Diagnosis

[Johnny]

Hi all!

After needle biopsy, PET, and CT scan my oncologist at Fred Hutch Cancer center told me today I have stage 4 LC.  He's now trying to determine if it is smoking related or genetic. They took some blood for the Guardant360 genetic test and is getting PD-L1 information as well.

He says the treatment will vary according to what these tests say.  If genetic, treatment can be oral meds, until they stop working.... those dang tumors can be tricky.

He says the PD-L1 will determine if I can just go the immunotherapy route, combine with chemo, or just chemo. Since I have very mild MS he said immunotherapy could possibly turn that mild MS into something ugly but will cross that bridge when we get there. 

I have had pain in my back and when breathing deep and sleeping isn't easy. He said the best thing for the pain would be opioids. I resisted but he told me they won't award me any medals for suffering and to just give them a try. I hate opiods for many reasons but one side effect I noticed in the past is constipation. 

If I can answer any questions about my journey so far, ask away! 

 

 

 

 

 

 

[RJN]

Ooops - sorry - just realise you have been on here a while….
 

Hi Johnny, welcome to the forum. Sorry to hear about your diagnosis. Of course no-one wants to be here, but plenty of good advice as you move along the treatment.

Seems like you are already trying to get your head around your options. I know a couple of folks on here will no doubt offer you some general guidance, so just a few things your post mentioned. 
1. It is frankly a very very outdated way of looking at LC as smoking or genetic, and I am quite gobsmacked that an oncologist will use such language. I can only hope the doctor in question tried to make things simpler, but IMHO this is an unhelpful and largely irrelevant distinction. While it is true that certain lung cancer types and certain mutations favour smokers, this isn’t an either or. Regardless of the cause, it is the mutations and PDL that determine whether targeted therapy (tablets) or immunotherapy are likely to work. My cancer is likely linked to smoking, but I have been on immunotherapy and my next line will likely be a KRAS inhibitor (a tablet). Reversely, I have never-smoking LC buddies where chemo was the only option. 
 

Another thing you should ask about is radiotherapy. There is increasing evidence that a combination of systemic treatment and radiotherapy may be a winning combo.

2. Re opiods, I am with you and would rather stay clear. When I had some pain early in my treatment, I found that codeine and paracetemol combined did the trick. While codeine is in priniciple an opioid, it is much weaker, and not linked to significant risk of addiction. Still a bit of issues with constipation, but not as bad as the stronger stuff…

Finally, do not look at statistics. They are completely out of date and tells you very little about the current treatment environment. Many of us are alive and living a fairly normal life years and even decades after diagnosis. 
 

Keep us posted,

Rikke

[Tom Galli]

Johnny,

Rikkie's suggestions are good, especially about what caused your lung cancer and survival statistics. All that matters now is how to treat it.

Your genetic testing will reveal if your cancer can be treated with Targeted Therapy or Immunotherapy. The former only works with a small percentage of those with adenocarcinoma. Immunotherapy can work with all forms of lung cancer and I know folks who take it with MS. So let us know what the biomarker testing reveals.

I have too much experience with pain and I try and avoid opioids also. My avoidance challenge is sleeping. My doc prescribed Xanax to be taken about 30 minutes before bedtime. It relaxes me enough to allow sleep, sometimes. When my post-treatment symptoms combine to elevate my pain level to intolerable, I use Tramadol. It is easier for me than other pain meds, and I concurrently use laxatives to avoid constipation.

Stay the course.

Tom

[Karen_L]

Johnny, 

I'm late to this discussion, but I wanted to second and thrid what Tom and Rikke have said. And, add that a tissue biopsy is considered the gold standard. I hope that's already happened, or is on the calendar. 

Best wishes,

Karen

 

[Johnny]

Hi Karen,

I'm assuming the needle biopsy I mentioned and the tissue biopsy you mentioned are the same.

I start Carboplatin/Pembrolizumab/Pemetrexed treatment on Wednesday.  I have it again 3 weeks after then a CT to see if the tumor shrinks.

 

J

 

 

[Karen_L]

You know, Johnny, I read your post so quickly I overlooked that initial phrase-- sorry about that. Yes, I would assume that needle & tissue biopsies are the same, especially given the doctor's comment about waiting for results. (Tissue-based biopsies take several weeks.) 

Fingers double-crossed that the infusions go well and that they deal the tumor a mighty blow. 

Karen

[tgif i guess]

i had the same chemo - carboplatin and pemetrexed (alimta) mixed one day - pembrolizumab (keytruda which is immunotherapy) the next day - 3 week cycle

third day i had a neulasta type shot to boost white blood cells

i did that for about 8 months until remission (i was stage 4) - after 2 negative pet scans, he dropped the carboplatin and neulasta

i do take folic acid pills daily, b12 shot monthly

on chemo day i take steriods the day before, day of and day after (the carbo and alimta day)

when you get infused, they mix other stuff in the bag - like steroids or Benadryl or nausea meds - sometimes a separate bag

i have tolerated it well - no nausea or hair loss - blood work was normal and it has me in remission - my biopsy (lymph node) showed the cancer is genetic rather than smoking - my guess is it is either mesothelioma or something akin to it - so yes, there is a difference

i hope the regimen is as easy on you as it has been for me - and it works for you too 

[tgif i guess]

oh - and blood work every 10-12 days

always a cbc - usually a cmp - about every other tine a cea

you can get all your reports online and read them yourself - they have your reading for each catagory of the tests and show the normal range - not too mysterious

i like the cea - i call it the cancer test for dummies - a cancer test (though there is more to it than that, im sure) normal is 0-something - for smokers its 2-4 (or something like that - i started at 55.8 and now back to normal range

i like this site for an explanation

cbc

https://labs.selfdecode.com/blog/cbc-blood-test/

cmp

https://labs.selfdecode.com/blog/comprehensive-metabolic-panel-cmp/

 

[Johnny]

Hi tgif,

Thank you so much for responding!

I had a bag of Pemetrexed followed by the Pembrolizumab and finally the Carboplatin. It took about 90 minutes.  
I go again in 3 weeks for the same.

I’m taking folic acid and ferrous sulfate, since the are telling me I’m anemic. I also need to take steroids the day before and after treatment. they also give it to me by IV the day of.  I also am getting the b12. The team has been really good about explaining my blood work and your links are great!

It’s been 6 days and I feel blessed because so far I am doing ok. A bit more tired than usual but I think that is the way this works.   I did wake the day after treatment with crazy chills, but they subsided in about 2 hours. No nausea so far but I sure am constipated and nothing I’ve tried so far is working. . I am losing weight like crazy but appetite is good and I’m eating everything.  :)   

Thank you again for sharing your journey and your well wishes, it certainly made my day.

[Karen_L]

Hi Johnny,

Oh, don't I know about constipation.... I was told prunes (lots), magnesium 200-400 mg per day, tons of water. Sometimes it seems to work....

Keep on keeping on,

Karen