Please Read...What to do now?

[Hazel30]

My Mom just had her second treatment today carbo/taxotere for her first recurrence.  She had a pretty serious allergic reaction to carbo that the doctor saying that she will no longer be receiving it.  They said its pretty common when one receives carbo 2nd time around to be allergic to it.  We of course are vry disappointed about this and now are wondering whats next and what are the different options.  We are meeting with her top doctor this Thursday and I dont even know where to start and what to ask for at this point because we were so sure that this combo would again help her since its been a year since her last treatment.  Her nurse is saying she may stay on single agent taxotere...How affective is it on its own?  Are there any other drug combinations with taxotere?  I also brought up what JATOO mentioned about oral hormonal blocking pills and this is possibel for me to also bring up to her doctor but Im not sure if he will want to approach this with my Mom right now.  Im just so disappointed I thought we were in good hands with carbo/taxotere for at least maybe a year.  What will happen next.  Im hurting so much from this I dunno what to do with my emotions anymore.

[Jatoo]

Here's my answer to that question which I posted last 6/3. I am repasting it again here,

"Arimidex is also a hormonal drug in the sense that it stops estrogen production. But I haven't seen a completed clinical trial with ovarian cancers. That infer's that there looks like a clinical trial going on. I think that I have come accross some OvCa patients using Arimidex. The best way is to ask your Onc as to the effectivenss of either Tamoxifen, Femara or Arimidex."

[nyc lady]

What about Armidex???  There is a women in my NOCC Chapter (Freshair can agree on this) that has been on Armidex only and has remained stable.  She was dx'd 7 years ago, did the usual chemo routine and is on Armidex.  Her CA125, although high, is stable and has been and her scans show no changes.  Just a thought....I know nothing about this drug and very little about chemo, only what I have learned from everyone.

[Hazel30]

Hello ladies and thanks for the responses.

Gail:  I didnt mention previously but my Mom is also in a clinical trial for antibodies called MORAB.  This is given in conjuction with her chemo every 3 weeks.  From what I've heard through the nurse the head doctor still wants her to receive this trial drug in cunjuction with taxotere single agent.  Her CT scan is due in another 3 weeks so depending on what that scan shows we will determine weather she will continue this regimen or swith like you did.  We will meet with her head doc tomorrow and I will mention Femara, I dont see how you can loose with  it unless if it may interfere with her current chemo drug or the trial.  I dunno yet.  Also I know her nurse said to me again if need be in the future which would be a last option is if someone does have such a reaction to carbo they can be administered in the hospital and decensatized (sp?) to receive the carbo drug.  Thats good to know too.

Becky:  I've been following you for a while now because you've been on here for long time.  I understand what your saying and I feel the same way.  We're not looking for a cure just a controlable disease and by doing that I know we have to find that one drug that works for her.  I just know that before we do find it we will have to go through a few of them and try them out first.  I guess I didnt expect this to come so soon.  I still hoped for carbo/taxotere to work and give her another remission before we had to look into other drugs but I guess thats not what God has planned for us.  My Mom does have a good medical team behind her that are very determined to give her the best care and drugs so that is my hope that they will make sure she gets what she needs in her best interest and not just do what the book says.  Like Jatoo said we need doctors that can think outside the box.  

Thanks again ladies.

[Tybear]

Hi there...I am so sorry for what your Mom has to be going through. I am doing chemo now, for my first recurrence (I recurred after about 7 months). I hope this doesn't come across the wrong way...I guess I just want to be honest with you. My doctors told me (and, from what I've read) that when your cancer recurrs, it's not about achieving a remission, it's about keeping the disease stable and maintaining a quality of life. I'd like to believe that somewhere in the near future, I'll be able to at least get a few months off without any treatments, but for now, I have no end date in sight. I met a woman at chemo the other day, in her 60's, whose been doing this for over 7 years...chemo for over 7 years. I can't even imagine....but, she's still here, right? I look at it like, as bad as that might sound, I would do it too, if It meant I'd be here for 7 more years. I can't imagine how you must be feeling, being preganant on top of it all...I can appreciate the emotions being all over the place! I think the most important thing is to surround yourself with a medical team that is hopeful and willing to do whatever it takes to kick this disease. There are so many drugs available to your mom...they'll find one that works, I'm sure of it.
Becky

[gah_70]

Hi Fiana,

I was dx in August 2005 with IIIC high grade.  My CA135 at the time was 3053.  After surgery, but before chemo, it was 101.  I had a good response on Taxol/Carbo, and actually went into remission by my 5th treatment.  I finished  intial treatments on December 29, 2005.  My CA126 continued to drop all throughout 2006 until September.  It started rising one or two point every couple of months.  Buy January 2007, my Onc gave me a number, and said once it got past that point, we would start looking a little harder as to why.  I reached that number (28 - but he uses the Douglass Assay where 21 and above is high), so I had a CT scan.  Nothing showed up except gallstones and a kidney stone caused by my Crohn's disease.  GI wanted to get the gallbladder out, and while inside with the scope, the surgeon visualized the cancer on my large and small intestines, the diaphragm, and the implants in the peritoneum.  No telling how long it had been growing, but I say I was in remission about 15 months or so.  My Onc wants to save the Taxotere because as you said, he can give it in conjunction with Carboplatin or Cisplatin at a later date, and should the allergic reaction still appear, he can put me in the hospital to infuse slowly over a 24-48 hour period.  

