ALK or ROS1 NSCLC Patient Group - 1244753

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

I used Imodium to control the intial diarrhea but 1 pill per dose was too much and clogged things up. I also think dairy products at the time were my main trigger, but maybe anything 'risky' my intestines hadn't seen in a few days. Plain foods and no dairy brought it under control for me, but other people are different. Was able to very gradually reintroduce just about anything, though I get a little surprise randomly.

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

Just a note to those ALK positive patients connecting through GRACE that my center in Seattle has just opened up the trial with the Chugai agent. Obviously, we want people to benefit for as long as possible on XALKORI, but I'm happy to offer another ALK-directed option to patients who are developing acquired resistance to XALKORI after responding previously.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
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

That is very good news, Dr. West. Is that a 1st TKI line trial or for 2nd TKI line after Xalkori fails? (I was under the impression that the very good early results data we've seen might have been just as 1st TKI line.) In any case, the early results sounded pretty promising.

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

My oncologist and I actually talked a little about what we called second generation ALK drugs, and also about re-challenging with Xalkori after a period of time off of it. I'm excited about these developments, and really glad your center is involved. Kind of gives us a front row seat! Thank you Dr. West.

Debra

certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

May I just say, as a fellow-mutant, that it is so nice to see what seems like a spike in the number of people who are getting Xalkori. Hurrah for Dr Camidge, for Dr Shaw, and for everyone who has made this possible.

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

Maybe the most important hero of the Xalkori story might be the biochemical engineer designer of the molecule. I think it was Jingrong Jean Cui's team working at a company that was acquired by Pfizer. There might be better understanding now that makes it easier, but she had at least one "ah-ha" moment as she and her team was trying to figure out how to make a drug molecule that what would fit the molecular targets they were trying to design it for.
http://www.tbiweb.org/tbi/newsevents.php?news_id=93

Even then, it took other heroes to bring the drug to fruition for thousands of patients. In particular the MGH designer of the FISH test for ALK that was used to screen patients (John Iafrate) to find enough of them with ALK so that oncologists like Shaw and Camidge could pursue the clinical research.

The story of crizotinib is a miracle for those who benefit from it, starting in 2007 when it was first discovered that ALK occurs in lung cancer and might be a therapeutic target there, to FDA approval of the drug in 2011 -- a miracle in 4 years (although really 7 years if you start when the molecule was first created by Jean Cui along with a set of others in, I think, 2004).

I am sure grateful. The people who pursue breakthrough research like this are our heros . . . our superstars. And when I had the opportunity to visit the ASCO conference and see a lot of researchers show their work it was like going to a rock concert with a line up of hundreds of stars.

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

Beautifully put Craig. What a nice historical account. Thank you. It must be a very rewarding work for these folks. And we are the luck beneficiaries. Nice to know who to prayerfully thank.

Debra

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Just a quick update... much better today, day 2! Barely any stomach discomfort and no more explosive surprises! Yay! I'm taking it slowly and eating only bland foods for now, and also making sure I don't get dehydrated. Other than the very minor symptoms above, I can't even tell I'm on a new med.

I didn't slide off the slanted bed either, but I did wake up every time I turned over. Not used to the angle, I guess, but I'm not miserable with heartburn so... It's all good!

Kickin' cancer's butt!!!!!
Debra

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

FYI, a trick my Dad used for many years was to go to get a pair of 8" cube (or 6"?) blocks of wood and have a recessed hole cut in the center of the top about 1/2" deep to make it secure, then put them under the feet at the head of the bed. That provided him just enough elevation for his needs (related to a hiatal hernia) and didn't bother him or my mom much.

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. The set I bought comes with 4 risers, and I stacked them so each leg is sitting on 2 risers. As soon as I can catch one of my busy family members I'm going to remove one, which will lower it at least a couple of inches.

Your Dad sounds very handy, and smart. These risers also have a recessed center, so the bed leg can't slip. I got them at Bed, Bath and Beyond for about $10, if anyone is interested. Durable plastic, black. They work great.

