Tiny recurrence-here we go again!

[Barb1260]

After almost 5 years, a nodule that has been in my right lower lobe since 2020 exploded in 3 months to 1cm with an SUV of 6.4.  Finished SBRT on November 6th. No other issues found on PET, thank goodness for that. Now going on Keytruda and I’m nervous. Did a year on Imfinzi for the first go round and had no issues or side effects. Losing sleep over this. Any one have any words of wisdom?  Will Keytruda be worse than Imfinzi?  

[LouT]

Hi Barb,

Sorry to hear about your situation.  I just completed my 5-year scans this past August and although I'm still NED I'm always aware of the possibility of a recurrence.  From many posts I've read here over the years it seems like SBRT is a great tool to get rid of cells while minimizing damage around the affected area.  My treatment was surgical so I don't have personal experience regarding Keytruda or Imfinzi, but I as part of my role in Lungevity I have read about both treatments.  While biologically different they both are recommended for a situation like yours.  Looking over a list of potential side-effects it would appear that Keytruda has a few less potential ones than Imfinzi, but of course each person can react differently to any medication.  We do have a forum covering Immunotherapy and there are posts there regarding treatments.  You might want to take a look there to see what others have posted.  You can find that forum here.

Being fearful and anxious is so normal and understandable.  I can only tell you what works for me whenever anxiety rears its ugly head and get out of control.  I try to focus on the "here and now", stay connected to the people around me, and do things that are pleasing to me and fun.  I realize this may sound trite, but LC was my second cancer (my first was colon cancer) so I'm not unfamiliar with the despair this diagnosis brings.  If all normal actions fail please don't hesitate to seek professional help.  There is absolutely no shame in it and it has helped many.  

In the meantime, make sure you keep your doctor aware of any side-effects you do experience so they can be attended to quickly.  I'm sure others with more direct experience will post soon, but please keep us updated on your progress.  Others will learn and grow from your experience.

Lou

[edivebuddy]

The same treatment advice and warnings you got with Imfinzi are going to apply to keytruda. Keytruda does have a higher chance of side effects.

While the two target the same mechanism they the target different ends. Imfinzi targets PD-L1  which generally is on the cancer cell.  

Keytruda targets the PD1  protein on the immune cell .

They both aim to stop the PD1/PD-L1  interaction.   

PD-L2 also binds to PD1.  Since pembrolizumab blocks PD1  it has the ability to fight cancers expressing PD-L2.  but like PD-L1,  PD-L2 is expressed in deathly tissues.  Especially the lungs.   This means pneumonitis is slightly more likely to happen with keytruda.  As well as other side effects in tissues expressing PD-L2.

Non small cell lung and squamous cell head and neck cancers are the two most likely to express PD-L2.  The two concurrent cancers i had.

I've been on k Keytruda for over 4 years.   It causes some fatigue.  2 or 3 out of 10. Arthritis is slightly worse.   I still keep track of everything and report even the smallest of changes.  It's a little hard for me because I'm also on avastin which has it's own set of side effects with many overlapping with the keytruda.

1 cm in 3 months is far from exploding.  I had tumor grow way more in days. Keytruda took care of all of them. 

 

 

 

[Barb1260]

Thank you. I said exploded because it was there for years before it did anything. 

[Barb1260]

Thanks Lou. I will update and look into all you suggested