Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[wangcns]

Talked with Kevin some more last night about what the UCLA doctors recommend. They are thinking of using SBRT but since the tumor is 5 cm that's in the upper limits of what it can handle so they will not be able to remove with negative margins because of proximity to spine. Dr. Eilber was consulted as our surgeon and he agreed. Cryoablation was not feasible because of the location. Kevin just started Pazopanib so that's another way they hope to keep that tumor under control.

Kevin has lost some feeling in his left leg and they think he will start to lose feeling in his right soon. He's on a cocktail of painkillers but can't walk, sit, lie down with any degree of comfort. I will definitely look into the radio surgery Tom had thanks for the links.

[D.ap]

Connie

I have had friends with back pain/nerve issues that use whats called a TENS unit. It is usually battery powered and emitts a mild electrode pulse. Some people say it works.
Hope Kevin gets some relief soon.

Debbie

[Olga]

Connie - actually Tom had his tumor removed with no negative margins and a radiosurgery for the local recurrence few years later. May be there is a surgeon that would be willing to do a real surgery even with no negative margins - because this would give Kevin an immediate relief and get his walking ability back, debulking they call it. And go for the pazopanib right after that. And reserve the radiosurgery for later if needed. I would talk to Dr. Eilber again re. emergency surgery - and I would suggest you to talk personally not trough the consulting doctor, he might reconsider when he sees the determination you have.
What I mean - his condition demands some urgent action, to decompress the nerves - if they stay compressed for a long time they might be damaged permanently. Radiation therapy is probably not going to reduce the mass fast if at all, because ASPS is usually resistant to the conventional radiation doses and as you said, the radiosurgery might be not feasible because of the size.

[Bonni Hess]

Dear Connie,
I am so deeply sorry for Kevin's severe spinal pain and that his large sacrum tumor has now invaded the spinal cord. I understand and strongly agree that there is an urgency in moving forward as soon as possible with some type of treatment to shrink/destroy the large tumor. Brittany's large cervical/thoracic tumor was initially resected but unfortunately the neurosurgeon was unable to completely remove all of the tumor tissue. Consequently, the tumor continued to rapidly grow into the spinal cord threatening spinal compression and paralysis despite high dose 50 gray photon radiation to try to destroy it. (You can read the specific details in the "Metastatic Disease Treatment" topic under the "Other Metastases" subtopic, and then the "Spinal Muscle and Spinal Canal" subtopic) Emergency radical resection was then required which removed a third of each of Brittany's cervical and thoracic vertebrae, but was thankfully successful in removing all of the invading tumor tissue. We had intitially been told by a very negative oncolgical orthopedic surgeon that successful resection of the tumor would be extremely dangerous, not advisable, and probably impossible, but the oncological neurosurgeon who we sought a second opionion from was more optimistic and felt that he could successfully remove it, although he also warned us that there were serious possible risks associated with the major surgery. He is an excellent neurosurgeon who we credit with saving Brittany's Life and making it possible for her to not have to have instrumentation which would have totally immobilized her neck and upper spine causing her to be unable to turn her head up and down and from side to side resulting in robot like body movements. His name is Dr. Trent Tredway and he practices at the University of Washington in Seattle, Washington. If you are interested in contacting him for a second/third opinion, I will be glad to provide his contact information to you.
Please know that I am holding you both very close in my heart and that my very best wishes and most caring thoughts are with you.
With shared concern, deepest caring, healing wishes for Kevin, and continued Hope,
Bonni

[wangcns]

Thanks for all the useful advice and recommendations, as useful.

Olga, thank you for your advice. We contacted Dr. Eilber and he said he'd re-review Kevin's scans and get back to us.

Bonni, I contacted Dr. Tredway's office and am in the process of having UCLA release Kevin's scans and pathology/radiology report to them.

On Thursday, we are supposed to go to a local hospital for another consult with the radiation oncologists there. They are talking about brachytherapy since it seems UCLA is having problems getting insurance to authorize SBRT. Kevin received some anti-inflammatory prescriptions from the radiation oncologist. It doesn't alleviate the pain when he walks, but he's able to rest more comfortably and has actually been able to sleep.

[wangcns]

Olga, do we know anything about brachytherapy for treating ASPS metastatic tumors?

