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Chemo options

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Does anybody have any idea if there are types of ovca that there aren't a lot of chemo options for? It seems to me that my gyn/onc was kind of saying that to me since my CA125 levels weren't coming down enough and she is unhappy with the results. She never said to me that there were a lot of options. Should I be worried? Well I guess I can't help worrying.

Thanks for your input.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

There are plenty of treatment options...how successful they are I am not sure. Carbo/taxol is the gold standard. Some people have allergic reactions to the carbo/taxol and cannot continue...they have other options. If the carbo/taxol truly gave you no remission that wouldn't be too good but that DOES NOT mean you have no options.

There are other traditional treatments and there are lots of clinical trials out there. Personally, I don't think I'd do a phase I trial. I think I'd only choose 'treatment' trials. Are you being treated at a major cancer center? If you are not at a major cancer center I'd get to one ASAP for a 2nd opinion. Check out ovariancancer.org. They have a clinical trial link. Someone will call you and they will research for you which clinical trials you may want to look into. If you really had no remission you would need a trial for platinum resistance. Good luck. Don't panic....easy for me to say, I know. I am going through a recurrence and I am afraid it might not work...then what? I think once you have a recurrence you run the risk of 2nd line medications not working.

Let me know what happens!!!!

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

I just don't know how you all cope. I'm a mess right now. I will keep you in my thoughts and wish you all the best.

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Dear Disney, take it from a 7+year survivor, there are many many options. More than you can imagine and we each our different to what attacks the cancer for us. My doc usually goes 3 rounds and it the ca125 is not showing a drop we move to something else. Hope this helps and gives you encouragement!

Hugs ♥ Prayers Bonnie

kayandok
Posts: 1223
Joined: Jun 2008

even if you have reason to worry, it is never productive, actually. What kind of OvCA do you have? If you know the stage and grade, that is good info too. There is always hope for a chemo to work, especially if you have a good cyto-reductive surgery to get maximum or optimal tumors out.

I would write down a list of all your questions and ask your doctor, for explanations. And there are certainly a lot of gals here with a lot of OvCa experience to draw from. And a lot of love and support too,

I hope you can get some more answers soon,
Kathleen

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Thanks for your encouragement ladies. It's true I've had no remission yet and my doctor made me feel very bad with her words. I'm hoping there are more front-line options than she made me think there were.

I am at a major cancer site.. Shands at the University of Florida in Gainesville but if I don't get no satisfaction I am thinking about making an appointment at the University of Texas, THE premier ovarian cancer center in the country. I'm not crazy about my doctor, her bedside manner is a little cold. From what I've been reading on the internet there are a lot of options available. I wish the best for all you ladies. You never cease to amaze me.
Thanks again.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

sounds like you and 'worldtraveler' may have a similar situaiton...see her post above. It is also nice to have someone to compare notes with...at least for me it is.

Good luck.

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Sorry Nancy, I don't see a post from 'worldtraveler'. I'm kind of new to forums so maybe am not doing this correctly. Is it in this thread?

Thanks.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

The topic of the posting is "definately not NED" Ned means 'no evidence of disease'. She has just finished her initial rounds of chemo and went for her end of treatment scan and something was seen. She had a biopsy done and it is cancer.

Again, look for the topic heading "definately not NED update 4/26"

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Well I just went in for chemo and they didn't give it to me cuz my CA125 went up for the first time ever so the drugs are not working. No remission for me apparently. I am so depressed and the chemo nurse and doctor had such long faces. I'm actually thinking of making an appointment at the cancer center at the University of Texas. It's supposed to be THE center in the US. We'll see.

Ok, thanks Nancy, I'll look. Have a magical day.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

How much did your number go up? Hang in there, don't think there is no hope. I feel your pain. I too am worried that my current chemo may not be working.

What plan do they have? Getting a 2nd opinion may be an option. Do you want to talk? I can give you my number if you are interested.

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

I'm very sorry you are so worried. I hate that for you. I wish I knew how to stop this constant obsession although I find low-dose tranquilizers help me a lot. I'm a firm believer in modern pharmaceuticals.

