I have stage 4 nsclc being treated with Xalkori for 6 weeks. Had pleural effusion that was drained and talc procedure also. My question is how do we determine if Xalkori is working where except for pleural thickening and effusion, there are no specifice tumors found. My doctor advises that if the effusion is itself reduced, this is a good indication that Xalkori is working, but what if the effusion is not improved,but is about the same?
Tue, 01/08/2013 - 10:36
Hello tjames and welcome to Grace. When speaking of stage 4 lung cancer "the same" is also known as stable disease. It's a welcome assessment as opposed to progression. People can stay stable on xalkori for quite some time. OK, "quite some time" isn't a medical term but I'm not a medical professional.
I'll contact a doctor for input on your question. You should hear back within a day.
The very best of luck and stability for a very very long time,
Tue, 01/08/2013 - 14:15
My question would be if you've had the talc procedure, how will they measure by effusion since the fluid was drained and the talc has hopefully taken care of anymore fluid build-up?
Take care, Judy
Tue, 01/08/2013 - 14:23
My understanding is that due to the contour of the lung and the chest cavity, during the talc procedure they are not able to get the entire lung to adhere to the chest wall, leaving an area in the lower part of the chest where fluid can still accumulate although in lesser amount. It is that remaining effusion that they will look at to see how it has changed, if at all, since I have been on Xalkori.
Tue, 01/08/2013 - 15:43
Hi. It sounds like your cancer caused a pleural effusion, which is a buildup of fluid between the lung and chest wall. It sounds like your effusion was drained and then pleurodesed. Pleurodesis with talc causes a scar reaction which allows the lung and chest wall to seal together, preventing repeated accumulation of fluid. However, it is true that about 20-30% of the time, the procedure isn't completely successful in sealing this space, usually because the lung cannot completely re-inflate to the chest wall from cancer.
Regarding measuring response to Xalkori. Chances are that there is a nearby area of tumor on your last CT scan, in addition to the a pleural effusion. It is probable that there is another nodule or suspected area of cancer in the same lung which can be followed over time. Nonetheless, if there is no truly other disease at all seen on any scan, that is ok too. It is still reasonable to begin and continue treatment with Xalkori. More than 70 - 80% of ALK patients started on Xalkori will have a tumor response on their scans. So, we can 'rest assured' that the drug is likely killing microscopic tumor cells, even if there is nothing large enough to see on CT scan.
The pleural effusion by itself is not the most sensitive marker of cancer response. It is challenging to follow small changes in effusion size over time. Certainly if it dries up for months, that is a good sign. As your oncologist suggested, we cannot rely on the effusion as a marker unless there is significant increase or decrease in its size. Hope this helps.
Wed, 01/09/2013 - 06:45
Thank you Dr. Creelan. I appreciate your input. I will be having a new chest x-ray and will be meeting with my oncologist tomorrow and will keep this info in mind. Thanks again.
Tue, 01/22/2013 - 17:59
Tjames, thank you for asking that question. and Thank You Dr. For the response. I go for my First CT since starting Xalkori and in one sence I'm excited to see how much of the fluid has disapated! But also nervous for the rest of my CT. Prior to them finding the Pleural effusion all of my CT's, MRI's and Pet Scans were coming back NED. I am now not on your usual dosage because after a month on Xalkori my liver enzymes were slightly elevated so my ONC put me on a short break. A little over a week. So when she started me back on it she was working with me because I had just received my new monthly delivery of 250 x 2 a day, and being I had to get Copay assistance she was helping me use it up. Plus liver enzymes weren't quite back to normal so I have been taking 1- 250mg a day and after my last lab work I kind of expected her to call she was suppose to put me on 1 pill one On one Day then 2 on the next Day. And do this every other Day but I didn't here from her so I've stayed on one Day. I'm nervous my Liver isn't going to cooperate so I can stay on the Xalkori for an extended time. I see my Pumologist this Friday and I want to talk talc procedure for the future. I've only had it drained once and that's when they tested and it came back Malignant Pleural Effusion. There actually wasn't a lot of fluid removed. I wasn't having trouble breathing just a nasty Wheeze when I laid flat and on my left side. It had subsided after being on the meds for a month and even thou I'm still taking some meds it is slowly creeping back. It kept me from sleeping very well. Anyway that's my situation as of now! Will check back to see how you did at Dr's. Keep us posted!
