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PCW

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22 minutes ago, PCW said:

At the pharmacy, outta curiosity, I inquired the cost of 30 pills of Tarceva: $18000 per 30 pills😬?! 

If you have financial issues, Genentech, like many drug companies, offers financial assistance for patients who can't afford the medication: https://www.genentech-access.com/hcp.html. Yeah, these meds are expensive. Hopefully your insurance will cover it, but if not, check out the link for assistance.

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  • 2 weeks later...

Hi everybody,

Been a while, waiting for my mutations result. Finally came today, I have ERBB2 mutations. My oncologist said target therapy is off the table, I have no EGRF mutations. She has to work out a treatment plan for me over the weekends and will see me on Tuesday. In the phone conversation, she mentioned about clinical trials. I’m lost...

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Hi PCW,
 

I am in the waiting game for treatment plan as well. I do not have EGFR or ALK either, still waiting on one more lab report to come back to finalize everything, but I do have PD-L1 which will bring immunotherapy in along with IV chemo.  I have a second opinion appt  with a cancer center on Monday regarding clinical trials, I will report back what I learn.

I don’t have much advice for you other than our situations seem similar so maybe we can continue to compare notes.

 

 

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Hi Shella

I think Keytruda is indicated for PDL 1 positive, if I’m not mistaken. Certainly I’ll keep you and everyone posted . Best of luck!

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You'll have to see what your oncologist comes up with. She's going to look into any available clinical trials--those can give you an opportunity to benefit from the latest, most promising new treatments. If there are any that might be appropriate, she will explain them. Otherwise, as we've been saying, the mainstream treatments can be very effective. How's your cough? Did the medication help at all?

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Hi Lexie and everyone,

My cough is better controlled with both hydrocodone/homatropine and Robitussin DM. than using either alone. I take them alternately. What also helps me is clonazepam 0.5mg which I take at bedtime , gives me a good night sleep.

 

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Excellent! So glad to hear it. Getting a good night's rest without coughing your brains out can only help in terms of fighting off cancer and maintaining a positive attitude. Keep that in mind when/if you have issues resulting from your treatment--there are usually tricks to deal with unpleasant side effects.

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I read a study recently that any PD-L1 expression will benefit from treatment with Keytruda and everyone has some degree of PD-L1. Of course the higher the degree, the more effective Keytruda will be. That makes that drug a true game changer for sure. That's why I didn't get just too upset when I scored a zilch for actionable mutations. 

And if there was a trial I was eligible for I would seriously consider it... The treatments today are based upon those who volunteered to help more folks than themselves. Just like the people on these forum pages...we really do want to help others...

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Dear friends on the forum,

A wave of mixed feelings has suddenly taken over me. With all your encouraging messages, I feel glimpses of hope to live on. On the other side, I feel like I’m coming towards the end; the idea of buying a one way ticket to Oregon has come back... I should go on a clinical trial to benefit possibly myself and others, but I had spent a life time preparing chemo meds for other patients. I’m totally insignificant in that sense when I see so many front line health care works sacrifice their lives for the covid crisis. I see myself as a covid statistic since because of It, I delayed my visits to the doctors. My mixed feelings include a sense of betrayal; but I don’t know exactly who has betrayed me. Growing up partially as a Christian and now suddenly I proclaim to my few friends (who know my situation) a atheist. I think I’m subconsciously trying to justify my idea of euthanasia.  Tuesday is my judgement day I guess; my appointment day to the oncologist for a treatment plan. I still have to figure out a way to tell my siblings.......

                       Regards to all of you


  

 

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You're a ways off, remember, from having to make that decision. Participating in a clinical trial is a very personal decision. First, there might not be any that are appropriate for you or more promising than the treatments already available. Second, when it comes to cancer treatment, it's truly a matter of self-preservation first and foremost. You don't "owe" anyone and there's no obligation, EVER, to participate. I would never sign on for a trial I didn't think would benefit me. I think that's true for most people--they don't participate out of a sense of altruism. 

And I seriously doubt the few months you would have delayed seeing a doctor made a big difference in your diagnosis. When my first nodules were found and didn't grow over the course of three months, they had me come back a year later, which is when the cancer was detected. Most cancers don't grow so fast that a few months makes a big difference. 

Try not to catastrophize. You're assuming the worst possible outcome at every point in the process. But it seems to me that the odds of a good outcome at this point are pretty decent. Remember, not a one of us in this world gets out alive. But I'm betting that before my cancer does me in (if it does), I'll have quite a few years of good quality life in the meantime. 

I have a feeling once you start treatment, your outlook will be a bit more positive. I know I always feel better when it seems like I'm doing something about a problem rather than sitting around at the mercy of other forces.

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Hi Lexie,

Thanks for your heartfelt message. I will keep you and everyone posted of  my Tuesday appointment. Meanwhile, let me sincerely wish the best for everyone here.

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Hi Everyone !

