Inflammation appears to be the cause of my MGUS

People ask a lot "what causes MGUS?" and I think that has a different answer for everyone. 

1. Family History: There is no doubt that if you have family history of blood cancers or MGUS, you are at a higher risk.
2. Auto Immune: There is absolutely a link with auto immune and MGUS. This would seem to be due to the constant antigen stimulation of the body. 
3. Environmental: clearly survivors of the 911 attacks and people exposed in the military etc are in danger.  Some people who are exposed at work, handymen / construction.
4. Obesity: There are many studies on the books that show that obesity is a risk factor. 

So when people say, I am thin and I have MGUS... well of course... you can have it for reasons other than being obese.

For me, there is only one thing that I can see as being the cause of my MGUS... that appears to be obesity / inflammation.  I have no history of blood cancers in my family (or MGUS), no auto immune, unlikely to be the environment as I am very careful... but I have been obese... and for the years leading up to my diagnosis... I was eating like a pig.  

In 2012 I did a liquid diet and got down to 155. But I was STARVING and I couldn't lose any more weight. I realized... I had done a biggest loser and had no choice but to restore my metabolism. This took a lot longer than I expected. I quickly got back up to 217... but my metabolism was low (I had it tested). So for 8 years I was shoving food in there daily to try to wake my metabolism up.. and also try to figure out how to lose the weight without falling into the trap.  The plan was to start dieting before I hit 50. And I did that.. at 49 I started fasting.  But within just a few weeks, I was diagnosed with MGUS. 

I didn't realize the effect this was having on my body and perhaps... this period of obesity coming during menopause.. (or peri) didn't help.

I don't have a ton of blood tests (yes doctors for some reason didn't care) but I have some results from when I was younger and thinner and those were not the results I had the first time I started testing my inflammation makers. 

It is my belief that inflammation is both cause and way to avoid progression. It is the driver of the disease.. so everyone can benefit from a reduction. 

Third Visit With Dana Farber

Well on December 17th I had a visit with Dana Farber. I have to say it was interesting. This was my first "true" visit after vaccination so I was interested to see the results.  They were... as follows:

1. CBC: Completely normal.  My WBC came back up to the normal range.  My RBC was down slightly but I do think that was due to blood donation in October. 
2. CMP: Completely normal. My liver enzymes were under twenty and my Alkaline Phosphate was down to 60.
3. Immunoglobulins: IGM: 272, IGA: 180, IGG: 830. My Igm and Igg were off, but are mostly still normal.  This one is hard to judge because I had tests just a month before and my IGM was 240. 
4. Light Chain: Kappa 15.5 mg/L(normal),  Lambda: 9.1 mg/L (normal) - Ratio: 1.70 (almost normal).
5. M-spike: 0.23 g/dl (gamma).

I remain confused. Since my diagnosis my M-spike has been coming back with two spikes. Both IGM-Kappa. Thus I thought I was bi-clonal and that I had a M-spike with both values... around .5 g/dl.  I always asked about it but didn't get an answer... just "I am not worried about it" from the doctor.  So this time I asked the doctor, why, sometimes did the second spike go away. I was shocked for her to tell me that I was NOT biclonal... and that I didn't have a second spike. 

On my very first Pathology Report from Dana Farber it did some back with a second M-spike but it said this...

The findings are consistent with monomeric and pentameric forms of IgM paraprotein, and do not necessarily indicate biclonality.

My doctor says that the second spike is just a mirror image of the first, "true" spike.  She says that monomeric IGM paraprotien looks like a "Y" - while pentameric looks like a "snowflake" - upside down Ys. So when the monomeric gets all squished together in the gel... it can appear to have a second spike but it is not real. From the start this second spike is always reported as "faint" so it does make sense that it could be a reflection.  I will continue to research this... because I am not 100% sure I do understand but since my second path result has now come back without it.. it seems I may have a much smaller spike than I thought. 

In addition, I am coming up on my two year anniversary of my MGUS discovery. And, knock on wood, I have not really progressed anything but slightly. So small I can't even tell if I have progressed. I think that is a good sign.  I thought I heard someplace that if you don't progress after 5 years you probably won't ever. I hope that is the case. The doctor and I decided to push the appointments back to every 6 months. 

Insulin, not sugar, causes cancer

https://www.youtube.com/watch?v=S395qX6G6HM

I stumbled on this lecture the other day. At first I had a hard time understanding what he was saying... because it is very science tech. But basically... he is talking about how insulin (not sugar) kicks off cancer.  He talks about lipid that is formed in order to use Insulin.  P13K.  And, then it comes out, P13K is flat out cancer causing.  At first, he talks about a mutation that is involved in most cancers (but not blood cancers unfortunately).  And he talks about how there is a drug to inhibit P13K. And that has shown promise. 

But in the end, the reality is, combining the P13K inhibitor AND a keto diet has been shown over and over again to just destroy the cancer.  But it takes both.

The key point.... they don't know why yet... but yes, this destroys blood cancer as well. 

The problem with the P13K inhibitor drug alone is that when we use it and still eat carbs, our sugar goes crazy. But if we do the P13K inhibitor AND a keto diet... you will be able to reduce insulin without the sugar.

