ALK or ROS1 NSCLC Patient Group - 1244753

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certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

Not to interrupt the conversation, but just wanted to cross-link to a comment from Dr Aggarwal on another thread:
http://cancergrace.org/topic/anaplastic-lymphoma-kinase-and-lung-cancer
She mentions a "new and improved" post-crizotinib drug called LDK-378, now in clinical trials. This is probably old hat to the ALK experts, but I thought I would mention it. Best to all.

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Ladies! It really helps to be able to come here and Vent and know you all understand what we are going thru! I've kind of slacked off on my walking lately and need to get back to it, it helps calm me Down. Tredmill not as much as walking outside at the lake but it helps some. Thanks again and hope your all doing well!

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

Yes, there are three promising ALK drugs. Novartis LDK378, Ariad AP26113, and I think also Chugai CH5424802, and are all looking very good in early results, more potent than Xalkori. Each drug is a little different, so they each treat different variants of ALK or sometimes collateral mutations (in the same way that Xalkori inhibits both ALK and ROS1 and even c-MET). LDK378 is the first successful one and I know someone who has been on it for about a year, although she is having progression and will have to try something else.

These are still ALK (and ROS1) inhibitors, though, so they would be effective on variants of ALK (and ROS1) and probably not useful on other forms of resistance. My guess is that even if only 30% or 50% of resistance were due to ALK (or ROS1) variants that one of these new drugs could inhibit, some of the time the new drug will be so potent that even if resistance from a non-ALK (non-ROS1) mutation is growing they might shrink the front-running ALK-driven (ROS1-driven) cancer so much that it does shrink the measurable cancer anyway and does help survival time until the non-ALK (non-ROS1) mutation becomes the dominant problem. Something like that might explain why *very* early results seems to suggest maybe 75%+ response rates to these drugs. For our long-term survival, then, it is important for research to progress on identifying other mechanism of resistance that can be treated.

Both the Alice Shaw team at MGH in Boston and the Ross Camidge team at U. of Colorado in Denver are researching mechanisms of resistance. (The lab researchers behind these two ALK+ROS1 expert oncologists are the important unsung superstars of this work.) You can find summaries of that research here:
http://www.inspire.com/CraiginPA/journal/new-research-in-resistance-to-x...
and here
http://cancergrace.org/lung/2012/01/13/mechanisms-of-criz-resistance/

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Are they done doing trials on the XALKORI? Just curious! These trials your talking about are they the kind that you don't know if your on the Drug or placebo? Originally I was suppose to be on a trial right after my surgery. They were taking so long getting it organized, maybe they were having trouble getting enough people at that time. Anyway both my ONC and I were getting impatient so we decided to forego it and we went with Carbo/Taxol. The trial was Cisplatin and not sure what else. Doesn't matter because I probably wouldn't have been on it very long my White count went way down and took 11 weeks to climb back up. Does XALKORI have that reaction on people? Thanks for the info.

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

AuntTootsie,

I assume people who were in the original Xalkori trials are probably able to continue on them, but I don't really know. I do know that some variations were recently added to the original phase 1 Xalkori for ALK trial. For example, ROS1-driven cancer (like mine) was added, and c-MET. Also, they added simultaneous testing of certain drugs that some patients may need during treatment to deal with an infection but which are risky such has ketoconazole (antifungal) and a TB drug. So even though it's the phase 1 trial of Xalkori, they're still collecting new data from it.

I don't know about phase 2 or 3 Xalkori trials, but I assume they should still be ongoing, too, at least for patients who were enrolled in them. You can check at http://clinicaltrials.gov , for example:
http://www.clinicaltrials.gov/ct2/results?term=&recr=Open&intr=crizotinib
lists many still-open variations using Xalkori (crizotinib).

It is only phase 3 trials where a patient would get randomized to a standard treatment or Xalkori. I don't think anyone wouldn't know what drug they're getting since the side effects and delivery methods are so different. Usually for successful drugs patients in the "control" group are allowed to try the experimental drug once they've shown progression on the standard treatment. At this point, though, Xalkori for ALK is already FDA approved, so those ALK participants wouldn't need to be offered Xalkori subsequently since they could get it by simple (but expensive) Rx.

