Monday, May 28, 2018

May 2018 Lung answers, chemo pills and new scans


Hello all! Time for an update.  After the lung biopsy it took a while for me to feel normal again but I am now good as new! A few weeks after the biopsy I got a call from my Milwaukee doctors telling me that what is on my lungs is the same kind of cancer that was in my head. This is called a metastatic growth. Cancer cells from my brain traveled to my lungs.  It is what I expected to hear but it was still hard to hear it at the same time. I would much rather worry about one part of my body, not two! But I know we have these different chemos to start and I have faith in them working for me. 

About 6 weeks ago I started the chemo pills. A few we had to fight my insurance for. Most pills came through but one did not so my doctor ended up upping my dosage on the others to make up for the pill we lost.  I was really anxious and nervous about starting these pills because I wasn’t sure what my side effects would be. There was long lists for each pill but everybody is different and you are each affected differently. Some I took in the morning and some I took right before bed. The one before bed, I take two different nausea meds an hour before and hopefully by sleeping any nausea I would have, passes. Luckily I can say I was never nauseous on any of these pills. Some days I feel off and I felt tired most days but that was the most of it. I had many different skin problems though.  From rashes to zits everywhere, and my hair color changing to white! I had some face swelling too and a bit of peeling skin on my hands and feet. The peeling can turn to blisters which I was super worried about but it never got to that point.  Because I didn’t feel sick, I can handle these kind of side effects. But the last three weeks my white blood cell count was low and I was not able to be on any of pills. Luckily besides being tired, I really couldn’t tell that anything was different.

I just got back from being in Milwaukee for scans and I was able to see Dr. Kassam and Dr. Bobustuc.  When I first had this appt made, I was only seeing Dr Bob but I got a call a few weeks ago that Doc Kassam wanted in on it so he fit me into his schedule too. Dr. Kassam is usually in the OR on Thursdays but made it work to see me.  When we got up to his office, both doctors ended up in emergency surgeries! So we had to wait a while but eventually Dr Kassam came up to see us. We went over my head scans and I am happy to report that there was no change with them! He said he was worried about what he would see and was so relieved with the results! 
After we were finished with him, the nurses gave us some certificates to get food from the cafĂ© and said Dr. Bob’s Nurse will call us when he is back in the office. We barely got down the hall and we got a call that he was ready to see us. Once in with him, he said there was a millimeter of growth on my lungs but that that is very little. He thinks that the pills are helping but we just haven’t had a chance to be on them long enough yet to really see what they can do. 

He changed up my doses and instead of taking them for a week straight, I am going to be taking them every other day for that week. And then I still get the next week off. He also gave me a few tips on things that support bone marrow growth such as beans, honey and red wine! This is to hopefully keep all of my cell counts up so I can continue on these pills consistently. He reminded me that I am the very first person to be on this mixture of pills so trial and error is what we will do until we find a dose suitable for me. 

Celebrated another birthday!

I was happy with the results of this appointment. Of course I wish there was zero change in the lungs but I also know I could have heard a lot worse than I did. My next appointment is not for three months and he even offered to switch it up where the next one is only a lung scan and then three months later would be a head scan since I have gone so long without change. But, I was too nervous to do that yet. So in three months we will do a scan of both the head and lungs and if that one comes back good then we can start spacing them out farther. Three months will be the longest I’ve gone in a year without a scan so I thought that was a good starting point! 


I am relieved that everything came back the way it did and that I can have a good, normal summer! Last summer I spent  recovering from two brain surgeries and went to Marquette for seven weeks of radiation.  Besides being on the chemo pills, this summer will be much better! I am happy! 
Time for summer at the lake!