Update--Not Looking Good

I went for my onc appt last Tues and it was not good news. Back in Oct I had a CT scan and it showed there were 13 tumors in my liver and a few in the pelvic area. I was kind of shocked because up until that point (2 yrs) there had been no evidence of disease since my original surgery,  just a rise in my CA 125.   I have been on chemo constantly since I was dx in Sept 2006.  My CA would get down to 8.5 or 22, but it always popped back up again.  I had hoped to just go on like that with microscopic cells, but it didn't work out that way. He put me on a Doxil/Carbo cocktail which works well for some, but not for me.  I had another CT at the end of January and the chemo did not work at all. None of them are gone, none of them have shrunk, and on top of that there are a few more in my liver and in my pelvic area.

My onc put in a request with Aetna, my insurance company, to try and get approval for Avastin. I heard that Gemzar and Avastin were put on the list of acceptable ovarian cancer drugs with Medicaid and I think the insurance companies generally follow what Medicaid does, don't they?

I know some of you have been on it, but I don't remember what all you had to say about it so I would appreciate hearing your experiences with Avastin again.

I don't know if there is any plan past the Avastin. He says we are looking at a month to month situation here. I am really weak, sick and tired all of the time.  My liver started hurting a couple of days ago. I have been running a fever & we don't know what from, but he called in an antibiotic just in case.

I am going to have my records looked at by MD Anderson and I think John's Hopkins too. I have family up there so that would be convenient.

I hope this is making sense. I have been putting off writing this, because my brain just isn't working well these days and I just keep erasing everything I write.  

Well, I don't know what else to say. I hope the ins co approves the Avastin. I really hope it is my miracle drug because it has come to that. I really need a miracle.

I will let you know what happens. Thank you all for you support. It really has kept me going this last couple of years.

Jan

[ireneo]

I think it's . . .  unethical, cruel, inhumane? . . .  that the insurance companies pick and choose which drugs they'll pay for, especially when it comes to life saving medications. How do they sleep at night?

It's OK to ramble, sprinkle your thoughts here and there. We'll figure it out. Mostly it's good to hear from you.

Love and hugs to you,  Irene

[cirella]

Hey Jan,
I'm praying for your miracle.  I agree with Irene.  I'm glad to see you here but wish you had better news.  Love you!

[Ellen1957]

Dear Jan,

This is Howard, Cindy809's husband.   Ellen is Cindy's middle name.  I am sorry for your latest news but encouraged by your attitude.  She's on Cytoxan IV and a very low dose Avastin.  Out of pocket about $450.00.  Half the dose the other 4 patients he treated.  A normal dose cost $10,00.00.  We are currently working with our doctor's office, insurance co.  We've been denied 3 times.  The latest news came from the NY Times January 27.  We brought this news to the office and they are going to start working on our case again.  Avastin takes about 3 doses to start working from what we have been told.  You can mix Avastin with other chemo drugs.  The only problem is that when things start to work, which one is working?  Cindy is not willing to take the chance to be on only Avastin.  The low dose was measured by the inside of her body.  He doctor has had 4 patients (Cindy the 5th).  They only did low dose Avastin and one of the ladies is in a 6 month remission.  He informed us that oncologists are using Avastin for just about everything.  I wonder if your doctor would consider a lower dose until things get straightened out with your insurance company?  I don't know what step Cindy will be taking.  We think the cytoxin has stopped working but her doctor will keep her on Avastin as we continue our search for a chemo that works.  I will tell her about you and the ladies.  She always asks about you and all her ovca sisters.  She hopes for the best and prayers pour from her to all of you.  Best Regards, Howard

[jane65]

Jan, I am so sorry to hear that the chemo didn't work for you, and the CT results, that's so disappointing.  I just wanted to clarify one thing, I know that Medicare approved the use of Avastin and Gemzar for OVCA, not sure about Medicaid.
When I was at chemo here in NJ, this morning, there was a lady who told me she had spoken to someone with multiple cancer tumors in her liver. She had a new experimental treatment done just once, that put chemo ONLY into her liver, and then filtered it out by filtering the blood that went through her liver. The chemo did not circuate through her body, and the woman didn't have the results yet, if it worked or not..
She didn't have any more info,and didn't know where the woman got the treatment, but she was at RWJ oncology center, in New Brunswick, NJ. It might be something for you to look into. I wish you good luck and good health! .... Jane

[Sandymac]

Jan,
    I, too, am glad to hear from you and sorry the news wasn't better. Miracles do happen.. and praying that one is coming your way..

