Question for those with brain mets

[VaMoonRise]

Several weeks ago I started with a terrible headache at the base of my skull on the left hand side that radiated upward over the top of my left ear that would not go away. I would wake up with it, go to bed with it and start all over again the next morning with it. I thought it was tension headaches which I had never had before in my life but just by the way it felt I thought that's what it was. I would go from the bed to the couch everyday and couldn't even bear sitting up, I was only able to get some very minor relief by laying with my head on a pillow and if I turned my head a certain way it caused even more pain. I was also having awful bouts with nausea. I mentioned this to the nurses in the infusion room and to the NP and they kept telling me that it was probably side effects from Gemzar. I haven't been on Gemzar for very long but I couldn't imagine that the side effects would be like this because I had been on harsher chemo's before without feeling this badly. I finally was able to push them to do an MRI of the brain which I had never had one done before since being diagnosed with BC. My Onc always wanted to wait and only do one if symptoms appeared. I much prefer having them done periodically to be on the safe side and to be able to catch something as early as possible but I don't know how often they recommend having MRI's done for patients with mets.

Well, they did the MRI and unfortunately it came back showing two definite tumors and a possible third. One is located in the cerebellum and the other in the cerebella. They started me on WBR and steroids immediately. I just finished 15 doses of WBR this past Thursday. The side effects of the radiation and steroids have been a bit tough, they range from fatigue to insomnia, hair loss (again), sore scalp, sense of taste all messed up along with thrush from the steroids, emotional rollercoaster, and not sure if this is from the brain mets or meds but I have been wobbly on my feet and sometimes feel loopy in the head, lol.

They stopped the Gemzar immediately while I went through WBR and haven't started me back on it as of yet but have continued with me on Herceptin once a week. I just had a CT scan done yesterday of my chest, abdomen and pelvis which I should have the results of on Monday. I am very nervous about the results of the CT scan because I had failed to respond to my last treatment of Navelbine for liver mets and hadn't been on Gemzar long before discovering the brain mets. I am praying that there are no new areas and that the liver hasn't progressed uncontrollably. I also hate that I have to wait 6-8 weeks for another MRI to even find out if the WBR has had any effect on the brain mets. I am trying my best to stay positive and keep telling myself as long as there are no new areas and even if the liver mets have progressed some more that we can formulate a new battle plan to beat them back again. Not knowing if they will put me back on Gemzar or not or start with something else now is nerve racking too. I just hope that after I meet with my Onc on Monday and get the results of the CT and have some kind of plan in place that I will feel better. I will also be glad when I can stop taking these steroids all together.

I would tell anyone that has some type of symptoms whether it be headaches, visual disturbances including floaters, numbness in fingers or toes, unsteady gate or just a gut feeling to really push for a MRI. Be proactive because no one knows our bodies like we do ourselves and always better to catch something early than later.

I am so glad that you are having the MRI done Jean and I will be praying that it is sinus problems or some such minor thing. My thoughts are with you and sending lots of good vibes your way.

Love & Hugs,
Nicola

[Susan2]

When I go in for MRI's, they give me a cloth to cover my eyes. It's saturated with aromatherapy to relax me. I meditate until I fall asleep.

[hutchibk]

That's a great idea! A lavender eye cloth...