Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Apparently you can have early delayed brain injury from radiation 1 - 6 moths after radiation. This fits my situation. Looks like after gamma knife I avoided acute radiation damage and imagined I was already save. Well these reactions can be severe, but they usually resolve on their own, so I am not too worried.

Hi Jussi
I’m sorry to hear of the edema / swelling .
I hope you are able to get report from gamma knife surgeon soon to know what is going on .
I’m glad the low doses of steroids are helping .
Your gamma knife was 8 weeks ago ?
Hope today finds you feeling better
Debbie

A full story link


https://link.springer.com/article/10.10 ... 011-0179-x

I certainly understand that we are talking primary brain tumor (glioma)verses metastatic brain tumor that you have to combat, however the blood brain barrier is one in the same when talking medicine treatments and imagining results.

Hope you get word soon.

Let us know

Love
Debbie

Gamma knife treatment was in august, so it has been longer than 8 weeks. My neurological symptoms are suprisingly well controlled at the moment. I can continue to lower steroid dose.

Hill et al12 previously reported on four patients with RCC and breast carcinoma who had undergone previous surgery or radiosurgery for intracranial metastatic disease, who demonstrated a reversible increase in contrast enhancement and peritumoral edema on brain magnetic resonance imaging related to the use of sunitinib or sorafenib.
....The mechanism of the increased enhancement and peritumoral edema is possibly related to leakage of the drug across an impaired blood-brain barrier that has been damaged by previous radiation or the metastatic lesion itself.
http://ascopubs.org/doi/full/10.1200/jco.2009.26.8193

Thanks. I seen renal cell cancer cases with sutent induced pseudoprogerssion after whole brain radiation as well. Also radiation alone can achieve pseudoprogression. Knowing all these things will make reading my scans wery difficult i wanted to swith to ceridanib immediately after we found out my brain tumor sample didn't respond to sutent. At the moment my clinical situation is worse than before (I need steroids) so if scans look at all worse than before I really don't want to hope it is just pseudoprogression especially if cediranib truly is available. Risks with continuing with sutent would be unacceptable high. Untreated mets are smaller than 1 mm mow and they cant grow much bigger without blood supply and 1 mm met doesn't treat my life, so I would love to treat situation now with most effective antiangiogenic medication, which just happen to be Cediranib for asps. By the way it indeed sounds possible that cediranib is available in Europe, but not yet in usa or Canada. It doesn't matter what it is approved for. Asps is undeniably indicated as off label use, so it might take lots of paper work, but shouldn't be impossible.

Jussi,

I would assume when you get your scans that they will show either some edema.. and or none? With little increase of tumor size?
Until then maybe its not totally clear why you have headaches and are sick to stomach other than side effects of sutent..?
Remind us when you discontinued keytruda and how long you took it?

As usual Olga was correct: Cediranib is only available in clinical trials. As few english asps patients are receiving Cediranib based on compassionate grounds I imagined that Cediranib would be available. Oncologist was thinking different medicine with similar name. As I have dyslesia myself I found it hard to be mad at him.
We had a meeting with oncologist today. Brains stable! There is something in my mandibula again. Some enganment in operated area and most likely new met in other side of mandibula. (Jaw bone). So other jaw surgery near future. Also met in liver.It has been there before, (since june) but radiologist missed it. It hasnt grown. It is little more solid now than before. It is still very small, but it close to important blood vessels, so it must be dealt with sooner or later and as we know I prefer sooner. I was very scared about scan results, so it was hard for me to take information in. I think first we ask Littrup about treatment of liver met. Oncologist will take discussion about local treatment to meeting. I am very happy that he sees benefits of local treatment in my situation. As systemic treatment I continue sutent. Need to take break for it for jaw surgery, but because severe rebound My oncologist and I both feel that break should be as short as possible maybe week before surgery. I am very happy about brains being stable and I see no reason why Other new mets couldnt be treated. Oncologist contacted drug company (AstraZeneca I think) about my situation, to see if compassinate use would be possible.

Not that bad. You can also ask Dr.Littrup re cryo for the local recurrence and new jaw bone mets.

Great idea. We will also ask surgeon, who performed my mandibular met resection, what he thinks about these changes in scans. Both my wisdom teeth were removed during surgery, so as last time inflammation is again possible explanation, but lets not repeat same mistake as last time. Lets deal with this immediately. Usually I tell surgeon to do whatever it takes to get clear margins, but now Our goal was just to by time for gamma knife treatment, so I knew I most likely would have to deal with this. Surgeon felt he got everything visible in the scan, but it could be that microscopic cancer was left behind. For liver tumors they just started doing ablations in Finland, so we dont yet have lots of experience about them, so if Littrup cant treat liver met, then open surgery or cyper knife are most likely best treatment options available in Finland.

Surgeon just called. He ordered spirometric ct (sorry I dont remember exactly what it was called), but I need new scan of my jaw to diagnose changes.

Scan is kktt. I had it before with my jaw met as well. Sorry I have no idea how to translete kktt kartiokeila tt into english. Apparently it is called Cone beam ct.

Sunitinib related osteonecrosis of jaw: a case report.
https://www.ncbi.nlm.nih.gov/pubmed/22676833

Thanks. This will calm my nerves a little. Oral surgeon Kellokoski (great doctor) was also little worried about my plan to use Sutent, so he was happy he removed both my wisdom teeth during surgery. So I trust he is able to tell what is happening in my jaw after cone beam ct. We will also send my scans to Littrup after they arrive. If Littrup can ablate liver met then I see no reason to researh other treatment options for this lesion as I remember Littrup's exceptional skills from my previous treatments. We will think more about my mandible after we know what is happening there, but as we need to ablate liver met might as well ablate possible mandibular met or mets once we are there. Because likely rebound effectI I try to avoid open surgeries as they would require longer break from sutent.

Jaw bone is healing. Had cone beam ct no sign of disease recurrence. New bone is forming. I quickly looked scan myself and saw nothing, but I have alvays been very bad at detecting bone abnormalities. Looks like control of my disease can indeed be re-established as I said to finish neurosurgeon in early summer.