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 9 months, 1 week ago.

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May 21, 2014 at 8:51 am  #1263952    

aunttootsie001

Hi Bernie, I too had issues when I first started the crizotinib 11/28/12 was on it for a month and my liver levels were elevated. I was taken off of it for aprox. 2wks and after some juggling of the new prescription I had just received of the 250’s I took 1 a day and they took blood weekly. Blood levels stayed normal. Once I recieved my 200mg I started on 2 a day. Liver stayed good. So I countinues this for several months and I remained level. It was my encouragement to try and work my way back to normal dosage so I started taking a 200. In the morning and a 250 at night. I did this for a month or so and then started back on the 250’s and I have been on 250’s twice a day since last May with liver levels staying level! Now this may not work for everyone. I would run it by your Dr. They may not want to run the risk! But at any rate going off for a week or two and going back on a lower dose may just do the job for you? Keep us posted! Lorrie

May 21, 2014 at 9:00 am  #1263953    

aunttootsie001

While I’m here I wanted to update my previous post. First Chris (my son) will be starting Chemo and 6 was of radiation very soon. I will be going to the Head and Neck site to ask for tips to make this treatment go smoothly for him! Also I took your advise and made an appointment for myself not with ONC thou, with my Pumologist. I saw the Nurse practitioner instead but she took an X-ray and confirmed my Pleural Effusion has increased. Not enough to do a Thorentisis just yet but we are keeping an eye on it. So far my breathing has remained ok. But the wheezing and gurgling has gotten a bit worse. I hadn’t had it drained in almost 11 months. That was about 3 months after failed Pleurodesis in April. Any comments as to what my options might be? Once again I’m facing some sort of procedure and will probably postpone anything until later this year. But would like some input! Thanks everyone I still appreciate some prayers for my Son as he is only 46 with 3 teenage boys very active in Sports! Lorrie

May 21, 2014 at 9:20 am  #1263954    

Bernie

Thanks Lorrie. I shall discuss the crizotinib dosage with my oncologist. Bernie


49 year old patient from the UK. Diagnosed in August 2013 with metastatic NSCLC. Two mutations (EGFR and P53) and four biomarker over-expressions (MET, TOPO1, TOP2A and PD1). Treated with Tarceva as first line treatment and Xalkori to fight an emerging resistance associated to MET. Recently started a dendritic cell therapy to eradicate residual cancer cells.

May 21, 2014 at 3:48 pm  #1263960    
Dr West
Dr West

Bernie,

Yes, the main approach is to use a combination of treatment breaks and, if problems are recurrent and significant enough, dose reduction. The XALKORI comes in 200 mg tablets for this very reason. About 1 in 6 patients requires a dose reduction, so it’s not uncommon.

Lorrie,

I’m glad your son is moving forward with his treatment plan. As for you, I don’t know that any intervention would be indicated if after 11 months, there’s still too little fluid to drain. One fine option is to just drain fluid as needed, intermittently. We often don’t pursue anything else if a person only needs fluid removed every month or two, let alone being able to go more than 6 months at a stretch without needing fluid removed.

Good luck.

-Dr. West

May 21, 2014 at 4:25 pm  #1263963    

aunttootsie001

Thanks Dr. West that is very encouraging! Will keep you posted as to what happens! Would removing salt from my diet help at all? Lorrie

May 22, 2014 at 12:20 am  #1263971    

Bernie

Thank you very much for your answer, Dr. West.


49 year old patient from the UK. Diagnosed in August 2013 with metastatic NSCLC. Two mutations (EGFR and P53) and four biomarker over-expressions (MET, TOPO1, TOP2A and PD1). Treated with Tarceva as first line treatment and Xalkori to fight an emerging resistance associated to MET. Recently started a dendritic cell therapy to eradicate residual cancer cells.

May 22, 2014 at 11:43 am  #1263983    
Dr West
Dr West

Removing salt from your diet is not likely to have a significant effect.

June 4, 2014 at 5:06 pm  #1264179    

cloeginger

Hello, i have been on Xalkori for stage 4 NSCLC for about 8 weeks now, with a good response. I have had reduction in activity in lung lesions and my liver mets don’t show up on PET, smaller on CT. I also have 3 small bone lesions that show good signs of response. So I am really encouraged. The only side effect is a fair amount of edema in both legs. It seems to be getting worse with no response to lasix, elevating my legs or walking, I can’t go much higher with lasix because of problems with my creatinine and sodium levels. Will this eventually get better on its own? Does anyone have any other suggestions?

June 4, 2014 at 5:19 pm  #1264180    

cloeginger

I tried to sign for patient forum in Boston but was unable to complete form couldn’t get link to paypal. Do you knoepw how it works?

June 4, 2014 at 7:52 pm  #1264185    
Dr West
Dr West

Congratulations on your good response. I haven’t had any patients need to dose-reduce for edema, but if it’s bad enough, you may want to take a break from treatment or dose-reduce.

As for the signup mechanism, I believe it it’s been working OK, but you can e-mail Denise at dbrock@cancergrace.org, and she can help get you registered (and check the signup). We’d love to have you there. We’ve got just about all of our invited faculty confirmed.

-Dr. West

June 6, 2014 at 6:40 pm  #1264207    

aunttootsie001

https://m.facebook.com/story.php?story_fbid=10201775290898048&id=1654774993 need to know what you think of this? Anyone?

June 6, 2014 at 8:35 pm  #1264208    

Craig

AuntTootsie — Sorry, but that link doesn’t seem to go anywhere for me, so I don’t know what you want to discuss.

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)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

June 7, 2014 at 7:47 am  #1264211    

aunttootsie001

Sorry guys I’m not real good at the links. Try http://www.lung-cancer-RX.com big article on Lung Cancer treatment. Could be about Xalkori and other target drugs. I get lost in reading all these articles. Especially if they start talking medical terms? Hope this works better! Thanks Lorrie

June 7, 2014 at 7:48 am  #1264212    

aunttootsie001

Sorry that takes you right to the Xalkori site? Don’t mind me I’ll figure it out if I have to copy and paste.

June 7, 2014 at 7:58 am  #1264213    

aunttootsie001

Well I guess I lost it because now I can only find the info. About XALKORI. If I come across it, I’ll try again! Dang I hate being so untechie? Is that even a word? Thanks anyway. Lorrie

June 7, 2014 at 9:15 am  #1264217    

Craig

FYI – I hit my 3 yr survivor milestone today, thanks to Xalkori. :-D


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

June 7, 2014 at 10:01 am  #1264220    
catdander forum moderator
catdander forum moderator

!! Congratulations Craig !!
I’m so happy for you! …and I’m very happy for everyone who learns from you.
You’ve helped so many people through social and other online media that we all win when you win.

June 7, 2014 at 10:09 am  #1264221    
JimC Forum Moderator
JimC Forum Moderator

Terrific news, Craig!!!!

As Janine said, your great results not only provide hope for others, but they allow you to help so many traveling the same path.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

June 7, 2014 at 10:40 am  #1264223    

paulalv

Craig, How fabulous, 3 years!!
Wishing you many, many more

Paula

June 7, 2014 at 11:12 am  #1264224    

aunttootsie001

Great News Craig! I hope to be joining you in Aug! It will be 3yrs!

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