I am finally done with Keto.

Since the start of the pandemic I have been heavily invested in Keto and fasting. What captured my interest was the book, "Anyway you can" which was about someone who had Leukemia going on a Keto diet and dramatically improving her numbers. And, to be frank, I could see amazing improvements on my numbers in the short term. My liver and kidney health is good on Keto. For the three years I have been doing Keto and fasting my M-spike has not progressed and the other factors have remained stable.  I also lost 40 lbs... but gained it back. 

But there was a massive problem.

Fasting (or more properly) being in Ketosis... has sent my HS-CRP and some other inflammatory factors through the roof.  Cholesterol too. But I could almost immediately lower it by eating carbs or being in mild ketosis.  Finally this week I had it... I tested again after two short weeks of being in Ketosis and my HS-CRP was through the roof and my cholesterol was massively elevated. 

I suspect that these two things will, some day, turn out to be harmless. However, I can no longer keep potentially damaging myself this way. 

This does not mean that I am going back to HFCS or going to eat a ton of carbs. After all my Metabolic Health is strong. I have a low A1c - 5.3% and I have a low C-Peptide.. at 1.2.  It does not mean that I will not be careful with sugar. It doesn't mean I will not lose weight. But, I will go back to the calorie counting model and have more *good* carbs. My diet I will be aiming for low carb. Not Keto. 

Of course, decided to test my IGM.

Because my doctor decided that I only needed to be seen every year I decided to test my IGM as a short cut way of making sure I was not progressing during this time. 

To my shock and horror... my IGM came back at 316.

That is the highest I have ever seen. In fact, for over three years my IGM has only, and I mean ONLY, been anyplace from 240 to 270. NEVER above 270. 

At the same time, my only other high blood test was HS-CRP. So I do know I have inflammation hanging around, but I think it is "acute" inflammation because my Ferritin is not high.  So it is possible the IGM is higher because of inflammation and or infection. 

But that was it... I decided I need to be seen 2x per year and I need to know what my m-spike is right now. So I called up Dana Farber and got an appointment for next week.

I suspect I know what is causing the inflammation and I will cut that out and get my tests next week. 

I hope that it is inflammation / infection but I am scared it isn't. IGM has been creeping up more and more every time I go and there were more 270s than 240s. 

Another interesting study - Fatty Bone Marrow causes CP.

In 2021 a study came out that honed in on how blood cancers basically begin, suggesting that inflammation messes up the creation of blood cells and causes clonal hematopoiesis. Good to know, and I then concentrated on reducing inflammation and weight loss. 

For me though that confused me.  I am overweight but have had very low inflammation markers and do now.  Well,  just got another piece of the puzzle. 

Inflammatory signals from fatty bone marrow support DNMT3A driven clonal hematopoiesis

https://www.nature.com/articles/s41467-023-36906-1?fbclid=IwAR3ichvOW0E-AzcHIWRLrNSLRzzBk3NU0V5SPo_js4QCBcMz_H_i61C3V0s

This study basically suggests that we have "fat" in our bone marrow. Who knew that? And that there is such a thing as "fatty" bone marrow - like fatty liver.  And it is THIS fat which puts out the inflammatory signals corrupting the bone marrow.   So you see your overall body could be relatively low in inflammation - and not really make a difference to your bone marrow. 

The accumulation of FBM with age is ubiquitous, however, large variability exists in its extent58. Epidemiological studies suggest that several factors can explain this high variability including: the age-related decline in renal function, increased body mass index (BMI), andropenia and menopause. Interestingly, FBM continues to increase steadily in males, while in females it increases dramatically following menopause. This phenomenon might be related to the rapid estrogen deficiency during menopause as oppose to the gradual decrease of testosterone in males. Previous studies demonstrated enrichment of DNMT3A mutations among females. The sharp increase in FBM during menopause could suggest that it is the dynamics of FBM accumulation that shape CH rather than the actual FBM mass. Interestingly, a recent report suggested that DNMT3A mutations were significantly associated with premature menopause.

So we see that the increase in fatty bone marrow is essentially a side effect of menopause and reduction in estrogen. And my MGUS started after menopause. However, it can also be contributed to by a decline in renal function (guessing this relates to sugar), increased body mass index (likely insulin resistance). 

The study concludes with 

Based on the results presented here, it is becoming clear that FBM is more than just hypocellular marrow, and that it can shape CH evolution and contribute to other adverse metabolic effects. More research could be directed toward the prevention of FBM accumulation and its interaction with other mutations and with human HSCs. With the ultimate goal of correcting the very first steps in leukemia evolution and aging.

I completely agree. I wonder if we could reduce the FBM by increasing estrogen. HRT might be an option but I still worry about that for other cancers... but perhaps just changing the foods we eat and increasing estrogen slightly could assist.  Though I am hesitant to take any action until we know for sure. To me it doesn't make sense that your body would essentially "screw" you in this way at Menopause. I have a feeling that it could simply be related to massive weight gain at Menopause in a great number of women. And perhaps fatty bone marrow, like fatty liver, could be drastically reduced eating less and eating less sugar / reducing insulin. Fatty liver is caused by

Too much refined sugar and high-fructose corn syrup causes a fatty buildup that can lead to liver disease. 

