Sam from Florida - Dx 2007

[Bonni Hess]

Dear Cindy, I am so deeply saddened and sorry for dear Sam's apparent resistance to his Atezolizumab treatment with increased tumor growth and the reappearance of multiple previously dormant mets, which his doctors don't think is pseudoprogression. I am holding very tight to Hope that he will have a successful response to his next Atezolizumab infusions, and that he will be able to remain on this promising new Immunotherapy treatment. If not, is another systemic treatment being considered for him? Sadly, ASPS is very unpredicttable, and each patient may respond differently to different treatments. Research has indicated that there may actually be 2 different types of ASPS, so it is important to try different treatments. I know that dear Sam has very courageously already undergone several type of failed systemic treatments, but Hopefully one can/will be found very soon that he will have a very successful response to with tumor shrinkage/disappearance and sustained long term disease stability. In the meantime, stay strong and pro-active, don't give up, and keep in touch as you are able. Sam is very fortunate to have such a dedicated and supportive mother which will truly help strengthen him for his continued very challenging battle with this insidiious disease. Please know that you are not alone, and that those of us in the ASPS Community are here to help with shared information and deepest caring and support Reaching out to embrace you with special caring thoughts, warm Friendship, and continued Hope, Bonni

[jcs2007]

Just a quick update on Sam: The thoracic surgeon presented Sam’s case to the tumor board to evaluate for lung “wedge” surgery due to increase in lung Mets, but surgery isn’t recommended at this time. There was increase in Mets in his rib, sternum,and femur, but his right knee met has shrunk with radiation and his knee pain is much better. He has 8 more radiation treatments and he’s tolerating it well.
His left leg wound is almost closed but his mandible wound keeps opening, but his last CT showed improvement in the jaw, so he will continue with wound care. He is on another antibiotic for the jaw wound. I’m sure his wound healing issue was a factor in not wanting to jump in to do surgery. Tumor board recommended to look into other systemic treatment options which Opdivo/yervoy was mentioned previously so he has an appointment in 2 weeks.
Deb, He did one more Atezolizumab treatment on 4-19 so that makes 9 weeks and he gained 10 lbs in 3weeks so we’re alittle concerned with that quick of weight gain.
Bonnie, we will find out systemic option 5-10 but Opdivo/Yeryoy was mentioned so I’ll update ASAP.
Thanks for all the encouragement!

[Bonni Hess]

Thank you for your thoughtful detailed update dear Cindy. I Hope that dear Sam will be scheduled to begin the promising Opdivo/Yervoy treatment soon, and am holding VERY tight to Hope that it will be the miracle systemic treatment that he needs to successfully shrink and destroy his multiple mets and stabilize his disease progression. In the meantime, I Hope that his mandible and leg wounds will completely heal. My heart breaks for all of his pain and suffering, and for your deep heartache as you faithfully make this very challenging journey with him providing strengthening love and support. Take good care of yourself dear Cindy,, and know that you and dear Sam are held VERY tight in my heart and special caring thoughts with healing wishes and continued Hope, Bonni

[Olga]

Cindy, perhaps Sam was given steroids to go along with the radiation treatment, no? If that is the case, the weight gain can be explained.

[jcs2007]

Just wanted to do a quick update. Sam wasn’t prescribed any steroids, but his diet has been affected by the wound in his jaw from his surgery 2 hrs ago so a new doctor recommended he remove the plate in his jaw. We think the weight gain is from too much ice cream and donuts and limit exercise due to his knee tumor🤷‍♀️. He is scheduled for jaw surgery 7-27 but has to pass pre-op appointment on Monday. He has had two Opdivo/ Yervoy infusions which he mainly felt like he had the flu for a week after treatment. However, he has more chest pain these past 2 days especially if he moves or sneezes so his oncologist will evaluate him next week too. (Not sure if it’s the rib, lung, or chest wall tumor acting up or just a crazy side effect) He continues to be a trooper though through it all!

[D.ap]

Hello Cindy
Are they thinking the plate is not allowing Sam’s jaw to heal properly?

I bet you are right about the pains being a tumor reaction .
Josh feels pains well before scans show inflammation and or reaction to his infusion meds , with his tumors .Especially in his chest area .
However do have Sam looked at and assessed soon.

Thanks for the update .

Let us know what your team thinks.

Love ,

[Bonni Hess]

Thank you for your thoughtful update dear Cindy. My heart breaks for dear Sam's continued challenges with this damn disease, and I SO deeply admire his continued courage and perseverance. I am grateful that he has been able to enjoy some of the good things in Life like donuts and ice cream :), but am so sorry that the jaw plate may have to be removed. My greatest Hope and very best wishes are with him for a very successful response to his new Opdivo/Yervoy treatment, and I Hope that all goes well with his jaw surgery on the 27tth with an easy and speedy recovery. Please keep this Forum updated as you are able, and give dear Sam and yourself caring hugs from me. With deepest caring, healing wishes for dear Sam, and continued Hope, Bonni

[jcs2007]

Hey, Sam is healing nicely from having the plate removed from his jaw and had his 4th dose of Opdivo/yervoy. We are hoping the immunotherapy will work better by eliminating the chronic infection. He will have scans done 8-28 so hopefully I’ll report positive news! Also, he has slight case of thalassemia which affects red blood cells so he’s on iron pills.
Hoping all is well with everyone else dealing with this crazy sarcoma.

