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Anticipating Tarceva


jaminkw

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Can't believe I'm a moderator and am not sure where to put this post!

I'm still waiting for my Tarceva. All I know is someone was working on it last week. I faxed my tax form and was asked for a copy of my AARP Rx plan card. Haven't heard anything since.

In the meantime, MDA sent an appointment for my CT but not the onc. I called and asked them to do it but when it came in the mail, it was for the day BEFORE instead of the day after the CT. I left a message and the woman who called back had an accent and I could hardly understand her. After much going round, I realized the onc was not going to be in the rest of the week after my scan. The woman on the phone was trying to move everything earlier and I kept trying to explain that was a problem since I haven't even started the treatment yet. I finally cancelled the CT and said I would call when I get started. I'm in no hurry to start but am so frustrated with the process.

I've been working on collecting info to deal with the Tarceva rash. Dr Tseng has written a script for Evoclin. I'm counting on that dealing with the ugliest stuff. For body moisturizing, I got Cetaphil, a fragrance-free hypoallergenic body lotion someone recommended in a cancergrace or LCSC site. The posts are all running together in my mind now. I finally found my way back to one and printed it. So if the Cetaphil doesn't do it, I'll try Jason Hand and Body Lotion (84% Aloe). I tried finding a Ulcering Facial Moisturizer recommended somewhere but can't even locate it online. So I will probably try the Tarceva Flaming Face Skin Care Regime which sounds time-consuming but effective according to before and after pictures the woman posted of herself (article doesn't appear to be selling anything). Hydrocortisone seems to be it for itching. Haven't come across anything else but have benedryl on hand in case.

I still need a good Sunblock, any suggestions? I recalled Travel Smith carries sunblock clothing so I ordered a shirt. I have a big straw hat and one of those funny looking hats with the beak and material that covers your neck and closes in the front with velcro. I had a bunch of white gloves for a fingertip issue I had before and just threw them out. Know I can get them at Publix's pharmacy. Ned had a very bad time with the rash and he lives in Hawaii. I'm in KW and a medical document on the subject states the rash is activated by the sun so I plan on being a mummy when I go out. Looking for surgical masks too lol.

Anyone out there with Tarceva experience, did I forget anything? Whew!

Judy in KW

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Hi Judy,

You probably have guessed I dont know anything about Tarceva,other than what I have gleaned from Stephanie.Just wanting to wish you well and hope the drug has a minimal effect on the downside and maximum benefit on the up side.Its good your are doing your homework and getting well prepared for any eventualities.Sunshine a problem?why not come over and stay with me,not much of a risk of sunshine until the spring in Scotland.I hope your insurance wrangles are now sorted,in getting the provision of Tarceva,with little cost to yourself.I am thinking of writing a letter to President Obama,to get him to expedite the digit and sort out this health care inertia, well if can advocate for LC,might as well go for better health care for my American buddies,think I will also mention to him I am a bit annoyed about Becky's unemployment benefits problems also?.

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Imodium. Though experience may advise otherwise. Since I won't take it prophylactically, once I need it, it resolves the same whether or not I use it and I feel better the following days if I don't use it. I think you already know your system for this. But nice to have in case you need it.

There is a chance you won't have a bad reaction even if it is very effective. There is some data out there that the rash will come and go over the first two months, whether or not you treat it!

Once mine arrived, I took a small dose of doxycycline daily (till I stopped on my own after 4 months since I wanted to see if I needed it and I did not!) and continued to use metronidazole cream on my face at night (already Rx for rosacea.)

For my cracked heels, I use AmLactin Foot Cream Therapy,

my hands get Neutrogena Norwegian formula hand cream, and

my overall body Aveeno Intense Relief Overnight Cream.

I know some people found nail strengthener products useful, but for me, it compounded the nail problems and they are growing out better than they were.

Keep your skin, nails, and scalp well cared for and you should avoid some of the grosser things that I've experienced. Plenty of water too.

interesting link:

http://www.clinicaloncology.com/index.a ... e_id=13373

partial content:

"Mario Lacouture, MD, director of the Skin and Eye Reactions to Inhibitors of EGFR and Kinases Clinic at Northwestern University, Chicago, has been instrumental in studying skin toxicities that occur with EGFR inhibitors and the tyrosine kinase inhibitors sorafenib (Nexavar, Bayer) and sunitinib (Sutent, Pfizer). Dr. Lacouture also is a member of the NCCN Task Force.

A prophylactic regimen developed by Dr. Lacouture was recently shown to reduce the risk for skin toxicity in a major study of panitumumab. The preemptive regimen consists of a daily moisturizer, a para-aminobenzoic acid-free sunscreen rated an SPF of 15 or higher, a topical steroid cream (hydrocortisone 1%) and oral doxycycline 100 mg twice daily."

