ALK or ROS1 NSCLC Patient Group - 1244753

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craig
craig's picture
ALK or ROS1 NSCLC Patient Group - 1244753

Since CancerGRACE has a forum category for patient user groups, I thought I'd start one for ALK-driven and ROS1-driven cancers. These two genotypes of NSCLC seem similar (although on different chromosomes) and tend to respond to the same drugs (both Xalkori (crizotinib) and 2nd generation treatments), although maybe to different degrees.

Welcome!

Best hopes,

Craig in PA

neilb
Reply To: ALK or ROS1 NSCLC Patient Group

Craig: I'm in Pittsburgh. How do I join the patient group?--Neil

pamela77
Reply To: ALK or ROS1 NSCLC Patient Group

Is the ROS1 marker for nsclc available throughout the united states? I was under the impression that it was only available in certain hospitals on the east coast. If, not,can anyone mail in bloodwork to see if they have this mutation? Thank You

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

My understanding is that only Massachusetts General and the University of Colorado are doing the test. I believe they may both be offering it commercially to people, though whether it will be paid for by an insurer is another question entirely.

-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

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

neilb,

You just did, if when you replied you left the "Notify me of follow-up replies via email" checkbox checked when you replied. This means you should be notified whenever someone else offers a comment to this discussion. (If they start a discussion under a new title, you'd have to notice that on your own or have someone drop a message here to alert us to it.)

I was assuming that just having a running discussion for ALK & ROS1 would be useful to those whose cancer is already known to be driven by either of those. (If I misunderstood the purpose of this category of the forums I imagine someone from "management" will correct me.)

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)

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

pamela77,

Short answer: Any doctor can send biopsy samples for testing at one of the labs that Dr. West mentioned for ROS1 testing. There might be other places, but I'm not sure where or if they'd be accepted for eligibility to Pfizer's Xalkori(crizotinib)-for-ROS1 trial.

Long answer:

Like Dr. West said, Massachusetts General Hospital (MGH) in Boston and U. Colorado in Denver are the two places that do the ROS1 test right now. There will be other places, but I'm not sure where or if it'll meet Pfizer's standards for the trial, so you'd have to ask the lab you're considering.

One person told me Sloan-Kettering in NYC is planning their own test, but didn't have it a month ago.

One person told me a cancer center in Detroit did test them for ROS1, but there was conflicting info that made me suspect that ROS1 test or procedure or technician judgement was giving a false-positive result (e.g., not testing for the correct kind of ROS1 mutation), so it might not be reliable enough for Pfizer's trial.

If you are within driving distance of either Boston or Denver, I highly recommend an "2nd opinion" office visit to Dr. Alice Shaw (MGH, Boston) or Dr. Ross Camidge (U.Colorado, Denver area). I believe they are the top two docs in the world for ALK & ROS1 right now (with Alice being a smidgen better, esp. for ROS1, but I'm very biased). If you're nearby, I think you'll find it worth the trip. If you are not nearby and you'd like someone at MGH to coordinate things on their end, Dr. Shaw told me she'd be willing to help with that. (You can google her email address or private message me via inspire.com and I'll share it.)

re: insurance, you'll have to ask your insurance co about that. Mine covered my ROS1 test just like they did the ALK one. Given the good results Xalkori for ROS1 is showing, I'd think it'd be hard to justify not covering it except that the odds of ROS1 are small.

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)

neilb
Reply To: ALK or ROS1 NSCLC Patient Group

Didn't click that box the first time, so I guess now I'm officially a member!--Neil

mj82
Reply To: ALK or ROS1 NSCLC Patient Group

If you are on the West Coast, Stanford University tested my husband's biopsy sample for the ROS1 mutation. He was contacted that he was positive for ROS1.

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

Wow, mj82, that's really excellent news!

