Yesterday was a long and tiring day. We got the kids up very early yesterday to take my kiddoes over to the house of one of the two nicest ladies ever. My two homeschool mom rockstars agreed to watch my non-morning children at 6:30 in the morning so we could get the whole family team at my 7am appt. My mom ran my oldest to school, and we met at the office. I had my PET scan last Friday and told the tech that I had an early Monday morning appt. She told me she would put a stat rush on it so it would be ready. Unfortunately, it was not ready, ,but the team was all there so we met with the doctor. He spoke in somewhat vague terms as he did not have the vital information of the PET scan. The PET scan shows where in my body I might have tumors or cancer hot spots. I had to drink barium mixture eat a special diet and then have some radioactive tracer put into my veins as they scanned so the machine would show where the cancer might be. He was hopeful that all of my tumors were in my bones as it gives a better, longer prognosis. He felt this was a likely scenario as I had no abnormal bloodwork or other symptoms that would indicate I had tumors in my lungs or the liver or anywhere else. Of course, then again, I had a pancaked spine with the only symptom being a muscle spasm so I know I am not the average patient. I took his word for it and remained hopeful though.
My family team is composed of my brother, the PHD candidate, filled with more research questions and knowledge than most people know what to do with. My dad the quiet listener. My mom, the worrier, with her own vast set of research skills and knowledge. My husband, the rock and stabillzer of the group, to bring us all back from the four corners. I tend to stick to the straight up. He told me the pathology of the tumor showed that it was in fact likely related to the original tumor from 2012 as it shared the same markers of being estrogen receptor positive, which means the tumor is being driven by estrogen. Not sure where It’s coming from but there you have it. He said this was good because we could target the cells with an antiestrogen receptor degrading medicine called faslodex. He felt this medication mixed with another one called Ibrance would be the best course of action as long as the PET scan showed no other tumors. He also told me he wanted to put me on a medication called denosumab which would help strengthen the bones and prevent new tumor growth. The faslodex and the denosumab are both injections. I am currently scheduled to start the denosmab on the second of April I believe.
My oncologist told me that I will need radiation to finish off the tumor that remained in my neck. We were able to negotiate a family trip to visit Nathan’s grandmother in Colorado before the radiation will start on March 30. I will have a day where they set up the radiation machine and get me lined up for treatment on the 30th and then I will start radiation the following week. It looks like I will have 10 sessions of radiation and each one will likely take under 10 min. They do not anticipate the skin reaction that I experienced last time since there are much fewer sessions. The oncologist also had done some bloodwork to see if there were cancer tumor markers that could be monitored. All of my tumor marker bloodwork came up as normal, and since all is not normal, we will not be able to use those markers to monitor the tumors in my body. The main way he will be monitoring me is with PET scans and CTS about every 2-3 months. This is how he will watch if the treatments are working and when they stop working. That is the reality of this new situation. It is likely that the bone tumors will respond well to radiation and my oncologists’ treatment plan. But at some point the treatment will stop working, and we will move onto something else. This could be years or not. We will just have to wait and see and cross those bridges when we come to them. I get a general feeling of hope that things will go well though.
My doctor also put me back on the other pills that I was taking like allegra, vitamin D and calcium now that my swallowing post-surgery is better. He also made sure to tell me to continue to eat well, a low fat, high fiber diet with enough protein to keep me strong. He also told me that as soon as the surgeon clears me, I can exercise everyday! I have been able to make it down, and more importantly, back up the hill by house so I see hiking in my future! Looking forward to that! We left the meeting still in anticipation for the main information that the meeting was supposed to be about which was frustrating and draining but we all left hopeful. The oncologist made sure that he would call me later in the day with the results of the PET scan .
I then had an appointment with my surgeon afterwards. We killed time at breakfast before the appointment hoping that the oncologist would have time to call before we all had to go separate ways, but alas he did not My mom had to pick up the kids and my dad and brother went off to sleep and work respectively. Eventually we learned that the PET scan showed that the disease was all in the bones, and that was a good thing!!! My oncologist texted this info along with telling me that he would look into clinical trials in NM and see if I qualified for anything and that he would talk to me after 5pm. So a plan would be made by the end of the day, and it looked like the plan would be what he laid out for me in the morning, as long as there was no clinical study I could get in on.
The surgery appointment was much easier as it was just a quick check. I am cleared to do more around the house and gradually increase my chore load. I was also cleared to take my neck brace off for short times in bed or when I am sitting fairly still in my chair. That was kind of exciting, but at the same time he tells me that I have almost nothing holding up my neck, so I need to be careful and not hike or run or trip or fall. He said I could do walks on the pavement, but no trails. Eventually I will be able to run but that is in the summer maybe. I will not have my brace off until maybe April 30th which is my next check up. I also cannot drive until then to help keep my neck stable and strong. So another month of being Miss Daisy. I suppose that is not too bad given how pancaked my spine was. I also still have some numbness in my tongue which he said is from a removal of an enlarged salivary gland that he found in my neck during surgery. He feels that the parotid nerve was damaged and that it will take months for other nerves to take back the sensation zones that were lost. I can chew and eat; it just feels numb. I hope it does not take that long for feeling to come back. Another wait and see game. Each day I am a little better so I am hopeful it will not take that long. I also had an xray that day so the surgeon can see how I am doing. He has not called since then, so I assume all is well.
So I waited until almost 8pm to hear back from my doctor. That’s dedication for him to come in at 7am and then call the same patient back 12 hours later. He informed me that, yes, the PET scan was good showing only tumors in the spine and pelvis. He also informed me that he talked to a breast specialist at the university who agreed with his plan of action. The two of them talked about clinical trials at UNM and decided that there were none for which I would be qualified. They also discussed the possibility of traveling to MD Anderson in Houston. The UNM breast specialist felt that there was not likely anything that I would qualify for there right now. My oncologist said he would try to verify the UNM information by Wednesday or Thursday of this week so I would not have to delay treatment and make a week long trip out to Houston to find out that I do not qualify. I will be giving him a call Thursday to see if we are starting things this week or if we are waiting for a consult with them.
I also had a lovely chat with an old college buddy’s wife as a phone consult. She concurred with the treatment plan baring anything better from MD Anderson. She gave me tons of info and spent a good deal of time talking to me. She emphasized keeping tabs on clinical trials for future possibilities and gave me great resources to look for those. She recommended that even if I can’t start a clinical trial at MD Anderson now, that I still need to get over there to get my finger on the pipeline of what is up and coming and might need in the future. She even sent a follow-up email with all the information at my fingertips so I can get moving.
So much info! Things are complex, but look good. In other words, tshings are about as good as we can get right now! I’ll take it! I see hiking and running and good eating and family fun in my future! Earlier this week I was feeling like my blog name was a bit of a misnomer….I am not so sure I feel that way now! I have a crack team of wonderful people assembled and things are looking up! I can walk and be sore and eat good food and love my family!