Saturday, July 14, 2018

I have been pretty negligent about updating this blog lately so I will try to update everyone now on what has been going on. Here is a somewhat condensed version of the last 8 months or so. I will fill in more details as needed.

I was doing chemo treatments of carboplatin every 3 weeks with neulasta shots the day after to help boost my white blood cell production. Still even with the neulasta, I had a couple of instances where my white blood cell count was too low and we had to put off treatment for a week. My oldest daughter got married a few days after Christmas and we had a lot of company in town for that. My counts were too low for the treatment that I was supposed to have right before Christmas so we decided to put off the treatment until after the new year. My CA-125 counts went down initially with these Carboplatin infusions, but then they started to creep up again shortly after the new year. I had a CT scan at the end of April and it showed some new spots in the lungs and in my lower right abdomen that were concerning to the doctors and indicated that the Carboplatin was not working as well as we want it to.

So starting in May they switched me to a new chemo drug called Doxil, combined with a drug I was on when it was in the experimental phase, called Avastin or Bevacizumab. Before I was able to start on the Doxil, they had to do an Echocardiogram on my heart to make sure that it is strong and working as it should. I will be given the Doxil every 4 weeks and the Avastin every 2 weeks. The biggest side effect with the Doxil is sores in the mouth and on the palms of the hands and soles of the feet. I am not supposed to lose my hair - YAY!

I had my first Doxil infusion on May 21st. They do not give me the Benadryl as a premed for the infusion so I won't be knocked out like I was for the Carboplatin! YAY! The fun part of the infusion though is that they put ice packs on my wrists and my ankles and give me ice chips to suck on the whole time during the infusion to try and prevent the sores on the hands and feet and in the mouth. The idea behind the ice is that it will restrict the blood vessels to help prevent the Doxil from getting to those areas. Other than that the infusions aren't too bad and so far I haven't really had any side effects except the bottoms of my feet are more sensitive and I made the mistake of walking outside barefooted for longer than I should have and ended up getting a really big sore/blister on the bottom of my right foot near the heel. It was pretty painful for a few days and I had to walk around with my tennis shoes on for added cushioning. I still have kind of a skin flap where the sore was but I don't want to peel it off and create any more sores!

I then had an Avastin infusion 2 weeks later and then we left town for a week and a half to visit some family in Washington and northern Idaho. I was fitted for a thigh-high compression stocking just before we left town because I was having some swelling in my left leg - we are not sure if it is caused by the tumor that they weren't able to remove last August or if it some nerve damage or scar tissue caused by the tumor. I wore the compression stocking when we were in the car for a long time and a couple of other times, but it was rubbing the inside of my thigh pretty good and causing some sores there from the silicone that holds the stocking in place. Since our trip my leg hasn't really been swelling up so hopefully that means that the Doxil is working...

My next Doxil infusion was supposed to be on June 18th but my white blood cell counts were way too low so we had to put it off a week. By the next week my counts were much better but when I went in for my infusion my blood pressure was too high... (This is sometimes a side effect of the Avastin.) After taking it several times over the next hour, it still didn't come down where they needed it to but they got permission to go ahead with the infusion provided I would start taking my high blood pressure medication again. So I started taking it that night and the next day when I went back in for my Neulasta shot, my blood pressure was just fine... So either the blood pressure medication works really quickly or there was something weird going on the day before.

This past Monday, July 9, I had my Avastin infusion. My blood pressure was not an issue again which was a relief!

I will say my biggest side effect at this point in this round of my treatments is tiredness and the bottoms of my feet are feeling tender. Some days I have to wear my tennis shoes or slippers around the house so it doesn't hurt to walk. I have a hard time getting up in the mornings - I am not sure if it is because I am not sleeping great at night or if it is a side effect of the chemo treatments. Either way, I have a hard time getting up the energy to get things done some days and it is annoying! One of the side effects of the Avastin is that I wake up every morning with my nose super dried out - to the point where it hurts! Once I blow my nose a few times though it is much better. I have had a few canker sores in my mouth but I have started using a mouthwash that I made with some essential oils and the canker sores that I did have quickly went away and I haven't developed any since! So I am crossing my fingers on that one.

At this stage we will keep monitoring my CA-125 number and I will have my next CT scan probably in another month or 2 to see if the Doxil is working or not. As of right now, other than the tiredness and my sore feet, I feel pretty good and my left leg is feeling better than it has in over a year - although there is still some pain there when I press on my inner thigh.