Welcome to the ROS1 club! It can be quite a blessing (if one has to have lung cancer at all, that is), assuming the testing is accurate. See:
http://www.inspire.com/CraiginPA/journal/i-am-a-ros1-mutation-success/?r...
and in particular the graph at
http://chicago2012.asco.org/ASCODailyNews/Abstract7508.aspx

Since Xalkori for ROS1 would be an off-label use (and not covered by insurance) unless via a trial, what clinicial trial are they recommending & where? If the Pfizer Xalkori-for-ROS1 trial, is there a new location near you now and is the test Stanford did acceptable according to Pfizer's trial protocol or will it have to be re-done by MGH or U.Colorado? The California location for the the Xalkori-for-ROS1 trial was at UC Irvine, or are they opening a location closer to you now that your husband it there? ;-)

BTW, I'll be very interested in hearing about his "profile" (age, risk factors, dietary style, etc.) and any thoughts he has about about potential causes of his cancer. ROS1 is so rare that I'm wondering if we might have something in common.

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)

certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

Just trying to attract the attention of Craig, or anyone else with an interest in ROS, to this post asking about the Ariad trial (for someone whose sister has progressed on crizotinib):
http://cancergrace.org/topic/ariad-26113-for-ros1-patients-resistant-to-...
I gave the poster a link to a discussion on Inspire, but thought that others might have more up-to-date information on side-effects etc.

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

Thank you for drawing my attention to that, certain spring. I wouldn't have noticed that otherwise and it is good that you cross-referenced it here for the benefit of other people who want to follow ROS1.

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)

mj82
Reply To: ALK or ROS1 NSCLC Patient Group

Craig - I don't know the answer regarding Stanford and if their testing is acceptable for any trial. My husband consults with the lung cancer specialist there whenever there is a change in his status and is treated locally by a general onocologist. It was suggested that he remain on Alimta at this time and should their be further developments there was another option.

Both his parents lived into their 90's+. Dad had cancer but don't know what kind, passed at 95 (btw he smoked all his life). No other cancer in family that we know of.

(sorry for the delay in response-I'm having a hard time navigating the website these days, I've "lurked" in the background for a long time but never been active)

Husband dx 7/07 stage IIIb adeno(age 59 @ dx)
9/07 concurrent rad/chemo-taxol/carbo,11/07 2nd cycle chemo, PET NED, 7/08 PCI,3/09 progression to other lung,5/09 2nd line(Cisplatin,Alimta,Avastin), 10/09 maintenance Avastin, Alimta, 6/11 PET NED, 4/12 PET NED, 4/12 dxProteinuria term'd Avastin, maintenance Alimta, 7/12 positive ROS1

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

It's a little hard for me to guess what trial they might have in mind.

I don't think the crizotinib-for-ROS1 trial is available in northern California at this time (but is at UC-Irvine). Maybe they'd want to expand there if they knew some ROS1's were found there. ;-)

And even the promising 2nd gen drugs LDK378 and AP26113 don't seem to have a trial location near there right now. (If my memory is correct, Seattle might be closest for the former unless a withdrawn location at UCLA or nearby reopens, and UC-San Diego for for the latter.) As far as I know, these are the most promising 2nd generation drugs, but crizotinib is a more proven choice (both ALK and ROS1) and might avoid certain kinds of resistance (e.g., it also suppresses MET) whereas the others might be better at other kinds of resistance (based on pre-clinical lab experiments).

For myself, I am happy to travel to my trials as far as I can go by car or train in a day, e.g., 500-600 miles each way, but I currently only have to drive half that for mine (to Boston) currently.

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)

jmpchic
Reply To: ALK or ROS1 NSCLC Patient Group

Hi! Just wanted to join the group. My husband is Stage IV NSCLC ALK +. He has been on Xalkori for a year now.

joppy
Reply To: ALK or ROS1 NSCLC Patient Group

I would like to join the ALK group.

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

Welcome, jmpchic & joppy.

Most of the discussions seem to be separate, but it's nice to have a way for Xalkori (& 2nd gen ALK/ROS1 drug) users to stay in touch here.

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)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Hi Craig! KRAS+ on tissue from left lung... ALK+ on tissue from subcarinal node. I just can't be normal!
Debra

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

Welcome, Double-Trouble.

