Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan, My son (15 year old patient from Denver on Forum) was treated with radiation and Keytruda for the progressing inoperable tumor in his sinuses 1 ½ years ago. He continues the keytruda and the tumor is shrinking slightly and less active with every scan. In addition, he has multiple tumors in his...

We continue to have success with Keytruda! Each scan shows a slight reduction in the size of the tumor in his sinuses and stability in the lungs. He will continue infusions every 3 weeks and we now scan every 4th treatment with weekly blood tests. His energy level is good and he has never looked bet...

Kathy, Our son had an L5 tumor which was treated with radiation (see 15 year old from Denver). Apparently, a lot of his pain was caused by the compression of the vertebra which our doctor treated with Kyphoplasty. The cement filled the void that was created by the radiated tumor. It has been a year ...

Debbie,

PETs were performed 9 weeks after first treatment and then every 12 weeks.

Also, I read your post about potential side effects and wanted to share that bloodwork is evaluated once a week and a physical exam every three weeks.

Bonni,

As always, thank you for your encouragement and support. The tumor at the base of the skull was an extension of the sinus tumor-so they are kind of one and the same.

The side effects from Keytruda continue to be minimal. It has been 9 weeks from previous scan and the tumor at base of the scull is “more dead” and a little bit smaller. The lungs stable. He just turned 18 and is looking forward to college next year!

Only the sinuses were treated with the radiation. Type of radiation- conventionally-fractionated IMRT - 6o grays spread over 10 treatments (2 weeks of 5 days a week). The radiation oncologist was excited as he has seen other cancers respond to the combination of Keytruda and radiation. He is hopeful...

After the three treatments, the side effects have been minimal -mostly mild fatigue which could be attributed to the radiation. They do check his blood every week but so far everything is stable.

Dr. Brian Greffe is his Oncologist (720) 777-6740.

His scans consist of full body PET, CT for lungs and MRI for the head/sinuses.

Latest update: We tried Votrient and my son was stable for about 6 months. He went off it when there was renewed growth in the tumor in his sinuses/base of his skull. As always, we were discourage that the new growth was not “measurable” enough for him to qualify for any trials. He is now almost 18 ...

Bonni et al, Thanks as always for your concern and sharing. He just turned 17 in January, so above the pediatric trial age and below the adult age limit. Also, by obtaining CU we are hoping that we can be treated locally. Also, Cediranib was our Doctor’s first choice but my husband and I are more ex...

Kyphoplasty was completed without any major complications; however, after the 3rd day, he started experiencing spinal headaches. They sent him for an MRI as a precaution (next one was scheduled for March) and they noticed that the tumor in the sinuses was beginning to fill in and grow again. The rad...

MJ, Thank you for sharing. I have been following your story as well. We are not sure what we are going to do next and have considered a few of the treatments mentioned on this site including cediranib and immunotherapy treatments. We are proceeding slowly in fear that some of the side effects may ca...

Deb-when he had the sinus issue, we were scanning every 8 weeks. Since things have stabilized, we have gone back to every 3 months for MRI and pet. We also see the dentist every three months. Bonni-I agree with you on the biopsy issue and will keep that in mind the next time around. He does have som...

Ps. Primary was leg, then sinuses, now l5 spine in the bone. Will talk to the oncologist about cabozantinib. Thanks again.