Tom from Pennsylvania - Dx 2002, RIP 2021

[Olga]

Hi Kathy,
I am so very sorry to hear about this vertebra damage and the pain it is causing to Tom. Are they sure that this is cancer has spread from the L4 to the L3? It might also be a damage from repeated radiosurgery treatment to that spot, the bone fractures in the field of treatment are pretty common. It needs to be stabilized anyways, regardless of the cause, but the amount of the bone they would scoop out is probably different.Ask them if there is any additional scanning that could tell.

[Bonni Hess]

Dear Kathy, Thank you for your thoughtful update. I am so sorry that Tom is suffering from spinal pain and that the pain has now been attributed to a broken L3 vertebra with possible metastatic spread to his L4 vertebra. My most caring thoughts and positive wishes will be with Tom and you for a good outcome to your meeting with the surgeon on Monday that will Hopefully result in a viable treatment plan to heal the broken vertebra, remove/destroy/stabilize the metastatic vertebral spread, and alleviate Tom's spinal pain. In the meantime, I Hope that Tom will be able to enjoy a relaxing and wonderful Father's Day tomorrow with your family. Holding Tom and you very close in heart and thought and reaching out to share my deepest caring, healing wishes, much love, and continued Hope, Bonni

[Ivan]

Kathy, best wishes for the upcoming surgery for Tom.

Edit: Tom's surgery went as planned and he's now recovering.

[Olga]

Kathy,
please update on the surgery outcome as you are able - did you get the surgical report, was there any ASPS cells found in the bone or it was an irradiation damage to the bone that caused it to break. We have pretty low understanding of the ASPS bone metastasis - scanning and its ability of the bone invasion.

[D.ap]

Hi Kathy and Tom and family,

I was just reading thru your posts that started on this forum in 2008.

Hugs and prayers coming your way for progress in combating ASPS.
You've all been thru a heck of a lot of battles and I just am checking in, as Olga is , to let you know we are here.

I am in hopes that today and tomorrow bring you closer to answers and pain relief.

Much love
Debbie and family

[Kathy]

Hi everyone,
Tom had nerve decompression, tumor resection and spinal fusion done about 5 weeks ago. He did really well with the surgery and his initial recovery. His pain is better and he was released to go back to work this past Monday. We were thrilled to learn the cancer was not in the bone. On Tuesday his incision opened and he is heading back down to Pittsburgh for surgery again on Tuesday. They feel the prior tissue damage from radiation is keeping the back from healing properly. They already have him on an antibiotic for infection. I will post more after his surgery on Tuesday.
Love to you all,
Kathy

[Bonni Hess]

Dear Kathy, Thank you for your thoughtful update. I am so grateful that Tom has been able to obtain some pain relief and that it has been determined that his ASPS is not in the bone. I am so sorry for the discouraging setback in his post surgery recovery and that he heartbreakingly now has to undergo another surgery due to healing problems caused by tissue damage from his previous radiation treatment, but am holding very tight to Hope that it will be an easy surgery that successfully resolves the problem with his incision. My very best wishes and most positive thoughts will be with Tom, you, and your family on Tuesday, and I will be anxiously awaiting your next update when your time, energy, and the situation allow. Take care dear Kathy and please give Tom and yourself gentle hugs from me. With special caring thoughts, healing wishes for dear Tom, much love, and continued Hope, Bonni

[D.ap]

Kathy and Tom and family

Gods speed on Tom's surgery and healing
Love
Debbie and family

[Bonni Hess]

Dear Kathy, I Hope that this finds Tom healing and recovering from his two most recent spinal surgeries with no further healing complications and problems. I Hope too that the surgery resolved his spinal pain and that his disease is now stable with no new tumors. Please know that Tom, you, and your family remain closely held in my heart and my most caring thoughts. Take care dear Kathy and keep in touch with the Board as you are able. With deepest caring, healing wishes for dear Tom, much love, and continued Hope, Bonni

[Kathy]

Thanks for reaching out Bonnie, please know that I don't post a lot but everyone on this board is constantly in my thoughts and prayers. I still have such a hard time believing this is our reality. Tom is doing well. He just had a pet scan and everything looked good. His brain mri is scheduled for the 5th of October. He is back to work and back to enjoying life. He never complains. Although the pain is much better it is still there.
We hope everything is going well on your end too. Much love and as always hope,
Kathy