Great comment:

Around 33:30 you can see the issue. Basically, the entire body becomes resistant to insulin except cancer tumors, which are exquisitely sensitive to it. It's almost as if the biology is saying, if you keep getting more insulin resistant, I'll make new cells that aren't resistant. But cancers are really rogue cells that opportunistically take advantage of a good food supply and forced-feeding environment (chronically high glucose and insulin).

Later someone asks a question about if low insulin can lead to no cancer and, of course, he can't answer that... but what he says is brilliant.... you can't keep your body from a mutation but, you can keep that mutation from taking off. And think about it... if you were able to arrest all of your mutations so that they didn't grow out of control (caused by excess insulin) you could avoid cancer as we know it. 

In fact, it occurs to me that the more sensitive you make your regular body tissues to insulin the less insulin your regular body will have hanging around. Thus, every single year that you exclude carbs and make your body more and more insulin sensitive, the less likely you will be to be able to have cancer. 

So, for example, age 48, you begin a keto diet and get your fasting insulin down from 8 to 6. But still, 6 is relatively high. You stay on this, and by age 50 your fasting insulin drops to 5. You stay on this and by age 52 your fasting insulin is down to 3.  Think how far it is from 8 to 3. Your entire body now is back to the sensitivity it might have had at 20 years old.  Now it is just that much further away from any possibility of insulin puffing up a mutated cell. 

The goal then is to make your body insulin sensitive to avoid any chance of cancer. 

Very Exciting News.. I hope...

 

Drug Combo a 'Milestone' in Treating Pre-Cancerous Smoldering Myeloma Researchers Finding Drug Combo a 'Milestone' in Treating Pre-Cancerous Smoldering MyelomaSylvester Researchers Finding Drug Combo a 'Milestone' in Treating Pre-Cancerous Smoldering Myeloma

https://physician-news.umiamihealth.org/sylvester-researchers-finding-drug-combo-a-milestone-in-treating-pre-cancerous-smoldering-myeloma/?fbclid=IwAR1SfIcJlv1lljmoEpGE8yZNPPcQfkBfH9xLfBWmptE0dktDiRq0MQRcIS4

In a study published in JAMA Oncology, researchers at the Sylvester Comprehensive Cancer Center in the University of Miami’s Miller School of Medicine, the National Cancer Institute and other research institutes showed that a three-drug combination (carfilzomib, lenalidomide and dexamethasone, followed by lenalidomide maintenance therapy) prevented smoldering myeloma patients from progressing to multiple myeloma. Approximately 70% of patients showed no minimal residual disease a median 5 1/2 years after treatment.

 

This seems like it would be an amazing advance.  If we can nip smoldering myeloma (and I would presume smoldering Wallys) in the bud before it ever gets to cancer.. this could massively increase survival times.  On this study alone, adding 5 and 1/2 years to any myeloma patients life is a massive gift. 

Second Appointment With Dana Farber

This one was not as good. It was a zoo. There were so many people there and things were so disorganized.

I went in as usual for vallet parking but once I entered the doors they put us in a system were we had to get covid checked all on the first floor. So there were tons of people in the elevators and tons of people getting covid checked. I managed to make my way up to the covid check on floor one only to have one of the most rude people ever -500 lb guy in a wheelchair - tell me to get out of the way. 

The nurse told me there was a clear station down on P2 so I went there. 

After that nightmare, I to get blood and again, it was a complete zoo. And frankly I had the same lady take my blood as last time and she couldn't find a vein... gave me a lecture about water. I told her I had taken water this time... but whatever, at least I got called within 5 minutes of check in. 

I went up to floor 6 and that was full too. Last time I went, there was no one around. 

I got my vitals taken and again, their blood pressure machines do not work.. coming back at 130/68. Too high. 

The good news is that my weight has stabilized  I only went up 4 lbs and I think that is fair given the fact that this time I wasn't fasting. 

It was at this point that some of my blood tests came in. Good news on my CBC.. everything came back normal. This is good because I just had the Johnson and Johnson vaccine and I was worried about platelets being too low. But they weren't they were at 185. Normal for me. All the other blood markers were ok as well but for the WBC. The doctor thinks that is due to vaccination. 

The horrible news... was that on my CMP.. my liver enzymes came back crazy elevated... more than I had ever seen in my entire life. And my liver enzymes are usually in good shape.

AST: 131 U/L (normal is less than <33)

ALT: 182 U/L (normal is less than <34)

My guess is that this is due to my week of "sugar" -- I was severely bad this week, having sugar and carbs almost every day due to preparing to start dieting again... but I never ever ever ever thought it could be that bad on my liver. Wow.  I have gotten another test from my primary care and will be resetting in a week to make sure it is the sugar and not something worse.. I will be keto the entire week. I asked the doctor if it could be the vaccine but she didn't think so. Fortunately the liver is one of the best regenerating organs in the body. 

The appointment with the doctor kind of sucked. There wasn't a lot to talk about and most of the tests hadn't come back. I asked about the light chains but she doesn't seem to think they are anything to worry about as long as they stay normal... it seems like they are going higher and I am starting to think that I am going to have to get serious about turmeric and or IP6. But at the moment the results are not exactly accurate. 

