A small sigh of reliefby Kyle & Vanessa on 05/02/12
Today we met with Dr. Blackstein for our scheduled follow up appointment to get the results of Kyle's MUGA scan (test performed last week to test Kyle's heart function). Much to our surprise, more good news was delivered all around! It turns out that there hasn't been much damage to Kyle's heart at all since he started chemo back in October - a slight decrease in function was noted by the radiologist who reviewed the scans, but nothing considerable.
Dr. Blackstein said he could continue with Doxorubicin treatments, however casually in our conversation he briefly mentioned an alternative that he thought we may want to consider. He told us there were two companies manufacturing this fairly new composition of Dox called liposomal doxorubicin - brand names Myocet and Caelyx. He explained that what these manufacturers have done is essentially used the identical drug, doxorubicin and placed it in a sack that when transmitted would protect Kyle's heart and other organs from damage. Since this alternative that we MAY want to consider sounds like it may be our dream drug, we are astonished as to why we have never heard of this option anytime over the past 6 months (surprisingly we also never came across it in our own research...totally dumbfounded by this one). Well, it turns out that possibly it was never mentioned because of the cost - approx. $5000 per dose of Myocet/Caelyx vs. $100 Doxorubicin. Also, since these drugs have not been approved for use in the treatment of Sarcoma (only approved in Canada for ovarian cancer and a certain type of lymphoma) OHIP - Our provincial health care system - likely won't foot the bill, and we guess Dr. Blackstein assumed we wouldn't be interested in paying for it!? We're still trying to figure that part out. Anyway, Dr. B feels confident this is the right direction to go since the last CT scan indicated Kyle's tumours decreased in size, which means Doxorubicin was working. At the same time we all agree we want to minimize any potential risks...we don't really need any more problems right now!!
Getting our hands on one of these drugs may pose a bit of an issue due to distribution and availability in Canada; however the pharmacist at Mt. Sinai, Marcia (who is SO amazing) is on the job - shes contacted the manufacturers, pharmaceutical reps and anyone who will listen. Also, I've been in touch with Kyle's private insurance company to inquire about coverage since we will likely have to pay for the drug once it's located...although that doesn't look too promising.
We've taken a small sigh of relief after all the good news today...we pray our journey will continue on a positive route and the new plan will come together for us in the coming days. We should know the status of whether Marcia is able to locate one of the drugs by Friday. We will meet with Dr. B again next Wednesday and hopefully Kyle will be back on his way to recovery.
We'll be in touch soon...