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Lindsay

My story - Thus far

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Hi I'm new here. I was diagnosed just before Christmas of 2019 with stage 3b adenocarcinoma at the age of 31 as a never smoker. It was an incidental finding on a x-ray that my GP thankfully sent me for, and confirmed with three separate biopsies. I'm in the mid level for PDL1 expression and have ROS-1 genetic markings.

I've been through 30 rounds of radiation and 3 rounds of cisplatin and pemetrexed. I have just started a journey with immunotherapy durvalumab. 

I'm so glad to have found this group as I felt really lost and alone. I've joined a group in Canada for young adults with cancer, but have been looking for a group of specifically lung cancer patients.  

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HI Lindsay, 

Welcome to the club that no one wants to join.  I was a never smoker diagnosed at the age 51.  It's certainly a shock, then you're thrown into the deep end of the pool.   I have a similar mutation called ALK, it's a cousin of ROS1.   There's a Facebook Group called the ROS1ders founded by long term survivor Janet Freeman Daily.  Here is their website:  https://ros1cancer.com  .  Sadly it's fairly common for young people to be diagnosed with lung cancer and one of these mutations.   

I'm curious, here in the US, the standard of care would be for treatment with Crizotinib, which is a targeted therapy taken daily for maintenance.  Is that not available up North?  

Please check out our beloved "Durva Club" under the immunotherapy tab of this Forum.  They are such a wonderful group of people, many are in active treatment while others who have crossed the finish line are there to cheer you on.   

Nice to have you here, 

Michelle 

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Welcome, Lindsay.  I, too, have been diagnosed relatively recently.  It was a punch in the stomach. Some days hit me hard - I know no one else with lung cancer - other days not so much. I’ve found that just reading other’s posts can feel less isolating.  So glad you’re here! Suzan

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Thank you all! 

Michelle - thank you for pointing to those groups, I've been enjoying reading some posts in the Durva group, there are so many positive outcomes it's reinvigorated my positivity. I've not heard of Crizotinib so I'm not sure if it's here or not, I'll have to look into it and talk with my Onc. 

Suzan - It certainly is a punch to the stomach. I was doing well all through chemo and radiation, then when COVID hit and I started immunotherapy I went down a spiral. Finding this forum has really helped, I have wanted to find a group of people to share information with for a long time, I was very happy when my googling lead me here! Best of luck to you in your journey as well we will get through this!

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Lindsay

 Please add my “Welcome” to the rest of the folks here.  Michelle has already given you some great info and my lung cancer was treated with surgery only so I can’t share any experience with chemo. But this is such a wonderful group of people that you won’t be alone here.  We’ll all be pulling for you.  And chemo or no chemo we’ve all had to go through the trauma of learning we had lung cancer.  So, stay strong and let us know how we can help you on your journey.  
 

Lou

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Hi there, Lindsay,

I just might be the only other ROS-1 person on this forum.  I was told ROS-1 people tend to be never-smoker, young(-ish) women - I've never been the one to follow any trend/fad, but here I am. 😣

I do believe Crizotinib is available in Canada - I'm surprised your medical onc has not mentioned it as there are at least one targeted therapy option for several mutation types.  I was on crizotinib for 2 years.  

Let us know if you have any questions.  If you need to vent, or just looking for support, this is the place - I've done lots of both 😁 and the same "you got this" from a fellow lung cancer fighter hits you very differently than any of your friends/family's (who has never gone through any cancer journey) "you got this".

MB

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Thanks everyone! 

MB - you're right the well wishes are different coming from those in the same boat! I do hit all the criteria for ROS-1, aside from that I also heard it's higher in the Asian population. I did look into Crizotinib and in my province it's not currently funded. This is a link to a news story about it - https://calgary.ctvnews.ca/calgary-cancer-patient-pays-6k-for-month-supply-of-life-prolonging-drug-1.4770670 Right now it's a compassionate care drug. The plan is to follow the Durvalumab study and see how that goes, hopefully I get some good results. 

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ok, THAT is a major bummer.  "compassionate care" my hiney 😒 (I will share how I really feel next time, but for now, I'm controlling myself 🤣)

There are several folks here who are on (or have been on) Durva - there's even a dedicated area on this forum.  Wishing you a great result with Durva, keep us posted and let us know how we can help you.👍

sending warm thoughts,

MB

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haha Yea, it's not the greatest, but it is what it is. I'm hopeful the Durva will do what it needs to. Had good results with chemo and radiation so far so hopefully that momentum keeps going!

I've been in the Durva thread, and have been chatting away there too!

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