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.
Written by
carlsbad317
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Carlsbad317, this is such wonderful news. Thank God your dad has you, and they were able to surgically remove the cancerous tumor. Praying all tests come back well.
I really do learn a lot from this site and all you wonderful people.
Second opinions from clinicians who think differently than the primary person treating cancer can often be helpful. One of the persons in our melanoma support group has also had "spaces" where the CT/Pet/MRI can't tell clearly if the mass is dead or alive tumors.
I'm so very pleased for you and your dad that you were able to locate a skillful surgeon who was able to address the tumor, remove impingement, and give clarifying information in this case.
I stand in hopeful anticipation with you for pathology reports.
And I encourage you, and all, to share what your experiences are: the good, the bad, the ugly, the unknown. That is the only thing that makes this a truly safe and valuable place for melanoma caregivers. When one of us triumphs. we all get to rejoice. When one of us struggles, we all bear witness and offer support.
Thank you so much for sharing this news! May I ask if this is/WAS your dad’s only tumor? And did PET show that it was active when it actually wasn’t?? Or was it rather that it was growing, so assumed to be active (I had know idea dead tumors can grow but I guess that is pseudoprogression?).
And what led you to Huntsman?
Sorry for the questions, but it’s soooo helpful!!!
So happy for your triumph and hope your dad feels better every day! X
The scan reflected a live and thriving mass. He had one other one and a little something on his lung that was not something but caught their attention. They took about 50 lymphnodes out with the mass.
We live in Las Vegas and we’re looking for places on the west coast. Dr. Hu’s specializes in melanoma and was involved in many trials at UCLA- she had recently left there and joined Huntsman.
What an amazing place it is! Everyone cares, everyone has direct communication and is up to date. For instance yesterday he was seeing the “butt doctor” he had fistula surgery as well while there and the oncologist surgeon popped to the appointment just to see how he was.
So very happy for you and your dad. And yes you are so right, we should never stop trying and question everything, always go for second opinions if we are not yet comfortable with the path offered. Please keep us posted!
Are you a member of the FB group Melanoma Warriors? Just saw a post there by someone asking about Huntsman and a member replied with his very positive experience with dr Hyngstrom too!
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My daughter has passed
