Well we are back on the roller coaster ride called Cancerland. It definitely isn’t an enjoyable ride. It has many dips that feel as if your stomach is in you throat. It also has lots of upside down loops. Be careful because the seat belts have malfunctioned on this ride.
About three weeks ago I had a PET scan. When we got the results they were very confusing. I still have no involvement in any of my organs which is good news. My spine however lit up with the reading of a 6.5 on the SUV scale. Not really sure what that meant but it didn’t sound good at all. Then a week after the PET scan my doctor wanted to do a bone scan. She said the bone scan would be able to get a better look at the bone activity. After we read the results we were afraid it wasn’t good news. The report said that I had scattered lesions throughout my spine, base of skull, ribs, and shoulders. Some of these were new locations. My doctor’s office actually post all scan results online so I can have access to my chart at anytime. We read the results online on Friday night and then had to wait until Monday to talk to the doctor (I had a monthly appointment scheduled then.) I will have to say it was a long weekend! We really thought the worst. I was prepared to hear horrible news like having to go back on chemo. I will be honest, the thought of chemo made me want to give up. I hate when everyone says how brave I am because I surely don’t feel brave. I guess I am only human because the thought of my kids having to watch me go through more pain and suffering was too much.
Monday we met with the doctor, just waiting to hear the bad news. The doctor walked into the room and said “Well the scans look good.” I looked over and John and laughed. My first thought was that she just walked into the wrong room. After explaining that the SUV number was really not that bad it started to make me feel a little better. A normal SUV number would be 3-4. At that number your body would show no signs of cancer. John and I were assuming that it was on a scale of 1-10. The doctor said she has seen an SUV of 47. When she put it into perspective mine really doesn’t seem that high. There is still concern because it is higher than normal. She did point out that both results stated that the uptake could be in response to therapy. This means that what they are finding is cancer cells that are being attacked by the hormone or monthly shot I get. That is more good news. I also do not have any pain in the areas that light up so if it is cancer, it is a very slow growing cancer.
So what is the plan I can hear you ask. Well I can no longer stick to what I have been doing because there is growth. It just isn’t significant enough to warrant going back on chemo. We decided to add Afinitor to my hormone treatment. Afinitor will work by blocking a protein, which can help stop cancer cells from growing. It may also stop tumors from developing new blood vessels, which would help limit their growth. Sounds wonderful doesn’t it? The fact that it is a pill is great too. (Yes I know I can’t swallow a pill yet!) The instructions do say that I can dissolve the pill in water and drink really fast. Yuck! Of course it does come with its own list of side effects. Mouth sores, fatigue, rashes, and high cholesterol are some of the most common. Still much better than going through chemo!
Right now I am waiting to hear back from Wal-mart if they can fill the prescription. The doctor did say it might have to be filled through a specialty pharmacy. When Wal-mart called yesterday they said they were researching on how to proceed with the prescription and that I might have to pay a co-pay of $200. Not sure if that is a month but that is outrageous! After we got home I did some research and found a prescription card from the makers of Afinitor that would help with that co-pay. The card is good for a year so that would be so helpful if I could use it. Just another thing a cancer patient has to deal with.
Please pray that the Afinitor will help keep my cancer stable and that it doesn’t come with unbearable side effects.