Debra

katenz
Reply To: ALK or ROS1 NSCLC Patient Group

Hi all, just a quick question for more xperienced xalkori users than I....what do you do if you vomit after taking your pill? I'm 10 days into taking xalkori and felt fine until this morning when a surprise vom crept up on me about 1.15 hrs after taking my morning dose. Odd as I didn't even have any nausea and had done pretty much the same as usual. Anyway, am worried that the pill hadn't been in my system long enough to be absorbed? Will call the hosp but it's a Sunday and I'm their first and only xalkori user so not sure they will know... Thanks, kate

certain spring
Reply To: ALK or ROS1 NSCLC Patient Group

Sorry to hear about this.
I do remember it coming up before - ie someone being sick after taking their pill. This is the thread - as you'll see Dr West suggests a rule of thumb (downpage at March 28 2012):
http://cancergrace.org/lung/topic/nodule-appeared-two-months-after-surge...
I do remember others on this thread advising not to take crizotinib on an empty stomach.
If this were Tarceva I personally would write it off and take it the next day.
I couldn't find the right thread until I realised that you have to search under "crizotinib" as well as "Xalkori". All best.

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

That looks like good info from Certain Spring. To be more specific within that discussion, here's where Dr. West describes a 1 hour rule:
http://cancergrace.org/lung/topic/nodule-appeared-two-months-after-surge...

So yes, it might be good to contact your oncologist to ask his/her preference. If they don't know the answer yet, they will probably appreciate being given a reason to check the details and learn the answer to their own satisfaction.

In the larger context, the half-life or Xalkori (crizotninb) is about 2 days, so if you lost most of single dose you'd still have a fair amount left in your body until your next dose, but I assume it is better to keep it up.

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)

katenz
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks CS AND Craig, for the link. As it was just over an hour, I decided not to take another one and am seeing my oncologist tomorrow anyway so will talk to her then. Thinking about it, I did eat but only a few canned peaches just after I took e dose, as I woke up late. I would normally have a decent breakfast about half an hour before. That'll teach me for staying up late to watch the end of a movie, then having a sleep in!

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Hi Kate, I'm sorry to hear you are having that much difficulty, and I totally get it. I

actually broke down and took a zofran yesterday for nausea. I think the more food the better. Also I have my own personal laser light show going on at night. My granddaughter kept giggling because I would have a sudden flash of light or a trail and it would startle me and I would jump or say "whoa!" She thought it was hysterical.

She always makes me smile and laugh, so I'm so glad she is also old enough to be with me after medical procedures, or on the first day of a chemo, to make sure I'm okay. I end up waiting on her more than she waits on me, but she's my baby.

The only other symptom I have to report is that the diarrhea is gone and nothing is happening. I mean nothing. I take 2 stool softeners a day, and last night I had a cup of "Smooth Move" Tea (mostly senna) but so far, nothing. Thanks Craig for the warning about immodium. I didn't take any and I'm glad I listened to your sage advice. Now I just have to figure out how to get things moving again... pun intended.

Kate, hope you get the nausea/vomiting worked out. I'm sure they can give you something to relieve that.
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

I find Metamucil every night helps oth ways! It's a bottle bouncing back n fourth from Diarreha and constipation. Almost rather the first rather than the later! The Photophobia is weird at first but once I knew it is a normal side affect I just ignore it! But I'm really struggling with depression! Very emotional most Days! So very Sad about Laya's Mom! I don't think I even knew her Name and it upset me to no end!

Dr West
Reply To: ALK or ROS1 NSCLC Patient Group

I have recommended that some of my patients on XALKORI who have been more nausea-prone take prophylactic anti-nausea medicine 30-60 minutes before taking XALKORI. It's helped at least some folks. Another who has had nausea has found that yogurt with or shortly before the XALKORI seemed to help.

And just to clarify for those following along on the question of whether to re-take a medicine if someone has vomited shortly after it, the general rule I noted on the prior thread was that we often recommend re-taking a medicine if someone vomited less than an hour after taking it, but not if it had been an hour or longer between taking the medicine and vomiting.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

The yogurt works for me on my morning meds and don't nessasarily need it for the evening one. I didn't take it one morning and was Nauseious had to take a pill which makes me sleepy!

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

double trouble,

After gumming up the works with a little too much Imodium, I got things moving again after a few days by buying an 18oz bucket tubs of prunes, or dried plums as they like to market them now. I think I went through about half of it, and after a while things were back to normal. I also bought OTC remedies at the same time but didn't need to resort to them.

P.S. -- The yogurt idea wouldn't have worked for me. I developed lactose intolerance in the months prior to starting Xalkori and the yogurt they let me have just before my 1st dose ran right through me 2 hours later. I didn't have trouble with non-dairy foods like cereal, soy milk, or a bagel. I seem to have regained some lactose tolerance, but it took several months.