*Lacouture recently moved to MSK, NY.

I definitely found sun exposure was a risk so I was careful this summer (and on vacation.)

Here's hoping that you get all of the good and just enough of the bad to feel it is working!

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Thanks guys.

Bud, since Jason body moisurizer was recommended by gonehiking on cancergrace, I'll see if I can get the sunscreen at our health store here. Sure it's the only place that might carry it in KW.

Eric, I have called. I'm working on the premise that no news is good new but I can tell you I haven't received any Tarceva yet. I think advocating for our healthcare and Becky's unemployment are great ideas. You sure are good at it lol.

Stephanie, thanks for sharing your experiences. Now they are right here on this thread with the other stuff I've collected. It is very funny to me to think about Immodium when I've always had the opposite problem but stranger things have happened. I thought Katie told me when I met her in Orlando that at the conference she was attending someone presented data supporting the belief that if you don't get the rash, it's not working???? I hope you are right. I will take care of my skin but it all sounds like so much work--you know, life circling around cancer care. Oh well, I just have to wait and see.

Judy in KW

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Judy, I know just a little about Tarceva because Mike was on it for a short time and my mom was on a short time as well. The one thing I know is the rash can become bad enough to cause a secondary infection ,so you definitely want an antibiotic ointment like clindamycin ( sp) . Of course, that won't be a problem with you.. it wouldn't dare. The only other thing I know is that my mom needed the "magic mouthwash" because she had soreness in her throat , mouth etc. And... diarrhea.. lots of immodium on hand. I remember Mike's doctor telling him exactly what to do if that became a problem.. it seems that if you do exactly what they tell you, when it initially happens, that it nips it in the bud and is manageable after. All this sounds awful doesn't it, but ya know for most people it is very doable and I'm booking on you being one of those people. You have done so well on alimta and that is one that is intolerable for many. I have a feeling that you are going to do just fine and I'm praying you will be one of those who has miraculous response to it. I'm only allowing positive thoughts in my head, where you are concerned. Let us know when you get started.

Hugs,

Sue

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Ah yes, I believe Ned was one of those able to forego Imodium and just "enjoy" one of the benefits of Tarceva!

Let's see, there are also longer, thicker eyelashes, no more shaving my legs, and wash and fluff hair.

Jamie, wonder that she is, is the longest time user I've read. She went back to work last year. I don't recall her talking about any side effects...

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Judy, I think I remember you saying one time you had not had a chance to be on Tarceva yet, and wondering if it would work for you. I hope all the best for you. Did you say you had the test for the mutation? I never did have that done, the dr. said I had all the characteristics for the mutation and it was just as easy to try it without testing. But after being on it for about 4 months, I noticed swelling on my sub clavicle lymph nodes and so he switched me back to Alimta. However I still wish I had had the test done.

I did get the rash pretty bad on my face after a few days. For a time, the rash area around my nose was pretty raw and very painful. I had to laugh because it reminded me of the old joke "Does your face hurt...I know it's killing me..." You have to laugh about something, right? I used the steroid cream and minocycline. I wished I had gotten the prescriptions first instead of waiting. The moisturizer I ended up liking the most was Eucerin. I used that on my face and had my husband put it on my back periodically. Then I used Cetaphil after I showered. I went through a lot of moisturizer. The rash did seem to respond very quickly to the medication, and abated somewhat, but the skin dryness was a constant frustration. I think the worst of Tarceva for me was I was always cold. I couldn't even walk into the freezer section of the grocery store, it just made me shake to the core. Immodium became my friend, and I had to adjust to that problem which was a big difference from the chemo. Also I had no appetite, I had weight to spare but still it started to worry me, because in spite of feeling hungry, after eating a few bites of anything, I just couldn't finish even my favorite foods. I lost about 20 pounds in that 4 months.

I am pulling for you to be a long-term successful user of Tarceva! It is amazing what it can do.

Best wishes, Joyce

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Thanks for all the encouragement. As apprehensive as I am, you'd think I'd be calling to see when to expect the pills. Now I don't even have a CT appmt thanks to my own frustration.

I try to keep reminding myself that the worst of the side-effects can be worked thru in a couple of months. I'm just hoping it works. My option was Taxol with hair loss and immune system compromise and all the goodies that go with that.

Haven't mentioned it, but am really worried about my cruise in Feb. If I'm still struggling with naseau, a cruise wouldn't be a good idea. I'm prone to seasickness and was going to trust the patch and my anti-naseau med to see me thru. If I'm on Taxol, I'd worry about catching something being around all those people. Trying not to get ahead of myself but it's hard.

