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. 

Can MGUS go away: A theory.

I have been thinking about this lately. It definitely seems that there are case studies on the books of MGUS going away. But why? Mostly it seems that the MGUS can go away once an infection subsides. For instance, Hepatitis C or an auto immune disorder. 

But why? 

My best guess would be that clonal plasma cells are called up along with normal cells to fight the problem... only to have the body terminate them once the threat is resolved. Ultimately the problem might not be resolved as eventually MGUS might come back.  We simply don't know. 

So I was thinking about it and it seems to me that one way to avoid the progression of MGUS is to avoid getting any sort of infection and to end your inflammation.

In theory, MGUS is a break down in the Hemotropic Stem Cells. Inflammation causes the Hemotropic Stem Cells to break at a gene that controls differentiation of plasma cells.  Thus, in theory, if your body has need to call up plasma cells to fight an infection... you could be left with Clonal Proliferation which may -- or may not -- die once the infection is gone. 

Further, it seems like if you can end the inflammation that is causing the damage to the Hemotropic Stem Cells... and also NOT GET AN INFECTION... your body may naturally dispose of the MGUS as any new cells will be made from healthy Hemotropic Stem Cells and the Clones cannot necessarily live forever. 

Fasting and Iron

So I found a new You Tube Channel that I thought was quite good.

But the first thing I noticed was that he had the same problem I did. After fasting, his Ferritin blew up - mine was a paltry 270. But I was only doing Alternate Day Fasting. His was in the 1000 range. But that got me thinking... both of us...

1. Fasted. Though his fasting was much more intense than mine - he went 30 days at one point.
2. Didn't really eat that much red meat so that it would seem unlikely to be getting excess iron in the diet.
3. Did not see our Iron on our blood tests go very high... so why would iron be relatively low.. while our Ferritin blew up?

Looking at several other websites I found a commonality. Many people noticed a jump in Ferritin -- only -- with fasting. 

Then I kind of found it.. I think. It seems to be related to your iron stores... your body keeps iron for later in the liver.  The liver: conductor of systemic iron balance But for some reason, believed to related to the hormone Ghrelin ... (your hunger hormone) when you fast your body lets go of the iron. Fasting Increases Iron Export in the Liver. There is also some suggestion based on a study with pigs that it is the weight loss that increases iron.  Effect of Prolonged Fasting on Iron Stores and Blood Constituents in Young Swine  So it seems that when you are losing a lot of weight and or fasting for a long time (not time restricted eating) your body gets the message to release the iron stores in you liver and your body's Ferritin must jump into action to collect up all that extra iron before you do damage to your organs.  So in theory this is how the iron in the blood stays low... but Ferritin goes up. 

I also found this study Weight loss may have contributed to hyperferritinaemia in up to 11%. My guess on this is that the fast you lose weight the more you body releases iron. 

Then this "Table 1: Causes of raised serum ferritin without iron overload [19]." Ferritin without Iron And one of the Causes of Raised Ferritin without Iron Overload is.... "Check for weight loss, anorexia."

This is, imho, just another example of medical incompetence.  When I was doing a medically monitored diet previously, they never ever ever tested Ferritin.  Even my you tube buddy had his doctor write it off to a cast iron cooking pan. Of course that might have been part of it -- but it wasn't the problem. It took me about 20 minutes on Google to find the issue. Grr.

Blood Thinning and MGUS - again.

One of the frustrating parts about MGUS is that there is so little information, both about MGUS proper and about things you can do around MGUS.  But something that sticks out to me as something which must be dangerous ... is the thickening of the blood. No, I know that Dr. Kyle told me that doesn't happen except in advanced cases of MGUS, but, I don't believe we are talking about the same thing. I believe he is talking about thickening of the blood that is dangerous and requires medical intervention and I am talking about ANY thickening of the blood.  

It is well-known that thicker blood is more associated with cancer.  All blood thinning medication and blood thinning supplements are associated with less cancer.  This includes blood thinners like Warfarin and Supplements like Tumeric. Diabetics have thicker blood and in fact, the American Diabetes Association recommends 1 baby aspirin per day.  

And someone just gave me a big tip as to how that can be. 

Anti angiogenesis plays a role in starving cancers. Thin blood can cause anti angiogenesis. Pruning off blood supply to cancers. Thick blood leads to angio genesis, where a cancer signals the body to grow blood to feed the cancer cells.

I have asked for a citation to this but my  preliminary looking at it... seems accurate. This came up in the context of discussing fasting. And fasting is known to thin the blood. Though we are not sure why... it could be due to autopahagy or it could be due to messages to produce less red blood cells.  People on blood thinners are warned to discuss fasting with their doctors -- because the dose of blood thinner has to go down.  I know when I do donate blood I cannot fast for the two weeks surrounding it. 

So for me.. it is crucial that anyone who has MGUS keep their blood thin from the moment they are diagnosed. It is like a snowball rolling down hill... Mgus slightly thickens your blood, thicker blood encourages cells to go cancerous..... At the same time MGUS patients are specifically stopped from doing the one thing that is most likely to (and safe) keep our blood thin.. donate blood.  What a perfect recipe for disaster. 

I have published a health book

Yes, I have put all my various thoughts on health down in a book. It does not discuss MGUS because I want to do that as a separate book (which I have just started now) but it discusses all that I have learned in 40 years and my best information. 

Guerrilla Tactics for the Health of your Dreams

I am overweight!

It has been a long time in the making but I am officially now just overweight.. not obese!

Ironically trying to lose weight was probably the reason I found my MGUS. In November of 2019 I was on "emergency" at work. This is my busy season and it really exhausted me more than ever before. I weighted in at 217... one of my highest weights.. and I was coming home at night in miserable condition. In pain, exhausted. I was growing out of my clothing. 

So I decided it was time to lose weight and I started with Intermittent fasting. I wasn't on it long when I got sick. That derailed me. But then in January and February of 2020 I had pain in my back. It seemed linked to IF. And it was through the pain I found my MGUS. Then Covid hit and things were on hold. 

Finally in November of 2020 I realized we weren't going back to work and this was my opportunity to lose weight. And so, I started on Keto. And I went down about 10 lbs in about a months time. But then I started Alternate day fasting. Things really got rolling. 

Lately however, things have been difficult. I can't tell if I am being impatient or hurting my own progress by taking breaks. I live in fear or adaptive thermogenesis because that has happened before. But I have to stop to say that I am now officially simply overweight. This is a major milestone.  

I am now questioning adaptive thermogenesis because I have been pivoting and taking breaks and it does seem far more difficult now to lose weight. So is it adaptive thermogenesis? Or does my TDEE just reduce when I get to a lower weight? 

At the same time I am not at all sure what I have been eating because one day I will fast, one day I will over do the calories... etc. Some days I will eat carbs.

So I think for the month of June I am just going to do Calorie Restriction / Keto so I can get an idea of how much weight I lose. It appears I have been losing about 3 lbs per month... if on steady Keto for a month I lose 3 lbs at a 1000 calorie per day level.. I will know that my TDEE is about 1400.