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starting Gemzar/5FU Wednesday- update: it went well

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

UPDATE Wed, 3/17:

Hi again,
All went well today. I've just been home about a 1/2 hr from getting the "new" chemo Gemzar (gemcitabine) along with 5FU and leucovorin. All went well- no weird allergic reactions, as I'm often prone to getting, no problems at all. I didn't even fall asleep the whole time but had a lovely chat with some "friends" I hadn't seen in a while since the last time I went for chemo there back in November. It was a definite drag to have to come home wearing the 5FU pump, when taking Xeloda was a definite option. My oncologist changed the order from Xeloda to 5FU so that, since the insurance will cover it, I can also get coverage for all the "extras" put into my infusion line such as decadrhon (sp?), saline, and something else that I forgot the name of. If I had just been on the Xeloda, the insurance wouldn't cover the cost for anything that went in my infusion line since they're not covering the Gemzar. The only painful thing about today was pulling out the credit card to pay for the Gemzar- $2700 for a month's treatment. We're going to have me go for two months (4 treatments) and then scan again to see what's happening. We can't afford to keep paying for it probably at that point, so I will hope and pray that we'll get somewhere by then in our fight against Health Net, or maybe another clinical trial will open up that I could then join. Today was the first time in all the times that I've had to start up the chemo again that I haven't felt depressed. I was more than eager to get going with this treatment, so I was relieved to have gone today.
Here's to HOPE for ALL of us!!!!!

Blessings,
Lisa

-------------------------------------------------------------------------------------------
-Original Post on Mon, 3/15/10 -

Hi,

Lots of phone calls and emails today. Health Net denied my appeal to their original denial of gemcitabine (Gemzar) with Xeloda. Calls back and forth. My lawyer husband called and spoke to the Health Net Medical Director and pointed out some inconsistencies and mistaken facts in their letter of denial to me. Didn't get very far. We will have another lawyer (to avoid "conflict of interest") draw up some kind of letter. My onc Dr. Helton said he knows of two of his patients who had success with other "non approved" drugs when they got a lawyer involved.
Some people here on the board had mentioned a few resources of where to get help, so we are pursuing those as well, including the PAF (patient advocate foundation).
My oncologist called me and we discussed the situation- my husband and I agreed that we don't want to wait anymore to get me going on some kind of treatment. One bit of good news- my CEA level tested on Friday went down slightly from 97 to 81 this past month. That was a HUGE relief, as I was expecting to see it much, much higher. I have to believe that it's because I put myself on my leftover Xeloda a week and a half ago, but who knows.
So, I will be going in Wed. to get Gemzar with 5FU/leucovorin. I'm going to be paying cash (on credit card) for the first infusion, in hopes that I may end up getting reimbursed by Health Net eventually, but not counting on it.
The reason I'm going to take the 5FU pump with leucovorin instead of the Xeloda pills is (for now anyhow) because that way we can get insurance to pay for the I.V. fluids and other meds that will be put in my IV along with the Gemzar since they'll pay for the 5FU bolus into my port. Otherwise, if I just take Xeloda pills, insurance will not pay for anything at all that goes with the gemzar infusion. They will pay for the Xeloda or the 5FU pump. I'd rather avoid the stupid 5FU pump, but if it will save us a couple thousand a month by doing it that way, I'll do it. This way, the "only" thing I'll have to pay cash for is the actual gemcitabine drug, not any of the other items infused into me. The gemcitabine alone will be $2700 a month. Definitely a lot, but not as much as the $4,000 a month I was told. I guess that's what it'd be closer to if I had to pay for the saline, antinausea, and other drugs they put into the chemo cocktail.

Our income level certainly does not make us rich by any means, but it's "too much" to qualify for any help or reimbursement from the drug company (Eli Lilly)- I already spoke to them about it. Fortunately, we do still have a savings so we can do this for a few treatments. Can't keep it up forever, that's for sure, but we'll be okay for now (I think/hope). :)

Thank you to all of you for your concerns, advice, and prayers.

I'm now going into unchartered waters a bit- we'll see what the side effects of this one are! Supposedly, it is fairly well tolerated by most patients in the past clinical trials, so that is good.

