Questions about Xalkori treatment - 1251373

Outcomes with these treatments can be quite variable. It's great to hear of dramatic improvements within a few days, but these cases are still the exception and not the rule. Some patients develop a dramatic benefit that can take weeks or months, and many others won't have a staggering resolution of their symptoms, but rather a more subtle improvement accompanied by a modest radiographic response. I think the most important issue is the duration of the time before progression, so I'm very pleased if someone goes 6 or 12 or more months with a minor response or even just stable disease. A dramatic resolution of all visible or symptomatic disease is great when it happens, but it isn't the only kind of success that the beneficiaries of these treatments can enjoy.

Good luck.

-Dr. West

aunttootsie,

Please don't worry about the 'Grace way' too much. The main idea behind not asking a lot of questions at one time is we don't want to overwhelm our doctors with too much at one time. While all of our doctors really want to contribute to the Grace forum it's very difficult for them to find time. For example about 50% of the requests I put out to doctors actually get answered. We're all very lucky to have Dr. West and his drive to make this work.

About whether or not to start a new thread; I'll leave that up to you but the idea behind keeping subjects on separate threads is so that others looking for info on the same subject can find it easily. Laya has always done the best at keeping us up to date on her mom while keeping specific questions on separate threads. I just want you to understand the method behind the madness. As if life isn't complicated enough...

Janine

Exactly. We aren't trying to trip people up or make things difficult. It's just overwhelming to try to help but be inundated with a list of 8 broad questions that would take >30 minutes to answer (and you didn't do that). I think it's very helpful to have many other physicians contribute as they can, but it's much more feasible to request assistance with 1-2 limited, defined questions at a time than a barrage of questions about everything that a person has ever wondered about with regard to their cancer, all at once.

You don't necessarily need to start a new thread for every question. I think one advantage of opening new threads is that the people who answer questions on an established thread may receive e-mail reminders when any new comment is added, and we don't want them to feel obligated to address everything that follows in a thread that continues for weeks or months, with new questions emerging over time.

-Dr. West

It doesn't matter where they get blood from.

Thanks for the kind feedback.

-Dr. West

Hi Aunt Tootsie. I'm sorry you're going through these difficulties with co-payments. I hope you get it worked out. The rattle you hear when you breathe out might be mucous that is collecting in your airways. Does it go away when you cough? What does your doctor say about this?

Do you know what the problem was with your labs? You have been on Xalkori for 2 weeks, right? I hope all you need is a dosage change. Please let us know.

I've had some nausea (not too bad), constipation, and I have a couple of sores on my lips that look a little bit like cold sores, but they don't tingle or hurt. Also a couple of white spots inside my mouth. I'm thinking it's probably thrush. I'm rinsing with warm salt water and using a lip balm.

Sorry you're having these problems,
Debra

Well, don't despair. A good bartender can make very good non-alcoholic cocktails that are almost as much fun as the real thing. And I am celebrating this year for all of the GRACERS who are ringing in yet another year. And cheers to the doctors who work so hard to keep us around! Happy New Year Tootsie. Have a great time.
Debra

I have a patient who requires occasional breaks from it due to a periodically low white blood cell count, but she's been on it most of the time for the past nearly two years and is still doing well. It's not rare for patients to need a break from it here and there, and/or dose reductions, to do better. A rare patient will have such significant problems with elevated liver enzymes that it interferes with the ability to safely continue the drug. Fortunately, it's more common to do OK with some tweaking like a dose reduction.

Good luck.

-Dr. West

I can't search at present but the milk thistle question has definitely come up before - a lady from Turkey asked on behalf of her husband, an airline pilot who was taking xalkori. Dr Walko replied and recommended against taking it, based on some work one of her phd students was doing. if you search for crizotinib and milk thistle, it will come up. All best.

Lorrie :) , Dr. West will likely be out of pocket the next couple of days. Below is a quote from Dr. Walko. I don't think it really answers your question about taking the milk thistle during your break.

Dr. Walko writes about milk thistle, "The short answer is that is does block the pathway through which Xalkori leaves the body, so taking the two together could result in higher amounts of the Xalkori and more toxicity from it. So, I would not recommend it."
http://cancergrace.org/lung/topic/adenocarcinoma-stage4-eml4-alk-xalkor…
Another thread on the subject, http://cancergrace.org/lung/topic/taking-a-liver-cleanse-while-taking-t…

Have a good B and B time and a happier New Year for you,
Janine

Dose reduction of XALKORI would almost always be down to 200 mg twice daily, rather than 250 mg once per day. And I completely defer to Dr. Walko's expertise on milk thistle.

-Dr. West
(checking in from out of town)