I think I remember some people can have reduced white blood cell counts on Xalkori, but I wasn't affected at all. I wouldn't expect Xalkori to cause that as often as chemo does. When side effects are problems, oncologists can try a "drug holiday" to allow healing to occur and can try to lower the dosage. If you want to see a list of potential side effects, see:
http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdr...

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Craig! Your. Wealth of info!

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

Some patients do have a drop in their blood counts with XALKORI, but it's far less common than we see with chemotherapy. I've had a patient who has required many brief breaks from the XALKORI to allow her white blood cell count to recover, which it always does within days of stopping the XALKORI, and then she's on it for weeks or months before we need to hold it briefly again.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Once I finally get started on it it is comforting to know that breaks can happen to give some issues a chance to settle. Thank You Dr. West! Figure I'll get the paper work on Thursday and then I'll try to Fax it back on Friday if possible. Taking this delay in starting one Day at a time!

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Frustration is setting in while I wait to start the XALKORI! The Copay assistance group that contacted the Center never mailed the forms to me. We kept thinking they would come the next Day. The center said if they didn't come by Monday which they didn't we could take care of it when I saw the Dr. On Monday. Faxed in the info and now waiting to get the official approval. I'm thinking with the Holiday I may not even get the meds by this next Monday? What is frustrating me is the Pleural Effusion isn't causing shortness of breath or difficulty breathing mostly just when I lay down on my left side or flat on my back. I wheez alot and my lung makes a lot of weird noises! For some reason tonight it is preventing me from going to sleep. Is there anything I can take to help with the wheezing? I'll probably have to have the fluid drained once more before I even get started on the meds. It is driving me crazy!

certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

Sorry to hear about these frustrating delays.
The "noises at night" scenario is all too familiar. I had to train myself not to sleep on my left side, which is where the tumour is and hence the blockage. I was waking myself and my husband up (and alas continue to do so sometimes). My best tip is *not* to sleep flat. It helps to have a lot of pillows, although they tend to slip. My physiotherapist recommended putting the pillows under the mattress, so it is slightly raised at the head end, or putting a wedge of foam rubber underneath. It really helps to have your torso slightly elevated at night.
Otherwise, there are various "postural drainage" positions, of which the simplest involves lying on your bad side with a pillow or cushions under your hip. Not recommended before bed or after meals! |Or exercise helps, eg brisk walking - anything that gets the air circulating in your lungs. Very best.

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

It will take a lot of training for me to sleep upright! Trying to find some thing to help me sleep the whole night? I don't have trouble falling a sleep ,just sleeping thru the whole night! Still stressed about getting the Meds started. Do you have the pleural effusion? I had it drained once and I thought it would help with the wheezing but it really didn't help that, that much. I'm anxious to get on the XALKORI in hopes it will help. I've noticed some discomfort in my left back area from my shoulder on down. Uncomfortable to lay on that side. I read that is also a sign of the Lung Cancer. I feel worse since having it drained and will tell my Dr's about it when I go in next time. I think instead of waiting for them to call me to set up delivery, I am calling Curascript in the morning! At least I will feel less stress! I'm cooking my Turkey in the morning, mostly to have the leftovers for my husband and kids when the stop by. Thank you for the info. Will try suggestions out. Hope you had an enjoyable Thanksgiving! My friends call me Lori!

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Yay, finally have my Xalkori is on it's way! I was on the Ispire site and someone asked if she could take something for a banging headache? Good to know before I start my meds. I assume my Percoset is okay because no one said I couldn't. But what about Tylenol, Advil or aspirn?
Also I ak your forgiveness ahead of time as I will probably have a million questions until things settle down! The stress finally got to me today and I lost it! Was cooking a Turkey Dinner and a few things went very wrong and I blew a gasket! All is well now! But hate when I do that!

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Good Luck Lori! I'm so happy you got everything worked out. I will be starting Xalkori soon too, so I will be following your questions/answers with great interest.

