XALKORI side effects - 1245070

bonniese7
Posts:14

I'm new to this site and I will apologize beforehand if this question has already been addressed but who is familiar with the side effects of Xalkori? My husband has NSCL cancer and has been taking Xalkori since last November. He has consistently had severe diarrhea ever since and is exhausted. He is willing to put up with it as his scans have come back showing no metastasis. I tried a combonation of cottage cheese and flax seed oil and it made a huge improvement for about six days but then the diarrhea came back. What supplements are other people taking who are on this drug? Thank you for any reply.

Bonnie

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Reply # - July 13, 2012, 07:10 PM

Dr West
Posts: 4735

I don't think diarrhea is especially common with XALKORI (crizotinib), as the main side effects are really (generally minor) visual ones, potential abnormalities in some liver blood tests, and perhaps low blood counts. In people with diarrhea, we routinely give them imodium (loperamide) to try to control it, and there are some other potential interventions described here:

http://cancergrace.org/cancer-treatments/2011/04/08/glamorous-topics-in…

Another option is to reduce the dose of the drug if it is felt that the side effects are unmanageable or unacceptable.

Others may have some experience and be able to comment specifically on some other ideas, but as I say, I don't think that there's a lot of experience with XALKORI-induced diarrhea.

-Dr. West

Reply # - July 14, 2012, 09:23 AM

bonniese7
Posts: 14

What are you seeing as the average length of time that patients stay on Xalkori? Is it used as a maintenance therapy eventually? Since he is on Xalkori then you know that he has the ALK gene. He is 30 months into treatment and his last C.T. scan showed no progression. Would you or any of your doctors recommend to your patient to possibly cut back on the dosage at this time? Our oncologist doesn't seem to have a clear view on this one way or another. He feels that we should just stay the course as it appears to be working. My husband never had any lobectomy but can the cancer just stop. Can treatments be that effective or is that impossible? Where was Xalkori developed and where were the first trials done? My husband is his doctor's first patient to use this drug.

Thank you again for your reply.

Bonnie

Reply # - July 14, 2012, 02:37 PM

Dr West
Posts: 4735

You can read about the history of XALKORI (crizotinib) in these posts:

http://cancergrace.org/lung/2010/02/26/dr-camidge-one-size-does-not-fit…

http://cancergrace.org/lung/2011/10/31/ben-solomon-alk-inhib-podcast/

http://cancergrace.org/lung/2011/11/12/rc-on-molecular-screening-and-po…

The median duration of a response to XALKORI is about 10 months, but there are certainly some patients who can continue to respond for years. Because the drug has only been available for a few years, we don't know the limits of what's possible, but I think just about every expert believes that we aren't curing metastatic NSCLC with XALKORI, even if we are able to provide excellent control, potentially for a time period extending into years. There is really no good study of cutting back on the dose, but I would say that there is a definite consensus that if the side effects are dangerous or intolerable, it's appropriate to cut back to the point where it becomes safe and tolerable. However, I suspect that, based on very limited work out there, if the drug were put on hold or even cut to too low a dose, the cancer would progress again.

-Dr. West

Reply # - July 14, 2012, 09:25 PM

bonniese7
Posts: 14

Dr. West,

Thank you! I appreciate your responses and I know that I need to check with our local oncologist for final determination of dosing and such. I would like to ask though, what is your opinion on stopping Xalkori for two to three weeks while my husband takes a vacation. We are just trying to give him a little more of an energy boost while he gets away from all the doctor's appointments and blood draws, etc. I'm just seeking an opinion and I know that your response is not medical advice.

Truly, thank you,

Bonnie

Reply # - July 15, 2012, 04:48 AM

Dr West
Posts: 4735

I don't hesitate to offer a break for people with good control. There is some risk of a "flare" of rapid progression -- sometimes the cancer can rebound and progress readily after a few weeks off of it if a significant amount of tumor burden is has been effectively suppressed by the targeted therapy and suddenly isn't. But if my patient needs a break, for whatever reason, I just have them be ready to restart it in the event that they develop rapid worsening of cancer-related symptoms. Otherwise, they can enjoy a break from the side effects and will often do just fine.

