ALK or ROS1 NSCLC Patient Group

Portal Forums Lung/Thoracic Cancer Patient/User Groups ALK or ROS1 NSCLC Patient Group

This topic contains 518 replies, has 34 voices, and was last updated by  aliciauk 6 days, 7 hours ago.

Viewing 20 posts - 21 through 40 (of 519 total)
Author Posts   
Author Posts
October 25, 2012 at 6:02 pm  #1249542    
Dr West
Dr West

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

October 25, 2012 at 6:06 pm  #1249543    

double trouble

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

October 25, 2012 at 6:13 pm  #1249545    

double trouble

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

November 1, 2012 at 4:56 pm  #1249794    

double trouble

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

November 1, 2012 at 5:17 pm  #1249796    
Dr West
Dr West

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

November 1, 2012 at 8:24 pm  #1249799    

Craig

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 IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

November 1, 2012 at 8:37 pm  #1249801    

double trouble

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

November 8, 2012 at 5:51 pm  #1249993    

aunttootsie001

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?

November 8, 2012 at 6:07 pm  #1249995    

double trouble

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

November 8, 2012 at 6:08 pm  #1249996    

aunttootsie001

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

November 8, 2012 at 6:11 pm  #1249997    

Craig

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 IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

November 8, 2012 at 6:13 pm  #1249998    

Craig

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 IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

November 8, 2012 at 6:20 pm  #1249999    

aunttootsie001

Thanks Craig. I was wondering about a diet recommendation? I really don’t eat that good.

November 8, 2012 at 6:34 pm  #1250000    

Craig

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 IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

November 8, 2012 at 6:38 pm  #1250001    

aunttootsie001

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

November 8, 2012 at 6:50 pm  #1250002    

aunttootsie001

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?

November 8, 2012 at 8:02 pm  #1250003    
catdander forum moderator
catdander forum moderator

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

November 8, 2012 at 9:24 pm  #1250005    

Craig

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 IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

November 9, 2012 at 6:37 am  #1250009    

Dr Walko

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 Walko, PharmD, BCOP
Clinical Pharmacogenetics Scientist
Moffitt Cancer Center, Tampa, FL

Views expressed here represent my opinion, not those of GRACE or Moffitt Cancer Center. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

  • This reply was modified 4 years, 2 months ago by  Dr Walko.
  • This reply was modified 4 years, 2 months ago by  Dr Walko.
November 9, 2012 at 5:33 pm  #1250031    

aunttootsie001

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!

Viewing 20 posts - 21 through 40 (of 519 total)

You must be logged in to reply to this topic.