Don't worry too much about "blowing a gasket." I think we all have had situations where the stress of everything just comes out at the strangest times. I've had arguments with clothes hangers in my closet that I would have been embarrassed if anyone other than my cat had seen. He just hides under the bed. Something really simple can set me off into a crying jag that lasts hours. So I just roll with it and let myself cry, then I get over it.

I hope your turkey and fixin's survived and that dinner ended up being a good one. Again, great to hear that you got it worked out, and got through all of the "hoops."
Debra

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

Although I was told to avoid NSAIDs other than aspirin when I started the Xalkori-for-ROS1 trial, I don't see any such contraindication in the prescribing info here:
http://labeling.pfizer.com/showlabeling.aspx?id=676
Best to check with your oncologist, though.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Craig! I finally got Copay thing straightened out meds to come on Tuesday. If you take them late in the day do they keep you awake? I'll be starting with the full dose 250 x 2 a day. Thanks for the info.

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Debra, meal was fine was able to salvage some of the dressing. Green Beans were okay. So tomorrow before the kids stop over I'll have time to make it right. I have plenty of Desert too!
Guess we will be talking a lot on here! Why do you have to wait o start? Letting other meds out of your system? At any rate Best of luck to you!

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

aunttootsie,

I don't think Xalkori would keep you awake and some people get a little fatigue from it, depending maybe on the standard dose vs. their body size or something. However, I was told to stay upright for 1 hour after taking the pills to reduce the risk of the drug slipping back up the esophagus where it can irritate that. (I cheat and often watch TV afterwards on pillows that put me on a 45 degree angle without causing much irritation, so I guess upright doesn't have to mean absolutely vertical.)

Try to not let the pills get stuck in your throat - let them get washed down well and quickly. If they start to dissolve in your mouth or throat they can even create sores that can take weeks to heal. Never happened to me, but I was warned that can happen.

I target taking my pills at 8am-9am and 8pm-9pm, but because I'm not a "morning person" that usually slips to an hour later. I think the main reason for the 2x/day dosing instead of 1x/day is side effect management, so if you slip by a couple of hours it's no big deal. To avoid missing doses I set my iPhone with an alarm every 12 hours. I "snooze" it repeatedly until I have both (a) taken my dose and (b) written the time down in my log, so I don't run the risk of missing or forgetting I've taken my dose. Another precaution against not remembering is that I set up my AM and PM colored pill containers in the AM, so I can clearly see if I've forgotten to write down the time when I took my pills if that shift's pills are already gone (or if I haven't started because there's no pills in either).

Remember: Nausea etc. is a common side-effect if consumed without food, so I recommend a little food right before the pills. (It doesn't take much.) In my case I because lactose intolerant, too, although less so if I consumed a little dairy often enough so my gut wouldn't forget; that might just have been unique to me, though.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Aunt Tootsie, I'm so happy to hear the meal survived your temporary melt down. The stress of cooking a Thanksgiving meal alone is enough to stress anybody out!

I'm having to wait to start Xalkori until I've had a laser procedure for narrow angle glaucoma done on both eyes. I had the first eye done this week with no problems, and the second eye is scheduled for Dec. 19th. Xalkori can affect the eyes, so my onc. wouldn't start me on the drug until this was done. Just being cautious. I would recommend and eye exam prior to starting Xalkori for everyone even if they don't have eye problems, simply to establish a baseline. I had a hearing exam prior to starting Cisplatin also, since that drug can affect hearing, but I did not suffer any hearing loss on that drug. I guess Xalkori can blur your vision.

Craig, what kind of log do you use to keep track of your meds? Is it something you created yourself, of did you get it from somewhere? I could really use a tool like that. Also, how did you get your signature text so small?

Thanks for the tips about eating prior to taking Xalkori. It's great to have a veteran on board as we venture into the unknown!

