drugs should arrive tomorrow

[Joy]

well $2,876.23 later I have the drugs coming to my house tomorrow. I was awarded $7500 from the Patient Access Network Foundation for which I'm very grateful. But a little math and you find this is only good for 3ish months. So I have a little time to strategize. I have a lists of things to do. I am writing a complaint to the insurance company and the Colorado Division of Insurance. I will talk to a medical director after the 23rd about the options and I will also have a letter ready for the GSK rep that comes to the onc office. I will also apply to Healthwell for more assistance. Unless of course the drugs don't work and none of this is worth it.

I'm feeling so overwhelmed right now. Finances are a mess, my other dog Jasmine was diagnosed with cancer today (we lost her companion to melanoma 11/2 years ago). She is about 13 and I know it is to be expected-still really sucks. My last minute CT showed progression in the liver in less than a month, my daughter's big birthday party is tomorrow night at her dad's house and we are trying to organize a treasure hunt (I have to type of 8 treasure maps in "Pirate"...aaargh), I teach my parent/child class on Saturday morning while a huge school benefit garage sale will be happening at my house. I'm filled to the gills with furniture, baby things, tools-REALLY scary tee shirts with semi-trucks and eagles on them and other typical garage sale items. All of which I have to price between today and tomorrow. And I wonder if I should even take the drugs before my class and the garage sale or just wait until Saturday night?-kinda sounds like conversations I used to have in college only the drugs were different.

I'm overwhelmed and worried AGAIN that this treatment will not work and it is the end of the line and I'm freakin' TIRED of it. I'm so sad about my dog.

[Esther]

Joy, good news that you will be getting your meds. 3 months will be sufficient to be able to tell if it is working for you or not.

It sounds as if you have alot of things going on right now! Maybe too much. Just half of those things would be enough to make anyone feel tired. In addition to that you have also just expended all that emotional energy getting your Tykerb issues resolved.

I would wait until Sat night before starting your meds. You may not have any side effects, but you never know, and you do have alot to get through in the next few days.

Good luck with it all, and may Tykerb kill all those cancer cells for you!

[cassie]

Joy
I get tired just reading all the things that you have to do!!! How do you have the energy? I'm so glad you finally got the meds,but the PRICE, that's scary.
I sure hope that you find more financial help. This is really a shame that your energy has to go to worrying about money when other more important things (like keeping a positive attitude) are needed. I know this is going to work out as is the meds. It's going to WORK!

So sorry to hear about your dog. They are so much a part of the family. At 13 years he/she has had a long and happy life knowing what a great master(mistress) it has!

Lots of hugs and prayers going your way. cassie

[lilyecuadorian]

I'm enyoing so much the way how you write I can't do it even in spanish ....(my first language) and your treatment is going to work I got a lot of good feeling about that , is going to work ....just wait ....you will see

[Carolyns]

Joy,

You remain in my thoughts and prayers. You have been through and continue to go through so much.

Love, Hope and Peace,

Carolyn

[Odette]

Joy,

I have never been able to do as many things as you are doing even before cancer! Most of the time you probably enjoy being so capable, but now together with fighting for your Tykerb it is too much!

You will get through these days but then you must expand all your energy just on yourself to get well. To kick the butt of those nasty liver mets!

In this line of thought I would take the Tykerb as soon as it arrives (only 1 hour after and 1 hour before a meal) also no grapefruit juice.
You are the most important this time!

I just startet Tykerb 5 days ago, I do not have any debilitating side effects, I trust you will not either!
Should you have some side effects, you might just say to the people around you: I have to lay down a little, I started a new chemo. They will understand.

Happy Birthday to your daughter Joy, enjoy it is your special time too!

Odette

[Andi]

My goodness Joy - you do have a lot going on! I hope your daughter's birthday party is a big success. My only suggestion regarding starting the Tykerb would be to have an "Immodium" Plan. You wouldn't want to have to be hanging out in the bathroom during the garage sale. I am so sorry to hear about your dog, pets have always been important to me, especially when they have been there during our b/c battles. It stinks when things seem like they pile up on us at times. I am hoping and praying for you that this combo will sock it to your liver mets and at least get you to stable disease before you know it. I also hope that in 3 months things will ease up a bit on the Tykerb. Enjoy your busy weekend and birthday wishes to your daughter.

