible.

Instead of going to Tijuana, you should check out some other teaching hospital. Especially one conducting clinical trials.

Also, some of the ladies here have been able to get delicate surgery performed using something called a Cyber Knife.

All you can do is keep up your research.

Is your wife BRCA positive?

Let us know what treatments she has received up to now...

Best wishes,

Keep up the fight!

Hugs,

Laura

[Hidden]

Banjo man,

There are a couple other forums that contain more US ovarian cancer gals.. it’s Inspire.com and smartpatient. Sign up under the ovarian cancer section. Many knowledgeable ladies that have been through many treatments.

[banjoman in reply to Hidden]

thank you!

[Hidden]

careoncology.com - this is the US equivalent to the UK Care Oncology Clinic. They may be able to give you some hope. Good Luck

[Nstober]

Hi so sorry the Rutgers cancer institute in New Jersey conducts clinical trials that are not placebo.

Sending a hug nancy

[Neona]

Suggest you look at phase one trials as you are pretty much guaranteed to get the trial drug . Phase one trials are not normally comparing the drug to a placebo or other treatment- just testing the new drug.

[tara108]

Hi. I am so sorry to hear this. I use the Inspire site in USA very often. You join the ovarian cancer string and become a member. You can post on there, click the member button near bottom of page on your post, not public as you will get more replies. You can also type in any topic at top right, and there is a huge amount of information. As others have said, there are so many more trials in USA and Australia, where I now live.

If there is a placebo, don't pick that one without a 2nd active drug and try to find a Phase 2 or 3 trial if possible as they know, more or less the safe dosage. Or Phase 1, if you get a good recommendation for it and not terrible side effects!

You can get a 2nd and 3rd opinion. Also Cyberknife targeted radiation as someone said may slow everything down and also remove a tumor or 2. I just had it here and its very easy with few side effects.

Let us know, if you wish how things go. Big hugs from Oz to you both.

[tara108]

PS. Sorry, I meant many more trials in USA which aren't in Australia!

[banjoman in reply to tara108]

I understand that Cyberknife is the same thing as Proton Radiation Therapy?

[tara108]

Hi again. Here is a link to an article about the difference between the 2 sorts of radiation therapy. Its for prostrate cancer which it can sometimes cure. Not done much for ovarian but I thought was worth a go! I am writing a Friday's Corner on USA Inspire site on my experience of Cyberknife targeted radiation in a week and a half.

austincyberknife.com/news/t...

[kat98116]

How about an extra integrative (not alternative) approach? Might be worth a consult. I’m with dr nick chen at Seattle integrative cancer center. Don’t know where you live but we have patients from all over. Sometimes the regular oncologists will follow his protocols near the patients home.