WBR - side effects

[Isabelle]

Dear fellow whole brain radiation survivors:

I seem to have lost my sense of taste after 10 out of 20 doses of whole brain radiation. Or, maybe it is my sense of smell, such a major component in taste.

Whenever I get my doses of radiaiton, I always smell a metalic/sulphur smell. I asked the technician, and she said that smell is only in my head because they are near my olafactory nerve. Very weird.

I thought at first food was tasting like nothing because of a bad cold I was geting over. A lot of sinus congestion.


Will my smell/taste come back? I sure hope so. I dear friend gave me an enormous box of chocolates from an excellent chocolatier in NYC (Jacques Torres) and they all taste like nothing right now! I am still eating them, trying to taste something!

This is not the end of the world, but like my hair, will taste come back

Isabelle

I had WBR several years ago so I do not remember specifically what s/e i had. I did have a cloaked ear that had to be cleaned out by the ENT because of all the dry skin. So that helped. As far as my hair I had read from another woman on the boards to ask for blocks at the top of my scalp where the RT overlaps so that I do not have a reverse mohawk. The Dr. put the blocks on towards the end of treatment. My oncologist said out of all of his pts. my hair by far looks the best than any other pt. he has ever had. My hair is thinner than it was but you would never guess I had WBR. I did have some side effects and I do remember they went away soon after treatment. Good luck to you! p i kna

Isabelle,

You are not crazy. There IS a smell during the WBR. I remember it distinctly and was told that this is common. I also lost a lot of my taste, but not that for sugar!. It did all come back. As for the hair...that's a different story. It looks like I've got lint growing out the sides of my head and nothing on top.

Love and light,

Lisa

[Isabelle]

Thanks for the feed back on side effects. I bought a great wig and will get another for free at my cancer center. I had them styled this time (I have lost hair once before) so I feel like me and not just like someone wearing a costume.

As for taste/smell it is hard for me to cook dinner or get excited about all my favorite foods. I guess it is also a little nauea I am experiencing but that never stops me from eating usually.

I am doing a really really low dose of decadron because I don't have bad symptoms and that is making this whole thing more bearable, except not being able to taste what I eat which is one of my great joys.

So, like my hair hopefully most of my smell will be coming back.


Isabelle