Checking in - Keytruda

[Suzanna]

Hey everyone! It's been a while since Adam or I posted. I have been busy with work and school, and Adam's work in economic development is pretty heavy with the pandemic recovery. Back in January when he was fortunate to receive a NED diagnosis, his oncologist elected to continue his Keytruda infusions every 3 weeks for 2 years. His original treatment was the triplet - carbo/pem/pem. His last set of scans at the end of June showed continue progress, so the oncologist is taking him down to every 6 weeks. He didn't have many side effects initially, but recently he has had lots of skin issues - rashes, itching, and extreme sensitivity to hot water (which we learned on our first vacation since diagnosis where we spent way too much time in a hot tub). The only other thing that we can see is the ever-present fatigue. Some days are relatively normal, others involve several naps. We just go with it. I think all things considered, we're still extremely fortunate for the minimal side effects. 

We are always sending our best to everyone in this group! 

Suzanna

[BridgetO]

Thanks for the update. I wonder whether a dermatologist could help with the skin issues?

[Suzanna]

1 hour ago, BridgetO said:

Thanks for the update. I wonder whether a dermatologist could help with the skin issues?

I think that is the next step his oncologist wants to take. He prescribed some cream and if that doesn't help, I think the dermatologist will be next. 

[Tom Galli]

Suzanna,

NED! Wow, that indeed is cause for celebration!

I'm so glad you shared a vacation; take every opportunity to do so. Skin problems are a common side effect with immunotherapy and hopefully a dermatologist will have solutions. 

But, NED is a wonderful outcome. Here is hoping for continued NED scans.

Stay the course.

Tom

[Suzanna]

30 minutes ago, Tom Galli said:

Suzanna,

NED! Wow, that indeed is cause for celebration!

I'm so glad you shared a vacation; take every opportunity to do so. Skin problems are a common side effect with immunotherapy and hopefully a dermatologist will have solutions. 

But, NED is a wonderful outcome. Here is hoping for continued NED scans.

Stay the course.

Tom

Thanks, Tom! We are still celebrating! I know the skin issues are irritating for him (no pun intended), but they are minimal compared to some of the other things he could be dealing with. 

[Rower Michelle]

Hooray for you guys!  That’s awesome news!  Fatigue seems to come with the Keytruda territory. A number of members in my group have had palliative care appointments where Ritalin has been prescribed to improve energy levels with good results.  Maybe worth considering? Doing a happy dance 💃 for his good news! 

[Suzanna]

12 hours ago, Rower Michelle said:

Hooray for you guys!  That’s awesome news!  Fatigue seems to come with the Keytruda territory. A number of members in my group have had palliative care appointments where Ritalin has been prescribed to improve energy levels with good results.  Maybe worth considering? Doing a happy dance 💃 for his good news! 

Thanks for that tip! 

[Good Bro]

Great news Suzanna.

If you don't mind me asking, what was Adam's PDL1 levels?  Just wondering as my brother's onc has him on the triplet treatment now still.  He will have his 5th infusion tomorrow.  1st rescan showed some response to treatment but his 2nd rescan isn't so clear yet.  He will discuss with his onc tomorrow before his treatment.  His understanding of the report is that maybe mostly stable but maybe with a new met in his hip area.  He has mets to his brain and spine, no targetable mutations, and negative PDL1.  So, about as grim as it gets for the diagnosis.  However, this Keytruda drug really seems to be a miracle drug.  So, looking for some stories where it has worked miracles on survivors with no PDL1.  

Again, congrats to you and Adam on the NED.  I am so looking forward to throwing an NED party for my brother some day.