News From Mayo Clinic

Yesterday I met virtually with my sarcoma specialist at the Mayo Clinic in Rochester, MN. What a strange experience! A medical assistant answers you online and talks to you about your visit…asking (of course) about insurance….then says stand by in the virtual waiting room. You will hear a doorbell and that will alert you that the doctor is connecting with you. I guess that is like the doctor knocking on the door of the examination room so you are not caught picking your nose….talking on your phone, etc. Then he is there staring at you! It worked out well because he could share his screen and go over my CT scans from March, June, and September. He talked to me more in-depth about my blood clot in my lung and my treatment. I was thinking that I would only be on Eliquis for about 3 months….now I know it will be much more long term than that. When I asked what long term meant….he said, “LONG TERM!” So there we are. We also talked about hormone therapy. We are going to hold off on that and keep that tool in my tool box for later….maybe when and if I get to be on a chemo “rest”. The plan is to stay on Doxil for a year. That is 5 more rounds. Then we may give myself and my bone marrow a chemo rest and try the hormone therapy. He mentioned that a drug is considered successful in clinical trials until you have 20% growth. Luckily I have not had any growth at all or new mets since starting chemo in December. So we are considering everything a success. My cancer itself is not impacting my life. The chemo is, however. But it is all stuff I can deal with. Doxil builds up in your body so I will at some point start having issues again. I need to have an echocardiogram soon to look at my heart function. Doxil is it’s raw form is incredibly heart toxic. So we need to be watching out for heart damage. I will mention that to my local oncologist (again) when I see him next (after the wedding). So more of the same is the name of the game right now. My sarcoma doctor quizzed me extensively on my pathology reports, CT scans, and my knowledge of LMS chemotherapy agents that are considered standard lines of care. I felt like I was back in nursing school! I got off the phone with him and I was sweating! I know he knows I have a degree in nursing and that I do research on my disease and it’s treatment. It was nice to know I could “hang” with his questioning and not sound like a novice. I also think it reassured him that I could talk to my local oncologist at a higher functioning level than most patients. I have to be my own advocate as my doctor (who is of retiring age) has probably not treated any other LMS patients in his career. So a plan is in place and I am ready to carry it out.

The icky week is over and I am feeling better although I can feel a lot of residual chemo reaction in my hands and feet. I will be getting a flu shot after the wedding…I need to ask my local oncologist his opinion on when during my 28 day chemo cycle I should get it. I asked my Mayo doctor and he said the day of chemo. The pharmacist said half way between my infusions. (so the opposite) Wondering what the tie-breaker would say.

We are officially gearing up for the wedding. Rich went down to KC for two days this week and took down all the wedding gifts so we would have more room to head down there next week. Rich’s parents arrived yesterday and my parents arrive next Wednesday in time for us all to caravan down to KC for the wedding! On to the wedding!!