Dana Farber: Part Three

So after the appointment was over I headed down to the lab to have my blood drawn. That place was a zoo. There were probably about 55 people actively having blood drawn.  The woman taking my blood was a little bit rude. Giving me a lecture on not drinking enough and fasting the day before. But I did learn that you should drink on the day before giving blood. Drinking on the day of blood does nothing.  I did not know that.

I left, got my car from the Valet Parking, and was home by 11:15 am. At which time I was shocked to find 1/2 my lab results on my portal.

They were all amazing. 

My CBC was 100% normal. And my Red Blood Cells were lower than the last time I had them, IMHO owing to my blood donation in April.

My CMP was 100% normal (which is good to know given my fasting) but my BUN and Creatine were less low than I would like them to be. Time to drink more water. 

My LDH was once again at the very bottom. 

I had a new test that I never had done before BETA 2 MICROGLOBULIN -- which was normal. I am not sure how to evaluate that one.

Finally, my light chains came back and they were higher than I would like.

But I have to say I do think it is caused by the blood donation.

The last time I donated blood was October 12th of 2020. I had the light chains tested December 7th, 2020. The result:

FREE KAPPA LIGHT CHAIN 17.5 mg/L

FREE LAMBDA LIGHT CHAIN 9.2 mg/L

FREE KAPPA LAMBDA LIGHT CHAINS RATIO 1.90

I had another blood test in February where it went down to  Ratio of 1.42. (normal)

Around April 14th of 2021 I donated blood. And here about 60 days later.

FREE KAPPA LT CHAIN 17.6 mg/L

FREE LAMBDA LT CHAIN 9.6 mg/L

FREE KAPPA LAMBDA RAT 1.83

Almost exactly the same. It is my theory that the light chains remain constant it is the blood level around them that changes. You will see the measurement is 17.6 mg per Liter of blood. To me, this says that I have less liters of blood. There are about 5 liters of blood in the body. But it absolutely varies. 

Lets say that now, I have 4.8 liters of blood. The amount of light chains is going to appear to be bigger than if I had more blood. 

I can test this theory by not donating blood before my next measurement and making sure to drink plenty of water before going for my appointment. 

Dana Farber Part Two

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. 

Finally a great appointment with a doctor at Dana Farber: Part One.

I have only been seeing doctors for MGUS since February of 2020. But most of them were less than good imho. I was first referred to a Hematologist/ Oncologist at my local doctors practice. Upon entering the room she 1. Told me MGUS was nothing and 2. spoke the entire visit almost not letting me have a word in edgewise. 

Ok fine, no matter I had an appointment at Dana Farber with a very important doctor... but, and perhaps this was due to the Pandemic, we met via zoom and he spoke non stop for the entire visit until such time as he said bye and ended the chat.

Ok fine, he referred me back to my hematologist. With specific instructions that I should be seen every three months for the first few years.

When I returned to my local Hematologist / Oncologist, she told me she was leaving the practice. So I had to pick another one. That one wasn't available until January 2021. We agreed I would have labs placed but for some odd reason (that I don't buy) she said that she couldn't direct when the labs would be done. If I went for any blood tests they would be done. So I went in November of 2020. 

And then I had the appointment with her in January 2021. I have previously written about that.

Four doctors all imho pretty bad. 

Finally I demanded that I be seen at Dana Farber in the correct department.  I have IGM MGUS, so, I need to be followed with specialists in IGM. So I did my research and I made an appointment with Dr. Shayna Sarosiek, MD at the Bing Center for Waldenstrom's Macroglobulinemia. Why was I happy to get Dr. Sarosiek? She is young first of all... so she can presumably stay with me for my lifetime with this... secondly she doesn't seem overburdened or too big for her britches. I went yesterday.. and I am happy to report a good appointment.