Should I stop Herceptin?

jener8er · 04-17-2006, 05:06 PM

Hi everyone, I hope you all can give me some words of wisdom here. I have been getting Herceptin since January 05. When it was going to be a year this past January, I asked my onc for another year. After reviewing my chart, he said he could see no reason to stop so sure, take it for another year. Well, now the insurance bills are starting to roll in and it is killing me. I have a PPO with $1000 deductible (which was met weeks ago) after which I am responsible for 25% of all procedures. That is coming out @ $622 per dose, which adds up pretty quick getting treatments every 3 weeks. Add to that the PET scan, bone scan, brain MRI, mammos and then reconstruction, I think I'm going to go bankrupt!

So my question is, am I being overly cautious with this 2nd year and should I stop the Herceptin? I don't mind doing it, and I like to see my doc every 3 weeks, but it might be nice to take a break too. Could I take some time off and go back on it later in the year? Or am I tempting fate??? Decisions decisions... why are they never black or white?!

Becky · 04-17-2006, 05:24 PM

Dear Jen

It will not be a benefit to you to stop Herceptin and then start back up again in several months (unless there was a problem with your heart). That said, you need to weigh continuing or stopping for good.

My year of herceptin is up in mid June but my onc is going to keep me on another 5 doses (I get the triple dose every 3 weeks) because those extra 5 will take me to 2 years post diagnosis. He says that this "could" be wise as more recurrences occur within the first 2 years. Since I started Herceptin 4 months after my last chemo (I was one to benefit from last year's ASCO meeting announcements), it isn't that many more treatments to get me to 2 yrs post diagnosis. Without the results of 1yr herceptin versus 2yrs herceptin, my onc is very,very relucant to go further.

Also, there was a Finnish study that eluded to the fact that 9 weeks of Herceptin can be just as good as one year.

However, this is for you to decide as there are not results for or against more than one year of Herceptin.

You need to judge this with your doctor on what is medically sound and why he thinks 2 yrs is better than one year. I realize money is a factor but you cannot base it on that (after all, you are priceless) and base it on your doctor's opinion and your opinion.

Good luck. It's difficult because there are no 2 year results yet.

Kindest regards

Becky

Lisa · 04-17-2006, 09:40 PM

I don't have a recommendation re: continuing Herceptin. I just wanted to vent my frustration that these enourmous costs are all too frequently the deciding factor in the treatment of all cancers.

O.K., now that I've said that, I hope your intuition leads you in the right direction.

Love and light,

Lisa

saleboat · 04-18-2006, 07:53 AM

Hi Jen,

I had Stage IIIC bc, and will finish my year of Herceptin in August. I do not plan to get an additional year, and I know that my Onc would never give it to me. There is no evidence to suggest that it would help, and could possibly do damage to my heart. There is evidence to suggest that a shorter course would be appropriate, and hopefully the two year study will be out soon.

I cannot put myself in your shoes, but for myself, I half wish I could get less Herceptin-- my MUGA is dropping and that really bums me out. If the disease were to progress, I hate to think that my heart would have sustained too much damage to try another round of drugs.

I understand the motivation to try and do everything that you can. Have you considered one of the vaccine studies? I am looking forward to ending Herceptin so that I can enroll in one-- early-stage patients who are on Herceptin are NOT eligible.

Good luck with your decision.

Jen

Taffy · 04-18-2006, 08:10 AM

Can I just ask you what Stage 3c is please? I have heard of Stage 3 obviously, I am that stage myself, but wondered what the c stood for.

love
Taffy

Lolly · 04-18-2006, 08:26 AM

Taffy, just jumping in here to give you a link to the American Cancer Society's page on staging; it provides an explanation of how to differentiate between Stage IIIA, IIIB and IIIC.

ACS: How Is Breast Cancer Staged?
http://www.cancer.org/docroot/CRI/co...5.asp?sitearea=

jener8er · 04-18-2006, 10:12 AM

Thank you all so much for your words of wisdom - as usual! I have decided to stay on Herceptin till the end of the year. I do have a max out of pocket of $4000 so when I reach that, I guess I don't pay any more. I am getting reconstruction this summer, and my 2 year anniversary is in October, so I think I'll feel I've done everything I can if I stay on Herceptin till December. Next year will be something new and hopefully I'll just be doing quarterly checks with my onc. I don't know what I'll do with all that extra time I'll have with no Doctors appts!!

Thank you all again, you don't know how much it means to me.
Jen

Monique M · 04-21-2006, 06:13 PM

I agree with Lisa-- it is horrible how high costs effect the course of cancer treatment. We are blessed with health insurance that allows me to pay only $20 co-pay for each herceptin treatment. Thus, cost was not a consideration when deciding whether to proceed with a second year of herceptin. I do not know what we would have done without the good health insurance.

Peace and Blessings,
Monique

newgg · 04-22-2006, 11:47 AM

The cost is about to make me stop herceptin. Am one of the gals that is a year out of chemo and doc agreed to follow the chemo with one year of herceptin. Started in Jan after was told that approval from federal BC/BS was received. HA ! So far....about $30,000 in cost and they have not paid one red cent !! Tons of paper work requested from doc, phone calls and fax info from me...still the insurance has not provided $$$ for treatment. Any suggestions would be appreciated. Have loading dose plus 3 others done. Sure wish we had more info on that 9 week course of treatment !!
Take care everyone....fight !

sassy · 04-22-2006, 12:45 PM

Try reminding them that Herceptin is on their list of approved drugs for cancer treatment. Stage should not matter. Not sure what they have been requesting, but stick with it. Unfortunately I think sometimes insurance companies try to "outwait" you or "outpaperwork" you until you just say "forget it." Have they actually declined payment, or just not yet approved or made payment?

Sassy
________
Vaporizer volcano

Bev · 04-22-2006, 07:46 PM

Hi newgg.

call bcbs and get a manager on the line and have them review it. I have carefirst and had then eventually approved early stage herceptin last year. I think they will approve it if you're persistent. Good Luck. BB

hutchibk · 04-25-2006, 10:01 PM

I am currently pursuing/appealing BC/BS for denied payment of a Pet scan. My insurance agent suggested that I cc: the State Board of Insurance/Consumer Protection/Complaints Division on my appeal letter. I haven't heard back yet from BC/BS (they have 30 days to respond to my appeal, it has been 2 weeks), but I did get a letter last week from Board of Insurance that they have reviewed my complaint and will be investigating the denial. My agent said that often when the regulators get involved, the insurance companies comply quickly without question. I am hoping so. So far BC/BS has paid for my Herceptin with no problem. This denial of Pet has been my only complaint up to this point. I suggest you contact your State Board of Ins and ask them what department could help you investigate this... insurance companies don't like to have a bright light shone on them and they count on the fact that the consumer will tire of appealing/pursuing and that they don't know to contact the State Board for assistance.

newgg · 04-26-2006, 04:28 AM

Yes,....after calls to managers, asking what info they required, used the fax to get the info to them, doctor letter of need, brief history and physical, etc. About a week later was notified about their payment and a write off by the oncologist. Was told that it would have taken the paper mill at the oncologist office a couple of weeks to even copy and mail the info. Thank goodness I have maintained a huge folder of all my medical info and get copies at each visit. So on we go !! Stated that this info will be required each and every time.....huh??? Anyway....as stated above...they just want to drag out the process and want you to say....." I quit" and you do have to stay at it.....call, and call and fax and call some more. As already suggested..keep going up the line for a manager and one with some medical background. Get a name so you can always talk to the same person. We are Warriors and know how to fight!!!!