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 11 months, 1 week ago.

Viewing 20 posts - 41 through 60 (of 519 total)
Author Posts   
Author Posts
November 9, 2012 at 5:44 pm  #1250032    

Craig

aunttootsie001,

I don’t think anyone can predict which will help most or longest. I think the odds of a benefit from Xalkori (roughly 85% or better chance shrinkage or stability for a number of months) are significantly higher than for chemo, and side effects are often much more managable. You should ask your oncologist, but I think the trend is toward recommending trying a targeted inhibitor drug (if one is applicable) before chemo if someone is Stage IV or is considered incurable. (Chemo offers a chance of cure, however small, that inhibitor drugs don’t.) A good converation with your oncologist might help sort out your personal priorities and preferences vs. odds of effectiveness & side-effects.

You can find Pfizer’s Patient Assistance Programs here:

http://www.pfizerhelpfulanswers.com/pages/Find/FindAll.aspx

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)

November 9, 2012 at 6:24 pm  #1250034    
Dr Walko
Dr Walko

aunttootsie001,

I know the cost issues of these drugs are challenging, but just about all of the drug companies do have copay assistance to help with large costs. The website below is Pfizer’s patient assistance plan:

http://www.pfizerhelpfulanswers.com/pages/Find/Find1.aspx#

What you need to do is select the drug (Xalkori, it is sorted by brand name, so click on the letter “X” on the menu) and then click “go to step 2″. Here the site will ask you a lot of specific information including your income and employment status. After you complete this, it should provide you with more information about who to contact for the assistance plan you qualify for.

Another option is to have the specialty pharmacy sending you the drug to help. Where are you getting the medication? (Most of these drugs do not come from usual retail pharmacies). Many specialty pharmacies have patient assistance counselors who will help you with the process. Living in North Carolina, Biologics is my preference since they do a great job of customer service for patients with exactly the co-pay issue you are having. Their website is: https://www.biologicstoday.com/oncology-pharmacy/

Hope this helps, I work with this problem with a LOT of patients so you are not alone. It will work out and get paid for eventually, don’t worry!
Dr. Walko

November 9, 2012 at 10:01 pm  #1250045    
Dr West
Dr West

In truth, our hope is to give a patient with an ALK rearrangement BOTH chemo and an ALK inhibitor, but the ALK inhibitor is typically the treatment that will be associated with a greater probability of tumor shrinkage, and a response that will last for longer. Because of that, the ALK inhibitor is the higher priority, and I would say that most if not all lung cancer specialists would favor giving the ALK inhibitor (XALKORI (crizotinib) being the only commercially available one right now) as the first priority for an ALK-positive patient, if for no other reason than to assure that someone with an ALK rearrangement gets their opportunity to benefit dramatically from a likely very effective therapy for them.

-Dr. West

November 11, 2012 at 11:23 am  #1250093    

aunttootsie001

Thank You everyone for you helpful info. It appears I have to wait until monday to talk to them at Hope Center to let them know of the recent problem. Dr. Walko they ordered it from Curasript. They didn’t call until 7:00pm on Friday so I haven’t been able to reach anyone. I went online and did find Phizer page but my computer doesn’t have the same program as them and I can’t download the form that needs to be filled out. so once again I have to wait until tomorrow to call the 800 #. It is just very frustrating to try and get this settled! We already are still paying on Bills and Dr’s from last years Surgery,Chemo,Radiation,CT’s extcetra, so we are in a Quandry. Really can’t afford it to be very much. If it is we will have to find a way of making Payments! My insurance is Thru Unitedhealth and we have a supliment thru AARP Medicare Complet which normally pays on this stuff pretty good, but $2,750.50 for 30 day supply is way out of our range! I’ll let you know what happens after tomorrow!

November 11, 2012 at 1:29 pm  #1250097    
catdander forum moderator
catdander forum moderator

I just hate that there’s a difference in insurance between IV chemo and pill form. It often costs more for IV treatment than tarceva. Xalkori I don’t know about. How is that?
I’m so sorry, keep us posted, and we’ll keep looking for the answer you need.