Are your doctors sure you have different driving mutations in the two areas? (That is extremely rare initially, though you've had chemo and radiation so maybe that changes the odds.) Could they independent primary tumors? Are they sure neither one is a false-positive test result (as does happen some % of the time)?

If the ALK+ cancer is the front-runner, I would guess that Xalkori might set it back for a bit until the KRAS becomes the front-runner again. KRAS seems the tougher one just because there isn't a proven accepted targeted inhibitor drug for it yet, though there are experimental trials, e.g., HSP90 inhibitor ganetespib (which also has a chance of working on ALK), etc.. Is there any way to keep the KRAS part under control as though it were a separate primary? What other treatments are your doctors considering? Besides conventional things and things targeted to a driving mutation, maybe an immunotherapy drug like some kind of anti-PD-1 drug?

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)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Hi Craig. According to Dr. West there is no way to know if there are two primaries or not, but that is how they have been looking at this. The KRAS positive tissue was from the left lung, which was resected, and no more areas of concern have shown up in that lung since (2 years).

The ALK tissue was from a subcarinal node, presumed to be a met from the second primary in the right lung. The sample was 20% ALK+. (has to be at least 15% to get Xalkori)

So, I now have a clear left lung, a cavitated lesion with no SUV in the right lung (the main second primary tumor, killed with chemorad (?)), a clear paratracheal node that was PET avid prior to chemorad, a very angry hilar lymph node that is growing in size and metabolic activity, a poorly differentiated adeno-like and ALK+ subcarinal lymph node, and now 3 new lesions, all about 1cm, in various locations in the right lung. I would have to re-check but I think they are all in the upper lobe.

I will talk to my onc. tomorrow, I guess, by phone. I haven't spoken to him about the mutation status or the most recent scan. Right now I'm just trying to get him on the phone about all of the new developments. We were not supposed to meet again until January.

The mutation analysis was done by break apart FISH at Duke University in Durham. I think they're pretty thorough.

I'm new to some of this so I hope that was clear (and correct) and answered your questions.
Debra

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

Touble-Trouble Debra,

I think I understand you pretty well.

It sounds like you might be saying that the KRAS cancer might be pretty much gone, is that right? If I'm hearing you correctly it sounds like ALK-driven adenocarcinoma is the front-runner problem (the only visible one), right? I'm no professional, but that makes it sound like it could be worth trying Xalkori at some point.

Are you considered either "Stage 4" or somehow incurable, or are you considered to be at an earlier stage? Inhibitor drugs like Xalkori don't have any chance of eradicating cancer; they just inhibit it, often well enough to shrink it and stop some cancer symptoms), so most oncologists will use other methods (ones that might offer a chance of cure, however slim) for earlier stages.

Keep in mind that there is a risk of false-positive at any lab, though some are probably better than others, but a positive test result suggests an 85% or better chance of an ALK inhibitor like Xalkori being useful (either shrinkage or just stability). As far as I know, it's not possible to predict more precisely.

BTW, just to be safe,I recommend you get a copy of the lab report and read it yourself, or have it read out to you word by word, or have your oncologist (not a nurse) verify it's definitely saying positive for ALK. I could tell you story of someone who was mis-read their ALK test result over the phone and it led to bad consequences.

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)

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

I'd just add that if you watch Dr. Sequist's podcast about acquired resistance or as is mentioned in a post I did about work by Dr. Doebele about acquired resistance in ALK+ patients, we can sometimes see mutational profiles shift under "evolutionary pressure" of treatments. In other words, you might see an EGFR mutated cancer shrink beautifully on an EGFR inhibitor, but then the cancer that progresses after that actually shows a different molecular profile, perhaps with a different mutation that was rare -- too rare to be found in a population of EGFR mutated cancer cells -- but is now the dominant clone after all of its EGFR mutated brothers have died off from EGFR inhibitor therapy. Or there's a rare cell that just mutates to develop a new mutation and then divides and divides.

