Will from San Diego - Dx 2002 - RIP 17/04/2012

[Olga]

I have to comment that both radiosurgery and radiation therapy are usually photon source based (CyberKnife, Novalis and Synergy are the specific branded radiosurgical units on the base of the photon using Linac device with the different software and technology types). The difference is the radiation dose and the schedule. Radiosurgery uses the higher radiation doses delivered to the smaller target in 1-2 treatments and basically burns it out and creates the volume of the necrotic tissue. Radiation therapy uses medium doses of the radiation in 10-14 treatments and aims to cause the damage to the cells of the tumor and surrounding healthy tissue hoping that the healthy tissue will survive and repair itself and that there will be irreversible damage to the tumor tissue. So again the rad.type is the same. There is also neutron based rad. therapy that is used to treat sarcomas and was found to be effective in ASPS but it is rarely avail., I know that the neutron facility Fermilab close to Chicago (??) has the most experience with ASPS treatment, there was also something in Seattle (?? - I am not sure on this one).

[Bonni Hess]

Thank you Olga for clarifying that distinction between regular photon radiation and photon based radiosurgery. I was not aware that radiosurgery was photon based, but only that it is able to deliver much higher and more specifically targeted radiation doses to individual tumors. Our experience with Brittany's failed regular photon radiation for her residual spinal tumor versus her successful Gamma Knife treatment for her brain mets dramatically illustrated to us that the regular photon radiation administered during 10-14 treatments over a period of a couple of weeks does not seem to be able to deliver a high enough dose of radiation to shrink and kill radiation resistant ASPS tumors.
With deep appreciation and respect for your valued expertise, and with continued Hope,
Bonni

[Olga]

Bonni, to add some confusion to this subject - Gamma knife radiosurgery (is only used for the brain) and Linac based radiosurgery (Novalis, CyberKnife, Synergy etc. can be used everywhere) are two different photon stereotactic radiosurgery techniques. Linac (linear accelerator) based radiosurgery use X-rays, while Gamma knife radiosurgery uses gamma rays. Both of them are Stereotactic photon radiosurgeries, but have some differences. Some people are getting their brain mets treated by the Linac based systems now as well.

[willnocon]

Hi all

I'm done with my radiation sessions. No side effects to speak of. Of course, we won't know if it really worked for a while now, but it really has helped ease the pain I was feeling. Before radiation and without taking any meds, I'd say my range of motion was about 30%. Now after radiation (still no pain meds), I'd say I'm at about 100% range of motion with little pain. Did the radiation really help get rid of the mets? Time will tell, although I am very cautious in saying and believing it did after reading all the comments on here about radiation not working. So hopefully, I'll find out that it did.

I have a CT scan scheduled on Wednesday to take a look at what might be causing the pain in my left kidney area. I'm praying it's not new mets and that it's something that can be easily taken care of, but my feeling is that I'm going to be disappointed.

Talk to all of you later when I find out more...

Will

[Bonni Hess]

Dear Will,
It was so good to hear from you with the thoughtful update regarding the outcome of your radiation treatment. I am so grateful to hear that you tolerated the radiation treatment well with no side effects, and that you have now regained full range of motion in your shoulder following completion of your radiation treatment . I am very Hopeful that the radiation was sucessful in completely destroying the mets in your scapula, and that this will eventually be confirmed by post radiation scans. I'm so sorry for the concerning pain in your kidney area, but will be sending my most positive thoughts and greatest Hope that your Wednesday scans will show no new mets and just some easily treated benign cause of your kidney pain. Also, are you continuing to have pain in your head, and have you had your brain MRI yet? Even if your head pain has subsided or resolved, it is still extremely important to have a brain MRI as soon as possible, and then subsequent brain MRI's at least once a year, and preferably every six months, to rule out the possibility of brain mets. I will be anxiously awaiitng your update on the results of your Wednesday's abdominal scan, and holding you very close in my thoughts. Take care Will and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[willnocon]

Thanks for the very kind words Bonni. I did have a brain MRI and it all came back negative, thank God. I will be getting yearly brain MRI's from now on so thank you all so much for that advice.

[Bonni Hess]

Dear Will,
I am so grateful that you had the brain MRI and that it was negative for any brain mets . My special thoughts and very best wishes have been with you the past several days for additional good news from your Wednesday's abdominal CT to try to determine the cause of your kidney area pain, and I am anxiously awaiting your Board update on the scan results when your time and the situation allow. Take care.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[willnocon]

Hi all

I'm still fighting. I didn't get into the Dasatinib trial, unfortunately. They did find a met on my left rib, so I'm looking into radiating that area since the met on my scapula seems to have worked with radiation. I actually meet with my radiation onc tonight.

Something to make all of this even harder is that I've found out that I am now allergic to contrast IV. I've had two episodes of anaphylactic shock when getting a CT scan. The second time I actually passed out. Scary stuff. Now that i can't get contrast IV for CT scans, I'm not sure how we're going to be able to keep an eye on these mets. Of course, if things stay in soft tissue, MRI's can track them. But these bone mets are what the CT scan usually can pick up. I guess we'll just have to wing it in the mean time.

