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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January 13, 2015 at 9:49 pm  #1268055    
Dr West
Dr West

It’s certainly appropriate to want to determine the value of the current treatment before moving to the next, and it’s important to also get a new baseline/benchmark before starting the next treatment. That said, in the setting of just about any progression, knowing that he has already received several therapies, and also knowing that XALKORI is associated with a high response rate and good tolerability for most patients, we’d typically have a very low threshold for switching to it.

Congrats on finding that, and good luck!

-Dr. West

January 14, 2015 at 3:51 am  #1268057    

suejg

Thank you so much, Dr. West, for the reassurance and best wishes. We so appreciate all you do!


Husband age 63 with stage IV adenocarcinoma, dx in 10/2013 with metastatic pleural effusion. Repeated thoracenteses and then PleurX catheter used to drain large effusions. First line chemo with cetuximab, carbo, taxol and bevacizumab (clinical trial), second line with pemetrexed, and third line started 12/23/14 with taxotere. Developed messenteric metastasis and ascites requiring first paracentesis in 1/2015. Foundation One testing showed ROS1 alteration in 1/2015.

January 14, 2015 at 3:50 pm  #1268084    

Craig

The reason I asked about Alimta because the combo of Alimta (pemetrexed) + carboplatin or cisplatin often works well for ALK or ROS1 patients, although the leading hypothesis is that that is mainly due to a never or light smoking history.

Ahh, yes, the trial lists a couple of locations in Detroit. You will, though, have to check with the coordinators to see if they are doing the ROS1 cohort at a location that interests you.

If I recall correctly, my trial visits started a few days in a row and then weekly, then every other week for a while, then monthly for a long while, and eventually every other month. It’s a 600 mile round trip for me. (I’m on my way home now at a stop in NJ.)

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 1, 2015 at 8:36 am  #1270025    
catdander forum moderator
catdander forum moderator

From our ALK forums we have a member question that I hope will find input here.
Janine

So, our beloved love affair with Xalkori is drawing to a close after 4 years! Hubby now has lung and liver progression just shy of his five year mark! While we are sad to see the disease come back, we are hopeful that his transition to ceritinib will be a relatively smooth one with just as much if not more success. Just looking for tips or hints on making the switch easy for him. Any thoughts on best time of day to take it, what side effects folks are seeing the most and just some hopeful words! Thanks! http://cancergrace.org/topic/ceritinib-side-effects#post-1270010

July 21, 2015 at 10:30 am  #1270539    

shelory

hi, my partner which is on Xalkori, was in the emergency room a few days ago for an infection on her legs and when they tried to take a blood sample the blood was very thick and it took them a long time to get enough blood. is this a side effect of Xalkori and should we be worried by this fact?
thank.

July 22, 2015 at 5:31 am  #1270553    

Craig

shelory,

I don’t remember hearing anyone else report that anecdotally, and I don’t happen to remember seeing hypercoagulability, antiphospholipids, or Hughes Syndrome mentioned in conjunction with crizotinib before, but I’d speculate that anything is possible since some people might have genetics that pre-dispose them to having something trigger something to arise which otherwise wouldn’t have been obvious. (I have a friend who inherited a condition like that from her father, for example.)

Have your partner’s doctors been working to diagnose whether any of the more common causes are the main factor? A little googling suggested that many patients with cancer have hypercoagulability, and I’d speculate that infections could also trigger something.

If I were in that situation I’d push for a more definitive diagnosis for the thickened state of the blood and whether/how to manage it, but I would not jump to an assumption that the crizotinib was a main factor (though I wouldn’t completely rule it out either in someone who otherwise might be predisposed to that condition).

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)

March 11, 2016 at 12:41 pm  #1273226    

Craig

XALKORI® (crizotinib) Approved by U.S. FDA for the Treatment of Patients with ROS1-Positive Metastatic Non-Small Cell Lung Cancer

http://www.pfizer.com/news/press-release/press-release-detail/xalkori_crizotinib_approved_by_u_s_fda_for_the_treatment_of_patients_with_ros1_positive_metastatic_non_small_cell_lung_cancer

Previously patients used crizotinib for ROS1+ lung cancer either via clinical trial or via off-label Rx. It’s nice to see it officially acknowledged as an FDA-approved use.

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)

January 10, 2017 at 1:18 pm  #1289753    

aliciauk

Hi there

I have alk positive lung cancer, 4 years post diagnosis, have received Crizotinib and now Ceritinib for more than a year, I wondered what is the optimum practice in the US now when resistance occurs to Ceritinib, is there access to liquid biopsy to try and ascertain mechanism of resistance or how is next treatment decided?Also do you know if liquid biopsy is available in UK? Thank you Alicia

January 11, 2017 at 9:27 am  #1289761    
catdander forum moderator
catdander forum moderator

Hi Alicia,

I hope you are alright. I’m going to move your question to our ALK thread to let Craig comment on the latest in ALK tki resistance.

All best,
Janine

January 11, 2017 at 12:02 pm  #1289767    

Craig

Best practice would be to biopsy the newly-progressing cancer to see if there is an identifiable mechanism of resistance and then choose a treatment that is not already known to be ineffective against that.

Given you have had two ALK inhibitors already there is a fair chance you might have developed a stubborn mutational variant of ALK that often arises, but which might be controlled by lorlatinib (via clinical trial).

I don’t know where you are located but you (or at least your oncologist) might want to seek the opinion of an ALK-focused research oncologist like Ross Camidge at U. Colorado or Alice Shaw at NGH in Boston.

