Nino from Berlin - Dx 2015

ASPS patients post updates here, including tales of success :)
D.ap
Senior Member
Posts: 4104
Joined: Fri Jan 18, 2013 11:19 am

Re: Nino from Berlin - Dx 2015

Post by D.ap »

Hello again Nino

Good advice to wait until your cold is better .

I’d sure hope that a brain scan would be performed before you start axitinib as if the healing isn’t complete then there is more of a chance for bleeding from the tki ,as well as inflammation later from prembro.
Certainly I’m not a doctor but run it by your team.

As I understand it Asps operates on VEGF to grow ,and the sarcoma causes tryosine kinases factor to cause growth and become dis-regulated . This is why our tumors are a quagmire of vessels that are seen with in our resected tumors . This as an end result of the tumor VEGF/TK gone rogue .😬

The radiation of the brain tumors can exasperate the tissue to attract the tryosine kinase (TK) cellar activity..the repairing of the damaged tumor. You would be on a tyrosine kinases inhibitor(TKI) which would throttle back the activity of the TKs ,but what would be the cost /benefit factor is my question. Especially within the skulls limited area where inflammation should not be happening if can be avoided .
Debbie
Ninko
New Member
Posts: 9
Joined: Fri Sep 30, 2022 3:42 am

Re: Nino from Berlin - Dx 2015

Post by Ninko »

Hey, just wanted to give a quick update. Last scans revealed two lesions, one in the right lung and one in the brain. The one in the lung was a pre-existing node that showed a growth of about 2mm (so now ~4mm) and the one in the brain was a bit bigger, 8x7x5mm in the left frontal lobe. Unfortunately the brain scan was done later than planned, so more than 4 months passed since the last MRI, so it probably could have been found at an even smaller size. Also in February I already noticed a small ~1mm lesion on the scans in that part of the brain, but my oncologist said it did not really look suspicious for metastasis. The other two lesions that have been treated with radiation are showing good response.
The new lesion was treated with stereotactic radiosurgery and I tolerated the treatment really well and didn't have to take any steroids. Also three days after radiosurgery I received another dose of pembro, so hoping for some synergy here 😅 But given that new lesions, though just a few, were appearing, I now think it was definitely the right decision to start systemic treatment.

Otherwise I am tolerating the combination treatment quite well. In the beginning I had some rash and pruritus, but only for the first few weeks. Also I am currently slowly escalating axitinib dosage, being at 6mg bi-daily right now. The only adverse event that I am experiencing from axitinib is slight oral mucosits, but as PMID 31101577 described I am adding some folic acid supplement now and then, which does not make that AE really noticable at all.

In September I am going to have my next scans, including lower extremities to check on that weird lesion again. My oncologist also decided to switch to MRI for abdomen scan to reduce radiation exposure in the long term :)
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