-Dr. West

Reply # - July 15, 2012, 01:54 PM

bonniese7
Posts: 14

Thank you! I appreciate your opinion and will have my husband discuss this with his oncologist as well. You are very kind to have replied to all my questions.

Bonnie

Reply # - August 4, 2012, 03:28 PM

bonniese7
Posts: 14

Hi Dr. West,

I have another question about Xalkori. My husband weighs 230lbs and is taking 250mg two x daily. The diarrhea continues but if he chooses one day a week not to take his morning dose he can usually avoid this side effect. What would be your opinion of him taking just 250mg daily as opposed to the 500mg that he is doing now? We did ask our oncologist about this and he doesn't have too strong of a recommendation either way other than to say, "stay with what is working". Also, what would usually be the next drug thearpy if the Xalkori is found to not be working after awhile?

Thank you for sharing your opinion.

Bonnie

Reply # - August 4, 2012, 08:37 PM

Dr West
Posts: 4735

Your question about changing the dose is a fair one but is completely in the realm of speculation, without any evidence to support an answer, so I don't think I can offer one. We generally prefer to have patients be on the highest dose (working down as needed from the standard starting dose) that they can tolerate well enough on a sustained basis.

As for what to do after, that is the situation of "acquired resistance". If you search for that term, you'll find several threads and post that discuss this issue, for which there is no clear answer right now -- it simply hasn't been studied. However, most experts and general oncologists alike favor starting standard chemo, as you would for someone who doesn't have an EGFR mutation or ALK rearrangement, with the main unanswered question being whether to continue the targeted agent or not. Also, in people who have very slow, asymptomatic progression, it's quite reasonable to just continue on the targeted therapy and monitor for change, or to treat with focal radiation or perhaps surgery if someone has just one or a very few areas of progression against a background of still very good control.

This question comes up often enough that I'll probably write an answer, with links to some of the key points, as an "FAQ" post tomorrow, so you might want to look for that appearing on the home page tomorrow.

-Dr. West

Reply # - August 5, 2012, 06:51 PM

bonniese7
Posts: 14

I believe that I understand your answer and I know that there are too many unknowns but I just wanted to clarify what treatments my husband has already received to see if that changes the speculative answer.
He was diagnosed Jan. 6th 2010 and started radiation therapy on Jan. 25th with potentiating (sp? term?) chemotherapy and stopped radiation therapy on March 17th and in April began full dose chemo. He did four rounds @ two week intervals and then went on maintenance chemo of Navalbine (sp?) Once he tested for the ALK gene he began the Xalkori mid November of last year and now here we are. Does that mean anything to you as far as a different opinion that you can offer for continued and future maintenance as we go forward from here? As a side note and by God's grace, his CT scans have shown no progressin and a slight decrease in tumor size.

As always, thank you for your kindness.

Bonnie

Reply # - August 5, 2012, 08:37 PM

JimC
Posts: 2753

Hi Bonnie,

As Dr. West mentioned, Xalkori is so new that the issue of what to do after a patient acquires resistance has not been studied, so at the moment the choice would be among the various standard chemo options. Without knowing what chemo he has received so far, all that can be said is that there are three drugs specifically approved by the FDA for second-line treatment - Alimta (pemetrexed), Tarceva (erlotinib) and Taxotere (docetaxel). Each of them has been shown to be effective in that setting. I would also think that your oncologist would consider returning to Navelbine if he switched from it to Xalkori without having progressed on Navelbine; it would still seem to be a potentially effective option.

JimC
Forum moderator

Reply # - August 6, 2012, 03:35 PM

sfnevents
Posts: 4

hi,
i am taking a reduced dose of 400mg 2x200 daily because of low heart beat and dizziness. I am basically on maintenance mode except i keep growing brain mets. I believe diarrhea is one of the side effects. I experience it in spats. xalkori i feel messes with the GI track. I would look into a good probiotic. I think it could help with the diarrhea. I would not suggest going off of it for a vacation. Has he add all of his levels check to see if anything is low to help him get more energy. Has he had his b's, d and testestorone checked. you can look at my nutrition log on inspire. my name on inspire is hamptons boy. I do not know how to add my signature page to this email. I am stage 4 NSLC going on three years. Living a very norma,the new normal life. Best, Sean

Reply # - August 6, 2012, 07:18 PM

bonniese7
Posts: 14

Thank you Jim and Sean,

You don't know how much your feedback means to me. I will talk this over with my husband. He is more than willing to stay the course despite the side effects. I just wanted him to have a good vacation and was hoping that someone else had an opinion about reducing his dosage for the two weeks that we are going away. I am so appreciative for this forum and the doctors and patients and care givers that weigh in. It's amazing. God bless you both for giving me some great information.

