I could really use some input

DeenaH · 12-26-2011, 12:48 PM

I found out a week ago Friday that my lung mets have progressed. I have been on navelbine, herceptin and tykerb. I had significant regression on my first 2 scans post navelbine, so this progression was a surprise to me. In June I did a chemosensitivity assay, which was why I was on that combo. Now it is decision time again, and this time around things aren't as clear to me as they have been in the past. That is so scary! So, I could really use some help brainstorming from my fellow cancer sisters.

According to my assay, my next best option (from a sensitivity and toxicity standpoint) is everolimus/Herceptin. I got my UCSF onc to prescribe, but my insurance denied it. I plan to fight that, but could use any input from anyone who has been through that process.

Another option is Xeloda/Tykerb. My concern with this is that I am already fighting diarrhea. I've been having problems for months and it landed my in the hospital in august. Currently I bleed with every BM. Adding xeloda would make it worse. But, if I must, I must!

My assay showed resistant to Carbo/Gemzar, which is something my local onc is suggesting. I won't do it. At least not now. My marrow is so beat up from the navelbine and I really feel it needs a break.

In a few months, I may be eligible for the MM-302 trial at UCSF. I might join you, Courtney!!

Any other suggestions? I wish there were a TDM-1 trial I could do. If only that were available now! Darn FDA!!

Thanks for any input. I feel pretty good physically since I am now 2 weeks post navelbine. Isn't it strange how we feel better without treatment, yet sicker with the cancer?

BonnieR · 12-26-2011, 01:01 PM

Deena, I don't have any advice on your specific questions. Just wanted to say that I hear you and I know others will be along and able to help you weigh your choices
This is a hopeful season and I wish you well. Keep the faith.

jml · 12-26-2011, 01:39 PM

So sorry you have to go through the shock & disappointment of this disease on the move again and having to make new treatment decisions to beat it back again.
Knowledge is power and you sound really well informed.
So you do the best you can with what you know and hold on tight with hope & optimism.

Whenever I'm on my off week or on a treatment break, I think,
"Holy Cow, is this what the rest of the world feels like? Must be nice!"

Keep the Faith~
Jessica

Mandamoo · 12-26-2011, 03:08 PM

Hi Deena I live in Australia so can't help with the insurance question - sorry. Was it significant progression? I have been on everolimus, navelbine and herceptin for 6 months now - my first scan showed regression but all scans since have been stable or slight progression. Several radiologists have viewed and say it is all just stable from the start (mets are multiple and largest is 8mm most are under 4mm) - they can vary mm or two up or down from scan to scan. My onc adopts a sit and see unless progression is significant. I am just wondering if it is too early to jump ship?
Also wondering if having had navelbine precludes you from Bolero trials? Of course you risk getting placebo too.
I wish you the best in finding a solution.

tricia keegan · 12-26-2011, 05:00 PM

Deena I've been reading great things on the Everolimus and do hope your insurance will cover that for you, I know its extremely expensive, perhaps a letter from your onc may help?
I'm sorry I can't help more but do send my best wishes to you!

Rich66 · 01-04-2012, 02:32 PM

Did you get updated ER/Her2 pathology with the chemosensitivity biopsy?

KDR · 01-04-2012, 03:32 PM

Hi Deena
Where are you located? There are a few T-DM1 trials recruiting now.
Karen

DeenaH · 01-05-2012, 07:18 PM

Rich- I did, and it was still HER2+.

Karen - I am near Sacramento, ca.

Rich66 · 01-05-2012, 07:29 PM

Er-?
..........................

CoolBreeze · 01-05-2012, 07:40 PM

There was a TDM1 trial in Stockton - is that still going on? Did you check? That causes diarrhea too though.

What's the reason you have diarrhea? I'm sensitive right now but have you had a stool culture done and tested for a disease, like c-diff?

I thought tykerb caused diarrhea and not xyloda but maybe I'm wrong. Can you try your chemo and herceptin?

Often, the insurance will deny it the first time but then approve it the second. However, there is recourse, you can fight the decision with the health insurance review board and they have to give you a reason for the denial and an alternative. I forget the name of it but the Sacramento Bee does articles about it on Sundays.

Other than that, I don't know what to tell you. I didn't even know there were assays that would tell you which chemo would be best. My onc seems to go by his own experience. I think he's pretty forward thinking and has been right about everything he's said so I'm not concerned but what would be the chemo if the assay wasn't telling you want to do with your SEs?