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

For the record, suger seems to trigger my Diarreha and over the weekend even thou I'm temporarily off Xalkori I had Sparkling Apple Juice and I guess 3 glasses was a bit much. After that everything I ate went straight thru me! Debra you will have to figure out what works best for You. When I was leaving the house I would do Graham Crackers and yogurt for my breakfast and I was fine. If I'm going to be home I would try different things. Oatmeal with brown sugar a no go probably because of the sugar. Next time I'll try substitute sugar. Eggs easy over with toast and Yogurt! So I tend to go with what works best. If I'm going to do citrus I do it early in the day to avoid acid reflux at bed time. Which brings me to this question, do you find yourself in the middle of the bed by morning? My bed is elevated too and I slide down by morning. Haven't slide off Yet! I wouldn't recommend Satin Sheets! LOL!

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

aunttootsie,

Are you sure it's sugar and not something else in apple juice? Was it real apple juice or was some kind of sweetener added (table sugar/sucrose vs. natural or added fructose, or artificial sweetener like xylitol, ace-K, saccharine, etc.)

The molasses in brown sugar could also make it hard to know if the issue is sugar or the molasses. (The molasses in brown sugar always gave me gas, regular sugar didn't.)

Interesting about the sliding down the bed. Does that mean that foam wedge approach is better than angling the entire bed, as uncomfortable as that might be in some positions or for some things?

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

Yes, by morning I find I have ended up curled up in a ball in the very center. I think I just put mine up a little too high.

Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Craig, didn't think about the Sugar in the Sparkling apple Juice but pretty sure it was the culprit! I guess I should try reg. sugar on my oatmeal to see how that works, I usually use Sugar Substitutes. That was 5 days out from stopping Xalkori so could have been my usual stomach issue. Had blood work yesterday and see ONC on Monday so hopefully be back on by Weds or Thursday. Just depends if I have to Scrambble another CoPay Company. The one I have had given me a letter with approval numbers on it and it also said I was allowed $7,500. For 2012/2013. So I have used $5,500 so far if that is the case? So I won't know until she Faxes in my New dosage? What do they usually have you do with leftover Prescription? This last Bottle could be full amount. I dumped from first bottle into this one. Had about 7 pill left. Hate wasting such an expensive medication.
As far as the bed situation, it is funny Craig, you go to sleep up on your pillows and wakeup just barely with your head on them. I told my sister I needed PJ's with Velcro or skid resistant strips on them!

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

Don't forget the ropes to keep your Velcro PJ's from sliding up over your head. ;-)

Re: unused Rx, I would just shift the schedule for receiving the next order.

You can cannot legally sell or give away a prescription Rx and even putting them down the toilet or in the garbage might not be environmentally friendly. But I think there might be organizations that can take them. Not sure who or where. Your oncologist's office or one of the oncologists her on CancerGRACE.org might know.

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

I agree that could be an issue with the Velcro PJ's! Too Funny!
I will see she may put me back on those meds won't know until Monday! I know our Giant Eagle Pharmacy has a program for excepting meds you don't use anymore so if I don't go back on them I will check with ONC first and then My pharmacy! Thanks Craig!

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Well I heard directly from my Dr. Hemrock from the Hope Cancer Center here in Warren, Ohio. Can't get better than that! She said my Liver Enzymes were better but not quit Bach to normal so I see her on Monday she will retest and she talked about using The 250 ml. Up by starting back at 250ml once a day and if my liver is tolerating it bump it up to 1 pill one Day 2 pills the next alternating that way and see how that works. At least maybe we can use these up. I'm pleased and since the Wheezing has stopped I'm thinking it is finally doing what it is intended to do! Yay! I imagine she will order my next CT or Pet Scan along with MRI or at least a scan of my brain. I'm due in a week or two. Will be relieved to have this one Done.

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Dr. West or anyone know if side affects are lessened if dosage is lower. Just curious!

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

AuntTootsie,

I can't speak for all side effects, but I was specifically told that the standard dose level was picked because going higher the side effects were noticeably worse, including fatigue in particular. I periodically hear of people on forums like this moving to a lower dose to reduce risky side effects that can't be controlled other ways (e.g., using Imodium, anti-nausea meds, etc.), but I don't recall which specific things were issues.

You might also ask if there's any data on duration vs. lower dose. (I have *not* seen any data on that, but 2nd hand I hear patients reassured by their oncologist when it was necessary to reduce.)

