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Introducing & Stage IV -- Looking for forums


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THANK YOU to those survivor stories, especially you, Tom. It has given me hope.

This is my first time at a blog, so bear with me!!

I have stage IV, NSCLC, adenocarcinoma (non-squamous). I had (robotic) wedge resection in Jan 2020; spots outside of lung area appeared by end of year. In Jan 2021, had regimen of chemo (carboplatin and Taxol (plant-based)) and radiation (another doc - long story - recommended Carbo & Alimta); followed by immunotherapy (Durvalumab) that I stopped this week. Original spots (hilar area, etc) shrunk but some new ones appeared around ribs/chest area and lower boney area (illiac, sacrum and acetabulum) by end of 2021 (while others DISappeared).

Biopsy last week on iliac spot showed it is adenocarcinoma; genetic testing on original specimen showed two mutations, for KRAS & TMB. Path forward recommendation is targeting KRAS with sotorasib (brand LUMAKRAS) that received FDA accelerated approval last May 2021.

I have a million questions and am looking for forums, especially, re:

These targeting drugs (especiallu sotorasib/Lumakras)

Stage IV cancer

Nice to meet you all!

 

 

 

 

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Welcome Oceanna,

Your mutation must be KRAS G12C for that is the variant that the KRAS inhibitor Lunmakras is approved to treat. And as you mentioned, the FDA only recently approved this drug in May 2021. I'm not sure how many folks we have on the forum with Lunmakras experience, but let's try and cast a wide net.

Anyone with Lunmakras treatment experience please chime in and give us the benefit of your experience.

Stay the course.

Tom

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Hi Oceanna,

I am still doing first-line treatment (keytruda plus radiation) for NSCLC adenocarcinoma stage 4. I have also been looking everywhere for info on sotorasib, as this would likely be my second line (fingers crossed I won’t need it). So apologies for latching on to your post - do post any good forums you find.

Good luck w your treatment, Rikke

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7 hours ago, Oceanna said:

THANK YOU to those survivor stories, especially you, Tom. It has given me hope.

This is my first time at a blog, so bear with me!!

I have stage IV, NSCLC, adenocarcinoma (non-squamous). I had (robotic) wedge resection in Jan 2020; spots outside of lung area appeared by end of year. In Jan 2021, had regimen of chemo (carboplatin and Taxol (plant-based)) and radiation (another doc - long story - recommended Carbo & Alimta); followed by immunotherapy (Durvalumab) that I stopped this week. Original spots (hilar area, etc) shrunk but some new ones appeared around ribs/chest area and lower boney area (illiac, sacrum and acetabulum) by end of 2021 (while others DISappeared).

Biopsy last week on iliac spot showed it is adenocarcinoma; genetic testing on original specimen showed two mutations, for KRAS & TMB. Path forward recommendation is targeting KRAS with sotorasib (brand LUMAKRAS) that received FDA accelerated approval last May 2021.

I have a million questions and am looking for forums, especially, re:

These targeting drugs (especiallu sotorasib/Lumakras)

Stage IV cancer

Nice to meet you all!

 

 

 

 

 

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Hi, Oceanna, and as Lou says, welcome to the club no one wants to belong to. I can’t offer much info because my mutations are different, but this is a good place for information. 
 

Karen

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Hi,  I have stage 3b lung cancer.  Have completed chemo and Radiation at Moffitt. Started immunotherapy but had to stop after 1 treatment because of lung inflammation. Put on predisone.  Breathing and coughing issues.  Admitted and loaded with antibiotics and restarted prednisone 100mg a day.  Now down to 80mm a day. Not sure what I am looking for just yammering?

 

Thanks, Nick

 

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Hi Nick,

Welcome to our Forums and sorry you need to be here.  My LC treatment was surgical only, but there are plenty of people here who will be able to share their stories about therapies similar to yours.  There is much to be learned from their experience.  We have many folks diagnosed at Stage 3 who are great examples of what today's treatments can do that wasn't possible even 5-10 years ago.  In the meantime let me make two suggestions for you.