Tue, 01/22/2013 - 18:03
Hears a question, every time I go for a CT I have to take Benedryl 24 hrs prior 12 hrs prior and I hr. prior. I also usually have to take it after because I break out in a rash head to toe. This is the first time while taking Xalkori. Is their anything I should watch out for, side affect wise?
Tue, 01/22/2013 - 18:36
Good Luck with your scan!
Tue, 01/22/2013 - 20:15
Lorrie, I'll contact our pharmacologist and ask her to respond to your question about benedryl. That's a nasty reaction you must get from the CT contrast?
Tue, 01/22/2013 - 20:36
Thanks Janine! I'm pretty see it isn't totally from the dye! But afraid not to do the pre-meds. Even thou it doesn't start until later in the day and because it's not until 2:30. It will not start until next Day.
Tue, 01/22/2013 - 22:31
There isn't anything special for premedication with regard to the XALKORI. And yes, that sounds like a protocol they would use for a reaction to the contrast dye.
Wed, 01/23/2013 - 06:31
Though crizotinib does interact with a lot, Benadryl should not be a problem. Always a good question to ask though. As I pharmacist, it warms my heart when patients follow the "ask your health care team before starting any new medications"!
Fri, 02/01/2013 - 19:54
I forgot to mention I also take Predinzone. And I actually forgot to take the Benydryl. And I actually didn't have any Rash this time! CT was NED but there was more fluid build up this time. But I was off Xalkori for almost 2weeks and then only on 1 - 250mg every Day for over 2weeks. Now I'm on 1 pill one Day then 2 pills the next alternating until my New Dosage comes. I'll be on 200 mg twice a day. Sure hoping it helps get ride of the fluid. I spoke with my Pumologist about doing the Talc if it doesn't get rid of it. I feel pretty good except for I feel I need some Vitamins! Could use some Pep! Any suggestions?
Fri, 02/01/2013 - 21:52
You can search on the site for our discussions of cancer-related fatigue for the limited options for that.
Mon, 02/11/2013 - 08:13
As an update to my prior post, thought I would let you know that a follow up CT scan last week was read by my onc as showing some improvement in the degree of pleual thickening even though the remaining pleural effusion appears about the same. Have now been on Xalkori for 2+ months, and consider this to be positive news.
Mon, 02/11/2013 - 08:54
Good to hear this. Hope you are feeling OK on the Xalkori.
I thought Dr Creelan's point was helpful - that the pleural effusion is not in itself a useful marker of response, and may dry up over time.
Mon, 02/11/2013 - 08:59
Great News James! I would also take that as positive News! It's weird how different people react different to this XALKORI. Are you still on the Full Dose? 250 mg x a day? I started on that and for a month was doing ine. Actually noticed Wheezing was almost Gone. Then had to take a break and then my ONC played around with the dosage for a month to use up the 250's. Wheezing was creeping back. My CT showed more fluid and even thou I've been back on a reg. twice a day dose of 200mg twice a Day since last Weds. The wheezing has gotten even worse. I don't have another CT until end of April. So Keep up the Good Work!
Mon, 02/11/2013 - 11:42
Yes, I am still on the 250mg dose 2x/day, and I am feeling good except for fatigue towards the end of the day.
Mon, 02/11/2013 - 12:30
That's Great! Well I hope you countinue on it and improve!
Mon, 02/11/2013 - 20:38
That's really good to hear. It's not uncommon to have a hard time getting a good read on the response from imaging, but if things aren't progressing, it's possible that you will continue to do well and feel pretty well for a long time. Here's to more good news in the future.