Judy in KW

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Definitely get in touch with JamieYoung. She took tarceva for +5 yrs and I think is still on it. I met her for the first time in 2004 shortly after she began it, her rash was in full force on her face and she appeared puffy...I met her again in 2007 and she looked absolutely amazing and again in 2008... Just more healthy and lovely every time I see her!

she would have some wonderful advice to share.

I'd also give Tarceva Access Solutions a phone call and have them speed up things with your insurance co. They are very very good at that.

Hugs and more hugs,

k

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Judy, once the initial rash subsided mom found Tarceva very easy to Tjardes. She was given a list of foods to avoid and had little trouble with diarrhea. Her Medicare part d covered it as a tier 4 drug meaning she paid one third till she hit the doughnut hole then full cost for one month and about $285for the rest of the year. But she got a grant and paid only a $25 copay and the grant covered the rest.

Susan

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Thanks Katie and Susan for the feedback.

Katie, I've learned at MDA to just let the patient rep do her job and let it play out. Takes longer but it's worked well. Genetech called me today and they will work directly with Patient Access. I'm being overnighted the application today and they will take care of faxing to the doctor for her part. They will follow-up with a call next week to see that everything is moving slowly. It appears MDA has some status with Genetech.

Susan, I'm glad you gave me specifics for your Mom. I'll have to calculate it out to see how much I could pay out. I won't know how much a grant or Patient Access will kick in for me until I get the application processed. Stan still works and we both collect SS so I'm a little nervous about the bottom line. I'm sure I'd qualify if they look at the 2009 tax form but the woman said something about monthly income. For us, having a business and all our medical and medical travel expenses, that can look a lot different than taxable income. Just have to wait and see. Not going to stress about this stuff. Sounds like it could be a week or two before I get started. Glad to hear it will likely be easier sailing once the rash subsides.

Judy in KW

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Judy,

I was with my father at the Dr. office earlier and had to stop before I was finished.

I think taxable income is what they use and the threshold, if I remember correctly was pretty significact to qualify for assistance. Mom and dad didn't have any trouble meeting it on their combined SSI and small pension. Having been self-employed myself I understand the difference between the amount of money that comes in and the amount that is taxable. When the money to run the business is deducted the taxable number is much, much smaller.

One other thing to keep in mind is that in the new year, I belive the cost for brand name drugs in the medicare part d doughnut hole will be reduced by 50%, so that should also help some. You will also get a $250.00 rebate for hitting the doughnut hole this year if you haven't already.

Mom got a very severe rash but also had a very significant response. They cut her dosage back to 1/2 and the rash went away and she stayed stable with the best quality of life she had since her dx for 8 months. I hope you get 8 years or more!

Susan

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I just had to recertify myself - and they asked for adjust gross income, and my program does allow up to $100,000 annually (as if!)

Susan - I would be very interested to hear what dietary recommendations were made. Other than Ned saying he avoided tomato and chocolate, and everyone stays away from grapefruit, I haven't seen anything.

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My husband had bad lesions on his scalp from Tarceva...A rag dipped in Domeboro and warm water solution really seemed to help.

Another thought though it seems minor... many pillowcases were ruined from when some of his lesions would start bleeding at night (they bled a lot of blood) so I bought white pillow cases so I could bleach them. This may not happen to you but I thought I would throw that in there... I know you travel a lot so its something to think about if you stay in hotels.

What really seemed to aggrivate his rash was sun exposure even in small amounts.

Otherwise I think you have your bases covered. I wish you much luck with Tarceva... My husband actually felt pretty good on it, much better than he felt on Alimta.

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Thanks ChristinaMarie. Haven't heard of Domeboro to see if I can get it online. Was just thinking last night about shampoo. I remember someone recommending Johnson's Baby Shampoo but there was something else too. Got to check my notes.

I have white pillow cases. That's a good idea even for face lesions--I sleep half on my stomach. Hope I'm covered. I hated the blouse from Travel Smith but was able to find great stuff on sungrubbies.com. The top is a cover-up that looks nice and roomy. More my taste than a fitted blouse. They also had cropped pants which will fit me as slacks lol. I just want to be able to sit in my screen room or go in my orchid room without worry of the sun activating the rash. Key West you get sun everywhere. I'll probably wear the cover-up driving and running in and out of stores if I go to town.

Didn't sleep until after 1 am this morning. Used Ativan and herb tea lol. Bet I sleep tonight. Am feeling more like I'm getting my ducks in a row.

Judy in KW

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Janet has also recommended Domeboro to me - and I have yet to get it. Bumble and Bumble hair tonic was doing me fine until the past 3 months. It's an "Astringent Solution". I think it is available at most drug stores. I haven't ruined any pillowcases - yet.

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