Came back from oncologists appointment; clinical trials for ERBB2 mutations are still in phase one so she doesn’t recommend it. Her treatment plan is alimta with carbo plus Keytruda. Shella, you are right, when PDL1 is less than 1%, it’s indicated to be used along with other chemo agents. My next hurdle is to get Keytruda approved from my insurance. Since I have a few insurances, it takes a while to navigate through them. Now I’m being prepped up with B12 and folate to prevent toxicity from alimta. My first chemo administration will be somewhere next week. Overall, my oncologist said it will improve my quality of life even though the aim is not to cure.  She also referred me to a palliative pulmonologist. So far, I feel so blessed with a good oncologist and not to forget, the valuable info that I have obtained from this forum. Thanks everyone!

                                    Regards 
 

 

 

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Great--things are moving along, then. You shouldn't have any problem getting Keytruda approved. It's widely used for nsclc these days. And actually, the carboplatin is the more toxic of the two chemo drugs. Alimta is less so, but with either one you'd be getting the folic acid and B-12. 

Are you getting a port? I really recommend it--your veins will thank you.

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Right now I am 8 days past my first infusion in a four course treatment plan of Carboplatin/Alimta. I think I made it through the first side effects fairly well. Days 2 and a half through day 7 were kind of rough what with a finicky stomach and just plain exhaustion, but other than that nothing else. Now, that being stated, your side effects may be different, but I have every confidence you will get through it too. I myself never had the added Keytruda, but from what I've heard from those that get that as well, those side effects are much less concerning than those from Carboplatin alone. And from what I've read, everyone has some level of PD-L1 expression and anyone who has any expression will benefit from Keytruda. That drug is that good...period. 

My advice to you is to not overthink your treatment plan; you have to have faith that your medical staff is doing exactly what is right for you. Then it is just a matter of commitment on your part. In the words of Yoda, you either Do or you Do Not; there is no Try. And your medical team will monitor you every last step of the way. Depending on your blood counts and bodily reactions all manner of adjustments can be made to your treatment plan and it will most likely still be just as effective.

And a last word here...do what you have to do to get a port installed. I promise you that you will regret not getting a port installed if you don't... Sticking those viens time after time gets really painful and with everything else going on, you don't need that.

Stay committed and keep us informed on your progress...we'll be here for you...!!       

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  • 3 weeks later...

Hi Everyone! 
how are you folks? It has been two weeks since I put in a post and would like to bring a little updates.  Finally, last Monday, I was started on my 3 drugs regimen. My oncologist noticed that my SOB had worsen. He decided to give chemo over the course of three days: Day1: alimta and half a carbo dose. Day2: half the remaining carbo dose, then go to have a cat scan to see how bad my MPE had spread. Day three: the miracle drug Keytruda whose commercial has promised a nice barbecue with family. After the second day, I was called to reported to ER ; cat scan showed almost entire opacity in my right lung with plural effusion. I was admitted in the hospital for 2 days for another thoracentesis. This time they managed to draw out 2 liters with remaining pockets of water still  scattered (locular) in the right lung. Yesterday I was D/C from the  hospital and didn’t have a chance to continue my keytruda. Monday I need to follow on my oncologist appt.  During the hospital stay, a couple of things had been mentioned: pleurodesis , which is an injection of a sclerosing (usually Doxycycline or Talc) in between the pleural layers, causing adhesion( sealing off) of the layers. Heard the procedure is quite safe. Judging from the aggressiveness of my MPE, I think this is a very valid option for me. So next week I’ll be busy meeting a pulmonologist!  
Another interesting thing that came up during my chemo was that decadron gave me hiccups! This is not a bad trade off for N & V which I experienced none! Dr . Google has an article on this topic, and it’s only happening to male patients!

http://www.kantrowitz.com/cancerpoints/hiccups.html

                         Regards to everyone    
                                             Paul CW

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Wow Paul. Need some time to digest your scan results. In my thoughts buddy.

Peace

Tom

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Good to hear from you, Paul. Sorry things have gotten off to a rough start. Hopefully they get the effusion under control so you can start some serious treatment.

Hiccups are MISERABLE--hope switching meds resolves it.

Hang in there, dude. You'll get past this.

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I have heard of hiccups from decadron but there wasn't a solution (yet) in that patient's case, unfortunately. Good to hear from you. Hope you can get that Keytruda BBQ soon. 

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  • 2 weeks later...

Paul,

Sorry to hear about all that is going on, but your doctors seem to have a plan for you and I'm hoping for improvement for you and soon.  Hiccups can be terrible.  When I had colon cancer (2010) and was in the hospital after surgery I would hiccup every 5 seconds.  It became maddening to me over time.  In my case it was caused by side effects of the surgery and some of the drugs they had me on.  After trying things like Thorazine...they finally tried a small dose of Valium and that calmed them for a while.  I used the Valium (again, small dose) for a couple of weeks and then weaned off of it and all was fine again.  But Lord, those hiccups were a pain.  I hope they can make appropriate adjustments to you for relief.

Lou

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