Fabulous news from chemoland

Posted by Sammy on Dec 11th, 2009 | no comments

If you have been following my blog at all for the past few months you already know that this has been the year from hell for my family. Even though Gary finished his normal chemo regimine back in September he was still getting chemo via the ommaya port in his head to treat his spinal fluid. He has been getting NASTY episodes of dizzy spells and blackouts that causes him to fall after each new dose. To the point where he gets a few days to maybe a week (if he’s lucky) where he actually feels pretty good and then he gets hit by another dose. He had a dose last week and has been having a very VERY difficult time with it. It almost seems like each time he goes through this the symptoms get worse, kinda like they are compounding. We were pretty sure the symptoms were caused by his depocyt treatments and now we are VERY sure it is.

It finally got to the point where this morning he told me he wasn’t sure if he was going to get through 2 more doses of this. As soon as he told me that I picked up the phone and called not only his local oncologist which is soooo awesome and took my call immediately! But I also called his team up at the NIH in Maryland. His local doc prescribed more pills of a steroid (dexamethasone) that he has to take for the first 5 days once he gets a new dose. They usally do not like you taking this med for more than 5 days because it can have nasty side effects, one of which is a stroke (there are many more purely unpleasant side effects).

Well he got a call around 11:45am today from the team up at the NIH. All of the bigwigs were conferenced in just as if he was at his very own doctor’s appointment. They decided to stop his chemo which makes last week’s dose his last dose. He will FINALLY get to recover for good!!! Obviously there is risk involved with him stopping it 7 weeks early, but since they are dealing with his brain they just can’t chance things anymore with the severity of his symptoms. So I’m so happy to finally announce after a LONG 7 months of this nightmare that my wonderful husband, that has been SUCH a fabulous fighter, is finally done with chemo.

May he never need any of that nasty stuff ever again!

Bye Bye Round Numero 4

Posted by Sammy on Sep 1st, 2009 | no comments

As we get ready to take off for yet another trip to DC for what will be round #5 I figured I’d come online and post an update on how this visit home went. I’d also like to post some things that might be helpful to others going through this that we have figured out in the past 4 rounds, this was brought on by a recent comment to one of my previous posts.

Well this trip home has gone a lot better than the past 3 trips home. No visit to the hospital *knock on wood that it doesn’t happen tonight of all night*!!! No fevers!!!! A pretty damn good appetite! We did learn that with his depocyt injection into his ommaya he NEEDS to take a pill called dexamethasone for 5 days or else you are very likely to have headaches, nausea, a slight fever, neck pain, back pain, hmmmm am I missing something? Yeah so Gary had ALL of those side effects. Why? Because no one reminded us to refill his prescription which there were refills on! So major booboo on our part!!!

You might remember that marijuana-like drug that Gary was prescribed to help his appetite. Well the name of that drug is called Dronabinol and also goes by the name of Marinol. Gary only tried those pills a few times while we were still up in DC this last trip but he hasn’t really needed it since because he has had an appetite. I guess all it really takes is having a few doctors get all up in your face telling you that you NEED to either gain or maintain your weight and that you can eat all of the crap you want NOW when you want it

Some things that he has discovered that he actually enjoys eating/drinking…..Carnation instant breakfast with whole milk and 2 scoops of vanilla ice cream, it makes one fabulous shake according to him. Ok maybe not fabulous, but its pretty good. Another shake mix that he has tried that have something like 600 calories once you mix it with whole milk is called Scandi Shakes. He particularly likes the vanilla flavored shake mixes also mixed with milk and ice cream.

Some of you might remember me and definitely Gary writing about him needing applesauce with his prednisone. Well the reason for this is because he’s taking 200mg of prednisone for the 5 days he is on EPOCH. That’s a HUGE dose compared to what others take. The pills are huge and super chalky as they go down. One of his nurses from his first round actually recommended trying the applesauce to help and it does help most of the time. All he does is jam a pill into the applesauce and he quickly swallows the pill and applesauce before his taste buds can actually detect the prednisone. It works if he’s fast enough and gets enough applesauce to coat it.

Another thing I’d like to share with others is a website his social worker turned me onto since I don’t really have much time go to a support group in person. It’s called The Wellness Community and they have online chat support groups depending on what you are looking for support with. I’ve only been able to participate with 1 group since they happen to meet on Wednesday nights and that corresponds with our travel days. But so far its been a GREAT help.

Alright that’s my update for now, I’m sure I’ll update a time or two while we are up in DC. May round #5 go as breezy as this past one!