So... just wanted to keep things up to date. Hope everyone else is doing well.

Will

[Amanda]

Hello Will,
I sent a reply to you in PVT.

Rib radiation is very tricky and removal was my choice rather then problems in the lungs from the radiation...

There is another sister drug and please post or PVT me the drug he is suggesting and i will see if it is the one a friends lil girl is on and stable..

[Ivan]

Have you considered ablating the met? I believe Brittany (or someone else) had a very good result with a bone met.

[Olga]

Will - MRI is perfectly good for the bone mets as well. The problem with the rib is that it is moving with the breathing and for the MRI the area has to be still.
I know the case when ASPS met in the rib was treated with the radiation with the success few years ago, and besides there are new rad. techniques that might allow to avoid the damage to the lung tissue. How big is the met?

[Bonni Hess]

Dear Will,
I am so very sorry that you have now been diagnosed with a new met on your rib, and I will be anxiously awaiting your update on the outcome of your meeting with your radiation oncologist. Hopefully radiation will be a viable treatment option for the rib met, but if not, as Ivan said, radiofrequency ablation (RFA) may be another option to pursue as Brittany had a very successful outcome to RFA for a tibia met in 2005 with thankfully no sign of reoccurrence since the procedure. I am sorry too that you didn't get into the Dasatanib Trial, and am wondering what the reason was that you weren't accepted? Is it because the Trial has now been closed for new enrollment, or because of other eligibility reasons? Have you considered applying for enrollment in the NIH Phase 2 Cediranib Trial? If you have any questions regarding RFA treatment for bone mets or about Cediranib please let me know. in the meantime, please take care Will, know that my continued most caring thoughts are with you, and keep in touch with the Board as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni

[willnocon]

Hi all

The met on my rib is just over 1cm. Both radiation oncs I talked to said there should be no problem with radiation on the rib (and not affecting anything else around it). I saw Dr. Hakimian at Cedars (thanks Amanda) and my regular radiation onc here in San Diego. Both felt radiation should be alright since the mets on my scapula have shown improvement since radiation.

As far as the Dasatinib trial, I just missed the enrollment by one. They closed the study and I was the next person that would have gotten in if they didn't close enrollment. I guess it's just bad timing on my part. I know of the trial in DC, but realistically, I can't really do that trial if it means travelling back and forth to DC every couple weeks/months. While I still consider that place home in my heart, the costs of getting back and forth from San Diego would be too great. I'll look into other drugs suggested by Dr. Forscher at Cedars-Sinai. Hopefully there's something else that can help me out systemically.

I've thought about RFA too. Since radiation seems to be working, I'll go with that for now.

Thanks everyone for checking in.

Will

[Olga]

Will - thanks for an update about the positive result after the irradiation of scapula - our experience with the conventional radiation for the bone mets is limited and the rare information like this is really appreciated by the ASPS community.
I hope that someone who travels to NCI for cediranib trial can comment if there is a financial assistance with the flight tickets for the traveling back and forth.
Re. other treatment options - they are fairly limited but there are 2 approved TKI drug on the market - sunitinib and pazopanib - that can be prescribed off label, by the oncologist treating the patient and expecting the clinical benefit from it. Also you probably should ask if you need to take bisphosphonate - they are the drugs aimed to block the growth of the bone mets. I know someone with the diff. sarcoma type that has more then 20 small bone mets that are stable for 2 years after he started to take bisphosphonates.

[Bonni Hess]

Dear Will,
I am so grateful for the positive and encouraging outcome of your consultations with the radiation oncologists, and like Olga, am so deeply appreciative of your sharing the information about the positive response of your scapula mets to conventional radiation treatment.This shared information about personal treatment results is invaluable to all of us in the ASPS Community. Have you scheduled the radiation treatment yet, and if so, how many treatments will you receive?
Regarding the expenses involved in commuting from San Diego to Bethesda, Maryland for the NIH Cediranib Trial, I have posted an entry on the Cediranib thread requesting information from those who have been in the Trial about what financial help NIH may be able to provide for patient's transportation and housing. However, if you still feel that the Cediranib Trial is something which is not possible for you to participate in for whatever reasons, there are the two other FDA approved TKI drugs that Olga mentioned including Sutent that has shown some success for several patients on this Board, as well as the C-met inhibitor ARQ-197 for which there is only one ASPS patient thus far that I am personally aware of who has had a successful and sustained response. Crizotonib is another C-met inhibitor which may hold some promise, but the Board no longer receives updates for the only Board patient who was participating in a Crizotonib Trial, so the status of her Crizotonib response and results is unfortunately unknown. I will be anxious to hear about any other systemic drugs that Dr. Forscher may suggest, but I know that your first priority right now is treatment of your rib met. I continue to hold you and your family very close in my heart and most caring thoughts and my best wishes are with you for a very successful response to your rib met radiation treatment.
With deepest caring, healing wishes, and continued Hope,
Bonni