Long term Tarceva side effects

[Shar]

Hi Everyone,

I'm not getting a lot of answers from my Onc at the moment, there is no better place to ask questions than here.

I have been on Tarceva for over 2 years now, I was the first patient to receive it in the state where I live. The doctors here look at me for answers and there is nobody I can question when something that could be a new side effect happens to me. For the past month I have been getting lumps on the bottom of my leg and foot. They feel like a major bruise and are around the size of a pea. I have one on my ankle and it is getting harder to walk because of it. I had an ultrasound when there was only one lump and they said it was swelling. Weird. Since then 6 more have grown and the first 2 have doubled in size.

Just wondering if anybody out there has experienced anything similar. I told my Onc that more have grown and he said to just wait and see if any more appear. They are putting it down to being a side effect of the Tarceva, but sometimes I feel it's just an explanation when things are too hard to figure out.

Thanks,

Sharon

[ernrol]

Sharon,

You are one of a group of us that have been on Tarceva for a while. There are a few here at around two years. I have been on Tarceva for 22 months and I think Jamie has been on Tarceva for over 2 years. They have mentioned to me about stopping it after two years. As far as I can tell they don’t know much about long term side effects. Keep us posted on how things work out. Have they mentioned any treatment for them or told you what they think they are?

Stay positive,

Ernie

[Wendy]

Hi Sharon,

I have been on Tarceva for 17 months now. I haven't experienced anything like you are describing.

I had pains in an ankle for about 3 months and then it magically went away. Tarceva side effect? - we never could find an explanation. The pain started about on 11th month of tarceva.

I still get roaming numbness and tingling of my hands/feet every few days. I am not sure if it is from Tarceva or prior treatments.

Has your doc stated a timeframe for your to be on Tarceva? Mine hasn't yet, but I am getting close to the 2 year marker Ernie mentions.

I hope they find a solution for you - keep us posted.

Wendy

[Shar]

Thanks Wendy and Ernie for responding.

I am off to see the Oncologist tomorrow afternoon. The pain in my ankle is getting worse and the lumps are just not going away. Not sure what the plan is, but I'm guessing a bone scan or a biopsy.

Will let you know how it goes.

Sharon

[TracyD]

Hi Sharon,

I can't help with you any of your questions, but I wanted to let you know that I'm thinking of you and praying for a quick and easy solution to your problem.

Tracy

[trish2418]

I had unexplained swollen ankles about 6 months into Tarceva treatment, but no lumps. Please do let us know if the docs figure out what's causing the lumps. Good luck.

Trish

[pammie]

puzzling for sure. You are in our prayers and don't forget the HOPE we get from you. God's blessings. pammie

[Shar]

Hi Guys,

Just a quick note to let you know that my ultrasound revealed nothing sinister, just fluid apparently. They can't give me an answer as to why it is happening, they discovered another lump during the ultrasound, but I am just happy it is nothing nasty.

So, I will put up with the pain and hopefully in time they go away.

Sharon

[Jyoung20]

Hey Shar,

I'm glad to hear that it's just fluid. I sure hope it's goes away soon, I bet that's pretty painful.

God Bless!!

Jamie