Afatinib for NSCLC Patient With Concurrent CLL - 1252965

rosake42
Posts:3

I have been on Tarceva since 12/11. Multifocal alveolar carcinoma, nodules barely visible by 5/12. No chemo before that, since oncologist worried that it would activate the Leukemia. In October, CT scan showed nodule in left lung, not in area where other nodules were. Oncologist worried that a different mutation of LC might be present. Because of its location, biopsy impossible. Wedge resection in Nov. Dx: MAI. Not currently treated for MAI. My oncologist has requested that I be admitted for the Open Access Program for Afatinib, and I have been accepted. The side effects are a source of anxiety for me, and the fact that there is some doubt as to the "irreversability" of Afinitib. What are your thoughts on Afatinib for stage I patients who have concurrent cancers?

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Reply # - January 24, 2013, 06:57 PM

catdander
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rosake42 Hello, I won't try to comment on your post except to say I'm very sorry your dealing with such a heavy burden .
A doctor will respond within a day.

I wonder though if you could explain what is meant by the "irreversibility" of afitinib. Not that I know much about what you're discussing here but I haven't heard of that and wonder what it might be.

If you have to change treatment I hope it works well for you,
Janine
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Reply # - January 24, 2013, 08:24 PM

Dr West
Posts: 4735

Afatinib's "irreversibility" just means that it binds to its target and stays there, rather than attaching and falling off of the target repeatedly, as Tarceva (erlotinib) and Iressa (gefitinib) do. This doesn't mean that the side effects are permanent.

I don't think there's any reason to suspect it would interact with CLL. There is no evidence in the world to say what should be expected, but I don't think there's a good reason to anticipate that it would accelerate CLL.

-Dr. West

Reply # - January 25, 2013, 02:07 AM

certain spring
Posts: 762

Yes, I think the term "irreversible" is confusing for patients.
rosake42, like Janine I am sorry to hear of all you are going through. Did the doctor name the mutation that you have? I agree that the side-effects sound intimidating, though some people seem to get off more lightly than others. Distilling the testimony of GRACE members, I would suggest you get yourself a good dermatologist. We also have loads of advice on dealing with side-effects if you need it. All best.

Reply # - January 26, 2013, 10:46 AM

catdander
Posts:

Well then, you are in the right place. I think there may be more patient info on this site than most anyplace else. This link is a concentrated thread of those taking afatinib (many are on afatinib plus cetuximab but not all) but the search is also a good place to look. To do a search you may need to log off first depending on your browser.

http://cancergrace.org/topic/afatinib-cetuximab-trial-user-group

I think this will be helpful,
Janine

Reply # - January 27, 2013, 10:56 AM

rosake42
Posts: 3

Certain Spring:
Thanks for your encouraging words. I am going to Pennsylvania Hospital tomorrow to get the medication. After reading the posts here, I got really scared about the "toxicity" of Afatinib. Since I am on the Expanded Access Program (tests every 28 days) I have to start on 40 mg as per the protocol, but I understand that if the side effects become bothersome, my onc can lower the dose. I asssume my old friends (diarrhea and skin rash) will make an appearance again. I stopped the Tarceva for 14 days when I had lung surgery, and my nails and skin reacted when I started Tarceva again

Reply # - January 27, 2013, 02:52 PM

Dr West
Posts: 4735

I think it's very appropriate to be wary about side effects, but you can reduce the dose as needed, as you know. I'm participating in the afatinib expanded access trial as well, and though I expect that quite a few of my patients will require a dose reduction and will find the side effects challenging, I'm still happy to offer it to patients.

Good luck.

-Dr. West

Reply # - January 27, 2013, 03:31 PM

certain spring
Posts: 762

We had a lady recently whose husband had found 40mg "manageable", whereas a higher dose (I think 50 mg?) was too much. He is doing well on afatinib, having not got on well with Tarceva.
If I find myself taking afatinib, which may well happen, I intend to make a big fuss and bother my GP until I have lots of prescriptions in my pocket and a referral to a dermatologist. I am a complete wuss about side-effects, so I sympathise with your worries. n
As for the nails - a much-loved GRACE member recommended "Working Hands" cream to help prevent skin cracks and fissures (if you have not already tried it).
Good luck at the hospital tomorrow.

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