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Kellie

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Hello,

I am a 44 year old woman who was diagnosed with stage IV NSCLC with a tumor wrapped around my superior Vena Cava. I was sick for a couple months before my May 16, 2013 cancer diagnosis. My Doc thought I was having allergies and then pneumonia. I started radiation right away then had chemo of carbo platinum and olimpta (sp). I did ok for two treatments, then my body said no. I got severely sick and ended up in the hospital with dehydration, anemia and neutropenia. I tried chemo again, and the same thing happened. While I was in the hospital I got a virus in my ear which caused nerve damage. I am now deaf in my right ear and have severe vertigo. About a month ago I had surgery to get a better biopsy. While waiting for the biopsy results I tried a chemo treatment of Taxol. It also made me very sick. Just two days ago I got the biopsy results and they found that I have the EGFR Mutation. I will be starting Tarceva on Monday.

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Welcome Kellie. I'm so sorry you had reason to find us, and it sounds as though you have really had a rough time with the chemo - but congratulations on having the EGFR mutation! I have not taken Tarceva, but many have and with good success and very tolerable side effects.

Please keep us posted on your progress.

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Thank you for the welcome. I am really hopeful that the Tarceva will keep my cancer in check. I'd exhausted pretty much all the other options and was really getting scared and losing hope.

A little more about me....

I live in Oregon, just south of Eugene with my husband and a collection of animals. I have a Tennessee Walking horse that I trail ride, two miniature horses that I drive, two dogs and two goats that I love hiking with, two inside cats, two outside cats and 4 rabbits that live in the barn with the horses.

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welcome aboard sad to say but glad to say... My wife had great success with Tarceva fora long time and it was a godsend when she was on it ... No hospitals or anything....Just had to get over the initial sticker shock of a 200 dollar prescription first time she used it then the insurance picked it up but that was also years ago so..... :wink:

Sounds like your doing all the right things and staying active and living life on your terms and that is great.... sorry bout setbacks but glad your beating them also...

Many of our member have had success with Tarceva also....

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I love love love your pic.

I hope Tarceva works wonderfully for you with minimal side effects.

Keep posting. I'm looking forward to getting to know you!

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Hi Kellie and welcome. Sorry for your need to find this place but there are plenty of people here who know what you are going thru. Don't hesitate to ask any questions you may have. If no one here has your answer we will try to find someone who does. You must be a animal lover, I love the picture you posted. A few years back I went to a address to buy some white homing pigeons. The man who lived there also had goats and miniature horses. Cute little things. I'm glad you are a candidate for Tarceva.

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Today is day 8 on Tarceva. Two days ago I broke out with the rash and today I am battling dry mouth. The rash was only in a couple of spots to begin with, but now it is pretty much everywhere from the waist up. I even have itchy bumps on my eyelids and lips. It is quite annoying, but no where near as miserable as chemo was.

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great shot BTW...... rash is good thing and if you try Nivea with white cap I think it was might help rash relief some.... biotene for dry mouth i think was one of the mouthwashes...

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I have heard, as Randy said, that it is good to have the rash. Love the picture - thanks for posting! Please keep us posted on how you are doing with the Tarceva. Hopefully it will keep you feeling well enough that there will be lots of days riding on the beach.

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Two weeks on Tarceva. Other than the rash I don't seem to have any side effects. I am battling really dry skin in the rash areas on my face. I rinse my face and put lotion on it several times per day, but I still have hard, dry, scaly skin from my forehead down my nose to my chin.

I did have a great day on the trail yesterday driving my pony :D

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You are looking great Kellie! I keep checking back here to see if you have posted any new photos. I think the one of you on the beach is my favorite so far. You just look so free and happy. Thanks for keeping us updated!

As far as the rash, could you use coconut oil? It might sooth the dryness. I look forward to your next update.

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Hi Kellie! I too just love your pictures! I'm also happy that the Tarceva is working well for you other then the nasty rash that comes along with it! Keep us posted please!

