EGFR+ taking Iressa

Hi. I was diagnosed August 2015 with stage iv, adenocarcinoma, egfr+, exon 19 deletion, with mets to both lungs and spine. I started with radiation to my largest lung tumor and Tarceva in September 2015. I later had a one time high dose radiation treatment to my spine. My April 2016 scan showed No Evidence of Disease. Because of uncommon side effects of Tarceva, we kept lowering my dose until we ran out of lower dose options. I switched my targeted therapy to 250mg Iressa in June 2016. My July scan showed NED too!

I was having severe muscle and joint pain. My oncologist cut my Iressa dose in half. I cut my pills with a pill splitter and take 1/2 daily. That has seemed to help with some of the pain.

I live in the U.S. and can't find anyone here taking Iressa. I'm looking for others taking Iressa and advice on side effects and dealing with the pain.

Thank you--Lisa

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  • Good morning Lisa I too, have the exact same egfr lung cancer stage 4. I was recently prescribed Afatanib, 40 mg. which I understand is a very close match to Iressa, after Tarceva failed. I took it one day... pain was so excruciating I stopped it. I have returned to the Dr. yet, to discuss, happens in a week but I'll be glad to share and help you any way I can. Please just make sure you are taking the omega-3 high potency to help you with the pain. I had the same pain in Tarceva.

  • Hi, my Dad has EGFR adenocarcinoma Stage 4, diagnosed Aug 2016, and started on Iressa 7 days ago. This is his first-line treatment. He recently started having side-effects like diarrhea (managed with prescribed loperamide and lots of fluids) and the doctor warned of skin rashes (managed with lots of E45 emollient cream and staying out of the sun) as another side-effect. The doctors never mentioned pain as a possible side-effect, and so far, none reported by my Dad (knock on wood).

    The oncologist told us that Iressa is not as aggressive in fighting the cancer as Afatinib (which is a second-gen drug compared to Gefitinib/Iressa which is older) but also that the side-effects of Iressa were therefore less than Afatinib.

    My Dad was also told to drink lots of fluids so that the medication would not adversely affect the kidneys. We were also told not to take grapefruit, which interferes with how Gefitinib/Iressa is absorbed into the body.

    PLHLisa So many best wishes on your NED! That's so amazing! I can only hope the same for my Dad.

  • I forgot to mention indeed those things, indeed my mom was told to use a factor 50 in the sun and use a hat to protect her skin. Also NO grapefruit and to drink lots of fluids!! In the morning she was told to take the Iressa together with some coca cola, as it seems to absorb the medication better, is anyone doing that as well??

  • Welcome to the Roy castle community.I am sorry you are in so much discomfort.The following website gives you some information about side effects of Iressa

    cancerresearchuk.org/about-...

    If you are experiencing pain you should speak to your family physician.It is important in order for him to assess your pain correctly that you tell him/her

    •The location of the pain(eg. back, leg)

    •The severity of the pain(e.g on a scale of 1-10)

    •Description of the pain(burning, shooting, stabbing etc)

    •How long have you have had the pain

    •What makes it worse/better

    •Does it affect your sleep?

    •What current medication you are taking for the pain

    •If your pain medication is effective

    I do hope that this is of some help.

    Kind regards,

    All the Roy Castle Helpline team

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