Love,
Sandy

[marie3B]

Jan,  I am so sorry that this chemo was not the one that would reverse this.  I do hope they approve the avastin.  It just is so wrong that it is available to some and not others.  I do pray for your miracle.  I want one for you as much as I want one for myself.        Love, Marie

[lvfrogs]

Jan, It is ok to post and ramble. We will be able to figure it out I am sure and it is just so good to hear from you as I have been thinking of you so much. I am sorry to hear this news and the insurance companies. Well, they suck! There really isn't another word for that. I hope that you will be able to get the Avastin and it will prove to be a good thing for you. I wish I could give you a big hug. Colleen

[Hazel30]

Sorry to hear about the ct results.  Just wanted to let you know that my Mom also has Aetna insurance and avastin is approved by aetna.  My Mom has been on it for her 2nd recurrence after topotecan was not helping and its been about 4-5 months and we call it our miracle drug.  It is so very tollerable.  Seems like many women have nothing but good to say about it so I hope the same for you.

[dian07]

I just want you to know I think of you all the time and I am so sorry to hear of your present situation.  This stuff really stinks.  Hang in there, Jan.  Please know I carry you in my heart.
Peace.
dian

[dawnlyn]

I am so sorry to hear of the CT results, I am praying for your miracle, and also praying that  you get an answer soon on Avastin, you are in my thoughts. Love, Dawnlyn

[TrudieC]

Jan, thank you for letting us know what's up.  I am so angry that you are having to fight so hard.  I will pray with all my heart for a miracle for you.  Love, Trudie

[SimplyStar]

At my age I am not usually thought of as a "cussing" woman,  but double dam this OVCA,  with such a large group of wonderful women fighting it, it seems to me that we need a whole lot of miracles here and now. It is hard for me at times to accept the way things turn out, but Jan I want you to keep fighting  and I want you to win.  Check out that vaccine Jan, I have been reading more and more about it, some reports make it appear to be a good choice.

[justscore]

You DESERVE a miracle and I am praying the stupid Insurance companies get a clue........
You are missed and always in our thoughts!
Rest and get stronger so you can kick this aweful disease into remission!!!!!

Heidi

[Tybear]

Jan...not sure what to say that hasn't been said already. I'm sorry that you haven't been able to have a break from all this stuff...sometimes a break is all we need to re-charge and feel a little bit better. It sounds like you are way over due for one...
I hope you can get the Avastin approved...although it didn't do much for me the second time, it really did amazing the first time I used it. My tumors haven't grown or spread since then...
I'm sorry Jan...I wish I could offer up something more inspirational but at moments like this all I really want to do is walk outside and scream at the top of my lungs.
We love you Jan...
Becky xx

[butterflytc]

I am so sorry you are going thru a hard time, it is bad enough fighting cancer, without having to battle with insurance and medicaid. Keep your fight girl. I know it is hard right now, and am hoping you will be able to reach deep down inside of you, and find the strength. Will be thinking of you, and hoping some good news comes your way.
Love
butterflytc

[JC145]

Dear Jan .. As with the others, I am sorry to hear things are not going well.  I will continue to pray for you and your miracle.  Just keep praying and believing, and it will happen.  You will get the Avastin and the break you so rightly deserve.  God Bless You, Jan.

Judy C

[Teresa222]

I said it all on the phone the other day.  I am so sorry you are feeling so bad AND having to fight the insurance company to boot.  Let me know if I can do anything for you.
Teresa

[Dee09]

I'm so sorry.... This is such a hard fight and I wish you all the best.

