Upon arriving at Dana Farber I decided to park in the Valet Parking. I thought it might be expensive but it wasn't! ($10.00) I guess since they deal with people with cancer all the time, everyone was super nice and helpful. Even the Valet Parking people.
Traffic had been so good that I arrived an hour early. It was simple to find (just literally take the elevator up to the 6th floor). I checked in and they told me to have a seat in the "amazing" waiting room. Which was big enough for social distancing and had a very nice view.
Within only a few minutes they called me back to get my vitals. After that, I was free to use the bathrooms and generally just sit around and wait. I was called back for the appointment right on time at 9:30.
Dr. Sarosiek came in immediately and introduced herself. She was polite and humble. She really didn't say much and sort of let me talk. Everything in her demeanor was someone who only wanted to help.
First, I talked about inflammation and the study that seemed to point to that as a cause... and how I am unable to get the inflammation down lately. She kind of took it all in. She didn't think I should obsess over that. Basically as she said, we don't know why the body can get inflamed or even if it might be a good thing. She noted I could have a virus that I am not aware of she also noted that one study does not a conclusion make because other studies can come out later. She did note however that MGUS patients tend to have higher inflammation than normal patients.
Second, I asked about Blood Donation and she was great. I told her before I asked the question of the research I had done with Dr. Kyle and yes her eyebrows were raised.... that I was talking to him... but she agreed that, for me, it was not going to be an issue. The way she described it was that blood donation affects the red blood cells so it they are "separate systems" from WBCs. She did note that some people with MGUS can have anemia and, in that case, you should NOT donate... but that my numbers were kind of perfect (RBCs and Hemo-crit). So she told me it would be ok.
Third, I did ask, in a roundabout way, why Blood Donation is not promoted with MGUS patients. She said that the Light Chains, M-Protien, and Immunoglobins are just too small in MGUS patients for it to make a difference. You just wouldn't be getting very much out of the body in 1 Pt of blood. I probably should have known that.
I asked her about Metformin for preventing progression. She didn't really opine on it but I noted there was a clinical trial at Dana Farber on it. She looked it up on the computer and encouraged me to give it a try. We will see.
In discussing my Scoliosis, I asked her if Waldenstrom macroglobulinemia caused bone issues like MM. She told me NO that is a rare complication for WM. That 2 to 3% of people with WM end up with that. This made me happy. She did note that it is possible I would go to MM but that only about 5% of people with IGM go to MM. So I will take that risk. She did note that everyone with MGUS has risks for weaker bones.
She did warn me about getting too attached to any one blood test. She said that the M spike is an interpretation... so sometimes movement is due to that. I have heard that before. She said things are usually very slow moving so they like to see a clear progression before doing anything.
She decided to cancel the bone marrow biopsy. She said my overall numbers were just too low. She suspected that if they did it, I might have a very low amount. She did say some people like to do it so they can be sure if they would progress to WM or MM (as they can look for the genetic mutation that is WM) but I am happy to wait.
Disappointingly at the end she did try to send me back to my hematologist but I had to come out and say I didn't want to go. She then was fine. She made a new appointment with me for the last week in September.
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