Does it not make sense that another fatty build up could be caused in a similar way? Your body has to find places to put the fat as you keep showering it with sugar and the mere fact that it tends to happen at menopause could be related to a lowering of the metabolic rate while not lowering the level of food. 

This seems to be a very promising study. 

Update: my M-spike went away.

So at my December 2022 Dana Farber appointment I was stunned and very happy to get this result...

Protein Electrophoresis:

-Immunofixation shows a faint M-spike that is not apparent on the

electropherogram and, therefore, cannot be quantitated.

Now I know, a previous doctor already warned me, the electrophoresis is just an interpretation and not an exact value.  So it might show up slightly more more or slightly less depending on the judgment of the person looking at it.  And I know... plenty of people on the MGUS group have had the Mspike go away and come back. 

But, this is the first time in 3 years that the spike could "not be quantitated."  I feel like this means progress.

My light chains are still slightly high and my IGM is also slightly high. But I would imagine it would take time to clear if the clone went away. 

I guess we will see. My doctor doesn't want me coming back for a year but I am still planning on getting IGM tests every 4 months to make sure that isn't increasing. 

Fourth Visit with Dana Farber: Great Results

So it is going on just about 2 years and four months and, so far, my numbers are quite stable. 

My M-Spke: is basically from 0.2 g/dl to 0.28 g/dl. It bumps around a bit but never really goes into the 3s.

My Light Chains are going down... so excited by this. All last year they were going up... and now... they are back in the normal range. 

My immunoglobins... same deal. Last year was heading up.. but this year... almost normal. 

Knock on wood. My doctor is now seeing me every 6 months. 

New Study Showing BMI correlates with progression

One of the issues with MGUS is that it is new and there is not a ton of good studies... so we have a few studies that contradict each other. One seemed to have suggest that being overweight was a risk factor for MGUS progression. One said the opposite. 

Now we have a new study supporting increased BMI with progression.

https://pubmed.ncbi.nlm.nih.gov/35440099/

In conclusion, high BMI is a prognostic factor for MGUS progression, independent of isotype, M protein, and FLCr. This association may be stronger among females.

This study does, imho have a number of problems. 

1. First it is just an association with Body Mass Index? We have no idea if Body Mass Index is the issue OR... something else that may lead to high Body Mass Index. Such as Insulin Resistance or Diabetes.
2. It doesn't give a good measure as to how high the BMI needs to be to cause a problem. For instance, my BMI is 27. I am just slightly overweight. I have a feeling that isn't as dangerous as someone who say is at 30.
3. The data was from long ago.... 1995 to 2003, which was the height of high sugar guidelines.
4. It seemed that most of the patients died during the time period... so, this suggests that the MGUS patients were all older. And we know with age the immune system fails... was that the true cause of progression?

Nevertheless, it is well established that more weight leads to more inflammation and more inflammation leads to more MGUS. So, I have to get my BMI down to 25.

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. 

Fasting could have been a terrible mistake...

When I first started Alternate Day Fasting I saw tremendous benefits.

1. I lost weight hand over foot.
2. My light chains went down.
3. My inflammation was low. 
4. My sugar dropped low.

I had every reason to think it was good for me.  Unfortunately by March I saw some troubling signs.

1. My weight loss was slow.
2. My light chains were increasing
3. My inflammation spiked.
4. My sugar wasn't as low as it once was. 
5. My ferritin was very high (another inflammation marker).

But I kept at it... until that is I ordered a cholesterol panel.

1. My cholesterol was insane at 450.
2. My HS-CRP was 3.8 *high*
3. My Fibrinogen was also above normal. 

Now, I have had this happen before when I was on a liquid diet of 700 cals a day.  The good news is that 8 years later I had no heart damage in a CAC test.  But I went off fasting and started eating at my TDEE every day. Then I got tested again two weeks later.

1. Cholesterol came down 100 points 350 ( expect it to be normal in a few weeks)
2. HS-CRP dropped to 1.8 *average*
3. My Fibrinogen dropped to just above the normal range. 

So it seems to me that something causes all of this to happen and the most likely problem is Cortisol.  Your body is under *physical stress* and it releases cortisol. I can't tell what does it, is it the fasting? Is it the low calories? Is it lack of water -- is it all three? I don't know.  But I do know that I can't utilize this method again unless it is for a very short time. And I do know that I have to eat normally at least until my next visit at Dana Farber (late September). 

Depressed Part Two

Then, let's talk bout my health shall we? Constantly I am told losing weight will be good for my health but it never seems to be.  I lost 37 lbs and I am now merely "overweight" I have a BMI of 28. I weight 169 and am just 20 lbs from normal weight. You should expect to see some major health improvements right? NOPE.

