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[Teddy]

Last night my husband started ambisome (or ampho the terrible as it is refered to). I would appreciate hearing about anyone's experiences with the initial doses.
I expected that it would be difficult - perhaps much like chemo. But it was extremely painful and once the med was in his pic line and started for about 4 minutes the pain was so extreme ((10+)and excruciating that they ceased the treatment.
We are going to try again today (Oct 4) at a slower rate with a predosing of pain meds and benedryl (?) over 4 hours rather than the rate of 2 that we tried yesterday.
Any input about the initial effects if anyone had a simuliar experience we would sure appreciate it.
Because of the size of the lung involement the docs really want to be able to use this drug.
Thank for any info helf
Jennifer

[insanemom3]

I had that same reaction to it the first time as you did, and then they tried to give it to me again with pre-medicating me  with hydrocort and benedryl  and the same reaction happened again to me they finally said that I am allergic to it!!! I have never been allergic to anything before in my life... Anyway,  they really wanted to attempt to use that drug because it was the only one safe enough for me and my baby. I was 7 months pregnant when I got blasto in May of 2008. We ended up using Diflucan to get me closer to my delivery time and then after I had my baby the switched me to Itraconazole, I did not have it in my  lungs though, my came out as a huge lesion the size of a grapefruit on my right shin! Good luck and my prayers go out  to you during your treatments. I was released from treatment in Jan 2009, it is a long road but you can do it!!! Hugs!

[Wilson3]

Jennifer how did everthing go on the 4th??
Hubby responding yet to treatment?
wilson3

[Teddy]

The next two treatments went well. Premedicated with Loratab and Benedryl and a 30 minute 500ml bolis of saline. Then dellotid along with the Ambisome. Followed by another 500ml bolis of rapid saline drip. Unfortunately on 4th treatment day he awoke to full body rash. Hot, raw, lobster red, head to toe. 2-5% of patients experience this. So the Ambisome is not a treatment option for him the first try probably should have been a good warning that his body was not receptive to the med. Back to Intraconozole which he is tolerating well along with meds for the pain, benedryl for the rash and tesalon pearls for the still unproductive cough. He is in good spirits and having good hours where he can function well free of too much pain. We're glad to be out of hospital and healing at home for now! Not attached to the IV pole 4-5 hours a day. Slow and steady it's going to be! Big pats to Wilson, take care Kristin. Jen

[Teddy]

My husband Chuck had his first follow up chest x-ray yesterday. The blasto mass in his left lung has shrunk more than a third of what it was after only two weeks!! The doc's are amazed. We are thrilled. They weren't even going to do a chest x-ray at first thinking that given the size of the original mass that an x-ray would not show any change for at least a month if not two. They can only attribute the quick initial shrinkage to the 4 days of ambizome he was on. It is amazing to us, how fast the turn around is going for him!!!   

[Wilson3]

YYYEEEAAAHHH! 
this is WONDEFUL news!! what a perfect holiday present!
wilson3

[Wilson3]

So how is the family??

[Teddy]

Hey Kristen,
The family is doing pretty well. My husband Chuck had a chest xray last week that showed just one small pea sized spot. His doc figures he will treat him for another two months and with a clear chest xray and good labs he will stop the meds. We are very pleased with his recovery. We figured he would treat for at least 12 months but, we'll gladly take 8.
My neice is another story...of course she's 12 and we fight her to take her meds on time and regularly. I suspect she'll be at the 12 month mark to see her symptoms and lungs clear.
Ted seems to be free of symtoms, but has moments that make me wonder...we're doing another Blasto test next week and xray. He's the one I'm most worried about cause he of course can't tell us how he's feeling if a relapse happens to occur. We'll have to watch him closely. As I say this, he's having a little cough. Ugg! I know I'm gonna worry forever! My job, I guess.
All three of our patients need to build back their strength and stamina. Ted(the dog) especially seems fragile, just from being inactive I think. 
Jen : )