I'm sorry you are facing progression and I'm sorry this is happening. It's just not fair. I hope your insurance company changes their mind, and fast. Or, you get into a trial. UCSF should know of cutting edge trials so keep on them.

CoolBreeze · 01-05-2012, 07:47 PM

Consumers with questions about obtaining the right care at the right time are encouraged to contact the DMHC by calling (888) 466-2219 or by logging on to www.healthhelp.ca.gov.

California Department of Managed Health Care. Help Center at 1-888-466-2219

DeenaH · 01-07-2012, 11:52 AM

Rich - yes, ER/PR-

Cool breeze - I believe the TDM-1 trial I. Stockton stopped recruiting. My onc made contact with them a year ago and it was a possibility at the time, but I hadnt tried enough conventional treatments at the time to qualify. Xeloda and tykerb have overlapping toxicities. Without the assay, I would have done xeloda before navelbine. The navelbine worked well for a while, so I don't regret doing the test. So far I have had a gut feeling with every turn on this journey. I have not been wrong yet. My gut is telling me that Everolimus is my next best option. I want quality of life too. I have a case manager now, and she is working on getting approval for me. If I don't have a decision by Monday, I will have to start xeloda. I hate this whole thing. I hate cancer!!!

DeenaH · 01-07-2012, 11:55 AM

Oh and I forgot to answer your question about Cdiff. Last summer when the diarrhea hit me suddenly after my lung surgery, we thought for sure it was Cdiff. Multiple tests showed it wasn't though. Now I only have problems a couple of times a week, but my bowels are still so messed up. I bleed sometimes, and I have a lot of discomfort with BM's. Fun times! Cdiff is no joke, and I am so glad you are ok!

Rich66 · 01-07-2012, 12:53 PM

Although recent everolimus waves have to do with combining with endocrine therapy, the last bit here may be helpful in gettng insurance coverage:

http://www.businessweek.com/news/2011-09-25/novartis-s-afinitor-curbs-breast-cancer-in-game-changing-study.html

Quote:

Among women with breast cancer that had spread after treatment, Afinitor more than doubled the time until their disease worsened compared with those who only got Pfizer Inc.’s Aromasin, according to results presented at a cancer conference in Stockholm today. The trial was stopped early because the primary goal was met earlier than expected.
“This could be game-changing,” said Jose Baselga, a Harvard Medical School professor and chief of hematology and oncology at Massachusetts General Hospital who led the study, in an interview. “I don’t recall a study in this patient population that had this magnitude of an effect. It’s pretty exciting.”
The findings move Novartis closer to marketing Afinitor for a new cancer type. The Basel, Switzerland-based company plans to apply for regulatory approval this year to sell Afinitor as a breast cancer treatment, and expects it to add $1 billion to annual sales

Also, if you end up on Xeloda, could you continue Herceptin? Adding Metformin might reverse resistance to Herceptin.

Lien · 01-07-2012, 01:55 PM

I live in Europe, but know that some insurance companies always deny a first request. They don't even look at it. So appealing sounds like a good idea.

Hope you find something to kick those cancer cells into submission. How dare they progress!

Jacqueline

JeanBeanie · 01-07-2012, 02:16 PM

I have heard that some doctors are prescribing TDM1 under the rule known as "compassionate use", which allows a seriously ill patient to use a new, unapproved drug when no other treatment is available.

Heceptin and Navelbine worked great for about 6 months - my markers are going back up and I found out during the holidays that I have 4 small lensions in my brain - I also have to start Tykerb and Xeloda - I am not happy about it either. I have been going on clinicaltrials.org there are alot of trials that might help.

Lori R · 01-07-2012, 05:51 PM

Deena,
Responding to your question about insurance denial. I recently successfully worked through this process.

First, your Dr. has to be on board with the approach. My Onc wrote a page and a half letter about my history, quoted a study and submitted it to my insurance.

It only took 2 weeks for approval...but here is the catch. (there is always one when talking paper, paper more paper)

I HAD to be involved every single day. I followed up with the insurance to make sure I had the right FAX (we didn't), I called insurance to make sure they showed evidence of receiving the FAX (they hadn't).

My insurance has an emergency review process. So make sure that you are in that process to expedite the decision.

I was approved for Herceptin + Tykerb (darn diarrea causer...I hate it) + Abraxane.

We all know that this is one of the toughest moments in this jouruney. The uncertainty is very stressful.

Hang in there!! You can be successful with an appeal to insurance. And it may not take a month.

Lori