Hi all... just curious and concerned. Has anyone had a CA.125 higher than 5000 and how did you fare with it? Mine has climbed a little more, and is now beyond the 5000, even though I've just finished Topotecan. I've now started Taxotere/Carboplatin, and hoping that will work better, but just would like to hear from you other girls, how your CA.125 counts are doing, and if they have risen beyond my 5000+, and did you manage to get it down again.
This is really scarey, as I've always maintained it about 500 as the maximum, but this is way too much. The strange thing is, I still feel really well... great appetite, and still very active, so I'm not sure what to think.
Would appreciate any input into my query, and thanks.
Wishing you all well, and hope you all have a lovely Christmas... Helmar...
Wish there was something I could tell you my dear, do you live in the states? Wonder if the place rebalspirit went could help you. America Cancer Treatment Center. Have you tried the ginger tea? Sure hope this latest treatment brings it down for you. Glad you are feeling ok. I did see some one post on here that their CA125 was over 12,000, maybe she will post and give you some answers.
First thing is a Merry Christmas to you. I've seen CA 125 as high as 10,000 and I think 14,000.
Here's from a patient, "I've been receiving Taxol only, on a weekly basis, for the past 2 months and will continue for another 4 months, at least ... I still have my hair after 2 months. My last Ca 125 was 71, down from over 4,000+. This is the best I have felt since diagnosis.."
There is a study on weekly Taxol which I have to pay on the web just to the get it and the positive response of that study (32 patients with recurrent and platinum-resistant disease) is 75%. Study released August 21 2006.
The study says, "Paclitaxel (Taxol) administered on a weekly basis has been reported to possess both anti-angiogenic(like Avastin) and apoptic inducing effects. We investigated the activity of a weekly continuous paclitaxel regimen in patients with recurrent platinum-resistant ovarian cancer", scientists in Canada report.
In short by making taxol weekly, it changes the mechanism from platinum resistant to platinum-sensitive. "Continuous weekly paclitaxel is well-tolerated...", The study says.
Melody was removed from the clinical trial of Avastin. The sponsors got "cold-feet" of including Ovarian patients in the study because of GI perforation. I think it is a blessing that she was excluded. Firstly it was phase I. Secondly they were going to use two(2) antiangiogenesis drugs, the other untested. I am not saying clinical trials are not good. All drugs came from trial and experiments.
So you will be able to guess what drug my wife is using right now. She just finished chemo yesterday and she is already out today doing errands or shopping. Actually our Gyn Onc wanted to give Avastin to her for free so why go on clinical trial? We may still use Avastin down the line.
Here's another from a patient (I have both their email addresses)
"There have been some questions about weekly vs once per 3 weeks taxol lately. This is what my onc said... The golden standard for first chemo is usually taxol in combination with carbo once every three weeks. The synergy of the two is usually given in as large a dose ... with the hope that remission will follow. If single agent taxol is tried either for recurrence or for consolidation then it's weekly, as taxol alone only affects tumors cells as they divide. Since they do this on a continual basis, hitting them often is more effective than hitting them with power...."
"I'm six years into this ovca journey. Two weekly taxol cycles have brought my CA 125 from 1300 to 92. Hooray!!..."
I just want to give some goodies to all the wonderful people in this forum. That there are so many options as more and more studies are being made.
This is one thread I am going to save for future reference. I have not recurred, but I know there is always that chance, especially since mine was caught at III C. You all are such strong women and men, and I value your opinions greatly. I love that you all are taking such a proactive attitude. That's half the battle. Never give up! Thank you all for your inspiration.
I give thanks to god for all the brave people who share info in this forum. What a blessing!
Helmar,you are in my prayers. I pray that you will be cured. I know what the science and statistics say....but honestly, I dont trust them. As Jatoo, mentioned please focus on god. with god, all things are possible.
Hi Jatoo.. and I wish you and Melody a very special Christmas too, and I'm so pleased to hear that she is doing well.
With the rising CA.125 mine jumped 1600 in the last couple of weeks, and is now almost 7000, which is a terrible worry to me. When you mentioned 10,000 and 14,000 for these other ladies, did they manage to reduce the count? This is what is terrifying to me at the moment... does there come a time when this thing can't be stopped? How far can the CA.125 rise before it gets to the point where it won't reduce. Quite scarey.
But thankyou for your good info. I'm presently doing Taxotere/Carboplatin, so hopefully something will work. The Topotecan was useless.
Hi SimplyStar... No, I don't live in the States. I'm an Aussie, but I find this Forum very informative, and I thankyou all for all for the friendliness, and good advice here.
I wish you all a very Happy Christmas (well the best under the circumstances, I guess)... and hopefully a much better New Year for us all.
Thankyou all for your input and good wishes. They are much appreciated.I have always had faith in God,and our lives are in his hands.
I wish you all a very nice Christmas with family and friends, and hope for renewed strength to fight this beast in the New Year.
Best wishes... and thankyou again for your support....Helmar...
