Dramatic Weight Gain

I have put on 20 lbs over the past 6 weeks! -this is the time frame I have been on Decadron and Avastin. My appetite has been out of control, and I have been eating a lot more than usual, but geese I wouldn't think one could pack 20 lbs this fast. My gut is so large that I have a real hard time bending over to put my socks on. Most of my pants don't fit anymore. My weight last year before the PC-V chemo was steady around 185. Loss of appetite and lack of exercise while on chemo for 9 months dropped me down 15 lbs to 170.I have a call into the doctor to make sure this is not a sign of a bad reaction to the medications.  Tomorrow is my last day of weaning off the decadron, my appetite has receded some - hopefully I can get back to 170.

I'm still having the severe leg and hand cramps, but not as frequent. I have learned some triggers and avoid them vehemently. One trigger was the curling of my foot needed to put on shoes. Now a wiggle to get the shoe as aligned up as possible and only press strait down. The other odd thing I caught onto was the attacks would usually happen shortly after I woke up, sometimes waking me up.Now I'm careful to not get out of bed immediately and give myself a couple of minutes of gently wiggling my toes.  Even with these adjustments the leg cramps are happening a couple times a week and injure my legs so bad I hobble around for days in pain. My hands cramp up a lot when I do any fine motor control like using a pen or going to pick up small objects.These are just as painful as the leg cramps, but don't last as long and have no lingering pain after they subside. The doctor did some blood tests (Calcium and Magnesium levels, I think), but they came back normal. I'll push the issue with the doctor if this continues past the Decadron and Avastin. Enjoy my mug shots 6 weeks apart.

The past week or so I have been having pressure headaches and have been generally out of it. My left eye hurts too. I came up with a catch phrase for this "out of it" state of mind..."observation mode". Its a state of mind where I can see and hear everything around me, but do not have the sense I can process,store and react to any of it. Then when people press me for a response, I don't have a grasp of what was said or what I saw and I end up saying something like "what?, I don't know what you are talking about". How often during the day I drop into this observation mode depends on how my head feels.

I'm tired of writing, so I'll sign off.

October '18( 190lbs)

July '18 (170lbs)

Avistan Working

I had a MRI and appointment with the oncologist this week. The MRI showed a lot less swelling and blood products around the new growth. The growth did not change in size, which is awesome news. I was gravely concerned that seeing the rate at which this came on that it would be taking half up my brain by now.  The doctor attributed this improvement and stability to the Avistan. With that, we are going to wean off the decadron steroid - good grief, this makes me so hungry I literally put on 10 lbs in the past month. Eating so much makes my digestive system very uncomfortable. My poop shooter is happy with with a 2 or 3 small meals a day. I've been eating 4,5,6 times a day.

My worries have been fueled by my ongoing muscle spasms in my legs, and have recently started happening in my hands. I have such bad episodes that I could not stand/walk for a day following. The doctor sort of ruled out that these are seizures because they are happening on both sides of my body. With the tumor on the right, he would only expect these types of problems on the left. We're looking into deficiencies in my blood work to explain this. I suspect some of the problem is rooted in the extreme stress of the whole situation. I need to put some meditation into my daily routine to calm my inner self.

Going forward I'll be getting the Avistan every 2 weeks and an MRI every 8. It was discussed when we started the Avistan that there is no prescribed number of cycles similar to chemo. This will continue as long as it's "effective" in holding the growth back.