No forum for this!

[jaminkw]

This site is where we come to say things we can't (or don't want to) say to our loved ones. Well, here goes.

I am terrified of Tarceva, have always been. I'm scared of being ugly and not wanting to be seen in public. I'm scared of losing this extra 20 lbs in a few months because of naseau, vomiting and diarrhea. I have been feeling so good.

I ordered my first month today and made an expensive Freudian slip. Probably won't tell Stan. I handle the finances and do it well but whenever my treatment gets into a discussion of cost, we get in a fight. I think it's because I feel guilty about the expense. I wanted to order my Tarceva from MDA not the mail-order Prescription Soutions. When I calculated the difference, it was going to be just under $200 so I ordered it. When I checked my figures later, it was more like over $600 more! I was stunned but am really not sorry. I just feel safer, quality control and all, getting my first dose from the hospital.

Those who know me know my thing about "saying it outloud." I did. Thank you if you listened.

Judy in KW

[ts]

Judy,

I said it before - we prefer the baggage we already carry. I'm totally freaked by the idea of every going off Tarceva and onto any chemo again, including Alimta.

I have never thrown up on Tarceva, except when I was passing a kidney stone! I don't have nausea either. I lost about 10 pounds when I started, but my weight has been stable since. That means I am still carrying a reserve. Not only do I go out in public, I went on TV! Michael has taken more photos of me in the last two years than exist in my entire life. They aren't any worse than all the others. I've never liked my photos. I am much cuter (and smarter) from the inside.

I have to laugh at your comment about drug safety. The couple of months I got Tarceva from the hospital pharmacy, they transfered the pills from bottle to vial. Mail order comes in the original sealed bottle, with the Rx on the side of the box.

Financial concerns are no laughing matter. Don't keep these to yourself. If not Stan, can you talk to the hospital social worker or a cancer navigator? Even to just double check your decisions?

Wishing I was nearby to hold your hand. You will do great. And if the side effects are too much, dosage reduction is an option. So is stopping. Remember, this is about quality as well as quantity of life.

[RandyW]

Ebs experience was not so bad Judy. she used nivea with the white top and some make up without looking clownish by any means to hide visible rash and did pretty well with that as well her side effects were not too bed either as I recall. She took it and still went to class most days ok she did miss a few but not that many while she was talking tarceva and art classes! I can also relate about the cost and remember that the Manufacturer also does offer a financial assistance program if need be!! I remember starting that one specifically because of her worry as it was still a new drug!! Hugs and prayers and I KNOW your going to rock this one!! (((((((Judy)))))))!!

[jaminkw]

Stephanie, have you been on Tarceva that long! I thought you had a terrible time in the beginning but it's definitely worth it for a long run. Thanks for the pep talk. I need it. This first month won't kill us and hopefully the grant will come thru. I'll be fine switching to PS after this. I think I really didn't want to deal with the phone issues I've had lately with MDA and I would have had to get a new script for PS. Can't switch scripts from pharmacy to pharmacy or at least that's what PS said.

Thanks for your encouragement too Randy. Genetech did put me on to Patient Access and should get help there. Just takes time for it all to go thru the process.

Hanging in there.

Judy in KW

[Joppette]

Judy, I'm glad you can voice your concerns. They are valid and yours to proclaim!!! I'd be terrified too. Sounds like you got some good advice from some folks with Tarceva experience.

Hang in there, you are going to rock this!

MI Judy

[ts]

Judy,

On Tarceva for one year, dx two years ago. The photos of me waiting for surgery, in the hospital, doing chemo, and doing radiation...those are not fun. Really, it is hard to get sympathy - most of my side effects are not readily apparent "You look so good!"

I've always been a wash and run type. This has made me slow down and take better care of myself. Our skin is not only what holds us all together, but how we meet the world. It isn't surprising that it can take plenty of coddling. I need to practice better pampering. What woman wouldn't want a legitimate excuse for that!

[jaminkw]

Thanks Katie, the people at Genetech have been great. They sent me the application with all the info on me they had already typed in. They also faxed the doctors page to her. They fed ex'd the app overnight with a paid overnight return. They said they will follow up next week to see how the process is going. I'm impressed. You could say they can afford to be nice at the prices of the drugs. But plenty of people are stiffing us every day and not even being nice.

Encouragement appreciated Judy. Yes, I think that is one of the great benefits of this site. You will usually find someone who has walked in your shoes. But not yours, I'm afraid. Hope the new meds for the spasms do the trick.

Stephanie, I'm good about taking care of my face if washing and applying moisurizer is "good." But body lotion!!!! Doesn't happen unless I'm putting on my fake tanning lotion. And sunscreen, don't sit in the sun so don't use it. But I think I'd better everytime I go out since the sun triggers the rash. Sigh.

Judy in KW

[Annette]

And so the journey begins, all this preparation and that means that you are knowledgeable about what to expect - ready to face what comes - and know that you have many folks here ready to listen if that is what you need. I know I enjoy every one of your posts happy morning airs and frustrated vents - who cares - someone telling it like it is so that those of us that can offer a shoulder or a kind word do. Because that is what you did for us. In all a system of support like a sport team carrying the leader - well it's our turn to offer you support. My shoulder is in place, my ear is ready and if I can offer you anything while you whoop up on this and rock it - here I am.

Annette

[jaminkw]

Thanks Annette. I'm looking at the list of things still to get and laughing at myself. Don't think anyone has prepared so furiously for a treatment. List include facial wash, face cloths, white gloves, sunscreen for body and lips, facial moisturizer. shampoo etc etc. Funny honey. Better check my account balance before I buy it all with my debit card lol.

Judy in KW

[Nick C]

Judy, I don't know anything about Tarceva, but I totally understand about the "being seen in public" thing...mom never took out the garbage without lipstick and mascara...

You are awesome...and everyone sees that first and foremost.

[eric byrne]

Morning Judy,

Its 6.30am here just getting ready to go to work.Just a wee rejoinder to wish you well for the arrival of your Tarceva,I can well understand your apprehensions,skin rashes suffered by some are no joke.May your experience have little effect on you and you can derive all the drugs benefits.I am still bamboozled about your health care system where ability to pay is a factor to consider if you are an American citizen.I pray for the day arriving,where this obsolete and totally indefensible system is kicked into touch for good.Everyone should have the right to full access to medical care,regardless of ability to pay.

I know if this were done,years later Americans would look back in shame at the present system in how it discriminated against the less well off.You only have to think about pre-sixties and racial attitudes them to realise how archiac they seem now when you look back.Sorry,me and my big mouth always letting it run away with me,please forgive me butting my nose in?.Have a good day Judy.