Friday, January 16, 2009

A new treatment plan?? Another surgery??

Hi everyone...

On Thursday, shortly after I wrote about Tuesday, I got a call from the Drs at MSKCC. The Dr that called me was Dr. B. He was the Dr. that we saw on Tuesday afternoon when we got the MRI results. Anyway, Dr. B said that he spoke to Dr. G and Dr. D and they came up with a new treatment plan. They feel that the best chemo drug to try now is Temozolomide. It would be given once a day for 5 days and then he would have 23 days off of the meds. Then start the once a day for 5 days and 23 days off again. After the 2nd round we would go in for another scan to see if this treatment is working. If it is this treatment could go on for at least a year. Temozolomide (or Temodar) is an oral chemo drug that interferes with the DNA reproduction of the tumor cells. The side effects are as concerning as the last protocol, like they are with every chemo drug. The major ones seem to be nausea/vomiting/diarrhea and myelosuppression & the dropping of blood counts, so it looks like there will be many more transfusions in our future. (So PLEASE donate in Mike's name!! Unfortunately you can only donate for him AT MSKCC because they don't accept blood from anywhere else. I will send you the info if you need it!). Thankfully the peripheral neuropathy issues aren't listed as a major side effect so I am hoping that between the new chemo and the physical therapy he will get back on his feet soon!!
One of the problems with deciding to go with this treatment is that it is an oral chemo. And not just any oral chemo, it's a pill. Now, anyone who knows Mike should know that his diet consists of Cheerios, pretzel sticks, Belgian waffles, pancakes, french fries and eggs with ketchup. He has always had a horrible diet and it has only gotten worse on chemo. So, since sticking myself with hot pokers once a day would be easier than getting him to take a pill that is going to make him feel sick they want to talk about putting in a G-tube. A G-tube is a temporary (but long term... can last for 6 months before needing to be changed) feeding tube placed in Mike's abdomen. I will have to administer the chemo at home through this G-tube. I am a mess about possibly having to have this done. I guess a plus to this g-tube is that I will be able to give Mike nutritional supplements through it as well to ensure that he is getting the calories, vitamins and minerals that he needs to get through this chemo like the champ he is.
Now, onto my issues... I am losing my mind thinking about doing all of the G-tube stuff at home so I am calling all nurses and medical professionals to help teach me and watch me until I am comfortable doing it on my own!! Any advice pre-G tube you can give, any post-G tube teaching and tips you can give are GREATLY appreciated! And if you can come over to check and help me as I am doing everything the first week or two I would LOVE that... send me an e-mail, a message on Facebook or call me and I would love any help and/or advice you could give me.
So, we go into MSKCC on Wednesday (which ALSO happens to be Katie's 7th birthday!! :) YAY!) to talk to the Neuro-Oncology team about the new chemo and the Surgery Team about the G-tube. I have a bunch of ??s to ask already and I am sure there are only more to come to me. My mom is coming with me so she can be another set of ears when I am talking to the Drs and my sister E is coming to entertain Mike so I can actually carry on a conversation with the Drs. I am hoping to get answers to all of my questions so that I can be comfortable with my decision.
Well, that's it for now... I will update after our appointments on Wednesday. Please keep those prayers coming! Sending love and hugs to you all!!



dude said...


how big is the pill he'd have to take?
maybe, just maybe he'll surprise you.
let him practice with some m&ms, they make kids happy.

DysFUNctional Mom said...

Good luck with it all!

Jennifer said...

wow. that is a lot of new info. it sounds like a good plan until i got to the tube... but that didn't sound horrible to me, just a little scary.
i'm sure if the drs feel it is a good plan and will work then it will go smoother than you think... but i do see your concerns, worries and nervousness about it all.

I'm always thinking of you and the kids and your family. You are all in my prayers as well. Mike is one amazing kid. :)