[Lolly]

Joy; first of all YEAH!!!! With the drugs coming today and you getting started on them your anxiety level should decrease. We all know that lost feeling when we're in limbo waiting to start a new treatment and knowing the cancer is unchecked. I'm so glad you're getting started, and hopeful you will see improvement. And I'm on a not-so-slow BURN about the problem of access with Tykerb. I also have a huge co-pay, and am preparing letters to go to my insurance, senator and congressman. That our insurances cover Herceptin which is just as expensive as Tykerb, but don't cover Tykerb simply because it's an oral chemo is outrageous. But I've griped enough about that in a previous post.

Secondly, you are doing a LOT of stuff and it's no wonder you're overwhelmed. I know you want to be there for family and community, but maybe you could slow down a little? Take a breather and take some time for YOU.

I'm so sorry about Jasimine. It's just a bummer, and nothing helps ease the pain except knowing that she has the best possible family to ease her passage.

You are in my thoughts and prayers,
<3 Lolly

[hutchibk]

Hey girls, how can we organize this into a big cohesive push about insurance and Tykerb?? I know that GSK must also be pushing politically for it to be covered, with as much as they are having to provide for free!

[Odette]

Joy, Brenda and all of you brave Warriors,

Lolly's plan to write to her congressman and senator is great! And to the Insurance companies.
Maybe we could get a campaign going to have letters arrive from 50 states (dream big) to the New York Times and other national papers, TV news channels etc. on the same day!
We could get Elizabeth Edwards involved her cancer is HER2 neg but that should not be a problem. (My daughter knows her daughter).

We should get it nicely planned! Imagine all of the other women who have the same problem as we do and are not even in our HER2 support group.
That was me a month or so ago.

Luckily(?) our income is so low at the moment that I was approved for both Tykerb and Xeloda to get it free, but if I had to rely on my insurance I would have absolutely no help.

Best wishes to you all!

Odette

[chrisy]

Joy,

Wow. No wonder you feel overwhelmed - I felt that way just READING about your overscheduled, WonderWoman weekend. I agree, see if you can back off a little (after the pirate treasure hunt that is!) and focus on you. I know that's easy to say and hard to do. But you really have to remember to breathe!
I say again.....BREATHE.

I know you're sick of it, but your life is worth it. Maybe the garage sales aren't worth it, but you are. For the pirate language, that should be easy - just use all your nasty cancer fighting words - ARGGH, you filthy stupid scum

I have a feeling the Tykerb will work - Herceptin worked well for you for a long time, and once you get started you do have some time to figure out the $$$. I have a feeling this will work out too.

You decide when to start the Tykerb, but I also have had minimal side effects, although I am not taking Xeloda so that's a harder combination.

Breathe, my dear.

Much love
Chris

[vickie h]

Joy, File a complaint with the Insurance Commissioner. They have got to pay for Tykerb because it is FDA approved and you need it to save your life. I was told by an attorney that you have a good case against your insurance co. and that they are acting in bad faith. Let me know how it goes. Much love to you, Vickie

[hutchibk]

The problem as I learned last month is that it is classified for coverage under prescription benefits of your insurance because it is oral. (not like infused drugs which are covered under medical benefits). Sadly, many of us have a cap on our prescription benefits (mine is $1500 per year) so it knocks us into the 'black hole' of coverage. If we were on Medicare, it would cost us $5 co-pay. Because we have insurance, but caps on it, we are forced to go out of pocket or look for assistance. It should be covered under medical, that is all there is to it. I don't know how these decisions get made between drug companies and insurance companies, but I would like to kick someone in the shins until they see what the problem is...

[vickie h]

I don't know how old Joy is but I was disabled from my cancer at 55 and have been on medicare ecer since. Apparently you can go on medicare whenever it is deemed that you arre permanently disabled. You don't have to wait until your sixties or even fifties to get it. I know of someone at 35 who is on Medicare. Love, Vickie

[hutchibk]

To receive SS Disability you cannot have worked full-time for 6 months. And it takes 48 months from approval (and also of not returning to full-time work)to qualify for Medicare. I initiated the process in April 06, and it took me until October 06 to be approved. They approved me for SS Disability retroactively to July 05 - as June 05 was the last time I was able to work full-time. Subsequently, my 48 month waiting period for Medicare is up July 07 - so I am currently shopping for Medicare Supplement plans. They are virtually non-existent for anyone under 65. The only one that makes any sense is Humana Advantage, but not every doctor or clinic takes it... But, I guess Medicare will be a good thing for me, until I end up in the donut hole of Part D...