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)

January 11, 2017 at 12:47 pm  #1289768    

Craig

p.s., liquid biopsies have advantages and disadvantages. One problem is that they are not nearly as sensitive as a piece of the cancer. If there is not much active cancer a blood test might not give a useful result.


- 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)

January 11, 2017 at 3:00 pm  #1289769    

aliciauk

Thanks Craig, I live in England ( actually I live on the Channel Islands located nearer France than England but we are tied to England for health care provision), do you know is it very difficult/expensive for people outside US to get an opinion from Dr Shaw or Dr Camidge and how would I initiate it, thanks very much Alicia

January 12, 2017 at 3:04 am  #1289770    

Craig

It probably would be expensive to travel “across the pond” to see Dr. Shaw in person. And I do not know know if your public heath service or insurance would pay for out-of-UK consultations. But I do know that Dr. Camidge does offer 2nd opinion consultations by phone (I wonder if by Skype video call is an option) for $$$ (USA insurance does not help with phone consultation costs) which makes it cheaper than a trip. BTW, you might also like by his UK accent. Both Alice and Ross are brilliant and amazing people. I think Alice has a larger lab team and colleagues so she might sometimes have a little bit more ALK exposure but Ross has intuitive intellectual insight about ALK cancer that amazes me, too, so my personal opinion (I have visited Alice dozens of times & she’s saved my life 5+ years so far, and met Ross at several of the the huge annual ASCO conferences in Chicago) they are both similarly brilliant. Ross was Cambridge & Oxford trained, Alice was Harvard, and don’t let their top knotch educations and ALK expertise let you underestimate their compassion & caring too.)

https://www.uchealth.org/pages/services/cancer-care/remote-second-opinions.aspx

Either might also be able to suggest a very good research-oriented UK doc near London they know via ALK trials etc. as another resource for follow up visits if you want someone with more knowledge to see in person regularly or for UK (or France) trials.

Best hopes,

Craig in PA (USA)


- 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)

  • This reply was modified 9 months, 1 week ago by  Craig.
  • This reply was modified 9 months, 1 week ago by  Craig.
  • This reply was modified 9 months, 1 week ago by  Craig.
  • This reply was modified 9 months, 1 week ago by  Craig.
January 12, 2017 at 3:18 am  #1289771    

Craig

PS., there is also a Facebook page run by & for ALK patients, though many don’t like Facebook’s use & disclosure of non-anonymous real names.

https://m.facebook.com/groups/808015982616743

and there is a much longer-running ALK (and ROS1) discussion over at
https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/anyone-on-pf-02341066-crizotinib-alk-gene-part-3/


- 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)

  • This reply was modified 9 months, 1 week ago by  Craig.
  • This reply was modified 9 months, 1 week ago by  Craig.
  • This reply was modified 9 months, 1 week ago by  Craig.
  • This reply was modified 9 months, 1 week ago by  Craig.
January 12, 2017 at 11:19 am  #1289776    

aliciauk

Thank very much Craig, I am waiting for routine scan results at the moment. I am inclined to look for some guidance from Dr Camidge/Shaw when Ceritinib resistance occurs as it surely will, I have a pretty good but busy oncologist who will not be too thrilled to have me suggesting a US consult, I will have to steel myself!

January 12, 2017 at 11:36 am  #1289777    
catdander forum moderator
catdander forum moderator

Alicia, I hope you won’t worry too much about what your oncologist thinks. You should feel good about having the opportunity to cover all your bases. Usually doctors are happy to have an extra head in the process. Presented like that might give little opportunity to nay say.

There are people who are doing very well on ceritinib for years. I hope you’re one!

Janine

January 12, 2017 at 12:09 pm  #1289779    

Craig

I would think most community (local) oncologists would love to have their patient get a 2nd opinion from one of the top 2 experts in the world for what their patient has, especially one that is in another country because they cannot possibly feel threatened. Yes, you might be redirected to a better trial for you in, say, London, but that doesn’t mean losing you. Even while in a trial elsewhere you might still visit your local one every 2-3 months like I did (I’m near Philadelphia, Alice is in Boston) to keep the relationship active since you’ll eventually need the local help (like I do now for routine chemo and will again after my next trial with Alice, whatever that might be, not to mention that you’d probably to have biopsies done locally).

You cannot underestimate the value of seeking the opinion of a top expert when treatment options get more complicated. Alice, for example, knows things about the two experimental ROS1 drugs I might consider that can really steer one’s choice (there are no good 2nd generation ROS1 drugs for my stubborn mutational variant of ROS1); there’s hardly any data available on one even though the trial has gone on for a year, and only lab data on the other since that won’t start it’s trial (at below-effective dose level first) for a couple more months.

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)

January 12, 2017 at 1:19 pm  #1289780    

bdaddy

Hello Alicia and sorry to butt in! My son Andy has seen both Camidge and Shaw in addition to his local oncologist and I think the crux of the matter is this: it’s not that we think the local onc’s decision- making needs a review ala an appeals court reviewing a trial court’s decision; it’s that there is critical information that a busy local onc treating every cancer under the sun can’t be expected to know. I have a better feel for what Andy’s future options might be than his local onc does, but it doesn’t mean I could treat him – it just means that I can read. And now that cancer is so personalized and heterogenous it just make sense to get the latest thinking from the experts. Best of luck in whatever you decide!

January 12, 2017 at 2:40 pm  #1289781    

aliciauk

Thank you all for info and moral support, Alicia

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