I have an appt. with my chemo doctor on Thursday and I'm sure we will discuss a plan. I am probably platinum resistant which complicates things and really affects my survival rate.

I'm not sure about a second opinion yet. My sister says I'm not giving my oncologist a chance since she is at Shand's which is a major center. But, get this, she is the ONLY gyn/onc there in the whole hospital. Do you believe that? We shall see tho.. I'm giving them one more round of chemo and then I will decide. There's an extension of MD Texas cancer center in Orlando which I will start at.

Anyway, so sweet of you to offer talk. I actually would love to. My email is mickey@disneynutt.com if you want to sent your number that way. Very cool.

Best wishes and Disney thoughts... may much, much pixie dust fly up your nose!!!

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

DN....do not despair. A single blood test, and rise in CA 125, does not mean anything. Every doctor I know of looks for a PATTERN of rising CA 125 values as ONE indicator of chemo resistance. Sometimes patients have a rise (or several) and nothing to indicate there is trouble afoot. CT/PET scans are often ordered to confirm or rule out a recurrence.

While I agree that MDA (the Cancer center at UT) is world-renowned and a visit there could not hurt, I also think you need to remember that anything can send your CA 125 up: a UTI, a cold, an infected cuticle.........anything. So don't go all gloom and doom on us, okay?

Carlene

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

I'm just so sorry we all have to worry and fret so much. I'm so sorry we have this disease. This is the first real setback I've had to face and I must say, it's a big bummer as we used to say in the 60s. :-)

Thanks Hissy_Fitz.. you made me feel a bit better. I did have a fever of 99.2 today but then I have a fever every time I go to chemo. That may be just normal for me... not sure.

My CA125 went from 70 to 77 which I consider significant but my medical license expired a long time ago. :-) Perhaps if my doctor's had more positive attitudes I wouldn't be on tranquilizers. But I'm very stressed taking care of my 86 year old mother who just suffered kidney failure and has such arthritic legs she can barely move.

I feel all your pain and cry for you all the time. You are all wonderful and none of us deserve this. I guess I just need time to adjust to bad news since everything has been good up to this point.

Take care everybody... have magical and Disney days!!!!

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Thanks. I've already been in contact with one of their satellite medical facilities in Orlando. They can treat me and because they are so closely linked with the med center in Houston they can send me there for any treatment they cannot do. I like the fact that the MD Anderson center is so involved with research. There may be hope after all.

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

I'm so sorry that you are going through all of this! I'm glad that there is an MD Anderson center so close to you!

I also visit this site http://www.emergingmed.com/ just to see the clinical trials that are being offered for OVCA. For whatever reason, the trials that are being offered renew my hope for the future. From what I've seen over the course of the past few months, there are clinical trials (Phases I - III)that are focusing on platinum resistant disease.

There are other clinical trial "finder" sites out there, as well. My prayers are with you, and yes, there is hope!

Hugs,

Leesa

msfanciful
Posts: 580
Joined: Nov 2009

It's good to hear you've considered and located other options.

And yes, yes, yes... there are sooo many options, I as well know this because after my first initial 8 rounds of carbo/taxol; after a year remission, numbers were indicating that something was afoot and after a cat-scan showed that 2 lymph-nodes were enlarged I began a second round of "doxil, carbo and avastin" for 6-months only to stay in remission for 6-months.

Then they put me on this oral chemo called "etopocide" and after almost 2-months my numbers climbed 20 points; so my doc took me off of them immediately, so now I am on a once-a-week taxol maintenance and in three weeks,my numbers went from 62 to 36. So my doctor being a stickler about the ca-125 numbers wants me to continue this routine until we knock the numbers down to nothing. LOL! Keep in mind high numbers really is not a true gauge of a true picture of cancer activity, so don't despair.

Okay, I'm being long-winded again, if this doesn't work (I'm not claiming that it won't), I do know being a 3-year stage 4 ovca survivor, that there are still many options available and that you have to keep trying until you find the one that will work the best for you.

Stay strong and don't feel bad about being a basket-case right now... you deserve to feel what you are feeling, you'll get past it. Even after all this time, I still have my moments but just not so many one right after another, now they are farther apart which enables me to function better now.

I'll be praying for you,

Sharon

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