Debra

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

Re: record of taking meds: Any sheet of paper could do better, but I was given a form to fill out because I'm in the Xalkori-for-ROS1 trial (actually a ROS1 cohort of the old Stage 1 Xalkori-for-ALK trial). Just need a place for the date and for an AM time and a PM time.

Re: small print in signature: I used the below format, but since I probably can't type it without it being rendered into formatted material I used a substitute character here and you'll have to replace each { and } with a [ and ] :

{size=10}text goes here{/size}

Example: [size=10]text goes here[/size]

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Got it. Thanks Craig.

Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Debra, do you worry about your Cancer growing wild while your waiting to start treatment? These past few 2 or three weeks has been very stressful!. I'm edge and very moody. I can tell the fluid is ecumilating more and more Dailey! And the thought that it is pulsating thru my body more and more really upsets me! Is it just me?

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

It's not just you. I think we all feel like we need to be "doing something." The waiting periods have by far been the hardest.

Both Dr. West here, replying to patients with the same concern, and my own oncologist have been very reassuring that waiting is not going to have a significant negative impact. I don't think a delay of a few weeks is that long a time, and once I start treatment my tumors will either respond or they won't. In my case, at least, it's not that big a deal in the grand scheme of things. I appreciate every day during which I'm not dealing with difficult side effects.

If I were suffering with painful mets, or like you, with an effusion, I think I would be more anxious to get started. I hope you don't have to wait too long.
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Craig or Dr west, can you, I mean me countinue to color my hair while on Xalkori?

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

I don't recall anything being said about that. (I do color my mustache.)

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

I don't think there's any information in the world about that, but to my knowledge, there's no issue with hair coloring on targeted therapy. However, my preference is always to minimize additional chemicals if possible.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

I will check with my Dr. Another question thou, woke this morning with a funny thing happening! I seem to have this Hallo affect around things, like if I move my hand across in front of mt there is a hallo around my hand and whole eye. It is mostly around things closer to me than if I look further away eye sight is fine their. Should I call my Cancer Center to report it to the Dr. On call or can I wait I have appointment with eye Dr. Tomorrow to ck because I was seeing some floaters?

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

AuntTootsie,

That might be something similar to "palinopsia" (http://en.wikipedia.org/wiki/Palinopsia). In short, this is lingering after-images, a common side-effect of Xalkori.

For me it only occurs when I'm drowsy or sleepy and under very specific lighting conditions. They look like trailing 98% translucent ghost images trailing behind objects that move across my field of vision, so I only see the edges. The foreground object has to be well lit and the background dark, so I usually see this only in dim lighting at night. If I pay attention too much, I become more alert/awake and the effect disappears.

The most obvious example will be a pole holding up the roof on a staircase to my condo front door. It's gray and is lit, but at night the background is dark. You might say there's a vertical halo next to it. If I didn't move my field of vision, though, it wouldn't be there -- the object has to move across my field of vision.

When I play with it, it only occurs at a certain pace of movement. I use the example of my white hand, lit in the foreground, against the dimer lighting of the background. If I wave my hand across my field of vision too quickly, the image won't set into my vision so there's no palinopsia. If I move it too slowly, the afterimages vanish too quickly to see. I only see the effect as a certain speed of travel across my field of vision. That also explains why I don't see the effect when driving at night. Most objects out in the road are so far away that they don't move across my field of vision very quickly, or on the side they fly by too fast to create an after-image.

Some people describe their palinopsia as trailing threads.

If all you are seeing is what I described above, it is a very common side effects and you'll soon ignore it so much that you forget that it happens. To me it seems like it almost never happens. It also took a couple of weeks before I started to notice it.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Hi Aunt Tootsie,

I think it is good that you have an appointment with an eye doctor. I read the information packet that came with the drug and vision changes are listed as a very common side effect. I think it's good if you can have an ophthalmologist on your team. I'm sure you'll feel better after your appointment. Be sure they know you're on Xalkori, and if you have your package insert you might want to take it along with you.

