Not the worst news

[LexieCat]

OK, turns out to be adenocarcinoma (whew--NSCLC, thank god). Stage IV, but doc says it WOULD have been Stage III but for that spot on my spine. 

He laid out 3 possible treatment paths, depending on results of molecular studies (which will take another week or so). (1) The "standard" treatment for Stage IV (absent any driver mutations) would be Alimta/Carboplatin/Keytruda. (2) Alternatively (absent any driver mutations), would be a much more aggressive therapy suitable for Stage III--Alimta/Cisplatin with radiation to chest and followup radiation to sacrum, if needed. (He said he personally had his doubts whether the results would be worth how sick that would probably make me feel.) (3) If there's a targetable mutation, then start off with the targeted therapy indicated. 

He will be away next week, but in the meantime, I have a brain MRI currently scheduled for August 25 (sooner if they get an opening) and also an appointment with the radiation oncologist. 

So, considering the possibilities I was facing, right now this is feeling like relatively good news. I was expecting Stage IV, so no surprise there. I'm relieved it's not small-cell. Hopefully get a good mutation or two. Spot on sacrum can be "spot-welded" (yeah, he actually DID use that term). I feel like this is all stuff I can cope with.

Thanks for the good vibes you all sent this morning--they definitely helped!

[Tom Galli]

Teri,

One is never happy about learning about a stage IV diagnosis. I am happy you have a physician who is not shying away from aggressive treatment. Spot weld away!

Stay the course.

Tom

[Rower Michelle]

Well that’s a relief for you!  Alimta is one of those chemo agents that requires a B12 shot.  You might ask about getting that now, since you’re being so proactive.  If you have to got that route, then it’s a week to start treatment while starting folic acid supplements concurrently.   
If you end up taking some of the “happy pills” no harm with the B vitamins (which frankly you need anyway since targeted therapy is a energy zapper).  
 

Gotta love these radiology terms, the other term is weeding the garden!  
 

The choice between Cisplatin and Carboplatin is worth thinking about.  The Cisplatin is pretty aggressive but it’s fairly short term.  I’d probably elect for the most aggressive treatment first.  It there wasn’t a targeted therapy available.   
 

If there are no mutations I would definitely consider a second opinion to weigh in on the treatment plan which can be done virtually now. A friend of mine actually got three opinions before starting treatment (at Stage IIIb) and that made the difference as she’s NED today.  
 

Almost time to get the show on the road.  Keep at it! 
 

Michelle

[GaryG]

Now nothing better than having multiple choices and a workable outcome. So let's see what can we worry about next?   I am sure you and your medical team will come to a happy outcome and you will be on your way to N E D land. Let's hope and pray.

[BridgetO]

Yep, could have been worse. I'm glad to see that you're in a good frame of mind to get on with treatment once you have all the info you need. I'll  be thinking about you.

Bridget O

[Babs]

Well finally some answers and a plan.  Happy for you it’s not small cell.  If you end up with plan 1 or 2, did they say how often your treatment would be and for how long possibly?  I know now that I have a plan I’m super anxious to get going. 
 

Keep us updated on how things are progressing
 

Take care,

Babs

[ColleenRae]

I, too, was happy to hear this remains NSCLC (if it's gotta be here at all!). This alone made me feel hopeful.

There is so much to learn as you move forward and I find it amazing how much you have already educated yourself and what you have learned (and can re-regurgitate). There are so many wonderful people here supporting you with just amazing information.  I'm trying to absorb it all myself, knowing I may one day follow in your footsteps and those of others here.

Very glad to hear this is all stuff you feel confident in coping with. What a strong person you are! I can't offer anything as far as treatment advice, but you are here in my mind and heart... wishing you the best in every step of this journey.

[DebM]

Happy to hear that it's NSCLC.  Glad that you have options and it sounds like things are moving in the right direction.  

Hoping for quick results on the rest of the tests so you can get going on your plan soon.    

Take care!

 

 

 

[jack14]

Yes, that sounds good to me too. Hang in there, things will work out.

[LexieCat]

2 hours ago, Babs said:

If you end up with plan 1 or 2, did they say how often your treatment would be and for how long possibly?

He did tell me, but there were so many details being tossed around in a 30-40 minute visit (and I had certain questions I needed to ask) that I don't recall what he said about that. That was a detail less important to me than some of the others. It would have been nice to have someone with me to take notes, but right now they are strongly discouraging non-patients from coming in. If it becomes critical to have someone looped in I'm sure there are ways that could be done. 

Once we are down to deciding which treatment (after molecular studies back), I can drill down on some of those details.

 

[LexieCat]

Out of reactions I can post at the moment, but thanks so much for the words of encouragement. I know I wouldn't feel as strong facing this without all of you.

Hope to see some of you at our Zoom this eve.

[Lin wilki]

So glad you have options!  And maybe you won’t even need to decide once you find out if there are mutations to target 

I just wanted to congratulate you on not terrible news!

i won’t be on zoom tonite since I am overwhelmed with fatigue and headache from treatment on Tuesday. But is it worth it. It’s killing the tumors!

hope to see you next week

[Sabacat]

Great news that you have multiple options, and maybe more if the mutations come through.  Definitely "not the worst news" 😊

Will be thinking of you as you sift through the options,

Susan 

[Susan Cornett]

So happy for you that it remains NSCLC. Now we'll keep those fingers crossed for your MRI. I've taken Cisplatin/Alimta and Carboplatin/Taxol. Once you get your plan, check out chemocare for information on side effects and options to mitigate them. It's a wonderful site run by the Cleveland Clinic.