  1. Take a few minutes to read a blog titled "10 Steps to Surviving Lung Cancer; by a Survivor".  It was written by Tom Galli and has invaluable information in it, regardless of where you are in your treatment.  It can be found here.

Please copy your post into a new one under this "Introduce Yourself" heading.  This way people can focus their responses on you rather than having them mixed up with Oceanna's responses.  

I look forward to learning more about your journey and you can rest assured that you'll find excellent support here.  

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16 hours ago, Karen_L said:

Hi, Oceanna, and as Lou says, welcome to the club no one wants to belong to. I can’t offer much info because my mutations are different, but this is a good place for information. 
 

Karen

thanks so much!

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18 hours ago, Nick Nicholson said:

Started immunotherapy but had to stop after 1 treatment because of lung inflammation. Put on predisone.  Breathing and coughing issues.  Admitted and loaded with antibiotics and restarted prednisone 100mg a day.  Now down to 80mm a day.

Hi Nick,

So sorry to hear you're going through this. I can relate-- I developed severe pneumonitis during immunology. At first it was considered to be a result of radiation, so I took several weeks off to let the inflammation die down (plus prednisone, of course). Then, when I restarted the immunotherapy-- mine was Durvalumab-- I became critically ill with pneumonitis and a pulmonary embolism to boot. (That's when I learned that when they say "Go to the emergency department," you really must go-- I didn't, and I was very, very lucky.) So that was the end of immunology for me. It took months for my inflamed lung to settle down; I was on big doses of prednisone from July through December. Now, I'm getting checked every 3 months and keeping my fingers crossed....

Sometimes folks come here to ramble. Sometimes to cry or vent. Sometimes to get answers to specific questions. It's all good, because what you'll discover is that you're not the only one, and that there are tons of us just rooting for each other.

All the best,

Karen

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  I am a Stage IV Lung Cancer (KRAS 12v) survivor and I was diagnosed in March of 2015 after the cancer had spread to my brain.

 I highly recommend you check out these sources.

LUNGevity recently opened a Patient Gateway specific to KRAS which you can find Here:  https://kras.lungevity.org/

LUNGEvity also has a Facebook page specific for KRAS folks here:  https://www.facebook.com/groups/KRASlung/?ref=pages_profile_groups_tab&source_id=50509907859

The KRAS Kickers has a website and Facebook page and is also excellent:   Website: https://www.kraskickers.org/ and the KRAS Kickers Facebook Groups is at this link:  https://www.facebook.com/KRASCancers/

LUNGevityVirtual Meet-ups are held weekly and now include one specific for KRAS once per month you can register for that or the general meet ups at this link - https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups

PS:  I was Stage IV at diagnosis and that that time the cancer had already spread to my brain.  Happily, thanks to treatments I amnow NED (No Evidence of Disease and will be a 7 year survivor next Month!  (March 2022)   THINK Postiive!  

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Wow, congratulations! It's always great to see referrals to helpful places. (My cancer is different, but once I began reading your post I kept going. Inspirational!) Wishing the continuation of everything good! ~joana

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  • 3 months later...

Hello Oceana again!

I just saw this thread and also want to piggy back onto your question here, hope thats ok!

Just to summarise about me for anyone else: I am 44, I have stage 4 colon cancer (mets to lungs as well), diagnosed when I was 39. I just started taking Sotorasib. I came here to find / share information because KRAS G12C is more prevalent in lung than colon cancer and Sotorasib is approved for lung, not colon yet.

And I am having a hard time finding people taking Sotorasib!  have some practical questions about the side effects. Has anyone any advice on how to find people taking Sotorasib? (I am going to look up that FB page "KRAS kickers")

I'm also new to message boards and forums, so apologies for the repeated information. I am going to continue searching now as well!

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