Reading the other posts where Topotecan is mentioned, however, really makes me want to as him about Femara.  I have never mentioned this to him, and am interested in what he might say.  If you ask you mom's Onc about it, please let me know what he says.  

Best wishes to you, and to all who are going through this.  God Bless.

Gail

[Hazel30]

Hi Jatoo, thanks for the reply.  I sleep well because Im exhausted but my days are nothing but stressful.  I worry too much about my Mom, Im a worrier I cant help it.  We will discuss with her doctor on his opinion to what she should do.  I know there are doxil, gemzar and topotecan but I know these are not as good as carbo and I was just not ready to cross this bridge yet.  I will also mention a possibility of Femara and how he feels about it.  He seems like a very educated doctor so Im hoping as you say he thinks outside the box.  I will also mention Avastin and if insurance does not cover it we will try everything possible for her to receive it.  I will post on Thursday after our appointment.



Thanks Jatoo & everyone for your response and lets all pray for eachother to beat this disease

[Hazel30]

Hi Gail, I too thought of that as well.  Maybe switching chemos and hold the taxotere for the future.  My Moms nurse also said that just because she had a reaction to carbo now does not mean that she will have this allergy build up forever.  Maybe in years to come if needed that option is there to try out again so at least I know that in the back of my mind we may use that option again of carbo/taxotere and I think the same may go for you.  If you dont mind me asking how long was your remission for?

[Jatoo]

Dear Fiana:

Many times it is really hard, but somehow it can be a blessing in disguise. "When God closes a door, He opens a window", is a cliche by now but He still is in control. He cares for your mom more than all the sons and daughters in the world could love her.

But let's use the human means for now. The best part is you mom is Platinum-sensitive not resistant.That means that I think Taxotere, on its own, like weekly Taxol can produce a remission. Oxaloplatin (being recommended by our Onc on 2nd opinion just in case) with lesser side effects than Carboplatin is one of our options and we are even Platinum-resistant. That means that Carbo or even Cisplatin can be replaced by Oxaloplatin. Then as Helen mentioned you still have a 2nd line of Doxil, Topotecan and even Gemzar to try and delay the growth. Hormonal drugs is a bonus to increase the probability of these drugs working, that is, if your Onc is well-studied on Ovarian Ca and can think outside of the box. Our grace (from prayers) is we are blessed by Oncs who think outside of the box.

I don't know if you can get Avastin, but if you can your drug options will multiply. If you have been reading the posts lately, VEGF trap (which is like Avastin) is starting to make headlines. I can write paragraphs of several options here but let's see what your Onc will say on Thursday. That means we have to work as if everything depended upon us and pray as if everything depended on Him.

I hope this will help you to sleep well.

Jatoo

[gah_70]

I had my second treatment for my recurrance last week.  I was also put back on Taxol/Carboplatin and had a severe allergic reaction to the Carbo.  I saw my Oncologist again today to find out what plan B is (he, too, said it is not uncommon to experience an allergic reaction after first-line chemo is complete.  He says that is your body's way of saying 'enough is enough'.)  I will be starting Topotecan on Monday for five days, then will be off 16-21 days, then five more days, etc.  He did talk of using Taxotere as a single agent, but decided to keep that in the arsenal should we need it later.  I have no idea what to expect from Topotecan, but Taxol was very rough on me, so I cannot imagine this being any worse.  There are so many therapies out there, however, that I have to keep up my hope that there is one that is going to make a difference for me.  Please let us know what your mom's doctor chooses to use next.  It is interesting to see how different Oncologist choose to attack this this monster.  I am keeping you and your mom in my prayers.

Gail :)

[Hazel30]

Keeping it stable just isnt good enough right now I cannot live with that.  She has been off chemo for a year and deserves another long remission and we will try to find that for her.  Please recommend something to me that we can discuss with her doctor.  Maybe in addition to taxotere or possibly a whole new chemo regimen.
This is too stressful I didnt expect this, I just found out that Im pregnant and my emotions are through the roof.  I cant stop crying about this whole thing.  I hate this disease too.
I must sound like a complete mess

[freshair]

That's so upsetting. Being on just Taxotere should keep it stable. The easiest chemo that I was on was the low dose taxol (once a week). Other drugs that will be recommended are Doxil or Topotecan. Also there are clinical trials to look into that Jatoo has posted. And your doctor should be able to discuss the anti hormone drugs such as Femara. All my best to you and your mom. I feel for you. I hate this disease.