Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi all, I haven't forgotten about you all. I think about all of you all the time, I am cheering everyone on who is fighting this disease. I want to share with you what I posted on my FB so you guys don't worry that I've gone and killed myself. I ain't languishing in a pit of despair or nothin', Kevi...

Thank you everyone. Your messages of love and support are so comforting. I miss him so. I have started another blog as a way to remember these days of love and grief, and really, so friends and family can check to make sure I'm okay. I have a very irreverent sense of humor and my appropriate filter ...

Hey all, I am very sorry to tell you all that Kevin died last Friday morning, probably shortly before 9 am. He died at home, on the bed in my office. We were able to make him as comfortable as possible with oxygen and intravenous painkillers, and I'm thankful that he did not have to suffer long. Tha...

Hey all, I'm sorry to say Kevin has stopped the chemo. He began experiencing extreme respiratory distress about five days after his first infusion, and it would only be torturing him to refuse to accept the inevitable. I've put him on hospice home care and we're making him as comfortable as possible...

Thanks for the advice, Olga. Kevin isn't having any significant pain from his sacrum met that was treated with SBRT, in fact we've been able to get him down to 50 mcg fentanyl patches. Kevin was showing the most signs of improvement maybe two, three weeks ago but I'm sorry to say that it's obvious a...

Oh man, Ivan, I'm so sorry. We've been MIA, I only now just caught up. I'm so sorry to hear about the new mets, but am glad you were able to get them treated quickly. I understand how you and Olga feel, we too have been spending a lot of time evaluating the pros and cons of dealing with mets vs impa...

Thanks everyone!! I have great news, Kevin is doing much better. He's had some ups and downs the last few days, the crizotinib definitely has some side effects so far, mainly nausea, but we've found a bit of cannabis edibles first thing in the morning helps a LOT, along with Zofran and some Famotidi...

that's great news, i'm so happy to hear this!

Kevin is not on an Obamacare plan, he's insured through his workplace and has secondary insurance through my workplace. Honestly, American healthcare is just absolutely fucked up and that's all there is to it. Healthcare should not be a business, but I'd rather not get into politics here. I do have ...

Yup, Kevin worked on two expansions for World of Warcraft and now works on Diablo 3. I'm not sure why we've run into the difficulties we have. Maybe Obamacare (of which I am a strong supporter and actually feel should have pushed harder to socialize medicine in the US, but shrug politics. I am serio...

Noah's response when I asked about Gemcitabin "Gemcitabine with Docetaxel (Gem/Tax) regimen was one of the options we discussed on Monday. I would use both together if we are going to do it rather than single agent gemcitabine. It is a reasonable regimen to try which is why I brought it up. The...

All of you, thank you so much. Sorry, I'm only now going back and reading everyone's posts. All of your messages of support are buoying up more than my words can express. I will contact the acupuncturist, Amanda, thank you so much for giving me his number. Kevin is getting a line in on Monday, when ...

Bonni, I really love you. Your words filled me with hope, even though I feel like I have none. Thank you for that, thank you.

http://cowandcheesehealth.blogspot.com/ As an update, the Cigna rep for Kevin's company (Activision Blizzard) called yesterday and said they are going to approve the crizotinib. I am suspending my relief, because today I got a call from the pharmacy saying they don't have approval, pending authoriz...

I'm sorry to share that I don't have good news. Seems like the brain mets were the least of our worries. Kevin's lung mets have pretty much exploded, in the typical snowball pattern that seems to display in late stage metastatic ASPS. It's causing him severe pain, like... a 9/10 and 10/10 on the pai...