Other Options?

[alanpvegas]

Mom has stage 3 ovca, dx in aug 2006 and has had 5 chemos so far (first with carbo/taxol and the rest carbo only).  She had some new (small) tumors on her intestines that caused a functional bowel blockage back in Oct but they were going down alot with chemo.  Went from the 1000's to 125 now going back up (I think 200's last time they checked) so they say she is paltinum resistant and that there is *nothing* else they can try because it won't work and he said she had 1 or 2 years to live.  Said that the only thing they can do is find an experimental (I'm assuming clinical trial) drug to use and they have one in mind but it's taking nearly two weeks now and we've heard nothing.

Is there anything else that can be used?  What about Avastin, Gemzar or other things?  I find this strange that we have to go straight to an experimental drug and may not even get it because it's a phase 3 trial.

[alanpvegas]

Hi Helen,

Well since this post the first oncologist literally 'dropped' her (no more treatment) so we now have a new oncologist.  Just had her first weekly taxol today in-fact!  

Yes phenoxodiol is a a shining star on the horizon...made from all things a soy isoflavone :)  

[lucymullis]

I'd encourage you to look for a trial as well as do the above.  Why don't you go directly to NIH?  OCNA has a matching service, too.  I think it"s pretty much the only way we can get to the drugs on the horizon>  I will be thinking of you and your mom.

[freshair]

Alan,
Why isn't the oncologist at all trying low dose taxol or taxotere? I don't understand. I am sure you are in the process of a second opinion. Janita's story is encouraging. Never give up.  There is a phenodoxil and ovarian cancer story in Life Extension magazine. It's all about the politics of the FDA and not getting promising drugs through.  Keep us up to date and all my best to your mom.  I also wonder if things are different depending on insurance plans.

Janita,
Wow, you have a long story.  I am so glad you are doing well and have found a better doctor. We shall never give up hope. I have had two brain surgeries with gamma knife and after almost three years good in that area (which has a 100% recurrence rate every year). Now all my trouble is back in the abdominal area  (it's back home).

Breathe in the good,
Helen

[Helmar]

Hi Janita.... very interesting story, and you've certainly been there and back... but it sounds like your new Oncol. is a 'goer' so no looking back eh? :-)   Your last line ' I don't believe anyone should ever give up"... says it all, and exactly what I've been saying since I was dx in Feb '04..Stage 4. I'll fight this lousy disease until they cart me off to my little box. :-)
I hope you have turned the corner with your treatments now, and will go from strength to strength. You have 3 good reasons to keep going it seems... a wonderful hubby and two great kids.
Wishing you all the best.. and do call in and let us know how you are doing. Hugs from Downunder....Helen...

[Janita]

I want to thank you all for sharing your experiences on this forum. It is always so hard to find information on ovarian cancer, and particularly difficult to find actual real life experiences. I was diagnosed in July 06, had 1st line treatment of carboplatin/taxotere, with fantastic results. My CA125 started at 3500, and at the end of 6 treatments, by the end of December, I was down to 9. What a miracle! Unfortunately, by the end of February, it had returned with a vengeance. I had no idea of what to expect, evrything that has happened since has been a rude surprise to me, and it has been very difficult. By the end of February I experienced extreme pain, and ended up in hospital. My CA125 was up to 1200, I was told that I had tumors around my intestines, which were probably causing blackages. I was medicated for pain, then sent home to suffer in terrible pain for 3 weeks. I started back on chemo - carboplatin/taxol, but it had no effect in the pain. I ended up back in hospital at the beginning of April, and had surgery to remove 18 inches of small intestine. This relieved a lot of the pain, but caused a lot of other problems. I was also told that my intestines looked as if they were sprinkled with silver cake decorating balls. We then changed my chemo to Topetecan. After one cycle of weekly treatments, I had a CT scan which showed progressive worsening of tumors around my intestines. We then changed to Doxil. After one treatment, I once again ended up in hospital due to excrutiating pain. This time I was given a terrible prognosis, and told that more chemo treatments were not possible, as I had muiltiple blockages, and told that I should go into hospice care at home. I am 41 years old with two teenage children. I told them that I was not ready to sign on with hospice until I received another opinion. After 11 days of being in the palliative care ward, drugged out of my mind, and suffering withdrawals when I asked them to lessen my pain med doses, I was finally discharged. I met my new doctor the following week, and he immediately told me to disregard what I had been told, to him I looked in very good shape, and at my age I should never accept such a terrible prognosis. He believes in very aggressive treatment, and said I had several options open to me which had not been tried yet. He gave me a Doxil treatment right there and then, at a strength of 70 (previous ONC had given me 52). I go for my next treatment his Friday, and he will be gicing me 90. My blood CPC last week was absolutley great - every count was up, inlcuding white cells, from 5.1 to 11.9! My husband has become an expert on OC, and has had me on Essiac, Zeolyte, Vitamen C, B12, as well as all organic food, no red meat, and no alchohol. I don't know exactly what is working, I'll assume its the combination of things, but overall, I am doing pretty well now. I don't believe anyone should ever give up, we just never know what will end up working for us, but we should try everything we possibly can to win this fight.