November 12, 2012 at 1:24 am  #1250120    

certain spring

Sorry to hear about all these hurdles, and hope it works out once you’ve had a chance to speak to somebody.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

November 12, 2012 at 7:21 am  #1250129    

aunttootsie001

Thank You ladies for your input! I appreciate all the Support. Well first thing this morning I called my Cancer Center and let them know my situation and they are checking into what I can do. In the mean time I called Phizer to request Copay assistance. I will say the Lady I spoke to (Shirley) was very nice. Took info. And said she would check it out and get back to me today! Praying they are able to get it with in a range we can handle. We are with AARP Medicarecomplete and my Husband is going to see what he can do to try and lower our Copay for next year. This will be a test to the prexisting condition Claus in Obama Care?
In the mean time I will be going to visit and hopefully get to hold my Newest Great Grandaughter who was born Oct. 4th at 31 weeks. She is home now and doing very Well. She is my light! Will keep you posted!

November 12, 2012 at 9:30 am  #1250132    

aunttootsie001

Hoops and more Hoops! Just spent 2hours on the phone most of it press 1, press 2 and then finally contacting a real person. Called 5 foundations total. 2 No’s and then 1 pending us receiving forms and sending them back. And another that tentatively able to help us with same criteria waiting forms and confirmation of our income and prior insurance amount. All in all stress level down a little but still have to wait to start Meds. Probably a week or two to wait Snail Mail.

November 12, 2012 at 9:40 am  #1250134    
catdander forum moderator
catdander forum moderator

Good work! I think you will make it, you will get the drug because of your tenaciousness. It’s a hell of a note but I think that’s the way the system is set up…and has been for many years. My money is on the woman at phizer.

When you get that great baby in your hands your stress level will drop even more.

November 12, 2012 at 9:54 am  #1250136    

aunttootsie001

Thanks Cat, just hope it moves along faster than I’m thinking! Will keep you all posted!

November 12, 2012 at 9:39 pm  #1250185    

laya d.

Hi Aunt Tootsie:

I don’t know if you recall, but my Mom also treats at the City of Hope and receives her Tarceva via Curascript. For the most part, our experience has been that they are very on-top-of-things once the insurance and payment issues are resolved. We’ve had nothing but positive interactions with Curascript’s Customer Service Department, and they will overnight you your meds, even if it falls on a weekend. In fact, my Mom has received things on the weekend from them. They generally call the day before your meds are due to arrive to make sure that you know the meds are coming.

So, best of luck to you…and great job with keeping your stress level down through all of this.

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

November 13, 2012 at 1:37 am  #1250189    

certain spring

Not to interrupt the conversation, but just wanted to cross-link to a comment from Dr Aggarwal on another thread:

http://cancergrace.org/topic/anaplastic-lymphoma-kinase-and-lung-cancer

She mentions a “new and improved” post-crizotinib drug called LDK-378, now in clinical trials. This is probably old hat to the ALK experts, but I thought I would mention it. Best to all.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

November 13, 2012 at 2:31 am  #1250192    

aunttootsie001

Thanks Ladies! It really helps to be able to come here and Vent and know you all understand what we are going thru! I’ve kind of slacked off on my walking lately and need to get back to it, it helps calm me Down. Tredmill not as much as walking outside at the lake but it helps some. Thanks again and hope your all doing well!

November 13, 2012 at 6:03 am  #1250195    

Craig

Yes, there are three promising ALK drugs. Novartis LDK378, Ariad AP26113, and I think also Chugai CH5424802, and are all looking very good in early results, more potent than Xalkori. Each drug is a little different, so they each treat different variants of ALK or sometimes collateral mutations (in the same way that Xalkori inhibits both ALK and ROS1 and even c-MET). LDK378 is the first successful one and I know someone who has been on it for about a year, although she is having progression and will have to try something else.

These are still ALK (and ROS1) inhibitors, though, so they would be effective on variants of ALK (and ROS1) and probably not useful on other forms of resistance. My guess is that even if only 30% or 50% of resistance were due to ALK (or ROS1) variants that one of these new drugs could inhibit, some of the time the new drug will be so potent that even if resistance from a non-ALK (non-ROS1) mutation is growing they might shrink the front-running ALK-driven (ROS1-driven) cancer so much that it does shrink the measurable cancer anyway and does help survival time until the non-ALK (non-ROS1) mutation becomes the dominant problem. Something like that might explain why *very* early results seems to suggest maybe 75%+ response rates to these drugs. For our long-term survival, then, it is important for research to progress on identifying other mechanism of resistance that can be treated.