We really don't know yet the full range of what a cancer is capable of doing, molecular marker-wise. I think it just goes to show you that there are no rules without exceptions, but it makes it pretty close to impossible to predict what will happen in such an individual case.

-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

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Hi Craig. You are reading things pretty much the way I am... that the KRAS is pretty much gone. Only stable micronodules in that lung.

I have a copy of the report. It's pretty clear. I was staged at IIIa, and later found to be unrestectable, so I don't know if they would change the stage or not. My onc. writes in his notes that I will "return for restaging" but I've never heard it called anything other than IIIa. Probably now would be called IIIa with recurrance? I don't know for sure. It is still inside the chest and on the right side.

I hear what you say about false positive. You don't want me to get my hopes up too much. The report says the finding is based upon the analysis of two different molecular technologists and examination by the signing pathologist.

It says: Tumors are considered FISH positive and amemable to treatment with crizotinib if greater than or equal to 15% of scored tumor cells have split ALK 5' and 3' probe signals

Mine is: 20%of tumor cells exhibit an abnormal (positive) signal pattern (Split ALK 5' and 3' probe signals or isolated 3' signals.)

And elsewhere: Positive for rearrangement of the ALK gene.

So I get that it's 20% ALK and 80% normal, which may not be the best odds for response, I don't know. But as the report says, its "amenable to treatment with crizotinib. I sure hope so.

Debra

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thank you Dr. West... You and I must have been typing at the same time. I don't know why my case has to be the odd one. Well, Laya's mom's cancer did some strange transforming too, I remember. Some of us are just blessed that way!

Debra

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

My oncologist wrote the prescription for Xalkori and my insurance has approved it. They did require proof of ALK positive status. I was wondering what companion drugs are used with Xalkori, if any? Example: to prevent allergic reaction and nausea?

Thanks,
Debra

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

Nothing routine. I have a patient who swears that taking XALKORI with yogurt has remarkably reduced the nausea she previously experienced when taking it.

-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

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

A lot of patients on forums have reported less (or no) nausea if Xalkori is taken after eating some food rather than on an empty stomach. I have never had nausea from it, but I have never taken it on an empty stomach. I started to feel a tiny big of nausea one time when I have very little to eat, though, but it passed for me.

FYI, the trial showed that the amount of Xakori that gets into your system after a high-fat meal is 85% that on an empty stomach. (85% is still a pretty good dose even if it isn't optimal.) I don't know if the fat amount specifically was the biggest cause of that or not, but I try to have low-fat meals before my dose if I can.

There are anti-nausea medications that can be offered by your oncologist. But they have some side-effects. There is also a milder over-the-counter anti-nausea medication of some king that your local pharmacist might recommend that might be sufficient for some people (per one or two patients on an online forum). I don't recall the name of the OTC medicine, but your local pharmacist would probably know.

Imodium is also recommended as a means of controlling diarrhea. (I get that periodically; I got it a lot initially.) Don't overdue it though -- I tried taking 1/2 pill i.e., 1/4 dose with each Xalkori dose and it gummed up the works for days; since then I try to limit my use of Imodium except when I really need it to bring things under control (or when traveling and I can't take risks).

BTW, I tried a little yogurt with my 1st dose of Xalkori and it let to diarrhea. It seemed like I had developed a kind of lactose intolerance. I eventually recovered some lactose tolerance, but it seems to me as if Xalkori slows my digestive adaptability resulting in diarrhea when I change my diet (e.g., eating out vs. eating more consistent preferences at home).

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)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Dr. West and Craig, thank you both for the info. I won't be able to start for another month. Plenty of time to stock up on imodium and yogurt. It's very good to hear that the side effects are so manageable. I will also remember to eat prior to taking it. I'm really bad about not eating breakfast. This will give me incentive. I know it sounds crazy, but I'm anxious to get started. Again thanks for the advice.
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Hi would like to follow on here! I was just tested Positive for ALK and will be going on the XALKORI hopefully on Monday that is if my meds come in time. Not sure what to expect even after a training class. I already deal with half the possible side affects. Is there anything I can do to help make this easier to maneuver?