[Olga]

Very limited:
http://www.cureasps.org/forum/viewtopic ... rapy#p1334 and he had it after the initial resection, probably with the close or positive margins.
As understand, the radioactive seeds need to be implanted and they keep releasing low dose radiation there. In Lucio case they probably implanted the seeds during the surgery. I would imagine that it is easier to get the insurance to pay for the emergency surgery based on a very high score of pain from this tumor pressure on nerves/loss of walking ability? Quality of life issues?

[Jorge]

Hi Connie,

By brachytherapy, is it Iodine125 radioactive seeds? If yes, George had it on the lung mets. It worked, but mets shrinked slowly in the following months. The met of ~1.5cm (sorry, can't remember exactly the size) shrink to nothing after 6 months.

But as told by the Dr. here, it's more suitable for small mets (<2cm) and the unitformity of the distribution of the seeds is important. Anyway, there are still agrresive doctors will use this method on bigger mets.

Best wishes.
Lynette

[Josh]

Connie, Kevin: Just wanted to add mine to the voices of support. I'm whole-heartedly hoping that Kevin is soon able to achieve stability and/or regression, and that whatever treatments you do pursue are able add to his quality of life; if not immediately, then at least in the long run.

Take care, and update us when you are able.

Josh

[wangcns]

Hey folks,

Heard back from Dr. Tredway's office and it looks like he's willing to take Kevin on as a patient. It looks like the major concern is that resection may impact Kevin's quality of life. I finally got a hold of the radiology report, and it looks like the tumor may have originated in the bone tissue and spread out to the surrounding soft tissue, wrapping around nerve ends as they come through the spine. The swelling of the tumor is narrowing some kind of nerve canal and pressing against the nerves themselves, but Kevin is responding well to steroids so they think that's a good sign that there's been no permanent damage yet.

[Bonni Hess]

Dear Connie,
Thank you for sharing the very good and encouraging news that Dr. Tredway has agreed to try to resect Kevin's spinal tumor. We truly consider Dr. Tredway to be a miracle worker who was willing to try to resect, and thankfully successfully DID resect Brittany's dangerously located large spinal tumor when other highly recommended and very respected surgeons were very negative, pessimistic, and gave us no Hope or encouragement. He was honest with us about the risks and seriousness of Brittany's situation and the surgery, but he gave us Hope which the other surgeons had tried to rob us of. I Hope that Dr. Tredway is able to accomplish his miracles for Kevin also, and I will be anxiously awaiting your next update. Please tell Dr. Tredway "HELLO " from us Hesses (or Team Hess as he calls us) when you meet with him.
With hugs, special caring thoughts, healing wishes for Kevin, and continued Hope,
Bonni

[D.ap]

Connie and Kevin
So glad to hear that you are making headway!
Thanks for the update Take care
Debbie

[wangcns]

Flew up to Seattle this week (met the Hesses! Go Team Hess!) and spoke with Dr. Tredway. The encouraging news is that he is willing and ready to operate (maybe a little too eager, he wanted to cut Kevin open next Monday), the bad news is this will seriously impact Kevin's quality of life for the rest of his life, in terms of pain management and mobility, etc etc. Kevin's neural canal is not completely obstructed, maybe at 80-85% obstruction and Kevin is on Pazopanib right now (about a month so far) but they think with certainty they will have to eliminate half the nerves that control bowel, bladder, and sexual function and shave off part of his sacrum and reconstruct it. He'll be left with "soreness" for the rest of his life and will have restricted mobility because of the reconstruction in the back. Dr. Tredway did not elaborate much on what this "soreness" is and he was also not completely confident that he'd be able to preserve Kevin's bowel/bladder/sexual function, he just said he didn't really know. A case by case basis.

Yeah, I don't know what to say except as much as we want to resect this tumor I don't know if that's a price we're willing to pay. I'm going to try and get in touch with Kathy and ask about synergy radiosurgery, discuss Dr. Tredway's proposed surgery with our UCLA doctors... I really don't know. There may not be another option, but between just hoping radiation will do something or getting this drastic life-altering surgery...we just don't know. If anybody has other suggestions, please let me know. We're not ruling out the surgery, but I'm hoping, hoping there's something else we can try.

[mikko]

What Dr. Tredway said about the risk of bleeding?

[Olga]

Did you get Dr. Eilber's opinion? I remember he was going to review the scans also?
This is the new link for the radiosurgery and I would consult there for the other options/opinions they might have on the case:
http://upmc.com/Services/neurosurgery/s ... tumor.aspx
http://upmc.com/Services/neurosurgery/s ... rgery.aspx