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 5 months, 1 week ago.

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June 7, 2014 at 4:05 pm  #1264232    

squanch

Congratulations, Craig! I had my 3-year cancerversary just last month, on May 10. May we all live to celebrate many more.

June 7, 2014 at 6:25 pm  #1264235    

cloeginger

Dear Craig,
What wonderful news! I was diagnosed in Jan 2014, on Xalkori since April. I only joined GRACE this week, and it is so inspiring to hear how well you are doing. Hope to be able to meet you in Boston in September.

June 7, 2014 at 10:22 pm  #1264240    
Dr West
Dr West

Craig,

That’s wonderful news! You provide tremendous information for many people, and your story also provides great hope for others.

Good luck.

-Dr. West

June 15, 2014 at 9:15 am  #1264419    

cloeginger

Have any of you had any problems with radiation pneumonitis? I became short of breath a couple of days ago, and have been told that this is the cause – I am being treated with prednisone. I know it will pass, just feeling a little discouraged because I was feeling so well.

June 15, 2014 at 10:13 am  #1264420    

Craig

cloeginger,

I only know that it can happen, and I get the impression (not from any medical source or research that I recall) that it might contribute to the risk of later pneumonitis upon use of some targeted inhibitor drugs.

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 16, 2014 at 3:05 pm  #1264424    

cloeginger

Thanks Craig,
I do hope it resolves soon. My doctor doesn’t think it is related to crizotinib and told me that it does occur common after radiotherapy. I was just wondering if others have had this and how li\ong it took to get better.
I still hope to meet you in Boston in September.
I have been on treatment for a few days now, and I am already seeing a little improvement.

Regards

June 16, 2014 at 3:35 pm  #1264426    

Craig

I hope you can bear it until it improves, and hope it’s comfortable by September!

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)

July 16, 2014 at 1:42 am  #1264991    

aunttootsie001

Hi everyone! May I also add my Congratulations to you Craig! I will have three years to celebrate next month also. Have been on Xalkori for almost 20 months end of this month.
I just left a lengthy update on my Son Chris. As of Sunday he had finished up 2 infusions Cisplatin and 6 weeks Radiation. At about 4 weeks in they admitted him to the Clinic because of Blisters on tongue and throat wasn’t able to swallow or talk. They put a different type of feeding tube similar to a peg tube. His wife was being trained to feed him ad they were going to release him. All of a sudden he became un responsive and they had to use paddles on him and he is back in ICU on a ventilator. They are unsure at this point what has caused this? Possible Heart attacks, possible infection in his body some where or even possible blood clots? Running test and we are doing a lot of praying! So that’s where we’re at! As for me besides being a basket case mother I still have some issues with slight wheezing from my pleural effusion I am guessing I will have to deal with it foe now as there isn’t enough fluid to drain. Guess that’s it! Please pray for My Son Chris!
Thanks Lorrie

July 16, 2014 at 8:30 am  #1264993    

Craig

Wow, so sorry to hear about Chris’ terrible day, Lorrie. Thank goodness he was till in the hospital at the time. I hope the figure out what the problem was quickly.

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

July 16, 2014 at 9:22 am  #1264996    
JimC Forum Moderator
JimC Forum Moderator

Hi Lorrie,

We’re sorry to hear about your son’s problems. We will send all our positive energy to him and to you for healing.

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

July 16, 2014 at 9:56 pm  #1265008    
Dr West
Dr West

I’m very sorry to hear how sick Chris has been. The treatment for head and neck cancer can be hideously difficult, among the hardest things we ever do to patients. It can really put patients through the ringer. I hope things turn around for him.

Good luck.

-Dr. West

July 19, 2014 at 1:39 am  #1265033    

aunttootsie001

To Dr. West and my Fellow Grace Family! Unfortunately the treatment got the best of my Son. A complication of some sort caused an infection somewhere in his body and he stopped breathing and he had a heart attack. The last week or so when he couldn’t keep anything down must have caused this infection. We thought maybe a blood clot but the chest X-ray showed no sign. He must have gone without oxygen to long before they brought him back. At any rate they removed him from the respirator just like my mother so many years ago and we had to watch him slip away. It wasn’t what we were expecting. We thought he was going to wakeup and be okay so he could go home. Home to his three boys 15,14’and 13. Home to his wife and home to Me. I never expected to not be able to talk to him again and I had so very much to say to my first born. Thank You for your support. I know this was not the place to discuss his Cancer but you guys were so good about it and gave me advise and support! I know I will see him again some day. And I’ll be able to tell him then how very much I Loved Him and how very Proud I was of him! Lorrie

July 19, 2014 at 3:34 am  #1265035    

Craig

I am so terribly sorry to hear that, Lorrie. Like you, I imagined his doctors would be able to diagnose his issues and manage his condition back to better days. It was so wonderful of you to have had him, to have raised him, to have seen him grow into a good man with a family of his own. I wish his time with us wasn’t cut short like that, and hope you will be able to adjust.

