Heather N Posted September 9, 2020 Share Posted September 9, 2020 I’m Heather N. I was diagnosed about 4 months ago with stage 4 small cell lung cancer. I guess I have to learn the official names. I just finished my 4th chemo infusion including Carboplatin,Alimta, and Keytruda. The plan is to eliminate the carboplatin going forward. I have an unusual mutation. Don’t know what it’s called. I’m in PA and my doctor says there my be a pill that can be used to treat it. He says it’s $10,000 per month. I’m a personal trainer and group fitness instructor and I continue to work, a bit. It seems to be all about staying strong. Link to comment Share on other sites More sharing options...
GaryG Posted September 9, 2020 Share Posted September 9, 2020 Hi Heather welcome. It looks like you are way ahead of many of us with your treatment schedule. We have quite few people on the same treatment and I am one of them. I will have my forth infusion in 2 weeks. As for the pill, that's a lot of money but it could be worth it. I understand from other posters that you can get it a discount and hopefully one of them will tell you how. Also if you can name your mutation or the name of the pill somebody will share their experience . How did the Carboplatin,Alimta, and Keytruda work so far? We call it the triplet. Again welcome and if you have any other questions please don't hesitate to ask. Link to comment Share on other sites More sharing options...
Lisa Haines Posted September 9, 2020 Share Posted September 9, 2020 Hi Heather, I wish you the very best and it's good new to hear that you may have one of the "mutations" that can be targeted with a kind of treatment that is an oral treatment versus chemo and immunotherapy. I would ask you doctor to explain that to you, so that you know which one and then you can come here and talk to patients who are those types of treatments, which often work for very long periods. Plus, no need for infusions, which many of us would be happy to give up. As for the costs, if your insurance does not fully cover the costs most of the drug manufacturers offer assistance programs and in some cases will fully cover any out of pocket that you may have. All cancer treatments can be amazingly expensive. I'll never forget when I saw the first bill for my first Immunotherapy (Opdivo) infusion and it was billed out at over $30,000 per infusion, Yikes! Hope you find out soon what targeted therpay you may be able to use, as it will then make it possible to you to take that instead of the triplet. I'm also a Stage IV patient, but I have "Non-small cell Lung Cancer" which is somewhat more common. Take care and please keep in touch to let us know you you make out and when you may be able to switch to an oral treatment. Lisa Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 9, 2020 Share Posted September 9, 2020 Hello Heather, Welcome to our club that no one ever wants to join and will greet you like family going forward. I was also diagnosed at Stage IV nearly two years ago with one of those rare lung cancers that impacts otherwise healthy non smokers called ALK Positive. I had one dose of Carbo/Alimta/Keytruda and transitioned to pill therapy. It runs $15,000 per month. It’s very important to understand what type of lung cancer you have, especially if it’s one of the rare birds. Doctors in the community understand very little about “the mutants”. It’s up to us to advocate on our behalf for optimal treatment. I’d encourage you to ask the oncologist at your next appointment. There’s quite a few long term survivors here to help. It’s possible to make a new life and live with this disease. Nice to meet you. Michelle Link to comment Share on other sites More sharing options...
LexieCat Posted September 10, 2020 Share Posted September 10, 2020 Hi, Heather, The treatment you're describing sounds more typical for NON-Small Cell Lung Cancer. You want to check with your doctor to be sure you have that right. You've gotten some very good info above. I'm having trouble typing right now but wanted to welcome you here--glad you found us. Link to comment Share on other sites More sharing options...
Robert A. Posted September 10, 2020 Share Posted September 10, 2020 Welcome Heather, My wife was put on Tabrecta which is a pill. She takes 4 pills a day and it is expensive. The manufacturer of the drug can sometimes help you at a reduced or no cost. See if your oncologist can help you by contacting the drug company. It has helped my wife a lot and has shrunk her tumor more than half. Good Luck. Link to comment Share on other sites More sharing options...
Judy M2 Posted September 10, 2020 Share Posted September 10, 2020 Hi Heather, my Tagrisso targeted therapy for Stage IIIB non-small cell adenocarcinoma costs $13,000/month but the manufacturer is covering the cost through December, when I will have to re-apply for financial assistance. The assistance is based on income (I'm retired). As I recall, my oncologist obtained the application from the manufacturer. There is a lot to learn about this disease and all the current treatments, and the survivors in these forums are extremely knowledgeable. Hope you'll visit often. Good luck. Link to comment Share on other sites More sharing options...
JamesB Posted September 10, 2020 Share Posted September 10, 2020 Hey Heather,I'm new here too.I'm glad you have a treatment plan that seems to be working for you. You continue to work? That's great! I own a small Pilates studio and only do private sessions.I am starting chemo this coming Thursday and hope I can continue to work.I wish you the best! Link to comment Share on other sites More sharing options...
LouT Posted September 10, 2020 Share Posted September 10, 2020 Hi Heather, Welcome to our forum and family. My lung cancer was treated surgically so I have no experience with chemo, but I see you've already met many of our folks who do have that experience and are offering great counsel. Keep us updated, ask your doctors questions and stay strong. You'll have us here for support and information. Lou Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted September 10, 2020 Share Posted September 10, 2020 Hi Heather! If you need assistance with paying for treatment, the Lung Cancer HELPLine may be able to help: https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline Link to comment Share on other sites More sharing options...
Lin wilki Posted September 10, 2020 Share Posted September 10, 2020 Hi Heather. I also was a group ex and personal trainer. I realized I lost a lot of stamina the last couple of years and blamed it on knee replacement surgery. Was diagnosed with Stage 4 adenocarcinoma in May of 2019. I then gave up my classes and just did a little personal training I also have a rare mutation HER 2 and have finally been put on my target chemo which is killing tumors It would be a good idea for you to have more info on your cancer type and mutation. You may find others here that would be able to advise you Follow up here- you will find lots of support Link to comment Share on other sites More sharing options...
Lanny Posted September 10, 2020 Share Posted September 10, 2020 Hi Heather I am new to the group I was diagnosed stage 4C I haven’t started Chemo yet I had Salvery duked Carcanoma in 2018 & had a 10 hour surgery they had to close my right ear up now it is metastasis in my right lung The Chemo I am going to have is Carboplatin & Paclitaxel they want tp treatm once a week for 6 weeks then CT scan also been a biopsy on the lymph nodes in my neck need to call the doctor when are the going to start i wantwish U good luck & GOD speed Link to comment Share on other sites More sharing options...
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