Kyle from Utah - Dx 2019

[ky7le]

I really appreciate everyone's guidance and support on here. It's really hard to advocate for yourself when you don't know what to even push for. It's been really helpful.

I've now had a brain MRI and full body bone scan. Both came back clean with no signs of mets. I have an appointment scheduled with medical oncologist Dr Anna Chalmers at the Huntsman Cancer Institute. Hopefully she'll want to be a little more proactive, and start treatment sooner rather than just kind of waiting and seeing how things progress. I was able to get discs with all the images from my scans, but I'm still working on getting all the other documentation from my visits including the pathology report. If when I get them there is an addendum with the pathology report I'll let you know Debbie.

Again, thank you to everyone helping navigate this.

[D.ap]

Kyle
Let’s us all know.
But thank you so much for letting us know .
All are here to listen and most certainly to give advice.
What bothers me , is how our wishes can be discounted without discussions and or well founded bases.
I know as caretakers and patients we are not all knowing.
But oncologist sometimes are in the same boat.😕

Love ,

[ky7le]

I had an appointment with a medical oncologist at Huntsman Cancer Institute. They said the first treatment they would want to try would be Keytruda. However with the minimal amount of growth shown so far they want to wait until at least one more scan showing growth before beginning treatment. My next scans are scheduled for August. They said sometimes it can take a while to get insurance approval for the treatment so they are starting the process to get approval now. That way if my next scans show growth we can start Keytruda immediately.

I've seen a lot of people mention using an ICI along with a TKI. Is that more common than just using an ICI? Are some people responding to just Keytruda without a TKI along with it?

[Olga]

We have numerous cases of the good responses to TKI alone and to combination. We have been thinking as what to start and decided on Keytruda alone based on the advice we received from the experts, that we can start from a single drug and see if there is a response, and then add the TKI later if there is no response or if it stops working. Ivan started from Keytuda alone to check how is he going to react on it then the radiosurgery to the soft tissue met+Keytruda was added to the second dose on the same day, to improve the recognition by the immune system. Was on K alone for two years, 4 months off treatment due to autoimmune side effects. Immune system recognition of the tumor is ongoing past treatment and controls his disease, all recent scans are stable no new mets some regressed some look like scars.
in short there is no consensus and no uniform recommendation. We are very carefully choose any additional interventions as ICI is immune system based and you want to be as healthy as possible. If nothing grows, take you time to build some muscles and healthy guts.

[ky7le]

Update, I'm starting Keytruda today.

My last couple scans have shown small incremental growth in lung mets. Each scan they say about half of the mets were unchanged, and the other half grew about 2mm. Then the next scan they say the other half were unchanged, and the other half grew about 2mm. Seems like they are all growing about 1mm every 3 months, and they only show measurable growth over a 6 month period. My doctors haven't wanted to start systemic treatment until we could either biopsy one of the nodules to confirm mets, or show enough consistent growth over enough time to assume mets. The largest nodule has now reached 10MM which now meets both criteria. My doctor wants a biopsy to confirm asps mets %100, and for a more detailed pathology report. However, they are willing to start the Keytruda treatment even if I opt to not have a biopsy. Seeing some of the concerns others have had about a needle biopsy I have decided to not have one done, and just start treatment.

Wish me luck!
Kyle

[Olga]

Absolutely! We wish you luck. The biopsy is not needed, and just damages your lungs unnecessarily. This is the growth picture and the low speed typical for ASPS lung mets, there is no need to biopsy them as long as the primary tumor is proven to be ASPS.

[Naynay]

Hi Kyle,
Agree with Olga here! The mets shouldn't have to be biopsied to start immunotherapy. Typically, I don't think lung biopsies are even possible until the met is bigger than 1cm - and even then, a lot of dr's are hesitant. The beauty of immunotherapy is if it begins working, the biopsy was never needed to begin with.
A lot of people in this forum have had some amazing results with Keytruda, my partner included. I wish the same for you. Good luck!