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)

July 19, 2014 at 10:14 am  #1265041    

paulalv

Lorrie, I am deeply saddened to hear this.
A devastating loss for your family.
My heart goes out to you,
God bless,
Paula

July 19, 2014 at 3:30 pm  #1265042    

squanch

Lorrie,
I’m so sorry for the loss of your son. Cancer is so unfair. Prayers for peace and comfort to you and the family.

September 23, 2014 at 1:16 pm  #1266114    

shelory

I’m acting as a caretaker for my (26 year old) girlfriend who was diagnosed for ALK positive adenocarcinoma of the lung. She has been on Xalkori for 4 months now.

We have a few questions:
1. She is complaining that she has hair loss, could it be because of the Xalkori? And is there anything she can do?
2. She is complaining of itchiness thought here body ever since she started taking Xalkori could it be caused by the pill? Is there something she can do about that?
3. She coughs up allot of blood frequently 1-5 cups, do you know what may cause this? Her doctors don’t really know.
4. She has edema in the legs, do you have any recommendation on how to reduce the swelling and pain?

September 23, 2014 at 3:22 pm  #1266115    
JimC Forum Moderator
JimC Forum Moderator

Hi shelory,

Welcome to GRACE. I’m sorry to hear of your girlfriend’s diagnosis and troublesome symptoms.

None of the symptoms you describe are typical of Xalkori, although it can cause swelling of the hands and feet. Progressing cancer can cause edema in the legs, as well as coughing up blood. What’s really needed is follow-up with her doctors, who may order further testing to determine the cause(s).

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

September 23, 2014 at 9:03 pm  #1266119    
Dr West
Dr West

I agree that it sounds like her issues are potentially significant enough that it would be valuable to review them with her doctor, since it may be unrelated to the XALKORI but potentially related to disease progression.

Good luck.

-Dr. West

September 24, 2014 at 7:34 am  #1266120    

Craig

Shelory,

1. I can’t rule out the possibility of a little hair loss, but Hair loss was not among the many common side effects reported during the trials. I have heard the question asked by women before, though. And I (a naturally balding male) suspect my hair loss was a little faster on Xalkori, perhaps via some testostrone-modifying mechanism, but not significantly and I’d have gotten to this point within a few years anyway.

2. Itching is among reported side effects, though maybe not very common. Discuss it with your oncologist, and then maybe possibly with your pharmacist (for non-Rx Medicine) or dematologist or primary car doc for a potential remedy (but make sure the check that their idea doesn’t compete in the liver for the same breakdown pathway).

3. Caughing up that much blood warrants calling you oncologist promptly. Some unusual bleeding is possible, but what you describe sounds beyond that. On the up side, it wonder if it might be the result of the drug causing some demolition work; on the down side, I’d wonder it the cancer isn’t responding and has reached a new symptom level, or if there could be an extraodinarily unusual reaction of some kind. If you oncologist need expert support, he/she can call Pfizer or can have a phone consultation with a top ALK research oncologist like Alice Shaw at MGH in Boston or Ross Camidge at U. Colorado opoutside Denver.

4. Edema is common on Xalkori. First remedy to try to manage it is compression stickings or socks. Your oncologist might also have other ideas since this is a common side effect for cancer patients in general. He/she might even offer so ething to reduce excess fluid, but understand the problem is not the fluid but leaky circulatory system vessels so you probably don’t want to overplay that card. (My mild edema does temporarily susbide after I’ve had diarhhea that has gone on for several visits to the bathroom instead of clearing through after 3-4 visits.)

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)

September 29, 2014 at 4:32 pm  #1266198    

Craig

Research News: Xalkori (crizotinib) for ROS1+ NSCLC (NEJM, 2014)

News Flash for ROS1’ers:

We have seen conference-presented data on Xalkori-for-ROS1 in the past. Now enough trial data has been accumulated for a full article to be published on it in a medical journal, with some more details not seen before.

Title: Crizotinib in ROS1-Rearranged Non–Small-Cell Lung Cancer
Authors: Shaw (lead author), Ou, Bang, Camidge, Solomon, Salgia, Reily, Varella-Garcia, Shapiro, Costa, Doebele, Le, Zheng, Tan, Stephenson, Shreeve, Tye, Christensen, Wilner, Clark, Iafrate.

http://www.nejm.org/doi/full/10.1056/NEJMoa1406766#t=articleTop

(my notes follow in separate messages due to the # chars limit per message)

(continued . . . )


- 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)

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