Hoping you can exhale a bit for a few days. 

[LexieCat]

I just posted on FB about my diagnosis (I'd told a few friends but it gets tiring telling everybody), and my former oncologist (who's now in Minneapolis) sent me this private message on FB:

"Since I’m not your doctor anymore I can say this: fu__ cancer"

LOL, I miss him and his wild socks....

He asked me what treatment plan was proposed and he said he'd be inclined to go with the more aggressive Stage-III treatment with radiation to sacrum. He did tell me, though, about a trial he was working on when he left that he thought I'd be a good candidate for if my PD-l1 is high enough. He asked me to keep him posted and assured me he cares about how I'm doing. 

[jack14]

There are apps that you can use to record your encounters with, which can even transcribe. In fact you can use your video cam for that matter to record just the audio. You should ask the doctor if they mind and I bet they won't have a problem at all with it. You will be signing an agreement of understanding and permission in regards to the treatment you submit to, so there aren't any real liabilities of any concern for the doctor regarding what he says or doesn't say

[Babs]

9 hours ago, LexieCat said:

I just posted on FB about my diagnosis (I'd told a few friends but it gets tiring telling everybody), and my former oncologist (who's now in Minneapolis) sent me this private message on FB:

"Since I’m not your doctor anymore I can say this: fu__ cancer"

LOL, I miss him and his wild socks....

He asked me what treatment plan was proposed and he said he'd be inclined to go with the more aggressive Stage-III treatment with radiation to sacrum. He did tell me, though, about a trial he was working on when he left that he thought I'd be a good candidate for if my PD-l1 is high enough. He asked me to keep him posted and assured me he cares about how I'm doing. 

That’s awesome!  He sounds wonderful!  Sounds like we’re lucky he moved here. 😊☘️

[Deb W]

Hi Lexie,

Thinking of you.  glad to hear it's NSCLC.  It's so hard to remember everything they say.  I use my phone to record the conversation.  My oncologist doesn't mind.

All the best,

Deb

[catlady91]

You sound like a very positive person LexieCat. Many people would be devastated by such a diagnosis but you've taken the news very bravely. I guess lung cancer even stage 4 isn't a dire prognosis anymore. My mum was diagnosed with stage 3B which in the past had a dire prognosis. My mum's consultant said that 10/15 years ago it would have been bad news. 

There are so many treatment options and new treatments being approved all the time. I've heard in same cases that stage 4 can result in NED especially if it's only spread to one area. It seems like it's very small and contained in the spine. You medical team sound positive with a good treatment plan.

There's every reason to be positive. 

[LexieCat]

Yup, now you just get busy and start taking that advice you gave me!  I know, it's always easier to tell other people to be positive than to feel it yourself, but a lot of this attitude really does come from self-talk. For most people, there is a plan A and if/when that doesn't work, a Plan B, and so on. COULD those options eventually run out? Sure. But to me, there's not a lot of benefit in extending my life if all I have to look forward to is worrying about when that day might come. Can waste a whole lot of good years that way.

Keep practicing being positive--it works!

[catlady91]

I've been worrying less lately. I still have fears, but so does everyone with cancer or a loved one with cancer. My mum's NED status still needs to be confirmed and hopefully the radiographer specialist will confirm it, but I'm not going to sit around worrying whether the oncologist got it wrong and what if the scan shows there's still cancer. I have a lot of faith in my mum's medical team and they've been excellent and positive so far. I just thank God that she's received such top-notch care and treatment and that she was able to undergo treatment during COVID, as unfortunately many people with cancer in the UK have had their treatment postponed.

Life is unpredictable and imagining the worst-case scenarios doesn't help. I'm just to exhausted to worry. I feel that the good news have alleviated my worries and I'm not going to focus on what might or might not happen or what Dr Google has to say.

I hope that your treatment goes well LexieCat and that there aren't too many side-effects. Your positive attitude is so important and will really get you through this, like with my mum. Having a positive attitude makes you open to possibilities, whilst a negative mind-frame makes you see limitations. I know family members who have a negative attitude about life and because of that negative attitude, they don't bother trying. Luckily mum has always been strength and positive and I think that deep down I am too.

Keep us posted on how you're doing. 

[catlady91]

Also I have something new to look forward to as my mum and I are planning on getting a cat! 

[Sabacat]

I’m out of likes for today, but great news on your plans to add a cat to your family! 😻😻😻

[jack14]

Hope everyone is feeling ok and in good spirit.

[LouT]

Lexie,

Sorry I missed this...and I've been on the forum so I don't understand it.  I join in with the rest of our family here; rooting for you and knowing you and your strength and determination I'm looking forward to the day when you are back where you need to be.  I'm so glad is is NSC and I offer this advice; "please leave any "catastrophic thinking" to me as that was my specialty.  I know you'll stay strong and focused on your treatment and recovery.  And, of course, we'll all be here for you.

Lou