[Bonni Hess]

Thank you for the encouraging update dear Cindy, and MOST positive thoughts and VERY best wishes fo dear Sam's speedy healing and recovery from his jaw surgery, and a VERY successful response to the Opdivo/Yervoy Imuunotherapy treatment. Holding VERY tight to Hope for VERY GOOD scan results on the 28th, and holding dear Sam, you, and your family VERY close in my heart with deepest caring, warm friendship, love, and continued Hope, Bonni

[D.ap]

Hey, Sam is healing nicely from having the plate removed from his jaw and had his 4th dose of Opdivo/yervoy. We are hoping the immunotherapy will work better by eliminating the chronic infection. He will have scans done 8-28 so hopefully I’ll report positive news! Also, he has slight case of thalassemia which affects red blood cells so he’s on iron pills.
Hoping all is well with everyone else dealing with this crazy sarcoma.

Cindy ,
It’s truly encouraging news of Sam’s healing.
Looking forward to the 28th scan reports.
Is the thalassemia a new found issue ?

Love ,
Debbie and family

[ntran727]

Thanks for the update. How did his 8/28 scans go? Is he just on Opdivo now after finishing the 4 doses of Opdivo/Yervoy? How is he doing with side effects? I just had my 6th infusion of the combo (my oncologist wanted to make it 6 and not 4 since I am tolerating it so well with no side effects hoping it’ll give me better results) and getting my scan this week. Glad to hear of his jaw healing. Let us know about the scan results.

[Bonni Hess]

Dear Nhi, I too am wondering how dear Sam's August 28th scans went, and am holding VERY tight to Hope for VERY GOOD news of treatment success with tumor shrinkage/disappearance and disease stability. I am VERY grateful that you have been tolerating your combination Opdivo/Yervoy treatment so well :), will
be anxiously awaiting your update on your upcoming scans, and holding VERY tight to Hope for VERY GOOD scan results. With special caring thoughts, VERY best wishes, and continued Hope, Bonni

[jcs2007]

Thankfully, Sam is healing nicely from jaw surgery. His CT scans showed decrease in lung Mets, stable sternum and rib Mets,but the pesky knee tumor has caused a lot of destruction so he will need knee replacement surgery possibly next month. There is also a concerning area in his right hip which may need surgery too.His infusion of Opdivo/Yervoy was canceled last Wednesday due to the hurricane but hopefully getting it 9-13. He has brain mri on 9-19 so hoping the skull tumor is stable. Since the lung tumors have decreased and he’s tolerating the medicine well, He will stay on this course.
Do bone Mets take longer to respond to treatment? He had a lot of rib pain in July so I was hoping it swelled as it was dying? Hanging in there 🙏💪

[D.ap]

Thankfully, Sam is healing nicely from jaw surgery. His CT scans showed decrease in lung Mets, stable sternum and rib Mets,but the pesky knee tumor has caused a lot of destruction so he will need knee replacement surgery possibly next month. There is also a concerning area in his right hip which may need surgery too.His infusion of Opdivo/Yervoy was canceled last Wednesday due to the hurricane but hopefully getting it 9-13. He has brain mri on 9-19 so hoping the skull tumor is stable. Since the lung tumors have decreased and he’s tolerating the medicine well, He will stay on this course.
Do bone Mets take longer to respond to treatment? He had a lot of rib pain in July so I was hoping it swelled as it was dying? Hanging in there 🙏💪

Hi Cindy ,

It’s so good to hear that Sam is healing nicely..
I bet he is truly grateful as well !
The skull tumor was 16mms at last count ?
Josh had a 9mm skull tumor disappear at 4 months , during his first months of nivolumab.
In reference to your question about bone Mets , it’s my understanding that they are typically one of the harder tumors to combat . However, with the Opdivo/ yervoy combo , studies have shown greater success is treating them .☺️
Let us know how the brain scan goes.
Thank you for the update ❣️
Love ,

[jcs2007]

Just a quick update: the neurosurgeon wants to remove the growing orbital tumor since it’s causing pain and vision issues. Also, she recommended replacing the metal plate with a fake bone since these plates deteriorate overtime. Good news is that skull met has disappeared and everything else has stabilized or shrank so he will stay on Opdivo ( Yervoy was just for the first 4 infusions) Sam is still fighting.
Deb, did Josh adhere to a high fiber diet while on treatment? My son has the opposite issue with his weight than Josh did but with his past jaw issues, Ice cream is easier to eat and lifts his spirits better than broccoli.