Good luck,
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Craig it is exactly like that and this was the first time. I had just got up. After up for awhile it went away! I'm happy to say I am noticing a slight change in the Wheezing I normally get while laying on my left side. I actually fell asleep on my side first time in a while! I take that as a good sign! I have noticed sometimes my mouth seems a bit numb and yesterday had a little blured vision. Wasn't worried, they are mild symptoms! I get first blood work tomorrow. That is the important side affect. Talk soon!

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

AuntTootsie,

I don't remember hearing multiple people mention blurry vision as a side effect but I assume it's a known side effect that is just less common. Just in case it's something unrelated, though, have your eye doctors check it out.

Re: palinopsia, certain illegal "recreational" drugs can cause that, so don't be too surprised if the eye doctor asks you if you indulge in some. ;-)

BTW, the side effects (palinopsia, visual flashes, reduced heart rate, etc.) should go away when you stop taking Xalkori (not that you'd want to do that).

Mouth numbness might be worth reporting - I don't recall that one. But do be careful to not let the pills dissolve in your mouth or throat. They can cause sores that take a long time to heal. Your stomach is tougher, but I always eat food before to make sure there's more in my stomach than just the pills (as a result, I've never had any nausea). BTW, one ALKie I know thinks Xalkori made his tongue turn white. I don't know if that's really a change or not in my case, but maybe that relates to the the changes in taste (in my case, sweet things are off, though less than before.)

Yes, it can be important to check for side effects on your blood (immune system, specifically). My blood is completely normal.

BTW, don't be too surprised if you see some edema after several weeks. (Pooling of blood in places like ankles/legs, face.) That, too, is a common side effect that goes away. I don't have that either, at least not measurably. You can usually distinguish edema vs. fat by pressing a finger into it for a while (squeezing out the fluid) and then let go to see if the indentation stays or if it bounces back like fat & muscle elsewhere. I actually took a clothing tape measure and measured my ankles before I started so I'd be able to measure a difference. (In hindsight, I wish I had measured my calves at the fattest point, too. Too late now.)

Have fun playing with your new visual "strings." ;-)

Best hopes,

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

Those vision changes are very classic for crizotinib and are typically most noticeable in morning and evening (twilight). At first there was some fear that the people describing these symptoms could have brain metastases, but know we know that this is just a very common side effect of the drug that isn't associated with brain metastases or any other serious issue.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thankfully I have you guys to keep me informed so I don't panic and go off the deep end! So far after 5 Days I am feeling pretty good! Just Labs tomorrow then next Monday I see my ONC. Thanks!

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

I've been searching for information on the use of proton pump inhibitors while on Xalkori. If I'm understanding, the PPI affects the absorption of Xalkori. I found one study that seemed to open and close within a months' time, and no results were ever published. I'm wondering if anyone knows how much the use of a PPI inhibits the efficacy of Xalkori.

I'm on a high dose of omeprazole (40 mg. twice daily) to prevent varices and control Barrett's. It's not just a matter of discomfort from GERD for me. I don't think my onc. or my GI doc have any experience to guide them here, so any comments would be helpful.

Thanks,
Debra

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

I found this on tarceva...

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

I'm wondering if the same would hold true for Xalkori?

Thanks,
Debra

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

I haven't seen any specific recommendations on PPIs with XALKORI (crizotinib).

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

I wonder if this is a question for Dr Walko.
Debra, I thought you had concluded that it would be OK if you took them far apart in the day, which I think is what people on PPIs do for Tarceva?

dr walko
Reply To: ALK or ROS1 NSCLC Patient Group

Sorry for the delay in jumping in, glad to be back on East Coast time after a recent trip out west though!

The official word on dosing crizotinib with drugs that change the stomach pH (most commonly H2 blockers like Zantac or Pepcid and proton pump inhibitors like Nexium, Prilosec, Axid, Protonix and others) is that no official dosing studies have been done. It appears from some of the early clinical data that lowering the pH in the GI tract would be expected to decrease bioavailability of the drug, which would mean less of the drug getting absorbed, but we don't have official data on this. My recommendation would be to try to separate the PPI as much as possible from the crizotinib, but you have to consider to quality of life issues too.

