Monday, July 7, 2008

Starting Chemo

I have decided that it will take a long time to give past history so I had better start with current and work then work out from there in both directions!

So New news is that chemo starts tomorrow! I am very excited! They say that if it works (shrinks the tumor) I will have less pain within a month! That is a hope that is worth all the side effects!

The plan is to do 2 rounds (3-4 weeks each) and then do an MRI. If there is any shrinking or softening we will continue. If not we will adjust dose and/or meds. We will continue with the chemo until the tumor is manageable (there is little to no hope of it ever being GONE) and then use other drugs, surgery and/or radiation to keep it that small.

We are going start with weekly IVs of a low dose (have to get exact dose tomorrow) or Navelbine and Methotrexate.

With the low dose they do not anticipate as many side effects. I will probably NOT lose my hair and have a much lower chance of liver and heart damage. I do have to wash hands, use a foam tooth brush, electric razor, watch my diet, take my temp 2 times a day, and use pads instead of tampons. Side effect we are anticipating are some nausea, low blood count, some fatigue and mouth sores. I think I can live with that list. I guess we will see.

Wish me luck!


Laura said...

My thoughts and prayers are with you as you start your chemo. I am in the Northwest as well and have been through what you are about to start as well as many other treatments. If you ever need a fellow desmoidian to talk to please feel free to email me!

Ali Gator said...

I've been living with a Desmoid Tumor for 4 years (that I know of). Because of the location and size chemo and radiation has been ruled out. Surgical removal is out as well because of the damage to the nerve network it would cause. Besides, they say it would probably just grow back. Nasty buggers these tumors, eh?

mama2duke&beck said...

I've come across your blog a few times and am always hoping for an update....?..

My desmoid was surgically resected in July 2009, so I am well-aware at how tough the road is to battle one of these beasts.

Anyway - I'd love to hear more and hopefully it will be great news on how you beat this ugly tumor!

soila rios said...

Were is it exactly? Mine on my neck and I'm having surgery on April. Thanks.