I don't know if this will help but I have been on Avastin through a clinical trial for 7 months so I can tell you a little about the effects.  I also had taxol/cisplatin for 4 of those 7 months so it's hard to pinpoint exactly what is what.  I do know that the Avastin gave me high blood pressure, which is a common side effect and manageable.  It also gives me headaches a couple of times a week which can be pretty severe, but usually a lot of ibuprofen helps.  I've recently gotten some serious joint pain, which may be delayed from the taxol or may be the Avastin.  But my energy level is good and continues to improve and there's no nausea, hair loss, mouth sores, etc from the Avastin.  There are a few very serious side effects that occur in around 2 to 4 percent of ovca patients taking Avastin (perforated bowel, blood clots, stroke) but I figured that's 96 to 98 percent who don't get those, but everyone has to weigh the risks/benefits.  They were very careful to warn me about those, though.

Whether or not it's been effective is hard to say at this point.  After surgery and chemo my CA 125 was down to normal and there was no visible disease.  I'm due for a CT scan tomorrow so we'll see if anything's changed after three months on just Avastin.  My doctor did say he thinks this may be a revolutionary drug for ovca although he emphasized they really won't know until the clinical trials are done.

I'm sorry I can't help with the insurance question but I have been told that there are 1000s of women on various trials, many of which are coming to an end, so hopefully there will be some movement soon.  

Best of luck and good wishes.

[gls2824]

Part of what I do for a living is deal with the insurance companies on behalf of my company's employees.  It's very hard sometimes to get things approved without an advocate.

If you have coverage through you or someone else's employer, the best way to go is to ask the employer for help.  They have clout since they sign the contract.

If not, is there a health advocate in your community?  They may be able to help you. Upi can probably find out if you Google your community's name and health advocate.  A lot of towns have volunteers that do this.

I'm so sorry you have to go through this and I agree with everyone else.  It's hard enough to fight the disease without having to fight the insurance company as well.

You are in my prayers.

[doicat]

Oh honey, I'm so sorry the CT scan did not show the results we all wanted for you.  You did mention that you are thinking of going to Mayo or MD Anderson.  Just to let you know, I am considering doing a trial at MDA involving VEGF Trap.  This looks to be the same as Avastin only from a French pharmaceudical company.  The trial is at http://clinicaltrials.gov/ct2/show/NCT00436501  I hope THEY don't bleep this but I'll send you a message also with the link.  

You are a strong person and can get through this!  I'm praying for YOU and may God wrap his loving arms around you and give you comfort and peace.

Teresa/doicat

[gma718]

I dont really know what to say...I am sickened that you along with all the other women on here are enduring all of this...I am disgusted with the health care system...we pay and pay and they give us stress on top of stress already...wtf...sorry!!! I am angry that you are going through this...I havent been on much because I feel so helpless and so useless...Jan, you are in my thoughts and prayers...and if there is anything I can ever do for you...just let me know.....I will continue to pray for a miracle....please stay strong and dont lose your fighting spirit and your fiestiness....you are a true warrior and defintely a hero to me...Love, Gia :)

[westajul]

Hi,
I am sorry to hear about your ct scan. I am on avastin along with other drugs. My ovca had mets to the liver ...I only had 2 small tumors. Avastin has worked great for me. I have had 10 chemo treatments. I have had very little side effects ( except being tired) from my drugs. I didn't get headaches, high blood pressure or any other side effects.  I do need to mention that because my ovca is acting more like colon cancer my chemo combination is usually used for colon cancer patients. My doctor at MD Anderson is who put me on this chemo program and my local oncologist has followed the program. I loved MD Anderson.  I REALLY hope your Insurance company agrees to pay for Avastin. I have federal blue cross/blue shield and they agreed to pay for mine.  If insurance companies would realize Avastin is cheaper in the long run than a longer battle with the cancer maybe they would agree to it.
If you have any questions feel free to ask. My cea and ca-125 are well with the normal limits and I have my next CT scan this Wednesday...so will know more then. However, at my last ct scan in December my tumors had shrunk quite a bit. My local Onc was thrilled with my progress...actually he did not expect such good results.  Julie

[yrrek]

I too am so disgusted with insurance company's and the games they play.  I am sorry that you have had to deal with that.  I am hoping that your meds will be approved very soon and I am praying for you and your loved ones and the Dr.'s and nurses who will help you, that it will be a miracle and you will be feeling better soon.  I don't think you rambled or sounded confused.  I think you sounded like a sister talking to her sisters:)
Kerry

[bohan54]

Just wanting to add my name and support to this list.  I am at a loss for words though, trying to type through tears.  
Sharon

[nyc lady]

Like the others, I do not know what to say.  