I will just comment that though there are some similarities between drugs like erlotinib and crizotinib and other -nibs like causing diarrhea and interacting with many drugs due to common metabolism pathways, dosing with food recommendations and other aspects often differ.

Hope that helps!
Dr. Walko

Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Dr. West. I don't feel so dumb now that I wasn't able to find anything in my searches!

And thanks Certain Spring. I may have visited the subject already... I used the search function to check and didn't find any old posts on it, but that doesn't mean they aren't here! I'll admit to having some memory issues.

Dr. Walko, always a pleasure to hear from you. I can work out a schedule where I spread them out, even if I have to set an alarm. I'm already doing that with my thyroid med. because that has to be taken on an empty stomach, so I get up and take that one, then go back to bed. Fortunately I sleep very well.

Again, thanks for the replies.
Debra

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

Debra DoubleTrouble,

Here's the only source document I have on that question:
http://www.accessdata.fda.gov/drugsatfda_docs/nda/2011/202570Orig1s000Cl...
Do a search on the word "proton" to find the subject you're looking for. There isn't a conclusion, but it recognizes a potential mechanism for interference if taken at the same time, so further clinical study of the issue was required. I don't know the status of that further work.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Craig.

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Hello and "Happy Trails" to my fellow ALKies, and hi GRACEr's. Tomorrow I will have a baseline PET/CT and will start Xalkori on Thursday after I've gone over the results with the fellow who is filling in for my onc. I'm a little anxious to see how the multiple new nodules have behaved. Scary stuff. Fingers crossed that they were something other than cancer or that if they are cancer that they are following the lead of my primary and are slow to grow.

My Barrett's biopsy was positive for dysplasia again, so they deferred the decision whether or not to continue my PPI (omeprazole) to my onc. who then deferred the decision on to me. To my knowledge, there are no studies to date that prove that omeprazole reduces the amount of Xalkori that is absorbed, and likewise, there are no studies that prove that PPI's prevent Barrett's dysplasia from progressing, so it has come down to a QOL issue. I'm going to cut the dose in half and make sure I take it at least 2 hours before or after I take the Xalkori. If I become miserable with reflux I will have to rethink things.

My pulmonary doc. will look over the scan and help me decide if a bronchoscopy is in order for the very scant hemoptysis. I'm off the macrolide and am using an inhaled steroid. So far the awful coughing fits have not returned, but I still cough up little blood tinged bits throughout the day. Much less distressing than before, so his approach worked.

I asked my onc. if we would only see a response in the lymph node that was positive for ALK or if we might expect a response in all the areas of cancer, and if the response might be minimal since only 20% of the tissue was ALK positive. He said I should be a researcher with my good questions! We concluded that it really is a crap shoot (my words) or as Dr. West puts it, anything can happen with cancer. We will just have to wait and see. Wish me luck!!

With Love,
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Hey Debra! Good Luck tomorrow with your Scan! So glad your finally ready to start your Xalkori! I will be waiting to hear from you!

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

Debra,

I would have assumed that all cancer cells in your body that have the same ALK-driving mutation variant making them sensitive to the Xalkori would be inhibited by the Xalkori as long as the drug can reach them (e.g., not in the brain). That doesn't mean there'd be shrinkage everywhere, just that a benefit should be seen. If there is progression somewhere, that would mean it's not the same ALK variant (or maybe even a different driving mutation or an interaction with some other gene's adaptability to work around the drug). Just my guesses.

Regarding the PPI, did you call Pfizer to ask? They'd be the only people to know the correct answer (unless you happened to talk to an oncologist who led the further testing of PPI interactions). If I recall correctly, the Xalkori takes something like 4 hours or so to reach maximum concentration in the blood. (BTW, on other forums I've seen a couple of people say they opted to take their conflicting medicines 4 to 6 hours after their Xalkori dose, but I can imagine that's be really hard if you needed one at night and you didn't take your Xalkori until late.)