Both the Alice Shaw team at MGH in Boston and the Ross Camidge team at U. of Colorado in Denver are researching mechanisms of resistance. (The lab researchers behind these two ALK+ROS1 expert oncologists are the important unsung superstars of this work.) You can find summaries of that research here:

http://www.inspire.com/CraiginPA/journal/new-research-in-resistance-to-xalkori-crizotinib-for-alk-driven-nsclc/

and here

http://cancergrace.org/lung/2012/01/13/mechanisms-of-criz-resistance/

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)

November 13, 2012 at 8:13 am  #1250198    

aunttootsie001

Are they done doing trials on the XALKORI? Just curious! These trials your talking about are they the kind that you don’t know if your on the Drug or placebo? Originally I was suppose to be on a trial right after my surgery. They were taking so long getting it organized, maybe they were having trouble getting enough people at that time. Anyway both my ONC and I were getting impatient so we decided to forego it and we went with Carbo/Taxol. The trial was Cisplatin and not sure what else. Doesn’t matter because I probably wouldn’t have been on it very long my White count went way down and took 11 weeks to climb back up. Does XALKORI have that reaction on people? Thanks for the info.

November 13, 2012 at 9:02 am  #1250199    

Craig

AuntTootsie,

I assume people who were in the original Xalkori trials are probably able to continue on them, but I don’t really know. I do know that some variations were recently added to the original phase 1 Xalkori for ALK trial. For example, ROS1-driven cancer (like mine) was added, and c-MET. Also, they added simultaneous testing of certain drugs that some patients may need during treatment to deal with an infection but which are risky such has ketoconazole (antifungal) and a TB drug. So even though it’s the phase 1 trial of Xalkori, they’re still collecting new data from it.

I don’t know about phase 2 or 3 Xalkori trials, but I assume they should still be ongoing, too, at least for patients who were enrolled in them. You can check at http://clinicaltrials.gov , for example:

http://www.clinicaltrials.gov/ct2/results?term=&recr=Open&intr=crizotinib

lists many still-open variations using Xalkori (crizotinib).

It is only phase 3 trials where a patient would get randomized to a standard treatment or Xalkori. I don’t think anyone wouldn’t know what drug they’re getting since the side effects and delivery methods are so different. Usually for successful drugs patients in the “control” group are allowed to try the experimental drug once they’ve shown progression on the standard treatment. At this point, though, Xalkori for ALK is already FDA approved, so those ALK participants wouldn’t need to be offered Xalkori subsequently since they could get it by simple (but expensive) Rx.

I think I remember some people can have reduced white blood cell counts on Xalkori, but I wasn’t affected at all. I wouldn’t expect Xalkori to cause that as often as chemo does. When side effects are problems, oncologists can try a “drug holiday” to allow healing to occur and can try to lower the dosage. If you want to see a list of potential side effects, see:

http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/crizotinib

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)

November 13, 2012 at 2:15 pm  #1250215    

aunttootsie001

Thanks Craig! Your. Wealth of info!

November 13, 2012 at 6:13 pm  #1250228    
Dr West
Dr West

Some patients do have a drop in their blood counts with XALKORI, but it’s far less common than we see with chemotherapy. I’ve had a patient who has required many brief breaks from the XALKORI to allow her white blood cell count to recover, which it always does within days of stopping the XALKORI, and then she’s on it for weeks or months before we need to hold it briefly again.

-Dr. West

November 13, 2012 at 6:44 pm  #1250233    

aunttootsie001

Once I finally get started on it it is comforting to know that breaks can happen to give some issues a chance to settle. Thank You Dr. West! Figure I’ll get the paper work on Thursday and then I’ll try to Fax it back on Friday if possible. Taking this delay in starting one Day at a time!

November 21, 2012 at 12:43 am  #1250468    

aunttootsie001

Frustration is setting in while I wait to start the XALKORI! The Copay assistance group that contacted the Center never mailed the forms to me. We kept thinking they would come the next Day. The center said if they didn’t come by Monday which they didn’t we could take care of it when I saw the Dr. On Monday. Faxed in the info and now waiting to get the official approval. I’m thinking with the Holiday I may not even get the meds by this next Monday? What is frustrating me is the Pleural Effusion isn’t causing shortness of breath or difficulty breathing mostly just when I lay down on my left side or flat on my back. I wheez alot and my lung makes a lot of weird noises! For some reason tonight it is preventing me from going to sleep. Is there anything I can take to help with the wheezing? I’ll probably have to have the fluid drained once more before I even get started on the meds. It is driving me crazy!

Viewing 20 posts - 41 through 60 (of 519 total)

You must be logged in to reply to this topic.