Bob’s Story

Site created on August 28, 2020

Welcome to our CaringBridge website. I am using it to keep my family, friends, and colleagues up to date about my condition and progress fighting cancer.
Thanks is for stopping by!
Bob

Newest Update

Journal entry by Bob Sachs

... and I took the one less traveled by, and here's hoping it makes all the difference!

Happy Summer Solstice and Juneteenth +2 days. It has been 328 days since I was diagnosed and I am feeling well. At the last check in I had just begun my second type of treatment, immunotherapy with pembrolizumab, aka Keytruda. At my 5-27 appointment, my oncologist recommended we try a different option. The results with Keytruda were not effective, and there was some disease progression in my lungs. He recommended a clinical trial at the National Cancer Institute in Bethesda, MD. I have met and communicated with NCI a lot since then, had tests, questionnaires, bloodwork, scans, and more. I was confirmed to be eligible and asked to participate on Friday 6-18, and will begin treatment tomorrow, Tuesday 6-22. I will still have my primary medical oncologist at Hopkins, and he will be regularly updated with key data and results, but the treatment will occur at NCI.  This also means that my insurance will no longer be billed for all of the treatment, scans, blood, etc.- everything is covered by NCI for the trial. 

In the meantime we have been living and working, with an emphasis on living.  Tori and I went up to our family home in the Adirondack mountains for 16 days, returning to Alexandria on June 12. We had a great visit with nephews Jamie and Sam, Sam's wife Melissa, and Jamie's son Quinn for memorial day weekend. We were then able to work full time while there with the bonus of that idyllic environment, i.e. our favorite place in the world. Tori's  office was in the living room with a huge fireplace at an actual desk, and enhanced by sound cancelling earphones to keep the bird noise down.   My office shifted between the kitchen next to the wood stove during the 40 degree days, and the  octagonal deck during warmer days, It was spectacular. We were able to get out for walks and a little hike or two. I was able to climb one of the smaller mountains (Hopkins) with my nephew Sam during the second week, and was super gratified that it was not as hard for me as I presumed. We were prepared for me to not make it to the top. We were happy to have a lot of visitors during our time as we emerge from the pandemic. Our friends Kristen and Jay came up from Schenectady, brother Rusty and wife Marlene came over from Vermont, as did niece Hannah and boyfriend Ben.  My sister Ann, husband Roger, and son Sam came up for the second week.  And we got to see Nephew Kelly, niece Lydia, her husband Gabe and great nephews Gus and Otto. Busy! While we were there we also met with our tree and road guys, and are working to finalize cutting trees and building a driveway on our land this summer! Hoping we will get a a look at what our view is once we finish that. While in Keene Valley, and at home, we intentionally  remind ourselves how incredibly fortunate we are, and wok to not let ourselves forget it. 

This past weekend we went to Cleveland with Na'ava to celebrate what would have been Steve Velkoff's 100th birthday (6-21-1921). We met up with Tori's brother Chris, his wife Dee, and nephew/niece Milo and Sava. We visited Tori's Macedonian grandparents, uncles, and others at a cemetery and sprinkled Steve, Barb, and Michelle's ashes there. Lots of eating and visiting, it was great! And now home again.

Back to the other business. The clinical trial is set up and works as follows:  The trial is for one year. It is a combination immunotherapy using three previously demonstrated biological medicines. This trial is the first time that all three are being used in combination with one another, and some early results appear promising. An interesting note is the trial is targeted at all HPV positive cancers, so it is broader than the metastatic head and neck cancer variety that I have.  I will get infusions (IV drips) every two weeks of one medicine, and two injections every four weeks of the others; those will taper off after a several months. Each infusion day will be a 6-7 hour affair, so I will be looking for new music suggestions and other diversionary tactics.  There will be CT scans every 8 weeks, and probably biopsies mixed in for added flavor. The first indication of results should be after the first scan in mid august. They let us know last week that I will be getting Benadryl as a protective measure with each infusion. As such, they don't want me to drive.  Then we were informed that transportation is provided via taxi or Lyft or something, so they will pick me up and drop me off! #easy-peasy #ourtaxdollar$atwork

That's all for now. Feeling happy and positive,  and continuing to make lemonade because when life.... you know what I mean.

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