It's all very confusing right now, but I am figuring it out.

[mamacze]

Dear Joy,
I have been a bit worried about you and am wondering how you have been doing on the Tykerb? (and did you heed the good advice to cut back a bit and slow down?!
Love and Hugs,
Kim from CT

[vickie h]

I received medicare and SSi benefits within 2 years after my disability with breast cancer. I receive 1000.00 a month from SSI (which I received after a 5 month waiting period) and my medicare came in the mail a year after I was diagnosed. I only have part A now because we have other good insurance, but in the future we can opt for part B and D if we ever need it. Love, Vickie

[hutchibk]

Vicki - is your other insurance through partner's employer? I also have other great insurance, individual policy - not employer, so if I choose not to take Medicare part B now, I will have to pay a higher premium in the future if I do decide to take it. (10% more for each 12 month period that I wait). If I do not sign up for a traditional medi-gap supplement in the first 6 months after being approved for Medicare, then I miss the boat on supplements forever. Other than the Humana advantage plan. I can sign up on that anytime they have open enrollment. Yikes. My head feels like it's going to explode...

[Mary Anne in TX]

You're a doll, Joy!

I'll bet after just writing all that down you've had a good laugh. Get it out!
It's too sad about your dog. Lots of lovin to that faithful pal.

Joy, I don't know how all the right things are going to come together for your good health, but I'm sending positive thoughts and beliefs your way that it is in the air and in your heart!

You're such a get over it kinda girl! I'll bet you've got all the "stuff" organized and mostly done. I do so know how it is to worry about who will take care of my kids. But I just keep telling myself that if God gave me the assignment (my granddaughter), He'll find a way! So I'm just believing in Him and whatever plan of action he has!

Much love and laughter to you Miss Wonderful!
ma

[jones7676]

I also had one heck of a fight to get this drug combo. They pulled me off Navelbine/Herceptin because they felt the scans showed that it was not totally effective. Seemed to work on the lung met, but not my bone met. While I was waiting I developed another brain met, which I recently had treated.
It took me 2 1/2 months to get the drugs and a lot of work on the part of a nurse and myself. I have perscription coverage but it only pays up to $500 per month per scrip, so they said I didn't qualify for any of the "indigent" programs. I am on my third round of Xeloda and my second of Tykerb. The Xeloda I finally got is office samples - I never did qualify for any help programs - another program picks up the balance of my Tykerb. The Tykerb Cares program criteria is terrible as far as I am concerned.

I have had very few side effects to the combo except that the Tykerb makes me kind of tired. I am thinking of switching it to at night to alleviate that. I have had a few loose stools but nothing serious.

I have also been through a whole slew of treatments which have not been as effective as I had hoped.

I also feel like giving up sometimes.....WE CAN NOT!

Hang in there! I love your energy and spirit.

[SoCalGal]

Hi Joy,

Are you feeling better? It's so easy to get discouraged. I fight feeling overwhelmed almost everyday - but I think it just goes with the territory.

So much is required of us to survive, and thrive - it's more than one can bear at times. I am divorced after 20 years of marriage - he has no contact with me or my kids so that is another hardship as well. Life is really diffficult and not the smooth road I imagined as a younger woman. But it's also filled with wonder and miracles, and opportunity and fun so there you have it!

Your message is a few days old so I am hoping that you are feeling better. The symptoms will lesson as time passes. My side effects were tough the first few weeks but easier now. I am on a special diet and supplement regime and maybe that's part of why my tummy settled down. I don't eat dairy or gluetin and am not supposed to eat sugar but I eat marshmellows and don't care.

If food gave you cancer, the whole fat world would be dead. That's what I tell myself when I eat marshmellows. Just for the record, I never ate them before starting Tykerb and xeloda.

Hope you have an easy day tomorrow. Wish I had a quote with which to end..."I eat marshmellows"~Flori