Finally my other annoyance is this... the last time I had labs... they were all back immediately. This time... it is taking forever. To me, that says there is a long back log. 

New Primary Care

I really am starting to hate doctors. Because my last primary care left the practice I had to get a new one. I chose one that got great grades on "Vitals" and I hoped for the best.  Once again I was horribly disappointed. 

She was late...and stupid. 

I arrived at 1:30 pm for my 2 pm appointment. I had been told to arrive at 1:45. What time did she appear? 2:15.  This after a nearly 3 month wait just to get a meet and greet appointment.  I had to put my work off for her...so I expected her to be on time. 

But I am getting ahead of myself. 

First we have the assistant take me back to get my vitals. The good news... they are not using a machine to take my blood pressure -- GOOD NEWS. The bad news.. she took it grossly wrong. She put me down in a low chair and pulled my arm up high... so it was very much higher than my heart. BP: 100/68. Is this why my BP on my record is all over the place? This also concerned me because I had just been vaccinated and it seemed, if correct, a low BP could be a sign of clotting. But when I got home I took it on my machine and it was 120/80.. a typical result. 

The assistant did not take my body temperature - even though I had told her I had been running a fever the day before. Not to mention it is covid season.The assistant did take my weight (of course) which came back at 178. IMHO much higher than I thought it would be and my height (which fyi I fudged a bit) at 5'4. My scale at home as me at 172, but I was full dressed and had eaten. 

The doctor flew in without as much as a how do you do.. it was like she was checking off list. She immediately went for the Cholesterol. I told her nicely I didn't want that tested but I fear she took it as I didn't want that tested right now.  She went on about my Scoliosis, but, that has been stable my entire life... she then wanted to do a pap but again, she is out of her medical depth as I am not due for that for 3 years and I just had one.  The rest of the appointment was bullshit that I am tired of dealing with... flu shot? Shingles shot? Mammogram? Blah blah blah. 

I could not believe it when, after losing 37 lbs this year she started giving me the lecture on losing weight. Honestly is it ever enough for them? I am guessing that my mask obscured my face frown but I stopped her and told her i had lost the weight. I had expected some congratulations but she obviously hadn't read anything on the chart before walking in.  I told her I had stopped because of the results I kept getting on my blood tests.... no clue.. and of course she offered no suggestions. 

What did she NOT concern herself with at all... at all.. my MGUS. When I mentioned it to her ... she imho got defensive, once again stating the party line that MGUS was "just an extra protein" and it "may not progress at all" and "am I seeing a blood doctor about that." Ugh, the most important thing on my chart and she couldn't give a hoot. 

The rest of the appointment imho was a bust. I have very little confidence in her at the moment and will continue to look around for better doctors. 

I truly think that I have to found a lobbying group for MGUS. The thing is.. I don't know how to. Until doctors are getting MGUS alerts daily they won't pay attention. I also want to test the general population. So we can really know how many people have MGUS and how many of them have symptoms. 

Update on Health Tests

A good 6 weeks after stopping Alternate Day Fasting.... things have normalized.

• HS-CRP is 1.7 mg/L
• Cholesterol Total is 311
• LDL is 220 
• CRP is a shocking (shocking good) 1.8 (was previously in the 4 and 6 range).
• HDL is 59. 
• Sed Rate went from 28 to 14. 

First, I want everyone to note that my doctor failed to 1. Apologize for being dead wrong and not listening to me and 2. In fact, made zero comment. Perhaps that is because she has already been fired.  But in 6 weeks I dropped my cholesterol from 450 to 311.  I bet she has never seen such a thing.  If she and her cardiologist buddies had their way I would have been on pills for the rest of my life.  I found the root cause instead. 

HS-CRP is close to my normal level. All during my 30s and 40s when I had it tested I was around 1.5 mg/l.  It has dropped from the 4s to normal. 

Cholesterol remains higher than I would like, normally I am around 250 to 270. But I also have found out that cholesterol increases after menopause. I have to ask why? IF your body increases something --why would it be bad for you? IMHO it isn't. It is something that is good for you.  Cholesterol is protective. 

I will admit though I had NO idea that ADF could cause these issues. I fear I did damage to myself and possibly damage to my MGUS. I had no idea that cortisol could go up so much with fasting. 

My guess is that it has to be fasting. In 2012 I did a liquid diet. Though, I was only eating about 700 cals per day... I didn't have these kind of horrible results. My HS-crp did go up but.. my cholesterol wasn't that bad.  I saw some information about how low insulin can cause cortisol release. So I think I need to eat 1x per day to avoid a large cortisol release. 

My plan:

1. Keto Meal plan.
2. Time restricted Eating (1100 cals per day).
3. Eat in the morning to head off cortisol release.
4. One 40 hour fast - 1 time per week.
5. Exercise - 30 minutes per day 3 or 4 times per week.
6. Considering trying to give up coffee.

Based on historical weight loss this should have me losing 1 lb per week. If I do that until January I will be down 16 lbs. That will have me about10 lbs above normal weight. That is the goal.