-sigh of relief- onward and forward into more treatment again...

Lisa

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I'm glad to see you starting treatment. I hate it that you have to pay out of pocket. You really, REALLY, deserve some good results with all you've been through. Lisa, I can hardly wait until we get to read some good news from you. I hope that that day is soon. Onward and forward indeed.
Roger

Brenda3.16
Posts: 211
Joined: May 2009

Lisa, I am glad that you will be starting your new treatment. I hope that you are able to find a way to get it paid for quickly.

I have learned so much from all of your posts over the last year since my DX. You have so much knowledge and are always there to share it with everyone.

I am going to a new doctor at Fox Chase on Wed for another opinion.

Good Luck with the new treatment.

Brenda

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa,

Best of luck with this treatment. You really do your homework + you deserve to catch a break - I hope this is it + I hope all the financials regarding your treatment will get sorted out.

Jaylo969
Posts: 827
Joined: Jan 2010

I am glad you are going forward with treatment and I am so sorry that the insurance Co. is so hard-hearted toward your case. I was just telling my son today that if we hadn't had insurance one Folfox treatment would have ruined us. I saw the amount charged to BC/BS and one treatment was $10,585.00 excluding doctor fees and labs. So, I am happy you all have enough to get by with this treatment and hope that something will come through.

My thoughts are with you. I admire your courage so much.

-Pat

cowman
Posts: 61
Joined: Jun 2009

Happy to hear you are getting started but sorry about the insurance woes. That is very frustrating but we'll keep hoping that they will see you are serious about this and just approve it. If everything goes well, you could get it on the the "approved list"? The CEA sounds good too. Didn't you say you have been really trying to eat healthy lately and juice too?????

Thanks for letting us know your plan - Sounds good.

dorookie
Posts: 1736
Joined: Jul 2007

the whole insurance thing just pisses me off. who are they to override a doctor? Who are they to play God and decide who gets treatment or not. I swear I could just B*tch Slap insurance people, or the ones that make up this BS. I am sorry I am just so upset, they have no RIGHT at all to do this to you! I wish I were a millionaire were I could help, I am so sorry you have to go through this BS on top of fighting for your life. I just want to scream, I cant even imagine how you must feel. You come across so calm and cool, you are amazing, Girl!!!

I will be praying for you, not only that you get cancer free but all the insurance BS gets settle very very soon..

*HUGS*
Beth

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

My hopes and prayers out to you and yours Lisa......

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

There are a few people I'd like to tie to tree.

Lisa, I'm so sorry about this. Prayers and hugs go to you.

mom_2_3
Posts: 965
Joined: Nov 2008

Lisa,

You have more than likely read about the "Insurance Warrior" who is a woman diagnosed with Stage IV appendix cancer in 2005. Her treatment (HIPEC I think) was denied by her insurance company but she persisted and won the battle with her insurer. She is still doing well today. Perhaps she may have some ideas/suggestions for you for your case. Check out http://www.pmpawareness.org/files/COPING-article-July-20080001.pdf and http://theinsurancewarrior.com/.

In the meantime I am so glad that your CEA is falling and as suggested, perhaps your juicing is having a positive impact as well. Keep it up! Try and exercise as much as you can. And I will be thinking of you on Wednesday as you start your new treatment.

Sending love and hugs,
Amy

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Amy,

Thanks for mentioning the insurance warrior. I had not heard of her, and so I checked out her website and story. Very impressive. Although my husband is a lawyer, this is not his area of specialty and we were going to another lawyer in his office to write up a letter. What this "insurance warrior" lady talks about is good- I think we'll write up something based on what she says and put it on the law firm letterhead where my husband works. It may take some time- I hear that legally insurance companies can get up to six months to reply to all the garbage, but I will still work on finding out more about it. You know, Amy- this is worth mentioning on a separate thread. I think I will do that.

Lisa

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

I sure do hope and pray that this new treatment will be 'the 1' to help you to recovery.

Good luck with the fight with insurance...if all else fails...get the media involved...the big companies don't like bad publicity.