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Hi all,

I'm still doing pretty good. I am slowly getting my strength back after chemo nearly killed me. I'm still anemic, which explains why I am tired and need naps. I won't know exactly how well the Tarveva is working until I have my next scan, which is mid March. The rash has gotten worse, it has spread to my hands and they are now peeling and painful. I have a 1/2 dozen lotions and ointments that don't do much to help. Any ideas what might help with the dry skin and itchies?

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Thanks for the update Kellie. Not having been on Tarceva, I don't know what might be the best product for the rash - but hopefully someone will be along shortly who knows more than I. I'm surprised they aren't able to give you a prescription to help with it. You might check at cancergrace.org for ideas others have found helpful. It took me almost 6 months to gradually get my strength back after chemo, and even at 6 months I wasn't 100% - but could at least function more normally without so many naps. It was a slow but steady process. I hope you are able to find some relief from the rash soon.

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So far the best thing I have found for my splitting hands is Neosporin with pain relief. Taking a bath with added baking soda helps the itch and adding oil to the bath helps with dryness.

The problem I am having no is my insurance is refusing to pay for the genetic testing. So I have to come up with thousands of dollars. :cry:

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Hi Kellie,

I am also Stage IV with the EFGR mutation. I started Tarceva about 4 months ago. I did get the rash on my face, shoulders and back but not as severely as yours. And the very, very dry skin. Here are the products that have worked really well for me. First, I apply a prescription cream from my oncologist - Aslometasone Dipropionate Cream USP , 0.05%. I spread it over patches or dot it on with a Q-tip where the spots are not close. This keeps the rash under control. Then I use a thin layer of Derma-E Pzorzema Creme which I use because the dryness was making me itch, regardless of how much cream I put on. Then I slather on a cream called Dry Skin Relief by Collective Wellbeing or Acure Calming Body Lotion. This may be enough for you. Since I'm in Chicago with the worst winter in decades, I then add a oil that seals everything - Goe Oil by Jao. The oil sinks in pretty well, but I do live in cotton leggings and undershirts under my clothing. The rash is an annoyance at this point, no more. Hope it stays that way.These products are available on-line or at Whole Foods-type of stores. I hope at least one of these helps. Oh, I forgot one thing that you probably already know -my oncologist did prescribe an antibiotic, Minocycline which I used for just a few weeks when the rash started to worsen. It did help and I stopped when the rash seemed to stabilize.

Peaceful thoughts,

Marlene

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HI Kellie,

I'm glad that you seem to be responding well. The rash is something that many people struggle with-

I've heard people say they used cetaphil for washing and then vasiline, cortisone creams and ointments, steroid creams and steroid medications. Here is a great read for rash http://media.cancercare.org/publication ... 1302555775

Also, for your issues on gene testing and perhaps targeted treatment financial assistance, Genentech is the drug manufacturer of tarceva. They have an incredible patient assistance program that you can check into here. They would definitely know about things like testing and rx help. http://www.genentech-access.com/patients

Please keep posting us your updates and your great pics! I love seeing them and hearing from you.

Hope your rash is under control soon.

Hugs,

KatieB

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Hi Kellie,

Love the pictures you are posting! You look like you are feeling great!!!!! I am happy the Tarceva is going well. Rash is a problem for so many-I hope some of Katie's suggestions get it under control.

Cindy

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Hi Kellie - thanks for the update. Sounds like you're getting lots of helpful advice regarding the rash, and I hope your energy is slowing coming back. When I was last dx genetic testing was new, but I'm very surprised at this point the insurance companies are not covering it. Shame on them! I hope you area able to get some assistance in either appealing this or help with the cost.

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Yesterday I met with my oncologist and we went over my scan that was taken last week with me being on Tarceva less than two months and compared it to my pre-Tarceva scan back in December. My cancer has been reduced by about 85%!!!!!!!!!!!

I still have the itchies, dry skin and a minor rash, but I'm leaning to manage it with lotions, potions and creams. I'll take these side effects over nausea, vomiting, dehydration, anemia, neutropenia and hospitalization any day :D

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