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Great news! I will be following in your footsteps in December. So far, I have just bought some immodium in case of diarrhea, and plan on making sure I take some form of probiotic, in my diet, like yogurt with active cultures or kefir.

I live alone, and since this is an oral med. that we will be taking at home, we won't be monitored like we would be at an infusion center, so I want to be sure the kids are checking in on me regularly, particularly during about the third week, which is when my onc. says the drug will have accumulated enough for side effects to show up. I plan to educate them about the potential side effects so that they know what to watch for, and know what to do if anything goes haywire.

Generally though I think it is a pretty well tolerated drug. My onc and I also discussed meds for nausea and we found that the ones we are most familiar with are contraindicated in the package insert, so we're trying to figure that one out, but its on a just in case basis. I don't usually get nausea.

I asked how many patients he has treated with Xalkori, and he said, "You'll be my second." Nothing like inspiring confidence from the jump. We laughed about it though. I'm ready.

Good luck aunttootsie, and please post your experiences.
Debra

p.s. Craig is the expert here

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

I'm already glad I read this so I can stock up on these essentials to have on hand. Just in case! Thanks.

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

aunttootsie001,

Not sure what to suggest that your doctor wouldn't, but from my perspective with Xalikori ... :

1. Taking food before a dose avoids nausea for many patients.

2. If you still have bad nausea, your doctor may be able to prescribe an Rx, but if it isn't very bad your local pharmacist might be able to direct you to an OTC medicine that can suffice. Since the Rx's have side effects of their own, this seems like a good idea.

3. For diarrhea, imodium is your friend. Be careful not to overdo it, though, because getting jammed up for too long can lead to a medical emergency, too.

4. I found dairy was my primary trigger for diarrhea, but that lessened over several months.

5. Expect taste alterations. Learn to think of food as nutrition. In my case, only sweet was altered, so my nutrition didn't suffer. The alteration diminished over time.

6. Don't stare into the sun or let a bright ray of sun blast an eye or your vision might be disrupted by an afterimage for an hour or more.

7. Report everything to your doctor and let him/her decide what I important in your case.

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)

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

P.S. -- The doctors are the experts here. Patients like me just share what info and experiences they've learned. (I did a lot of reading about new research for several months, but slacked off this summer so I'd need to catch up to be properly up to date again.)

_________________________________
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 was wondering about a diet recommendation? I really don't eat that good.

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

Xalkori doesn't require a special diet. Although a high-fat meal before Xalkori will reduce absorption of the drug to 85% instead of what it is on an empty stomach. So in general you can follow general advice on eating a variety of foods. E.g., http://en.wikipedia.org/wiki/Food_guide_pyramid

I'm not a nutritionist nor a nutrition fanatic, so I am skeptical when I hear claims of great benefits to people with cancer who are already reading a healthful diet. To those are malnourished, though, it might make a big difference to improving one's immune system. My diet mostly just follows a low-fat theme, with a splash of junk after I get lean meat (esp. fish), veggies, & fruit; and I had a good response to Xalkori. I don't think my diet was relevant to my results. When traveling I eat very plain stuff because Xalkori makes my digestive system touchy (the runs) about whatever it is restaurants put in their food.

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

Go to go then! Thanks to all! Will repost after I get started!

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

One more Question. My husband and I have been real Big Wine buffs, is it recommended to avoid Wine or other Alchol? I figure I should avoid it to give the meds a chance to do what they are suppose too?

catdander
Reply To: ALK or ROS1 NSCLC Patient Group

A quick look around suggests grapefruit and grapefruit juice are the only alcohol/food interactions to be avoided. Cheers!

I suppose we should ask a pro though. I'll ask Dr. Walko for input.

