Fourth Pet Scan....It's Been a Year, and I'm Still Here!

 At last report, I was having trouble with bad leg cramps in the large leg muscles, not just calf cramps, but inner thigh cramps, which were the worst, because there really isn't a stretch that will make those go away quickly, like the "shove your toes upwards" to release a calf cramp. I was having major leg cramps almost every night for a couple of weeks. The doctor thought it might be the Exemestane, the hormone blocker, and he was ok with me going off of it for awhile. I went off it for two weeks. Slight improvement. Since the aromatase inhibitor (Exemestane) blocks estrogen and my type of breast cancer, (invasive lobular carcinoma stage 4, ER positive, PR negative, HER2 positive ) feeds on estrogen, I didn't like the idea of only a two pronged approach (herceptin and perjeta), missing the important third component-the estrogen blocker. Back on it I went. I did some more research about diet and supplementing with magnesium. I switched my magnesium supplement to a form of magnesium called magnesium glycinate-it specifically mentions helps with muscle cramping, and I started taking a supplement for hair and nails called Weem. One of the oncology

nurses recommended it. It has two B vitamins plus biotin and they are delicious tasting, raspberry flavored and they are shaped like cute little bunnies! The leg cramps stopped for a month. I'm still on my hormone blocker so I think the change of the TYPE of magnesium plus the biotin/B complex helped for awhile. After having my latest perjeta/herceptin injection, the cramps have started up again. 

As I get my injection of the cancer fighting meds in my thigh every three weeks along with bloodwork, they alternate legs to reduce scar tissue from repeated injections. There seems to be no connection as to which side cramps occur related to which leg got the injection.

I have not noticed any improvement in reduction of hair loss or my constantly splitting nails with the Weem supplements, but I've only been on it a month. My hair is thin, I'm shedding more than normal and you can see my scalp in the back in places, which since I never look at the back of my head, I don't worry about it too much! Continued hair loss is a side effect of the injection meds I get in my thigh, which still continues every three weeks. My nails split vertically constantly on all fingers and they have to be filed so far down, I can't use my fingernails for anything!

I have bad hip pain and knee pain constantly and neuropathy in my toes and feet. It feels like severe arthritis as far as how painful it can be sometimes. My toes, especially the big ones are swollen and hurt really bad. After I sit anywhere for awhile, I get up and move like a 95 year old, all bent over. It takes me awhile to get going, but once I do, I'm on the move! I'm reluctant to sit down these days!

I have had several severe bloody noses this week, and continue to have sinus infections more than the average person, so my oncologist wants me to go see an ear, nose and throat doctor as soon as possible. As I lost my hearing in my left ear suddenly this morning, I headed over to the urgent care center today. No infection, only partial fluid in the ear, the doctor thinks possible nerve damage....get to the ENT as soon as you can, was the advice. SIGH....I have an appointment, but not soon enough for my piece of mind.

My blood work is holding steady. I have to remember to drink quite a bit of water or my kidney numbers start protesting. I consistently have low numbers for platelet volume, and something called eosinophil absolute which has to do with white cell production and immunity. These immune cells make up only 1-4% of your total white cell counts so that is not worrisome to the doctor as they are close to the bottom level of the range. 

***No new hot spots on the PET scan, brain MRI shows no hotspots or lesions, so that part is all good.***

On the outside, everyone says I look good. That always makes me feel like, gee, am I supposed to look sicker, being stage 4? Guess that's because I don't appear to look like I'm slowly wasting away or have a terminal disease. On the inside, I feel like I am falling apart and I hurt all the time. If it isn't one thing, it's something else, and I feel like my body is failing me. Mentally, I manage to keep a stiff upper lip, and try not to complain about pain to anyone but my closest family, and here, just so someone can learn about how this disease affects people in different ways. It's tough mentally dealing with constant pain as anyone who does can attest to that. There are worse side effects with some of the pain meds they have suggested, (Gabapentin for one,) that I have chosen to try and go with over the counter things for now. I can forget about pain for a short while when I'm teaching, as the kids give me so much love, it takes me away from everything that is going wrong and reminds me of some things that are going right. 

I am thinking of trying accupuncture, but insurance doesn't cover it, so it would be an expensive trial. The oncologist said it has helped a lot of people!

I hope in future posts not to be so negative! I'm still here.....for that I am grateful and I keep looking for the positive each day. I am very grateful for Eldy, who is as solid as a rock, and keeps me steadily moving forward. 

Thanks for checking in...

                                          Jeannie