Sean, how long have you been on Xalkori? I see that a low heart beat and dizziness were your symptoms. I don't mean to be so personal but did you have severe diarrhea? He did have his Testestorone tested and it had tanked so he has been doing Androgel for the best three months and his levels have tripled. His B12 (if that's what you mean) and D levels have been in the normal range. It's just the darn intestinal stuff. Congratulations on three years. Did you have surgery? My husband has not. I will keep you in my thoughts.

Bonnie

Reply # - August 12, 2012, 10:43 AM

zxfyl
Posts: 1

First post on this site. As you can see on my profile, I am on Xalkori. Don't think I would be here today if not for it. Just prior to taking it , I could barely stand for more than a few minutes at a time and my energy level was probably in the 10% range. My system has reacted to the drug very well. Energy level at 90% and on no pain meds. Visual side effects at 250 mg , but no longer with the 200 mg. Within 6 weeks my rt lung tumor decreased from 7 cm to about 4.

We had to decrease my dosage however from the initial 250 mg twice a day to 200 once a day. My ALT spiked to 855 at one point. I am now at about the 195 range. Can another patient give me some feedback as to what levels their ALTs are runnning at and at what dosage levels ? Bonnie ?

Any "safety zone" levels from a doctor's input would be very much welcome as well.

Thanks for your time and attention, Jon

Reply # - August 12, 2012, 11:05 AM

certain spring
Posts: 762

Just wanted to add a link to a post Dr West wrote about the testosterone effect:
http://cancergrace.org/lung/2012/04/09/low-testosterone-with-xalkori-cr…
Re signatures (Sean and Jon), you need to click on your avatar to get your Profile. What often happens is that people put their info in the wrong box - one of the boxes (I think "biographical information") does not show up on the forums. Annoying but true:
http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature
I wonder if one of the moderators would be able to get a comment from an ALK/crizotinib specialist on the dosage/safety/tolerability questions.

Reply # - August 12, 2012, 02:34 PM

Dr West
Posts: 4735

The dosing recommendations are that if the "transaminases", which are listed as ALT and AST, are more than 5x the "upper limit of normal" (ULN) at that particular lab, and the bilirubin level is less than 1.5x ULN, then the dose should be reduced to 200 mg by mouth twice daily once the AST and ALT are less than 2.5x ULN. If the ALT and/or AST numbers are elevated and the bilirubin is higher than 1.5x ULN, the guidelines say to discontinue the drug.

Problematic elevations of liver function tests appear to occur in about 4-7% of patients in different trials, so uncommon but not rare.

I'm glad you've had such a dramatic improvement with XALKORI (crizotinib).

-Dr. West

Reply # - August 12, 2012, 06:23 PM

sfnevents
Posts: 4

hi bonnie
my memory gets the worst of me and I do not belabor that i had cancer. i always talk in the past tense. that is my new mantra. i think i have been on xalkori since last june. i started in the trials and than had it presribed to me. i did not want to have has many scans that were required in the trial. i had diatrrea in the beginning and it went away. I than went off of it for like 5 days for gamma knife and than the diarrea came back for a few days. i will never go off of it again like that. i had a 1/3 of my lung removed, 11/2 years of chemo and 37 radiations. i than developed brain mets and had one tumor surgically removed and than three gamma knifed. since than i grew two new tumors in brain 4 months apart and had them gamma knifed also. all tumors presently in brain are gone. xalkori really screws up the gi track. have you tried reducing dairy in take. i just put it in my coffee and that is it. i drink almond and rice milk. i would buy an expensive probiatic to help get your gut flora back in shape. i live a normal life. got rid of all the stress in my life and have never been happier. i stopped working a year as of 8/15 and have never looked back. i live everyday to the fullest. be well have fun and take in the sun. love, sean

I am at 200x2 and all blood levels are almost w/i normal range. for me it was heartbeat and dizziness not liver, kidneys etc...