"What special dietary instructions should I follow?
Do not eat grapefruit or drink grapefruit juice while taking this medication."
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0046825/#a612018-specialDietary

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

Xalkori needs a healthy liver, so in my Xalkori-for-ROS1 trial alcohol was not allowed at all until they could judge the effects of the drug on the liver. Once that was proven fine (after a couple of months) I was allowed to occasionally have a moderate amount of alcohol if I wanted, . . .

. . . but I haven't yet because I'll probably be abusing my liver with other drugs during my remaining lifespan so I prefer to keep it in the best shape it can be for when I'll need 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)

dr walko
Reply To: ALK or ROS1 NSCLC Patient Group

Just to add further, crizotinib is broken down in the liver before it gets eliminated from the body, however most of the liver needs to be non-functional before this process is significantly stopped. Crizotinib also can cause some toxicity to the liver (common with drugs that are broken down there) which could be worsened by alcohol use. Alcohol is usually not permitted on clinical trials looking at drug toxicities specifically since use of alcohol alone can increase liver enzymes and investigators do not want this to be contributed to the drug if it's really due to alcohol.

So, long story short, if you are not on a clinical trial and your liver enzymes are normal or near normal (and your liver is healthy otherwise), then a glass of wine with dinner or a tasting is probably fine. I can't promise the taste of the wine will not be affected by the drug though, unfortunately. Perhaps limiting yourself to only high quality wine would improve the taste :wink: I suspect that Dr. Weiss may support the limitation to only high quality wines as well.

Best wishes....and cheers!
Dr. Walko

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

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks for info. High quality Wine is all we drink but just so you know I was planning on forgoing any Alchol at least during the first part for sure! But glad to have the info! We have run into a Snafu, I was contacted late today by the Pharmacy that is supplying the XALKORI which I was suppose to start on Monday that my Copay is $2,750.50 a month. I was given several websites to contact to widdle down the Copay and I have to get back to them before 1:00 tomorrow! I am freaking out because I'm not that good with Internet. So I guess I'll call Hope Center tomorrow to see what my options are. Which is my better chance for longer survival, chemo or target drug? At this point with all the possible side affects and I have stomach/bowel issues already not sure it would work for me and now this financial road block I'm thinking Chemo might be the better option! Very upset over this whole issue! Total breakdown!

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

aunttootsie001,

I don't think anyone can predict which will help most or longest. I think the odds of a benefit from Xalkori (roughly 85% or better chance shrinkage or stability for a number of months) are significantly higher than for chemo, and side effects are often much more managable. You should ask your oncologist, but I think the trend is toward recommending trying a targeted inhibitor drug (if one is applicable) before chemo if someone is Stage IV or is considered incurable. (Chemo offers a chance of cure, however small, that inhibitor drugs don't.) A good converation with your oncologist might help sort out your personal priorities and preferences vs. odds of effectiveness & side-effects.

You can find Pfizer's Patient Assistance Programs here:
http://www.pfizerhelpfulanswers.com/pages/Find/FindAll.aspx

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 walko
Reply To: ALK or ROS1 NSCLC Patient Group

aunttootsie001,

I know the cost issues of these drugs are challenging, but just about all of the drug companies do have copay assistance to help with large costs. The website below is Pfizer's patient assistance plan:
http://www.pfizerhelpfulanswers.com/pages/Find/Find1.aspx#

What you need to do is select the drug (Xalkori, it is sorted by brand name, so click on the letter "X" on the menu) and then click "go to step 2". Here the site will ask you a lot of specific information including your income and employment status. After you complete this, it should provide you with more information about who to contact for the assistance plan you qualify for.