[alanpvegas]

wow thanks for all the replies everyone!  I'm printing them out and showing them to mom in the hospital :)

[SimplyStar]

God Bless You.  You gave my hope back to me that I will see my daughter live. I read the stats and get real low. Her last biopsy of the uterine lining came back clear. The CA125 is staying at 5. My fear is that I will outlive her. I pray every night for all women and have always thought I had a pretty good connection with him. Do you think this Zeolite is a hoax?

[Jatoo]

Thank you. Sounds like your daughter is doing great. The longer her remission, the more options she will have because then she can always go back to Carbo/Taxol including Taxotere, Cisplatin etc.

When I went to Goggles, I never saw a study that correlates Zeolite to OvCa. So there is nothing I can say.

Thanks for all your help in this forum. Your nursing experience is valuable.

Jatoo

[Jatoo]

1. Hello. She definitely have many options. My wife (3C Dx June 2005) was also platinum resistant in that she recurred after three(3) months after 6 rounds of Taxol/Carbo. I was almost a complete ignoramus on the disease. So I did a lot of research, asked a lot of questions, studied every possible promising cure ,both standard and clinical, for advanced ovarian cancer, particularly platinum-resistant and therefore equipped myself with data to such an extent that we could bombard questions to our onc and wouldn't be surprised if she answered it wrongly because we already knew the answers. In short the cliche is always true: "knowledge is power".

2. It is true that OvCa is a very challenging disease in such a way that if the Onc has not updated his/her studies she will just tell you that you have only two(2) years to live. The easy way out.

3. The standard second line for platinum resistant is Doxil or Topotecan. Doxil almost put my wife in remission. By the second treatment her CA 125 was already single digit (normal). The 3 cm tumor was shrunk to just a strip. She was done with Doxil after 8 months. If the tumor is reduced or stabilized that is already great. It gave you another year to find other options. Nobody really knows what drug will work for your specific tumor. In a way we are trying to convert a life-threatening disease into just plain chronic like diabetes.

4. Then after these two drugs there are so many options (I can probably name 15 drugs or combo here). Please go to the archives under the medical side of this forum and you will discover it. Chemo, Monoclonal, Hormonal are some of the general categories.

5. Right now, my wife is on Gemzar-Avastin and on one treatment alone it dropped her CA 125 from 500 to 250, removes ascites and clears her partial bowel obstruction because now she has very regular bowel movement while before it took her three(3) days. It infers that her tumor close to the gall bladder and rectum has been shrunk even without seeing the scan. Avastin alone has so many combo: with abraxane, doxil, topotecan, taxotere, cytoxan, herceptin or just avastin alone, etc.

6. The goal is to find a bridge, to find the right drug/s that will work for your specific tumor because each case is different.  You will constantly hear the refrain: what will work for you may not work for her. But as I mentioned earlier it just cannot be based on gut-feel. It has to be based on well studied research.

7. And lastly if humanly all things have been done, every one of us will pass through this world in God's own time. Either way it is a win-win situation if we do our best. That means I will pray for your mom and please pray for my wife too.

Jatoo

[nyc lady]

Please, Please, Please seek the opinion of another doctor.  I have never heard of a doctor saying there is nothing we can do for you and saying that there is a year or two left.  I do have a friend that is losing her battle but the doctors still have not given up hope even with her being in a hospice she is receiving chemo.  The chemo won't cure my friend, but, it will make her more comfortable.

There are so many other chemo treatments out there.  It is very important that you seek a 2nd opinion.

Let us know how it goes.

[Helmar]

Hello... and I do think that there are other options for your Mum to try before going to a trial. I was dx in Feb'04 and am currently on Taxotere/carboplatin which is working really well. I started off with a CA.125 of 7500 which is extremely high.. and it's fallen to 3553 after just two treatments. Last year my Oncol. tried me on Carbo alone, and it didn't work at all... but with the Taxotere...well. In my 3 years I've had Gemzar,Topotecan, Doxil, Carbo. The Doxil worked really well also.
If your Mum's Doctors have given her one to two years to live, then her cancer can't be all too bad. If they'd said 3 months... then it would be different. My thoughts are to get another opinion... or maybe two... or change Doctors, as the ones she has doesn't seem to be giving good advice to my way of thinking. You need an Oncol. who will fight for your Mum.. not one of these weaklings that isn't interested because she has Ovca.
Phenoxodiol is supposed to be a great drug for Ovca, and that's being currently trialled (stage 3)here, as well as places in Europe and the U.S. My Oncol. offered me to go on the trial here, but because my CA.125 was so high, and there was no guarantee that I would get the drug, but could have been given Placebo and Carbo... a combination that wouldn't have worked for me, I opted to give it a miss. I didn't have the low numbers or the time to mess about, so I opted for what I'm having now... a good decision, I think.
Please get busy now... and don't let them treat your Mum like 'oh well, she has Ovarian cancer so we won't go out of our way to do too much'. Tell your Mum to fight it with whatever she can... don't give in, and take each day as it comes, and looking for plenty of tomorrows.
Thinking of you and your Mum... and please let's know how she is doing.
All the best....Helmar...