As for the avastin approval....if they don't approve, contact the drug company...and there are also organizations that will help pay medical fees etc, the American Cancer Society...the Chronic Disease Fund.  

Have you done the femara route???  Is it worth a try?  Armidex, any of them...sometimes they keep things stable and that can be okay for a while...they are also easier on the body and might give you the rest you need to keep fighting.

Wish there was more I could say or do.....I hate this disease...and I try everyday to educate people and promote awareness, it just doesn't seem like enough.

Love,
Pam

[PinkTissue]

I saw your post when I was sneaking to surf the internet at the office. I am so sorry to hear that the CT scan result is what you and your family is looking for.

Like all others who have posted here, I hope that your insurance company would approve the usage of Avastin.

Take care. I would be praying for you.

Pink

[Randy411]

I'm currently on Cytoxan and Avastin.   My dr's told me that the mechanism and effect of Avastin (a biologic that prevents new blood vessel growth) is enhanced when given with a "traditional" chemotherapeutic agent.  Thus, the cytoxan.  I'm due for #3 this Friday.   So far it's not been bad at all.   Here's my history: diagnosed in Oct of 2006 (stage IV), extensive surgery followed by carbo/taxol.  In remission from March 07 to Nov 07.  Then recurrence but not anywhere outside of its original location of pelvis/abdomen.  Please be aware that the second-line treatments are considered "late responders" and you need to wait for 3 or 4 cycles to see whether your CA 125 is trending upwards or downwards.  I first went on Doxil for 3-4 cycles; didn't work.   Then went on Gemzar for 3-4 cycles; didn't work.  Then went on Etoposide for a few months; that didn't work.  Then was on Arimidex for 2 months; that did not work.  These all had different side effects but I've been able to work most of the time with occasional days off after chemo or if my red count is really low and I'm just too tired to manage.   I think all of these chemo regimens probably worked "a little" and kept the cancer from spreading outside of its general location.  However, the number of small masses has increased.   They all effect your bone marrow - you surely already know this - and so treatments need to be delayed when your counts are low.   I've been told by my dr that remission is no longer an option for me so our goal now is "stabilization."   That would be fine with me as long as they find a drug that'll keep those darn cells just where they are and with very little activity.   I don't care if I'm on chemo for the rest of my life.   I'm so sorry you're going through this but I hope that the Avastin will help you and that you do not have much trouble with it.  
Randy

[mb16]

It's a tough time and I hope you get some good news soon. Wishing you well. Wendy

[crecco]

  Hon, I know how this latest news must have hit you. I wish you the very best and hope that you are able to recieve the Avastin.
  I think of you daily and have been really missing my computer. I will call you soon.
I am also glad that you are taking extra measures with MD Anderson and John Hopkins. That proves to me that you still have that fight in you, and that fight is what will get you through this.
  I love you Jan. Keep the fight and hope alive.
  Talk to you soon.
    Love Chris

[Mary 53]

Jan,

I thought I posted to this yesterday... I am sorry to be late here. Thinking of you, as always!

Much love, Mary

[Brownie3321]

I'm sorry honey, I really am. I don't know what else to say beyond I am always thinking and praying for you...ALWAYS. Love you Jan

[standalone]

I am so sorry for the additional stress - everything- is additional stress- dictated by insurance - keep fighting. You mentioned Johns Hopkins. I had surgery on 1/27 there. The Dr Teresa Diaz -Montes has been very sweet and the entire team at the Kelly Gyn?onc Clinic has been wonderful- hear is the # for appts- 1-410-955-6700  Ina Barnes(appt coordinator)- ITheir website says they also do case consults via electronic review.
My prayers are with you.
Eileen

[ladyjogger31]

I am so sorry to hear of the CT results, I am praying for a miracle, and also praying that  you get an answer soon on Avastin and hope it helps you.
Hus and Prayers, Terry