Marie

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Way cool Lisa!!!! I am so happy you are on the move again. I will keep praying that the insurance kicks in for you. This is great.... Take care

Jennie

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

It is about time to get something happening. Hopefully the insurance battle will be resolved in your favor.

Good luck on Wednesday...

Rob; in Vancouver

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Gosh I'm sorry you're having to fight for payment but I'm thankful you have the option to pay until this is 'approved'.

Praying this is the answer we've been waiting for, for you!

Diane

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Insurance companies...don't even get me started! I highly recommend the insurance warrior,also. I've heard her speak a few times and I was pretty impressed. Give her a shot anyway.

Good luck with your new treatment. I will be watching closely as I am looking for a new chemo regimine myself.

Kimby
Outwit. Outplay. Outlast.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

I like those dropping CEA's. It is not just your health care system. In Ontario I could get the 5fu bolus and any drugs that went into the IV for free.....if I took the xeloda I had to pay for it.....they told me anything they gave me in the infusion room was free. Live in a fairly small town so I offered to come up to the hospital a couple of times a day and take my xeloda pills in front of them....they were NOT amused and I had to pay

good luck Lisa

mags

coloCan
Posts: 1956
Joined: Oct 2009

from insurance companies and don't think it will improve with the gov't taking over. Keep fighting Lisa but its a shame how much energy is diverted from battling cancer to battling insurance companies.....Maybe thats their plan-delay as long as possible until you're not around to fight.....Don't give up(or get too aggrevated).....Steve

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

I just had to post. I just hate the insurance stuff. I can't see why all the power's that be think things are okay the way they are now. We need help now not in four years.

I'm glad you are starting something. Good luck and I will be watching to see what takes place. Always thinking about you Lisa. Paula

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi Lisa, I have to tall ya how lucky we are to have you on the board here. You are truly a fighter and as well as teacher to many of us. Keep up the fight and please let me know if you need anything.

Life is funny sometimes
Brooks

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thanks, everyone! I feel relief today, even though we got nowhere w/ the insurance company as of yet. But I feel relieved to be starting up treatment anyhow tomorrow & very relieved to find out that my CEA actually dropped a little- I do think it was because I put myself on the Xeloda the week and a half ago.

Well, I've got lots to get done today- need to go to walmart and buy all the things I ended up not getting on Saturday when I fainted there- lol! Don't worry- I will check the blood pressure before leaving the house :) Feeling good today...

Wishing all of you a blessed day-
Lisa

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

They still letting you in WalMart? LOL

Brooks

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Brooks,

I'm actually too embarrassed to go back to that particular Walmart yet. :)
Just in case I have any problems again (which I certainly don't plan on, but no one ever does), I'm going the opposite direction to the WalMart in Oceanside. My mom and sister in law live over that way and it's also nearer to where my "in-network" hospital is- lol.

Lisa

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

so glad to hear that you're starting the treatment that your doctor is recommending and the one you've been looking for. sorry the insurance company is not paying for it but hopefully they'll come through so it won't be such a burden for you and your family.
Holding you in the Light,
Audrey

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Lisa,

I'm so glad you're starting the treatment, but I sure do hope something can be done about you having to do it out of pocket. I'll be praying for a good turn of events on that.

*hugs*
Gail

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Lisa, you have all the luck, prayers and good vibes I can send your way. Please, keep us updated. Plus, sorry you have to pay this oop. Freaking ins. companies.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

You are all the greatest & I love and care for you all!
I went in and had my chemo today & all went well.
I posted my update by updating my original post on top.

Blessings to you all,
Lisa

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Oh Lisa I am so glad it went well....no weird things happening....that's good....not happy about the cost but so glad you go through the first day

rest well

mags

amyb15's picture
amyb15
Posts: 109
Joined: Jun 2009

lisa. I am really glad to hear your treatment went ok. It is terrible about the insuracnce company. Try not to wotrry about it. Saving your life is well worth every $.

Amy

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm just trying to catch up with everyone - and I'm so happy to see that you do have a new plan of attack and have been able to start it. I hope this works well and quickly, so you can see progress after your 2 months of treatment.

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

I'm so glad it went so well for you! Keep up the good fight, Lisa. You know I'm thinking of and praying for you.

-Sheri

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