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

Typically yes, the side effects are less common and less severe in patients who have a dose reduction of their crizotinib, as is the case for most systemic anti-cancer therapies.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
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 fellow ALKies. Well, I learned yesterday that I should never, never take my Xalkori on an empty stomach. I meant to eat something, I just hadn't gotten around to it, and about an hour and a half later I was throwing up. Mind you, I am not a puker... I never have been, so for me it is a traumatic event! Just awful. And since I stopped taking omeprazole, it is like pure volcanic lava. UGH!I have had some nausea and reflux, but I'm not sure I can blame all of that on the Xalkori. I've also had the flu (I guess).

A couple of side effects that I do think are the result of taking Xalkori are lower extremity edema, and nothing tastes right. Even the tiniest amount of sugar or salt and a dish is ruined for me. I've been giving my son a lot of food because I will buy something then find it is too sweet or too salty tasting for me to eat.Also the visual changes, but that has decreased, and only happens in low light. Oh, and it's either constipation or diarrhea so far. No in between. Yuk.

So far this has been much harder for me to tolerate than Cisplatin was, but I was on single agent and a reduced dose, so I don't want anyone drawing conclusions from that with respect to their own experiences. If I were to continue to feel as badly as I have been for the past couple of weeks, I'm not sure Xalkori would be worth it to me. But again, pretty sure I've had the flu too.

Wednesday I will see my onc. and go over my 4 week labs. I guess we'll schedule a scan at that time. I'll update after I see him.

Much love,
Debra

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

Sorry to hear it is rough on you, double-t.

Yes, *always* eat something right before my dose and it's worked like a charm for me.

I rarely have diarrhea issues now. When I started Xalkori I was extremely lactose intolerant, but I seem to have fully adjusted after 15 months so I seem able to handle anything now. But since restaurant food (and most food I didn't prepare myself) was often made with butter or other dairy, the only safe thing for me was to eat very plain food. Lactaid pills seemed to help a bit, but mainly I just used Imodium when a meal gave me a problem.

Sugar was my taste problem, too, but over the months that's no longer an issue. I never noticed a problem with salt, but I can certainly understand what you're experiencing.

Good luck with your doctor appointment. And I hope the next CT scan shows it's all been worth 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)

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

So sorry Debra that your having issues! But like Craig said after I was on it a month I worry more about the Constipation than the other. Once your flu subsides it should calm down. I find if I take the Metamucill on a every other basis I felt fine! Been back on my meds for a few days now and on the one pill a day until next week after labs. Hoping I am tolerating it well so she can bump me up. At least this will give us a chance to determine what dose will work for me? I will be anxious to hear your test results too! I go on the 23 for my Scan. I'm anticipating good results! My mental condition is much better since it finally made the Wheeze go away. Although it was starting to come back while I was off meds that one week. Just wondering if that will be common. Will the Fluid ever dry up and go away? Or am I stuck with it?

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

AuntT,

I don't know if it's possible to know if the fluid will stop. If the fluid is produced by the cancer, and Xalkori inhibits the cancer's behavior well, there could be less fluid (and hopefully less cancer). If the fluid is produced by the cancer invading the lymphatic system and causing leakage of lymph fluid, I don't know if the lymphatic system would repair itself well or how quickly. Before treatment, my local doctor suspected the latter, but since almost all my fluid production stopped by the 2nd day of the drug, maybe it was mostly generated by the mucinous BAC (mucinous adenocarcinoma). I still don't know for sure in my case. In your case, your own guess might be as good as mine (and your doctor's guess would be better).

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 agree with Craig's assessment. It is very likely that the fluid, called a pleural effusion, is directly from the cancer, so if the treatment works well against the cancer, it may improve quite a bit. Otherwise, the main ways that the fluid can be managed specifically include repeated thoracentesis, a pleurodesis, or placement of a PleuRx catheter. These are discussed in a post on the subject:

http://cancergrace.org/lung/2007/03/18/mpe-managment-options/

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

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

Good luck. . .all of you. . .and feel better My Debra!

xoxo,
Laya

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Providing the Xalkori works and eliminates the fluid, would it be expected to return if I went off of it? I was only on it for a month and finally the wheezing stopped but with in the week 8 or 9 days it was returning/ Fortunatley the amount of fluid isn't to great. it took from August 2011 to October of 2012 to o0nly accumilate 40cc.

