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my father(63) starting clinical trial at Dana Farber stage 3b


bbkg3

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Hello,

 

After having a chronic cough since late March my father was able to in mid -June have ct scan which showed abnormal areas in his lungs. He was extremely lucky and was able to quickly get into Dana Farber at the start of July and has the chief clinical research officer as his head doctor. He was informed that he has nsclc lung adenocarcinoma and its at stage 3b. It has not spread to his brain or bones, but under each  collar bone the doctor could feel a growth. He was told if he did nothing for treatment he would have about 6-8 months.  All of last month he basically spent every week driving into Boston to get more testing done.  Last Friday (July 30th), his doctor/treatment team recommended he try a clinical trail which is testing the combo of alectinib and cobimetinib, which my father has agreed to try. He will not receive chemotherapy while in the trail. This week he has a few more test, but hopefully next week he can start the trail. I'm wondering if anyone has tried either alectinib or cobimetinib for treatment? The doctor said there will be a lot of side affects.

 

 

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Hello And Welcome, 

Your Dad is extremely lucky as Stage 3B with ALK/MEK is a rare diagnosis. Over 90% of these type of “mutant” cancers are not diagnosed until stage IV.   Is this Dr Awad?

Ive been taking Alectinib for 33 months, all of the side effects were easily managed.  Initially my liver enzymes were more than five times the normal range and there was a dose reduction which was quite normal.  About a year later I developed pulmonary edema,  which was treated with Lasix. 
 

Now the primary side effects are fatigue & weight gain.  
 

I’d recommend three things:

1. Did the Dana Farber Team assign a Palliative Care doc for management of the side effects?

2. Please look at the Alk Positive website and Facebook group- you might actually meet someone else enrolled in the trial.   There is also an ALK Positive YouTube channel as well.

3. Ignore Google.  It’s so outdated no one can find any current information there as the science is moving too fast. 
 

Your Dad is getting the best care in the world right now as rational combination therapies is the way forward.  Initially my prognosis was very grim and here I am, three years later.. no evidence of disease. 
 

We’re here to help in anyway way possible. 
Michelle

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Hello and welcome to our forums.  I'm sorry to hear the news about your dad.  Having had a lung cancer diagnosis I can understand how this is devastating to him and all of the family.  My lung cancer was treated surgically so I cannot give you any experience with chemo and/or trials, but others here can I'm sure you'll be hearing from them shortly.  In the meantime you may want to read over a posting called "!0 Steps to Surviving Lung Cancer; by a Survivor" written to Tom Galli (one of our senior members) and it can be found here.  My thoughts are prayers are with you and your Dad.

Lou

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@bbkg3, I agree with Michelle that your dad is in the right place for treatment. I am also Stage 3b but with a different, more common mutation (EGFR). Diagnosed at age 66 in October 2019 and finally NED in April 2021. Best of luck to your dad on this trial. 

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Thank you for the responses.
 

@Rower MichelleHe has Dr. Bruce Johnson and he has been great. It’s gives me hope after reading Alectinib has worked for you! Dr. Johnson said this combo could potentially give him 3 years before they would need to look at something new. 

-My dad will be meeting with a palliative care doc. In the meantime he was giving a medication to help with his coughing at night. Other than a few times of coughing up blood and chronic coughing at night which disrupted sleep he has been pretty active. He power walks every day which the doctor has really encouraged to keep moving as much as he can. 

- I will check out the fb group! And thank you for the suggestion about Google..over the last month I’ve found myself in a Google blackhole late at night which has not been helpful.  😬

 

My dad turns 64 next month and is currently on short term disability and will move onto long term which will get him through almost a year. When he hits 65 he will apply for Medicare. I was pretty shell shocked when my mom told me the cost of medication for treatment. I think he will need to get a supplemental plan on top of the Medicare. If anyone has suggestions for a good starting point or knows of any online groups/pages that have been helpful when trying to figure out the best insurance coverage options I’d greatly appreciate the information. 
 

Thanks again!

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Over the weekend the ALK Positives just had their annual Summit so take a look at YouTube in the next few days for the session recordings.  
 

As for the insurance, yes it’s time to be proactive.  Purchasing the supplemental plans when you have a rare cancer isn’t a DIY project.  I’d recommend using a Medicare Insurance broker (there’s no fee) to help guide the process.  
 

The Medicare copays are very steep for inhibitors so you may want to look at the pharma companies web sites to determine how to apply for financial assistance.  One of our group members is also on Alectinib with another inhibitor and the combined copay was $1500 per month.  He was successful in receiving financial assistance but it took about six weeks to muddle through the process.  
 

There’s a lot of hope in the horizon as a growing number of Alectinib users are hitting the five year mark on treatment.  

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