1. My HS-CRP has been elevated since March. I cannot get it down. It is 3.8. It should be under 1. I suspect this has to do with my dieting because, the only other time this marker was raised on my blood tests was in 2012 when I was on a liquid diet.
2. My cholesterol went CRAZY... again this happened perviously when I was on a liquid diet. Cholesterol was 400 mg/dl. And LDL was 350! Just crazy. I might have been happy if my HDL was increased but it wasn't. In fact, ever since hitting menopause... I have been having trouble getting that up. 
3. My hematologist came along and tested me for MGUS tests right after Dana Farber and they were much worse than Dana Farber.  In fact, my light chain ratio went way up... again. So I cannot really write that off to blood donation. 
4. There is, in fact, very little that I had tested here that actually came out good. A1C  came back at 5.4 which is ok but not what I wanted. Triglycerides ere 93 which again... were ok but not great. 

I am also growing increasingly tried of my doctors. At this point I feel like they are my complete enemy. I have just about had it with Dr. K.  At my last blood tests she ran another test again that I didn't authorize.  (Hepatitis C) When the high cholesterol came back she wanted me to go to a cardiologist... instead of just retesting.. now I have to pay for those retests. I don't want to go to a cardiologist. What is he going to do?  I know, he will just reiterate HER opinion that I should be on statins. Why would I allow that? 

I feel like I don't have a doctor. I feel like I have an "Atrius health" wealth coordinator. This year alone she has subjected me to a colonoscopy... a ct scan... and CAC... and more welfare for "Atrius Health" but I rarely feel like I am getting good medical care. 

Dr. K is no longer local. She is doing my care remotely. That is an obvious problem. But I haven't been able to get an appointment with almost any doctor. They are all booked and pushing me off on "Physician Assistants".

At the same time I am so sick of this whole covid thing. It seems like NOTHING WORKS. First, I am so so so sure I had covid and covid started my MGUS. But I keep testing negative on the antibody test. I find that amazing because I sure haven't been hiding in my house.   I think it is because 1. The first antibody tests available wasn't until about 6 months after I had covid... and 2. I have IGM MGUS which reduces the level of IGG Antibodies. I have about 900 of those.  So if, in general I have an IGG deficiency  couldn't that make it difficult to find the antibodies? Covid has been around for 2 years (since the fall of 2019) and you are telling me I haven't been exposed? 

And of course, Dr. K refuses to allow me to get an antibody test on my insurances' dime because she says they don't work. F** YOU. 

Depressed... Part One.

I haven't posted for a while because I have been well... depressed... 

I am being forced back to my workplace. I knew the day would come but I truly thought that there would be some accounting for the fact that we were basically without any strictures when we were working from home and we were a million times MORE productive. Nope. At every turn the employer is acting just like old times. 

It is just unacceptable.  I have to leave my house at 7 AM and return at 7 Pm. That isn't a life. 

At least 2 hours (or more of my day is spent stuck commuting).

I have no options for reasonable food. As all my food must be consumed outside the home or, I have to bring it with me.. and given an hour and 1/2 commute, that may be a little dangerous.  I had asked if we could telework on the train...so I could work in the building from say 9:30 to 3:30 and use the time on the train to get work done.

Nope... Nope ... Nope.. is all I hear these days. 

We have to return on August 2. We were told there were formulating a Telework policy but, no policy. So I guess I might GET that policy when I retire.  I have tons of leave time but it is impossible to take right now. There is simply no one to cover for me.. I am also not vaccinated.  For my independent thinking I will have to wear a mask all day long.  I do think I will be getting the Novamax vaccine but... that won't be out until October and, I would like sometime to see if it has bad side effects. 

The life I am living right now isn't a great one.  

My Results: I don't know what to think...

So I got my M-spike information back and I am very confused. 

At my other doctor,  the below was the result. 

GAMMA 1 M-SPIKE 0.2 g/dL

GAMMA 2 M-SPIKE 0.2 g/dL

SERUM ELECTROPHORESIS INTERPRETATION Two faint bands with restricted mobility (M-spike) in the gamma region consistent with monoclonal gammopathy. IFE testing on 11/17/2020 revealed two IgM kappa monoclonal proteins. Electronically signed by  MD.

 

At Dana Farber

Gamma M Spike 1         0.25 g/dl*

Protein Electrophoresis:

-Two M-spikes detected

One M-spike is admixed within a background of polyclonal immunoglobulins. The M-spike concentration reported includes both the M-spike and the polyclonal immunoglobulin background and is thus an overestimate. One Immunofixation shows a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantitated.

Immunofixation:

-Double gammopathy with IgM Kappa paraprotein.

The findings are consistent with monomeric and pentameric forms of IgM

paraprotein, and do not necessarily indicate biclonality.

So I am SOOOO confused.  Was this an improvement? Was this just a different way of coming up with the same result? I have no idea.

My guess is that this is an improvement /stable because all the other test came back normal. But at the same time I wonder about all this polyclonal immuogloblins talk. Does this meant that I have some sort of chronic infection that I don't know about? I ask because my hs-crp is high as well. 

Now I am kind of obsessed with finding out what could be causing the polyclonal immunoglobulins. 

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.