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

AuntT.,

I haven't gone off-drug and I haven't read any research about that, so I can only make a guess: In my own case I assume that fluid production rate is correlated with the volume of cancer, and I assume that Xalkori's shrinkage of my cancer was like turning back the clock, so it would take time for it to grow back to the amount of cancer . . . and fluid . . . I had before. I assume my original cancer, when I go off-drug, will resume its original pace or growth. I cannot guess what the pace of any drug-resistant cancer might be with or without Xalkori, but if it is a faster-growing variety than before, I'd assume it (and the fluid) might grow back faster.

FYI, my fluid was in my lung, not in the pleural space outside the lung.

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

How long after initiation of therapy with Xalkori is the first scan usually done?
Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

My ONC said 2 months I go for mine next week! Looking for great news! Wheezing is better! Which makes me very Happy! Labs today to see where we go from here after back on meds! Wish me luck!

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Oh good! Good luck. I hope your liver has recovered. I'll know my lab results on Wednesday.
Debra

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

FWIW, in my Xalkori clinical trial I think my 1st scan was after 7 weeks, and then I had them every 8 weeks until more than a year had passed (with blood/urine tests every 4 weeks).

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. We originally planned on a scan after 3 rounds (at 3 months) but since I had new lesions that popped up, grew to over a centimeter, then cavitated, which is very unlike the behavior of my previous lesions, I think I would like to ask my onc. to move that up. My bronchial lavage results were all negative, and now my pulmonary doc is sending me for an infectious disease consult to discuss possible non-malignant causes of these new lesions that might be viral, I guess. But I think before infectious disease does any testing a new scan would be helpful. Any comments from Dr. West would be appreciated here.

Debra

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

FYI, I have heard of patients on the forums (or from their caregivers) who have had no significant response (but waited 2 months to find out) or had 2-3 months before a subset of the cancer overran the cancer that dramatically shrank back (in a person with a very fast growing cancer), although the median is more like 9-10 months in the studies I think. Based on those, I can imagine personally (for myself) wanting to know if there is a measurable response early on, and I can imagine wanting to catch any sign of early progression a little while after that, and I'd want an extra careful look at around 9-10months.

But too much CT scan radiation is not your friend, so your oncologist has to practice his art and judgment of picking the best times to scan for your particular case (e.g., considering the pace of *your* cancer before treatment and your symptoms, etc.)

At his point my scans are only every 16 weeks (4 months) which has me a little nervous (but it's good to get half as much new-cancer-risk radiation). This seems to be working out so far, and I think my fluid-in-lung symptom will give me an early warning of whether I'd need to move up the schedule to check it out.

FYI, I also asked, and my doctors agreed, to monitor CEA as another early warning indicator of needing to move up the scan date, even though it's not reliable for lung cancer (I heard it said that spikes in CEA can be caused by unrelated things) so most oncologists won't monitor CEA regularly. My first CEA test wasn't until after a year (and it was only a couple of points above normal, which is either good or shows the test isn't useful for my cancer.

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)

double trouble
Reply To: ALK or ROS1 NSCLC Patient Group

Thanks, Craig. I'm really more interested in identifying the new lesions than measuring a response to Xalkori. I would go for a biopsy instead, but that would probably have to be CT guided.

Debra

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Sorry I'm not sure what CEA is. Sorry I'm not as up on these things!

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

_________________________________
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

As I've written in several places around the GRACE site, I think using a serum tumor marker like CEA is reasonable if it's employed to help adjust the timing of scans but not used as proof, in and of itself, of the cancer progressing or responding. Serum tumor markers in lung cancer just aren't that reliable.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
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 Alkies! My 4 week labs are in. ALT and AST are up, albumin is down. WBC, ANC are low, RBC and Hgb are a little low. Also, calcium and protein are below normal. I blame those last two on my lousy appetite and my aversion to meat. My platelets are in the normal range for the first time since 2005 (acute phase reactant?). I don't know if the numbers will be dose-limiting or not. I see my onc tomorrow morning. Also, my refill of Xalkori is stuck in transit, planes can't take off. I run out in two days. Otherwise all is well. Side effects are becoming more tolerable day by day.

Happy Trails,
Debra

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

doubleT,

Good luck with your onc appointment and on managing all the levels of things with his/her help.

I sure hope the planes get unstuck soon. Maybe your onc has some other way to cover you for a transit delay of a day or two???

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)

aunttootsie001
Reply To: ALK or ROS1 NSCLC Patient Group

Do you think your being sick with the Flu might have been a consideration?

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