X-ray for monitoring progress - 1254630

sylyx2005
Posts:14

My husband has been on Afatinib since October last year, The first CT-scan after 6 weeks was very good- majority of the cancer nodules showed significant shrinkage. Since then, he was doing well, and the doctor has been using X-ray for monitoring the progress. Recently, he felt the pain slowly coming back, and so is the shortness of breath. But last week's X-ray result shows "no significant change". I am worried and wondering whether I should talk to doctor to do a CT-scan on him or continue using X-ray to monitor his progress in the next appointment?

How big the difference is between a CT-scan result and an X-ray result? is it good enough using X-ray for monitoring significant progress? The rational here is: if he is slowly progressing, he should stay on Afatinib. Only if he has major progress, we should stop the medicine.

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Reply # - March 11, 2013, 01:08 PM

catdander
Posts:

Hi Yan, This is a quote from Dr. West, " What perplexes me is that even putting aside US standards, which can arguably be more than needed, the global standard for the industrialized world is clearly repeat CT scans comparing the size of measurable disease. Outside of the US, scans might be done every three cycles, typically every 9 weeks instead of every 6 weeks, and that's a reasonable compromise, but it's not just me who feels that serial chest x-rays are vastly inferior. They are not the way that global trials monitor the status of a cancer. While trying to not be too US-centric, I still can't escape the concept that anything less than repeat CT scans every few months is just substandard care. Not substandard vs. US, but substandard vs. global benchmarks." from http://cancergrace.org/forums/index.php?topic=10650.0
Your husband having increasing symptoms is even more reason to check with a CT. It is reasonable to be worried that he could progress enough that further treatment would not be helpful.

Let us know what the doctors say. If they aren't willing it may be possible to see another oncologist.

Janine

Reply # - March 11, 2013, 05:50 PM

Dr West
Posts: 4735

Janine is absolutely correct. There's a very significant difference in the amount of detail available from a CT vs. a chest x-ray. I strongly favor a chest CT if you're looking for anything other than very striking changes.

Good luck.

-Dr. West

Reply # - March 11, 2013, 09:54 PM

laya d.
Posts: 714

Dr. West:

If SOB is due to other issues, such as a blood clot in the lung, would that show up on an x-ray or is there some other imaging that is necessary to rule that out?

Laya

Reply # - March 12, 2013, 10:44 AM

sylyx2005
Posts: 14

Thank you Dr. West and others for the explanation. My husband got Afatinib drug through compassionate use. The doctor's reasoning on why she tracked the progress on X-ray was: If there is any tiny progress showing in your CT-scan, you will be disqualified for continue using the Afatinib, since there is no next-step plan after Afatinib, It is better to use X-ray instead of CT-scan to monitor the progress.

I checked the compassionate drug program website, didn't find the exit condition of using the compassionate drug or the definition of "progress". I think that my doctor's "tiny progress" probably is defined different from the definition of progress widely used here.

Could someone on compassionate drug tell me what criteria that drug company uses for "progress" to stop giving drugs to the patient? Thanks.

Reply # - March 12, 2013, 02:45 PM

drsequist
Posts: 15

Hi Yan -
each compassionate use program may differ on the criteria for allowing a patient to stay on vs. mandating that they come off. However, I wouldn't necessarily let the criteria of the program be the main guide to what should be done to assess your husband's symptoms. There are definitely other treatments that could be available - this is not the last option. Realizing I cannot know the details of the situation over this sort of forum to the same degree as your husband's doctor - I would advise you that if you are concerned about the change in how he's feeling you should push to have further discussions w/ his doctor about whether a CT could be helpful in the assessment.

Reply # - March 12, 2013, 05:16 PM

laya d.
Posts: 714

For what it's worth, I wholeheartedly agree with Dr. Sequist. For one thing, what if it's something other than progression, but equally serious which can't be discovered without a proper evaluation and imaging. . .

Good Luck,
Laya

Reply # - March 12, 2013, 07:05 PM

sylyx2005
Posts: 14

Dr. Sequist and Laya, Thanks for the advice and suggestions!

I don't know the process of how the doctors here in Ontario Canada treat patients. Right after my husband started the compassionate drug ( which is his 5th line of chemo, including a clinical trial on PF299804 which I highly suspected that he was on the placebo arm), the doctor told us he has no other treatment options left except clinical trials. I feel like the health system here in Canada is like a poker game: you are only allowed to have so many cards(treatments) in your hand, you have to play the card smartly in order to stay in the game longer enough to get bonus cards( clinical trials). If you lose too early, you waste your cards, and if you didn't play the cards in smart order, you may not able to get the bonus cards.

here is my hubby's info for your reference, somehow I cannot add it to my signature:
Husband dx with IV NSLC 07/11 with bone mets. EGFR+. Radiation treatment to bone mets in 07/11, tarceva 08/11-11/11. 2nd round of radiation treatment to bone mets 12/11. started cisplatin/gemzar 12/11-02/12, started Alimta 03/12-05/12. Re-biopsy on 07/12/12, started clinical trail BR26 (PF299804) on 07/14/12. Stopped BR26 on Oct. 2012, suspecting in the placebo arm. Starting from Oct. 2nd, 2012 he started Afatinib. 11/12, 6 weeks after taking Afatinib, the CT scan showed significant shrinkage. He is still on Afatinib.

Reply # - March 12, 2013, 10:16 PM

Dr West
Posts: 4735

I believe that there may be a little more "gamesmanship" in maneuvering through the Canadian system vs. some others, but unfortunately the options do become limited beyond 3-4 lines. At that point, many people would be focusing primarily on clinical trial options.

Good luck.

-Dr. West

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