Sam from Florida - Dx 2007

[D.ap]

Hi Cindy ,
Josh has always used an oatmeal mixture of raisins & nuts for a boost to calories for weight gain , since 2015.
So that definitely is a fiber usage .
Is Sam’s weight disproportional to what he should be , for his height ?
If that’s the case it maybe time to reduce his weight to help his knee to heal , if he has knee replacement?
Glad you are getting the orbital tumor removed.
Other than the possibility of the plate deteriorating, is it causing Sam issues ?

[jcs2007]

Sam is now just doing 3 week regimen of Opdivo without Yervoy. His oncologist may add the Yervoy back in the future if needed. He has begun pre op for removal of the orbital tumor on 10-20. We are very happy that the skull met is no longer visible on the MRI and his sternum met has “melted away.” After the brain surgery, we will re-evaluate his knee but luckily it isn’t hurting him as long as he takes it easy. Unfortunately, he has pain in his eye and head so he wants to do the surgery. He isn’t interested in dieting at the moment but trying to add som fiber and protein. Thanks for all the input all these years!

[D.ap]

Hi Cindy !
Wow the reduction and disappearance of tumor masses , is incredibly good news !!

How big is the mass at this time ?

Thank you for the update and do let us know how Sam is doing .. especially after his surgery on the 20th of October.

Love ,

[Bonni Hess]

Dearest Cindy, My Birthday is on the same day as dear Sam's October 20th occipital surgery, and my special Birthday wish is for Sam to have a VERY successful outcome to his surgery, and a speedy recovery and healing as he continues his VERY courageous and challenging ASPS journey. I will be anxiously awaiting your next update as I continue to hold you and dear Sam VERY close in my heart and MOST caring thoughts with VERY best wishes, warm Friendship, love, and continued Hope, Bonni

[jcs2007]

I’m sorry I haven’t updated on Sam in a while but his 10/20 brain/Occipital surgery went well( happy belated birthday Bonnie🤗). However, he developed seizure activity so he now takes Keppra. Then, in February the stupid tumor grew from the sphenoid bone again into the occipital space so he needed radiation since more surgery wasn’t recommended and he had radiation to his rib tumor since it was causing pain. His doctors decided to add yervoy back to his regimen which now he has pneumonia and pneumontitis so taking antibiotic and steroid inhaler. On a positive note, lung tumors shrank and knee tumor is stable. Never a dull moment with ASPS. We look back on 2009-2016 with hope since It was a time of stability. Hugs to all!

[D.ap]

Hi Cindy
I’m sorry to hear about Sam’s seizures .
Will he be on Keppra from here on out or is it temporary?
Olga had posted an article on the possible immune suppression affects of Keppra in a discussion with Sharmaine back in 2020,
https://cureasps.org/forum/viewtopic.php?p=15089#p15089

What’s interesting is the conclusion of the link

“Conclusion

LEV decreased degranulation of CD8+ T lymphocytes which may contribute to the increased incidence of upper respiratory tract infections in LEV treated patients. Inhibition of SV2A may be responsible for this effect.”

Josh was on Keppra and had quite severe side affects .
Hope today finds Sam feeling better.
Love ,

[Bonni Hess]

Dearest Cindy, Thank you for your thoughtful update and very kind belated Birthday wishes in the midst of all of your ongoing challenges with dear Sam's very courageous ASPS battle. I am so grateful that Sam's 10/20/23 brain and occipital surgery went well, but am very sorry that he developed seizures. Our dear Brittany heartbreakingly also experiences occasional seizures for which she also takes Keppra. It has not been determined if her seizures are caused by her ongoing debilitating severe pain and side effects from her major spinal surgery in 2008, or from her brain tumor surgeries and Gamma Knife procedures many years ago. My heart breaks for dear Sam's renewed tumor growth and pain, and I am holding very tight to Hope that the Yervoy will destroy the tumor and stabilize progression of his disease. DAMN this insidious disease!! With deepest caring, greatest admiration for your positive attitude, gentle hugs for you and Sam, and continued Hope, Bonni