Cure Alveolar Soft Part Sarcoma International (iCureASPS)

This is a topic for Paula to post her experience with Sutent.

Paula was put on Sutent about 1 month after her diagnosis, before resection of her primary (her primary was called
unresectable in her homecountry)
Receptors (marker) result showed cKit were negative and EGFR was positive.
She started with 50 mg of Sutent per day.
After 28days she had 2 week break during which CT and Pet scans showed
sutent worked well on lung mets: before Sutent treatment scans showed 6 mets in both lungs (3 in each), after 1 month PETscan showed mets shrinked (from 9mm to 5mm)
Doctors decided to lowerdosage to 37,5mg per day.
After 2nd month cycle, CT scan showed shrinkage of her primary about 15% and
there were only 2 mets (3mm) in right lung seen on ct scan.
She continues with Sutent without brakes between cycles now.
Waiting for surgery to resect primary.

Side effects are some, very little:

During first month she was sleepy but she felt it was cause of higher hormone TSH, she started to take eutyroxine (37,mg) to controle it, so sleepness stopped.

Her hair has gone gray during first cycle, then it turned normal again, and
during second cycle it went gray again.

She found many sockets (kind of like bubbles) on her feet, where there usually biggest pressure. Peeling with olive with seasalt made it berable.

Redcells count in blood dropped - we wait till doctors decide what to do with it.

Keep You posted
hugs
Mania

Paula is 6 months after her surgery. After she healed and recovered from this masive operation she got back on Sutent (it was something 3months after surgery).
I have to add some issues to my previous post. Right after resection of her primary scan tests showed that in her lungs there were many nodules - something about 20-25. We tend to think that all of the scans done in POland before surgery were not described well. It looks that mets were numoerous back then as well.
She still tolerates Sutent very very well. She has lost pigmentation, eybrowes, and her hair grow white. Sometimes she gets discomfort from sockets (kind of like bubbles) on her feet, where there is usually the biggest pressure from body weight.
She gets a lot reflexotherapy sessions and she noticed that during breakes from reflexo side effects like footsockets and fatigue tend to be stronger.
Paula stays on a strict diet which was defined after having her blood viewed through a fibre optic microscope. This test provided us with information about what kind of food is good for Paula, and what is absolutely forbiden to eat.
Sometimes she has to go to the toilet instantly - but it's far far from calling it diarrhea. We don't know if its' from diet or from Sutent.
For now this tend to be all of the side effects.
I hope this info helps. If there are questions please email me.

On 16th of april 2010 Paula had her checkup and mets in lungs are the same in number but... the largest is 2mm. Hurrah! It means a little regression of a disease which made doctors to keep Paula on 37.5mg daily dose of Sutent with no breaks in between monthly cycles. Blood tests are done every 2 weeks.
SIde effects started to be stronger - diarreah made her life less comfortable but after taking Trilac (Lactobacillus acidophilus) things got much much better (unfortunately I have no idea what would be equivalent for trilac in english ( One has to usualy take it while antibiotic treatment so your digestive system is not harmed). I will put this info in Sutent chapter.