Wed, 02/13/2013 - 08:04
Okay is this just making me feel better or will it actually do some good? I've decided to take my Morning Xalkori on more of an empty stomach. Yesterday I just took one spoonful of Yogurt and then took my pill with some warm Coffee. Then I waited over and hour to eat the rest of the Yogurt. I've been on the 200mg's of Xalkori twice a day since a week today. Had labs this past Monday and no word from the Center so I'm assuming I am in range with my Liver enzymes so that'akes me happy! But I'm anxious to start seeing more results with riding the Wheezing as it makes it difficult to sleep at night. Drives me crazy. I think I look tired. So do you think I'm being silly by doing this? By the way no upset tummy, no nausea either. I usually wait two hours before having cereal. Silly Me= Lorrie.
Wed, 02/13/2013 - 20:34
I think as long as you're able to keep it down well and your liver function tests are doing well, whatever you're doing is great.
Thu, 02/14/2013 - 06:58
But am I getting the full affect of the meds this way apposed to taking it with food which I heard reduces the effectiveness to 85%? Thanks Dr. West?
Thu, 02/14/2013 - 10:22
A high fat meal can reduce absorption by about 15%, but otherwise, food hasn't been demonstrated to exert a significant effect on absorption of XALKORI, except for grapefruit juice, which should be avoided while on XALKORI and many other orally absorbed cancer medications.
Thu, 02/14/2013 - 10:26
Lorrie, I'm wondering if the last 4 posts would be better served to the public on the ALK/ROS user group thread. What do you think?
Tue, 03/05/2013 - 21:15
Janie I'm sorry if I posted in the wrong area I was just conversing with James. The subject of Pleural Effusion didn't get talked about in the ALK pages here one thing leads to another? I don't know how to move them?
Wed, 03/06/2013 - 06:02
I have a small pleural effusion due to my right low lobe lobectomy. I hope it is gone.
I searched a Chinese web found that the doctors at a medical college hospital in Fujian Province, inject warm physiologic saline into the place, where pleural effusion was. They use warm physiologic saline to wash and circulate there in some cases plus antibiotics locally used getting unbelievable results including in some stage iv patients.
The document is in Chinese published in a medical journal.
I can paste a part of the article here, if interested in it.
Wed, 03/06/2013 - 08:03
Lorrie, really really not trying to make this difficult or be a tight a... When I read through the threads I look at them as pieces of information that will help a great deal of people. In doing so Dr. West has ask that we keep topics separate so subjects are easily found by readers everywhere not just those writing. I felt your conversation with the doctors about eating prior to taking xalkori warranted its own place. I'll leave it and add a tag about it so those doing a search will find it.
As a contributing member don't hesitate to start a new thread or add to a general one like the xalkori user group.
Above all don't worry too much about it when trying to get your questions out. I'll just let you know if I split up a conversation if I think it warrants it's own thread.
I hope that makes sense and thanks for bringing up these subjects they are helpful to so many.
Wed, 03/06/2013 - 08:13
Sorry again Janie, I wasn't upset just remarking I'm not able to transfer my subject but now that you mention it the title of this blog is Evaluating response to Xalkori so maybe we could transfer the whole thread? But really I am fine and will be more observant! Your friend Lorrie
Wed, 03/06/2013 - 08:47
Got it thanks for the reply. I don't think you are able to move or split threads. That's why I asked if you minded if I did it. I don't think there's anything wrong with making separate threads about xalkori. Especially if it pertains to a particular question. One huge thread could get confusing when looking for something specific like the question here about pleural effusions.
There's also the forum specific to ALK inhibitors http://cancergrace.org/forum/cancer-treatments-symptom-management/alk-i…
I always try to direct posters of these threads to the xalkori user group.
I know this is a mistake and shouldn't bother me...but as a child it always when new teachers/adults miss pronounced my name. Janie was the typical mistaken pronunciation to Janine. Now I'm absolutely floored by how many people with my name there are on facebook. Pages of them.
How's that for getting off topic. :-P