Advanced geomic testing

[Bwebster]

Hi ladies. I was diagnosed with ovarian and peritoneal cancer stage 3C in Jan 2016. I go to Cancer Ctr of America in AZ. I had complete hysterectomy and debulking surgery and he got about 99% of the cancer at time of surgery. To date I have had about 16 chemo. I was put on maintenance Avastin every 3 weeks for 9 months back in Oct. 9 weeks ago my CA125 that was 38 started to go up and most recentvit was at 238. My CT showed the cancer contained but showed the tumor starting to grow a bit. No changes yet in my treatment except they decided to do advanced geomic testing. Has anyone had this? I should get the results around the first part of feb. This is very expensive but they could find a better drug that could better combat my cancer. Not knowing too much about it wondered if anyone has had it and what did it find. They dont think my chemo is doing a very good job. I need to find a drug to get me too remission. Would love to hear from someone who had this done. In July after my surgery they told me I had about 42 months. Well, I need to beat that number. Thanks Ladies

[greenpink]

Hi, I don't know what advanced geomic testing is, but I will look it up. I have had two lines of treatment, both consisting of chemo and surgery each time. I was never offered Avastin as a maintenance dose. CA125 is rising now, a year after second line treatment, although CT scan shows nothing visible at present. Will be retested in 6 weeks.

[85live4ev]

Hi there, I wish I could help you with genomic testing but I don't really know much but what did surprise me was they gave you 42 months. No one really knows how long anyone has to live with oc because you might do brilliant on a treatment & stay in remission for years. I was only given 6 months or less with chemo & I have done 22 months so far I am stage 3c. Please take that number out of your head because doctors should never put a sell by date on anyone.

I am wondering if there are any trials you could go on. Maybe when your gene testing has been done they will be able to offer you something that might work for you.

Good luck on your testing & let us know how you get on. Çindyxx

[Bwebster in reply to 85live4ev]

Hi Cindy - I dont too much of this geomic testing exept they send tissue from the surgery to a lab and they biopsy it to see what kind of cells and they try to match the cells to see what drugs are out there that are FDA approved, any clinical trials and drugs that work on other cancers that would work for me. Very expensive and it depends on how much they have to biopsy and cross reference. I was told that if I did not have surgery that I would have 12 months, if I did 42 based on average. Apparently it is very aggressive. This whole exoerience has been more than I can believe. I want to get to remission but feel like I am going in wrong direction. I am so blessed I made it through the first year. So much anxiety when it is grtting close for the CT and the CA125. I had chemo yesterday so today I will find out my CA125. It is nice to talk to someone who is batttling the same as me. Do you have neurothapy in your toes and ball of your feet? Look forward to chatting with you soon. Thanks Barb

[85live4ev]

Hi Barb, It sounds like your health team are doing the best they can for you. The fact you have not reached remission yet must be worrying but doesn't mean you can't. As long as you have faith in those caring for you. I am a little concern you feel you are going in the wrong direction. Lets hope they can get you on the right tracks.

In the UK where I live, they do gene testing I am not too sure if thats what they are doing for you. It sounds like the testing you are having is a lot more than offered over here.

Yes I have suffered with neurothapy in my toes but ok now.

I wish you all the best at fighting this take care Cindyxx

[jdillon]

Hello! I'm not familiar with geomic testing and will be very interested to hear about your findings. I am currently researching alternate methods of treatment as well and I very much enjoy seeing other posts about the same!

I was diagnosed in June as a Stage 3c clear cell. I went through first line treatment of carbo/taxol to find I was platinum resistant. I am currently on second line treatment consisting of Avastin/Doxil. During all of this my GynOnc, nor any other doctor or nurse, ever gave me a 'timeframe'. Google had already told me the statistics, but my Dr. kept telling me 'there is only 1 Jodi with OC and we don't know how she will respond. She is not a statistic.'. It was frustrating at first, but I've come to realize that focusing on a timeline that really doesn't exist wasted my good energy. Instead I now try to live in the moment. It doesn't mean I don't worry or have stopped researching a better path!

Please let us know your findings when you get them in February!

Hugs!

Jodi

[Bwebster in reply to jdillon]

Thanks Jodi I will. I am only on Avastin. Have had 4 trmts so far my CA125 has gone from 38 to 321. I am so upset. I dont think this cocktail is working for me. Do you have to have the Newlasta shot with the Avastin/Doxil? My doc said he may keep me on avastin and add carboplatin with it. Hoping this geomic test will give me options on what med will work on the exact cell. I have been dealing with OC now a year this month and there is so much anxiety that comes with the blood work, the CT's. And not knowing how I got this as they have already tested 27 genes and all negative. Have only been married for a little over 3 years and I need more years as a wife, mom, and grandma. I have to beat this. Good luck to you. I wish you well. Keep in touch. Barb

[jdillon in reply to Bwebster]

Hello! I have not had to have the Neulasta shots yet. My numbers came close to needing them around treatment 6 of Carbo/Taxol, but so far on Avastin/Doxil all of my bloodwork has been good. Except my CA125. I'm currently at a 69. I have Avastin & Doxil on Day 1 and Avastin only on Day 14....all for 6 rounds. (I have 4 rounds left). So far I can't complain about any side effects on them.

I am platinum resistant so that is likely why my Onc switched me to Avastin from Carboplatin. It is my understanding the Avastin/Doxil combination isn't necessarily for a cure, but more treat and maintain. I have met a couple of ladies that have been on Avastin for 8-10 years and are doing very well. Minimal side effects.

I am very interested to know the findings of the cell research. I have been to MD Anderson in addition to my local GynOnc and neither have mentioned being able to target a certain cell type with a certain chemo. It certainly makes sense! I have been researching Stem Cell replacement therapy in Germany. It makes sense, but I'm not sure I'm brave enough to abandon Western Medicine yet. Once I have some real facts I'll post.

What chemo treatment were you on prior to Avastin? Did your CA125 normalize during those treatments? Have you gotten a second opinion or have you done all of your treatment at CCA?

And yes......we need many more years! Knowledge is power and with that we all have a fighting chance!!

Hugs!

[Bwebster in reply to jdillon]

Well last Feb 2016 right after I got diagnosed try started me on carboplatin and taxil for 3 trmts then the Dr here in Pgh was going to try to do my surgery but he said there was to much cancer and he could not get it all. I was very discouraged but then I saw the TV ad for CTCA and called and May went to AZ for 2nd opinion. They were wonderful said 3 more of the recipe I was i had before thrn we would see. So July he id compled hysterectomy and debulking. After I recovere had to o e more of the chemo recipe but on the 4th one he added the Avastin so now I was getting 3 chemo drugs for 3 trmts.. I also had the Newlasta shot with each chemo from day 1. My CA125 went to 38 and I was put on Avastin Maint every 3 wks for 9 mo. So far have had 4 and my CA125 is now 321 from 38. Will be going back to AZ Feb 6 to have CT and see what he will do. Hoping the genomic test will give light to what drug would work best on my cell. Thank you and I will keep you posted. So much anxiety I dont sleep well and worried with my number going up that it is growing or even spreading. Good luck to you - will keep you in my prayers that you beat this. Barb