BTW, to avoid complications from reflux (even though I don't have that problem), my doctors recommended staying upright for an hour after taking the pills. The pills are caustic to the mouth and esophagus and can cause sores that are slow to heal, so make sure they're washed down into the stomach rather than stuck along the way.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Craig. I did think about calling Phizer but couldn't find the number. I'll check again tomorrow. Thanks about the sitting up tip. I was told to raise the head of my bed too. They make risers that go under the legs that won't slip around. Not too expensive and comes in pack of 4.I'm pretty good about rinsing with salt water whenever there's a sore spot in my mouth. Drinking lots of water isn't a problem. I think I'm prepared. I think I can get a pill schedule worked out. I will just have to get used to it.

I love from hearing from you both. I'll update you on Thursday!
Debra

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks again Craig, and I did talk for some time with a pharmacist at Pfizer. She just reiterated that any drug that alters the PH of the stomach will interfere with the absorption of Xalkori, and PPI's are not recommended during treatment. We talked putting several hours between the two, and she didn't really want to endorse that idea, but suggested calling the manufacturer of the PPI to ask how long the drug affects PH. She also suggested trying to find a cancer center that had more experience with patients on Xalkori and ask if they had any recommendations. I wouldn't know where to start with that.

I am just going to stop the PPI, elevate my bed, take Xalkori with food, and avoid any foods that cause heartburn. The lung cancer takes precedence over the Barrett's, which is pre-cancerous and may or may not progress to esophageal cancer. And we will continue to monitor the Barrett's closely with endoscopy and biopsy. If it develops it can be treated with ablation.

I feel a little like a lab rat today!!! :-?

Thanks, Aunt Tootsie!!

Debra

catdander
Reply To: ALK or ROS1 NSCLC Patient Group

Debra, your doctor's right, you really should be a researcher. I'm so impressed with your sense of order.
I thought a quick look at clinicaltrials would give me an idea of cancer centers that are conducting xalkori trials. Often (or at least it used to) they name the lead investigators but the closest I get is the zip code of the trial centers. Still for example I found that UAB has 2 locations here in Birmingham that are conducting trials on this drug. I can't just now but a call or several to a willing receptionist might yield avenues to information about PPIs and xalkori. Perhaps I'll find something in the next couple of days.
Much hope,
Janine

craig
craig's picture
Reply To: ALK or ROS1 NSCLC Patient Group

Thank you, Debra, for letting us know what the Pfizer person said.

Yes, consider doing a search in
http://www.clinicaltrials.gov/ct2/results/refine?term=crizotinib
and specifying states near you in the pull-down box for that.

Some trials might be better than others, in terms of how much experience the physicians in a given location might have.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Janine and Craig! Day one and all is well so far. I had my other eye zapped today with no problems, saw the fellow then came home and took my first dose. We went out and bought some bed risers to raise the head of my bed. It looks pretty steep to me. Lets hope I don't slide off in the middle of the night. :-P

I also was treated to Thai food for lunch, a great treat and much appreciated since food might start losing some of it's appeal soon.

I'll post any side effects or questions as I go. Great to have the support of fellow GRACER's, and in particular my fellow ALKies (Craig... see what you started!)

Love,
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Good luck and just remember the tips Craig mentioned: don't let the pills to melt in your mouth and try not to let it get stuck in your throat. I too suffer from Acid Reflux so try not to lay down for at least an hour after. So far no problems in that area. Diarreha was a major issue first week but today is 3 weeks and it is better. In fact I have to take Metamucil to keep me going. Photophobia is the only eye problem but only noticible in the morning and sometimes in the evening. At first I had to watch what I ate but now pretty much eat what I want. Some things still trigger me. Sugar is one. You'll figure it out! Keep us posted and hopefully you won't slide out of bed! I told my sister I needed Velcro on my Butt to keep me from sliding down. Good luck!

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Velcro! Got it!

Well, I spoke too soon... running, and I mean running to the pottie, only 8 hours in! This is worse than prepping for a colonoscopy, ha ha! Thanks for reminding me about not lying down for a while after taking it. I would have done exactly that tonight, so you saved me. Thanks Aunt Tootsie! Happy Trails!

Debra

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