[Bonni Hess]

Dear Kathy, Thank you for your thoughtful update with the wonderful and encouraging news of Tom's good post op recovery enabling him to return to work and enjoy Life I am so grateful that his recent PET scan looked good , and am wondering if he is also being followed with CT or MRI scans since, based on my research, observations, and our personal experience, PET scans can be unreliable and inaccurate. I am very sorry for Tom's continued post op lumbar spinal pain which I know can be so discouraging and debilitating as our dear Brittany also suffers from chronic post op cervical and thoracic spinal pain for which there heartbreakingly seems to be no successful sustained resolution despite all of the physical therapy, accupuncture, Botox, hypnotherapy, and high dose opiate pain meds. However, in spite of the chronic pain, Brittany like Tom courageously and inspirationally continues to be as active as possible Living Life and each day with great passion, purpose, determination, and appreciation . My very best wishes and most positive thoughts will be with dear Tom, you, and your family for Tom's October 5th brain MRI and I will be holding very tight to Hope for very good scan results that show no brain mets. In the meantime, enjoy a beautiful beginning to Fall with your dear family and friends, and keep in touch as your busy schedule allows. Sharing the special joy of Tom's successful spinal surgery recovery and good PET scan results with much happiness, healing wishes, lots of love, and continued Hope, Bonni

[Olga]

Hi Guys, I know that you are looking for options to treat the spinal tumor that is slowly progressing.
I found some article about combining two treatments to improve the results for the resistant tumors:
Combined Ablation and Radiation Therapy of Spinal Metastases: A Novel Multimodality Treatment Approach.
http://www.ncbi.nlm.nih.gov/pubmed/26606009
may be it had to be done before, not now - what radiosurgeon says if any radiosurgical treatments can be done at this stage or the limit was reached?

[Kathy]

Tj and I would like to thank so many of you who continue to help us with this awful road we are on. I know I am not posting often but so many of you keep in touch via email and facebook. We appreciate all the advice and help. I cannot lie, we are feeling very lost right now. I feel like every time we turn around we are getting bad news. The stubborn tumor by the L4 continues to grow. We are told by multiple doctors (including Littrup) that due to the difficult location it cannot be treated with Cryo. It has been treated 4x with radiosurgery and we are told they cannot throw any more at it. They also feel the reason he had the broken vertebrae last June was due to the radiosurgery weakening the bone. Traditional surgery was attempted and while the surgeon took all he could a complete resection was not possible. We are feeling overwhelmed at what to do next. We are currently waiting for Dr. Wilky in Miami to review his scans and we have been in touch with NIH regarding Cediranib. Any thoughts, suggestions and opinions are appreciated. So far the lungs are stable and showing four mets 1.7cm being the largest. The 2 brain mets and the scalp met are all clear and his hemoglobin looks great so they feel the bowel is okay as well. His oncologist feels that it is time for systemic treatment. The pain he suffers is getting worse and continues to limit his activity. As this tumor in the back grows it will only invade more difficult areas to treat and continue to increase his pain level.

[Olga]

Kathy, in Miami the trial is for Axitinib and Pembrolizumab (Keytruda). We have ASPS patients in both, Keytruda and Durvalumab (MEDI4736) PDL targeting drug clinical trials, responding. We also have different level of responses to Cediranib. It is important to find out of there are any bone/soft tissue mets responses in any of these trials. There are lungs and other organs responses but I am not sure about the bone and soft tissue. Talk to the people on the Facebook group page who are on MEDI4736 trials, if there were any bone mets responses. Also keep looking for the advanced surgical opinion, MDACC or MSK usually have the best surgeons - if the insurance covers that.

[Kathy]

We heard from Dr. Wilky in Miami. Tom does not meet the criteria for the trial due it requiring multiple lesions over 1cm that are not bone. She suggested Votrient or Sunitinib. If Tom has growth on these, she would reevaluate him for her study. Thoughts? Ideas? Concerns? We are eager to hear from all of you.