You are welcome and Merry Christmas to you, your daughter and family. May she feel warmth this Christmas.
You said before they are just numbers. Here's one with CA 125 of 25,000!!!! (Dx 2001 stage III)
"With a CA 10000+ we tried gemzar/cisplatin for two cycles which except for the obvious side effcets have no effect. The CA is now 25000.... She did 3 cycles of Avastin without significant effect on CA and change to Taxotere/Avastin brought down CA to a low 8600 skipped one treatment and CA 125 to 25,000 then reduced to 11,000 as of writing."
Our Onc wanted to give Gemzar alone. We were not convinced of the success rate. I researced as many studies as I could get emailed Oncs/gyn oncs including NCI (National Cancer Institute) and the actual author of Avastin/Cytoxan and weekly taxol/Gemzar(70%+ positive response= complete + partial + stabilization) both good success rates. The last study was purely for Platinum Resistant Recurrrent patients.
Melody is platinum resistant. She recurred after 3 months. Which means you have to get a study that will alter her resistance to platinum. Then I got hold of the weekly Taxol only for platinum resistant recurring patients and found out that by making it weekly it changes the mechanism to that of an "antiangiogenesis" drug like Avastin and removes the resistant to platinum. I told our Onc if she can give weekly Taxol, presenting the study. She agreed. We could have added Gemzar (with the same success rates) but it is hard on the bloods.
What I am trying to say is that if our Oncs recommend a drug can they support it with a study and at what success rates? It can't just be based on "gut-feel". Finding the right drug is tough enough and using a drug without a study to support it is even tougher. Sorry for this diatribe Helmar.
A merry Christmas to you and your family. Channel your worries to baby Jesus on the crib - "The reason for the season".
Hello again Jatoo, I read what you have posted and was wondering where you got the information at? I would like to get a copy and bring it into my onco on Tuesday when I see her. I think maybe a weekly taxol would work for me. So if you have time and don't mine I would love to get a copy of that study. Thank you very much and I wish you and your wife good luck and happy holidays. Diane
Merry Christmas and Happy New Year to you all. I've just read all your comments and you are an inspiration to all. My mom's CA-125 is up to 250 from 73 in only one month and she is taking Caelyx. Friday she took her second cycle of Caelyx. I read that Caelyx kicks in late; so I am truly hoping that by next month her CA count will be lower. She is also platinum resistant and that is why her doctor chose Caelyx. I just read about Taxol given weekly; I am wondering if this works for patients who are platinum-resistant. Does anybody else have a similar experience with Caelyx? I wish you all the very best. I am just really worried because her doctor told me that after Caelyx we are really running out of options...
I had a ca-125 of 8000 back in Sept 2004. Praise the lord I am still here to talk about it. I was treated with carbo/taxol. After the 6th round my ca-125 was nearly normal.
When I had a recurance I was again tx with carbo and again returned to nearly normal. Today it was climbing back up so time will tell if I go on yet another hit of chemo. I have a wonderful Onc. that I totally trust. I also have faith that the Lord takes care of me every day. Keep the faith.
I've been fighting ovarian cancer for 4 years. I have had 2 surgeris and currently being treated for my third time. My first round I was given Carboplatin/taxol. My CA-125 dropped to a 2 and stayed there for aprox. 8 months then slowly began to climb. I was then treated with surgery and chemo. I took Carboplatin and taxol. When I went in for my second dose I had a reaction to the carboplatin and nearly died. I was then switched to taxol and Gemzar. As soon as I finished that round my counts began to go up. I tried an alternative medicine but my count jumped up to 1500...I returned to my oncologist where I took Topatekan. I would get 3 weekly treatments followed by 1 week off. I took three rounds and my count then jumped up over 8600 I was then switched to Doxil and after 1 treatment it dropped to just over 4600. I'm hoping it continues to drop. I feel really good concidering everything...I thank God for that. I wish you all well in this journey we are on!
Hi Pamela...I was surprised to see this post resurrected :-)...but thanks for your input. My numbers did drop through Taxotere/Carbo from 7500 to 290 after 6 treatments. Since then they have climbed again and were over 9000 this time. After another 6 treatments of Carbo/Taxotere they only dropped by 3000, so I am currently over 6000 at present. I've just started Doxil... first treatment last week, and hopefully this will work for me. I did have it a couple of years ago, and it worked well for me then. My Oncol. tells me not to be too concerned about my numbers, as I seem to maintain high numbers, but strangely I feel very well, have a good appetite and live an active and fulfilling life, so I don't gripe too much...:-)... but I do like to see that CA.125 come down.
I've had Topotecan and found my numbers went out through the roof with that, so my Oncol. took me off it, and the Gemzar was really bad with my bloods... needed transfusions for red cells and platelets.
I hope you continue to do well, as that's great news... a drop of 4600 after one Doxil treatment. Terrific outcome. You'll soon be down into single digits...lucky girl. :-)
Best wishes and hugs...Helen...
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