Another option is to have the specialty pharmacy sending you the drug to help. Where are you getting the medication? (Most of these drugs do not come from usual retail pharmacies). Many specialty pharmacies have patient assistance counselors who will help you with the process. Living in North Carolina, Biologics is my preference since they do a great job of customer service for patients with exactly the co-pay issue you are having. Their website is: https://www.biologicstoday.com/oncology-pharmacy/

Hope this helps, I work with this problem with a LOT of patients so you are not alone. It will work out and get paid for eventually, don't worry!
Dr. Walko

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

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

In truth, our hope is to give a patient with an ALK rearrangement BOTH chemo and an ALK inhibitor, but the ALK inhibitor is typically the treatment that will be associated with a greater probability of tumor shrinkage, and a response that will last for longer. Because of that, the ALK inhibitor is the higher priority, and I would say that most if not all lung cancer specialists would favor giving the ALK inhibitor (XALKORI (crizotinib) being the only commercially available one right now) as the first priority for an ALK-positive patient, if for no other reason than to assure that someone with an ALK rearrangement gets their opportunity to benefit dramatically from a likely very effective therapy for them.

-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

Thank You everyone for you helpful info. It appears I have to wait until monday to talk to them at Hope Center to let them know of the recent problem. Dr. Walko they ordered it from Curasript. They didn't call until 7:00pm on Friday so I haven't been able to reach anyone. I went online and did find Phizer page but my computer doesn't have the same program as them and I can't download the form that needs to be filled out. so once again I have to wait until tomorrow to call the 800 #. It is just very frustrating to try and get this settled! We already are still paying on Bills and Dr's from last years Surgery,Chemo,Radiation,CT's extcetra, so we are in a Quandry. Really can't afford it to be very much. If it is we will have to find a way of making Payments! My insurance is Thru Unitedhealth and we have a supliment thru AARP Medicare Complet which normally pays on this stuff pretty good, but $2,750.50 for 30 day supply is way out of our range! I'll let you know what happens after tomorrow!

catdander
Reply To: ALK or ROS1 NSCLC Patient Group

I just hate that there's a difference in insurance between IV chemo and pill form. It often costs more for IV treatment than tarceva. Xalkori I don't know about. How is that?
I'm so sorry, keep us posted, and we'll keep looking for the answer you need.

certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

Sorry to hear about all these hurdles, and hope it works out once you've had a chance to speak to somebody.

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thank You ladies for your input! I appreciate all the Support. Well first thing this morning I called my Cancer Center and let them know my situation and they are checking into what I can do. In the mean time I called Phizer to request Copay assistance. I will say the Lady I spoke to (Shirley) was very nice. Took info. And said she would check it out and get back to me today! Praying they are able to get it with in a range we can handle. We are with AARP Medicarecomplete and my Husband is going to see what he can do to try and lower our Copay for next year. This will be a test to the prexisting condition Claus in Obama Care?
In the mean time I will be going to visit and hopefully get to hold my Newest Great Grandaughter who was born Oct. 4th at 31 weeks. She is home now and doing very Well. She is my light! Will keep you posted!

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Hoops and more Hoops! Just spent 2hours on the phone most of it press 1, press 2 and then finally contacting a real person. Called 5 foundations total. 2 No's and then 1 pending us receiving forms and sending them back. And another that tentatively able to help us with same criteria waiting forms and confirmation of our income and prior insurance amount. All in all stress level down a little but still have to wait to start Meds. Probably a week or two to wait Snail Mail.

catdander
Reply To: ALK or ROS1 NSCLC Patient Group

Good work! I think you will make it, you will get the drug because of your tenaciousness. It's a hell of a note but I think that's the way the system is set up...and has been for many years. My money is on the woman at phizer.

When you get that great baby in your hands your stress level will drop even more.

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks Cat, just hope it moves along faster than I'm thinking! Will keep you all posted!

laya d.
Reply To: ALK or ROS1 NSCLC Patient Group

Hi Aunt Tootsie:

I don't know if you recall, but my Mom also treats at the City of Hope and receives her Tarceva via Curascript. For the most part, our experience has been that they are very on-top-of-things once the insurance and payment issues are resolved. We've had nothing but positive interactions with Curascript's Customer Service Department, and they will overnight you your meds, even if it falls on a weekend. In fact, my Mom has received things on the weekend from them. They generally call the day before your meds are due to arrive to make sure that you know the meds are coming.

So, best of luck to you...and great job with keeping your stress level down through all of this.

Laya

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