Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
Heartbreakingly, Brittany suffers severe, chronic, debilitating spinal pain as the result of the very major Life threatening resection of her large spinal tumor nine years ago which resulted in the removal of one third of each of seven cervical and thoracic vertebrae in order to completely remove the tumor. Of all of Brittany's 23 surgeries/ablations/radiosurgeries during the past almost 15 years of her very challenging ASPS battle, the spinal surgery has created the most severe, debilitating, and long term pain for Brittany.The doctors are amazed that she is able to get out of bed each day, but with her incredible determination and invincible spirit combined with high dose opiate pain meds she courageously perseveres to try to remain as active as possible and Live Life to the fullest within the limitations created by her unresolved chronic pain. We have explored every currently available pain treatment including acupuncture, botox injections, physical therapy, and hypnotherapy, but unfortunately nothing has been able to provide any significant nor sustained pain relief for Brittany. Her highly regarded and experienced Seattle Cancer Care Pain Team have told us that they cannot offer her any other pain relief options other than the heartbreakingly inadequate high dose opiate pain meds that she is currently taking. Through our continued dedicated search and research, we found a promising new experimental pain treatment being provided by a Seattle Swedish Medical Center oncological pain doctor utilizing the infusion of Ketamine. After being on the waiting list for the past six months, Brittany was finally scheduled for the closely monitored two day, seven hours per day Ketamine infusion three weeks ago. VERY thankfully and encouragingly, Brittany's severe chronic spinal pain has now been reduced from a constant Level 7-9 to a much more tolerable Level 4 The doctor does not know how long Brittany's pain relief will last, but other Ketamine pain patients have had sustained pain relief for about four months so we are VERY Hopeful that Brittany will have pain relief for at least that much time and Hopefully longer. If, and when the Ketamine is no longer providing pain relief for Brittany, she will be scheduled for another infusion. I will keep the Board updated on the results of this promising new pain treatment.
With special caring thoughts and continued Hope,
Bonni

Bonni and Family
Hugs and love coming your way as I can only imagine the vicarious feeling being felt by each and everyone through this challenge
My prayers for pain reduction success and a cure continues today and always
Love
Debbie and family

Dear Bonni:

Is this new treatment in a clinical trial stage or an actual FDA approved Bonni. I am glad brittany is doing much better with her pain. I always struggle with pain management,because I am scare of becoming addicted to the opiates. Right now I am on 30 mg of MS cotin and have 15mg of Morphine IR available for breakthrough pain management. I have been on the 30 mg ms Cotin now for about 2 and a half years and lately I feel like its probably not working anymore as it used to. I will probably going to need to go up on my daily dosage and thats what I hate. I am scare that I am going to become immune to morphine or need a super high dose. My doctor says that it is very unlikely that it will happen. My pain is pretty much my unknown back pain and my chest pain is the worst in a way. But since I started pain management in 2012 there was a huge change in my lifestyle in a good way. Let me know about Brittany new pain management routine Bonni please, I will keep checking this side of the forum for info. Thank you Bonni

Mario Arevalo

Dear Mario, I am so sad and sorry for your pain and wish that I had some good treatment recommendations and solutions for you. The Ketamine infusion which Brittany received was thankfuy very helpful in relieving/reducing her severe spinal pain for about a month, but unfortunately the pain relief gradually dissippated and her severe chronic pain resumed . She is on the waiting list for another infusion, and we are Hopeful she will be able to to receive one soon and that the next infusion will be more sustained and longer lasting than the first one. Since Ketamine is already FDA approved, the Ketamine infusion treatment is not a Clinical Trial, but rather an experimental pain relief experiment being done by a very limited number of doctors in limited locations in the United States. Hopefully it will prove to be successful enough that it will become more widely available to pain patients sometime soon. In the meantime, Brittany is taking high doses of oxycodone and oral fetanyl and receiving increasingly less pain relief as her body becomes immune to the pain meds after so many years of prescription opiate drug use. It is a very heartbreaking situation and one for which we will continue seeking some better treatment options. I Hope that a benign and easily treatable cause is found for your concerning currently indiagnosed back pain. Please take care and keep in touch with the Board as you are able. With special caring thoughts, healing wishes, love, and continued Hope, Bonni