Reply # - August 13, 2012, 01:16 AM

certain spring
Posts: 762

Sean, you are a wonder. I am very impressed by your attitude. May the sun keep shining for you.

Reply # - September 2, 2012, 02:49 PM

bonniese7
Posts: 14

Hi

I can't believe that it has been almost a month since my last posting. Jon, to answer your question about ALT levels, my husband's have been elevated at times with the highest being 161 in January but have steadily come down since then. His labs from a month ago show his ALT at 79 and his AST at 52 and his bilirubin is within normal limits. I'm thankful for this but I'm not sure exactly what it means. The labs are coming back somewhat okay, it's just that he has no energy and continues to experince severe diarrhea on a daily basis. His oncologist has never showed any concerns with the lab results except once when he said that his kidneys were, "a mess". My husband starting downing about 3 liters of water a day and the next labs were okay for his kidney function. His dosage is 250mg of Xalkori twice a day. We did call Pfizer to ask about the diarrhea and one of their doctors said that about 45% of patients experience this. My husband's attitude is that as long as the medicines keeps the cancer at bay, he will put up with the side effects. We will be having a new scan in October and I'm praying for a miracle.
Sean, thank you for sharing what treatments that you have received and I'm so glad that you are doing well. My husband has not had surgery. We met with a thoracic surgeon twice up at U.C.S.F. and basically he told us that if he preformed surgery my husband would probably never make it out of the hospital alive. I'm sorry to say that he made us feel as though we were wasting his time. Thank you for the suggestion of buying a good probiotic and then see if that helps his symptoms. I agree with you, we need to live each day to the fullest. My husband's attitude is always positive and by God's grace I'm hoping to get him to the islands in two weeks.

Take care,
Bonnie

Reply # - September 3, 2012, 09:21 AM

catdander
Posts:

Bonnie, I hope you get to the islands with your husband it sounds lovely. I've got plans for mid Sept too and hope it will be a real treat for my husband and me.

I'm sorry the surgeon made you feel so bad. Not everyone has a good "bedside manner". At least you don't have to see him anymore.

Good luck to your husband and thanks so much for the update,
Janine

Reply # - September 3, 2012, 06:08 PM

bonniese7
Posts: 14

Thank you Janine,

I hope that you and your husband have a great vacation as well. Congratulations on two NED scans. You both must be overjoyed.

Best to you both
Bonnie

Reply # - December 19, 2012, 04:10 PM

aunttootsie001
Posts: 324

Dr. West, I was expecting to only be on the Xalkori for a short time also! My ONC didn't say that I just thought that because she had only thought we'd be doing 3 or 4 TX of Carbo/Alitma/Avastin before I tested positive for ALK. but have resigned myself to the fact that if nessasary i will remain on it as long as possible. As long as the side affects don't get any worse than they are now! I bounce back and fourth between diarreha and constipation, which by the way with IBS or whatever I suffer from I have had this problem already. Try doing whatever i have to to keep it in between. The only eye problem is Photophobia. I would be happier if the Wheezing were to go away. I am going to see my Lung Dr. soon and hopefully we may drain and do the Talc proceedure. I also suffer from fatigue so all in all I'm pretty good! Still on the 250mg. Am I being resonable to think the Talc proceedure will help with my Wheezing? It interupts my sleep!

Reply # - December 19, 2012, 09:05 PM

Dr West
Posts: 4735

I don't know that it will help with wheezing as much as shortness of breath from the fluid compressing the underlying lung, but I suppose it could. It's definitely reasonable to do a pleurodesis if the fluid is reaccumulating frequently.

And yes, we definitely do plan to have people continue on XALKORI on a prolonged basis, as long as they aren't experiencing any prohibitive side effects or clinically significant disease progression.

-Dr. West

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