Our 5 year old daughter's GBM has returned. Last month we travelled to Tubingen Germany to begin a customized peptide vaccine treatment for her. During the course of the treatment injection 'boosting phase' she began to complain of her back hurting. The co-injections prescribed by the vaccine protocol are Leukine which has a side-effect of "bone pain". We thought her back pain was this but her symptoms worsened quickly towards the end of our visit to Germany and upon returning to the USA requested a spine MRI which revealed large tumors in her spine. This came as a crushing blow to us since she had been NED since having a total resection a year ago.
She has begun radiation on her spine along with steroids which has improved her mobility. Another brain MRI revealed very small growth in her head in the brain base and on the optical nerves. A subsequent head MRI 16 days later shows very little growth in the head lesions so that is a good sign in terms of the brain cancer growth rate.
We see the best possible chance for her is getting her off of the steroids and ending radiation ASAP. To this end we have started her on Avastin every 3 weeks and are not planning to perform any head radiation at the moment. We have had all of the remaining peptide vaccine doses sent to the USA so that we can continue her peptide injections every 2 weeks once the radiation stops in the hopes that the vaccines have an effect on her tumors.
We are aware that things do not look good for our daughter but what we are really frustrated with is the lack of options we have been presented with by her oncology team. As any family dealing with this awful disease, we are willing to go anywhere for treatment. What would be the collective advice at this point?
• Polio vaccine at Duke _ not possible due to multi-locations of recurrence
• Dendritic Cell Therapy?
• Who is doing the best work with checkpoint inhibitors?
• Is there an institution that can pull biopsy of tumor material from blood/CSF with best results towards sequencing of the new tumors? MSK unwilling due to swelling
Thanks as always to this community.