Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan, knowing the history of how f came to leave the boards, and that you were a direct part of it, using the nickname fictional gives the appearance of being mean-spirited rather than random. the nickname you gave LCMA appears much more random than for 'fictional'. that is just my personal opinion ...

Why are 'F''s postings be labeled as Fictional? I find that completely disrespectful and very discouraging, as we have found her to be the most knowledgeable about alternate treatment options (rather than parroting Cediranib like a handful of other posters on here. There are other treatment options ...

Hi Rheza, Lucio is on Sutent also and also playing around with his dosings. His doctor confirmed that when you are not taking medicine, the tumor has a chance to grow back. So if you were to take scans of every day you are on Sutent, you would probably see shrinkage or stability, and then when you a...

Hi again LCMA
i hope these second opinions are offering you piece of mind with your personal treatment decisions, especially enough to maintain a positive attitude
have you tried calamine lotion for the bumps? does hydrocortisone interact with nexavar or is it a just-in-case type situation?

Hi Mania! I hope Paula's meeting with oncologist goes well tomorrow. Here's a neat picture that shows what is going on with the lungs: http://lelaneemeollamokowich.wordpress.com/category/lymphatic-system-lymph-nodes/ http://lelaneemeollamokowich.files.wordpress.com/2008/03/lymph-nodes-of-pulmonary-s...

Hi Wendy, I know how anxious you must be feeling, we are still forming a go-forward plan with lucio. Since there's a good month or so to gather your thoughts and research it's probably a good idea to take this opportunity to get second, third, fourth opinions (assuming insurance covers it of course!...

Hi LCMA, are you continuing to take Sutent or are you completely off while you decide your next steps? I was wondering if the doctors had thought about increasing the dose during the interim to see if they can get a continued stability or if that idea is just dumb?
-lokelani

Thanks Olga, Lucio's next appointment with his oncologist is later this week, so he will be sure to bring it up then. Side effects- He had a strange itchy red rash appear on his chest, arms and back the first night, so we bought a few different ointments to test on different sides of his body (btw, ...

Congratulations 'K' Lucio and I hope you have a smooth recovery. We were very impressed with UCLA, did you have any trouble with doctors and interns waking you up in the morning (teaching hospital and all)?

Congratulations Brittany, this is really awesome news

does anyone have experience with UCLA cryo? lucio was evaluated and seems to be a good candidate... they also suggested low-dose stereotactic radiation therapy (possibly in 3 sessions). reading about cryo makes it sound really good... surface protein recognition, a venue for building up your body's ...

Thanks for the well-wishes Bonni and Amanda :D He decided to start on it right away. He got word from NCI that it should not affect his participation in a future Cediranib trial (as long as he doesn't plan on taking both at the same time!). Good news for those that have to stop Cediranib and want to...

Lucio started on Sutent last night and this morning side effects were Cediranib-type fatigue. He's been back to super healthy eating and exercising regularly. Low-sugar diet, lots of raw healthy veggies and sprouts. Does anyone know if drinking green tea will interact with Sutent? It's in a similar ...

Lucio was approved for Sutent, no appeal necessary
I guess I'll start a Lucio on Sutent thread.

ivan, i do not see how any of your comments can be construed as constructive. and please keep a record of these conversations here, these were all part of our next steps on proceeding with lucio's treatment before it degraded. everything that you have said is a given, everybody understands those poi...