I hesitated in sharing because two of the very ladies posts that I clung to when first finding this forum are struggling with their partner’s health. I am forever grateful as they shared their triumphs because it gave me a sense of hope and eased my fears.
My dad went through 8 months of hell due to his severe reaction to IPI/NIVO and radiation. This summer his tumor was back to its original size and he was given two options. NIVO as a single agent or a second attempt to surgically remove the right auxiliary mass that was tangled and wedge in. The local surgeons all said, “no way - it was too risky due to location and fear and pissing off the cancer.” He knew he could not put anymore NIVO in his body as the quality of life was not worth the quantity.
We were able to get him healthy enough to travel to Huntsman Cancer Institute where we found Dr. Hyngstrom thanks to the oncologist Dr. Hu.
Dr. Hyngstrom was able to successfully remove the mass and preserve all the nerves. He also shared that the reason the tumor was growing was due to all the dead cancer cells. He said once he was in he could not find evidence of live disease.
Words can’t describe how excited were were and yet so for lack of better words shocked at the difference in approach to the situation.
At home he would have chose to live his best life under the impression there was no hope with a swelling tumor due to his choice not to continue treatment. One doctor’s willingness and experience completely changes the situation.
We are awaiting pathology reports this week, but the most important lesson is not to stop searching and asking questions- lessons I learned from this forum.
All of you are in my thoughts and prayers.
Cluster in unrelated family members (son-in-law and mother)
New diagnosis -76 year old mom
My daughter has passed