2 mm tumour on left retina

[Charity]

This is my latest mestastes which was not a shock to me because my vision had been degenerating since August. I found an excellent eye surgeon who performed 4 hours of tests however he says once again because of the bad luck I have been having with location the only treatment I can have is eye radiation. Which has crappy side effects and no radiation guarantees loss of vision. However if I have more new tumours visible on my Brain MRI I really will have to assess. Especially since I have been vomitting for the past 2 weeks and Zofran and Gravol don't work and my lastest CT says I have a damaged kidney I dont know how that happened because I am in no abdominal pain however I am waiting for an appointment with a specialist for clinical correlation. I am 38 years old one of the few ASPS patients with growing mestastes and am aware that sarcomas are generally childhood cancers. So I am aware my prognosis is not as rosy as some others however I will share all the information I may have to help others.

[argonaut]

Thanks for sharing it is appreciated.
Scott

[Yosef Landesman]

Dear Charity,

Thank you for the update. We are all reading your entries and wishing you the Best Wishes.

[Bonni Hess]

Dear Charity,
I am so deeply sorry for your heartbreaking new mets diagnosis and for your increasing challenges and heartache in your courageous battle with this monstrous disease. I was unaware that ASPS could metastasize to the retina, but tragically, I think that we are all learning that ASPS mets can develop in many other parts of the body than those areas usually reported in the limited medical data available on this very rare disease. Thank you for your continued faithful and thoughtful updates. We will all be holding you very close in our hearts and our continued most caring thoughts, and will be praying for good news from your brain MRI that shows that the Whole Brain Radiation treatment that you underwent is working to destroy your brain mets, or at least to stabilize their growth . Have you had an opportunity yet to explore or discuss with your doctors the Gimatecan Clinical Trial treatment being used for Sarcoma patients in British Columbia that Olga discussed in her November 30th entry on this thread? Perhaps this treatment would be an option to try to systemically stabilize the progression of your disease. Please take care dear Charity and know that we are here for you to try to help in anyway that we can, and that we are reaching out to you with our stengthening support, encouragement, special caring, warm friendship, love, and continued Hope,
Bonni Hess

[Olga]

Charity - I found that in Vancouver we have a facility to treat melanoma in eye using proton therapy
http://www.triumf.ca/welcome/proton_thrpy.html
check if there is something like this in your area or in Toronto, it is getting done not at the usual radiation treatment centers but at the reactor or research facilities where they have cyclotrones.

[gracepeacestrength]

Hey charity,

I know it's been several years since your post (ok, a lot of years), but I was hoping to learn more. I am a previous member of this forum looking for anonymity from extended family so made a new ID. I had ASPS of the sacral nerve root over 10 years ago. Have had a LOT of bad health problems this past year that has finally reached an all time high where my doctors are finally taking me seriously. I just found out on Monday after a 2 week bout with awful migraines that I have something on my right retina and am seeing a retina specialist on Friday. I don't know how common anything on one's retina is (in any form) and was hoping you could share your experience with me. Thanks so much!

[Olga]

Hi, I will have to answer for Charity as she is no longer with us.
The ASPS metastasis to retina is extremely rare. The only other published case with ASPS met to the eye that I found is this one so may be let the surgeon to read this before of the surgery:
Alveolar soft part sarcoma metastasis to the choroid
https://www.amjcaserep.com/download/index/idArt/878335

the As for other health conditions, it is hard to tell. MRI is recommended to figure out what it is, and the signals intensities are described in the article.
Awful migraine might be the sign of the brain metastasis and we would recommend the brain MRI performed ASAP

[D.ap]

Hello
May I ask what made you think ASPS? ( alveolar soft part sarcoma)
Olgas suggestion of performing an MRI to look at it further is an excellent suggestion .

The article

“MRI showed a tumor measuring 7×14×13 mm with elevated intensity on T1- and T2-weighted scans. “

Hoping for a no but if it’s so , let’s us know .
Still truly manageable , in my humble opinion .