LIVING WITH MCL

OK, so it hasn't really been that bad a year. I'm not sure how anyone could claim it was a bad year after surviving open heart surgery the previous one? That is except for me of course. :) Despite being mostly back to normal, I'm still experiencing the occasional, unexpected ache or pain, which I can't help but worry is a precursor to some other new, unwanted problem. I've also gained some weight over the past few months, which I'm finding difficult to get rid of, and the shorter days and colder weather, which always seem to occur this time of year, aren't helping the matter either. Then there's the adventure associated with taking an iron supplement . I've been anemic for the past several years without suffering too many ill effects, so why I felt as though I needed to start taking one now, and endure all the unpleasant side effects , is beyond me. I'd like to stop (I think it may be attributing some to my weight gain), but my last blood test sh...

Everyday the evidence keeps mounting against the wholesale taking of vitamins and supplements. Now the efficacy and the necessity for taking Vitamin D, a vitamin I once considered taking, even recommending it in the past , is being debunked. Vitamin D supplements 'don't ward off ill health': [There is] Little evidence pills lower risk of cancer, strokes or other conditions ......a review of 462 studies involving more than a million adults has concluded that a lack of vitamin D is not a trigger for many common illnesses. ..................... Lead author Professor Philippe Autier, from the International  Prevention Research Institute  in Lyon, France, said: ‘What this  discrepancy suggests is that decreases in vitamin D levels are a marker of deteriorating health. Ageing and inflammatory processes involved in disease occurrence .... reduce vitamin D concentrations, which would explain why vitamin D deficiency is reported in a wide range of disorders.’ I'm not quite sure ...

Most herbal supplements are fake ! At least it's not a surprise to me. And why would anyone expect it to be otherwise? After all, we're talking about a totally unregulated industry where there in no risk, nor penalty for lying, cutting corners, or making misleading statements concerning the efficacy of such products. What may be even more disconcerting is what this means for the rest of the industry? Even though this study only addresses herbal supplements, there is mounting evidence indicting the entire vitamin and supplement industry. (Most recently Childrens Hospital of Philadelphia  banned most supplements  from it's pharmacy). And just when I started taking an iron supplement. :( So if you're still skeptical, or like myself, find themselves in need of a supplement, just remember the old 'free market' adage caveat emptor  [buyer beware] Such is life!

I'm always mindful of that notable quote. A quote that so accurately reflects life, it's hard to forget. My favorite being The future is just a concept we use to avoid living today. Despite that being a quote by a fictional character, it's what Brenda said to Nate when they first met in the TV show  6th Feet Under , doesn't make it any less true, in fact, it might even make it a more compelling quote. The second is by Eric Hoffer , a moral and social philosopher who displayed particular insight into human nature, and that was In times of change learners will inherit the earth, while the learned will find themselves beautifully equipped to live in a world that no longer exists. While the latter depicts what I believe to be the perfect description of the state of affairs in the US today, here are two more quotes that come very close as well. The first one is by Eleanor Roosevelt, one of the most outspoken women in the white house, and attributed to dramatically changing ...

I know this is a little off topic, but living in the hotbed of the illegal immigration debate, I can't help but stray occasionally. For me, all this discussion about the reform of our immigration system, has brought to mind the movie Rollerball. Not the 2002 version, which was truly awful, and didn't make the point I want to bring up, but the original  1975 version , starring James Caan. The year is 2018. There is no crime and there are no more wars. Corporations are now the leaders of the world, as well as the controllers of the people. A violent futuristic game known as Rollerball is now the recreational sport of the world, with teams representing various areas competing for the title of champion. That is the plot line of Rollerball. Six corporations, energy, transportation, communication, housing, food and luxury in control of the world. I thought the movie was particularly compelling for the statement the team owner made to Jonathan (James Caan), when Jonathan commented ...

I had taken an iron supplement several years ago, but it made me constipated, and not feeling that well, so I stopped. So it was with great skepticism how I approached my primary care physician's suggestion I start taking it again. My iron is low, and has been for a very long time, as is my hemoglobin, and my doctor felt it would be a good idea to be taking it. I agreed, trying to avoid and conflicts, but my true intention was not to do so, but  a funny thing happened that evening. I received an email from my hematologist, making note of my low iron levels, and also suggesting I take an iron supplement. Now while I've always been skeptical of taking vitamins and supplements, I am helplessly superstitious, so when I get the same suggestion from two separate, unconnected individuals, I can't help but consider it an omen, and one I need to take to heart and adhere to. So I'm taking an iron supplement (been so for 4 days now), but instead of 325 mg twice a day, I'm only...

Why does the mere thought of using [table] salt make most people cringe? Salt isn't a problem. Sodium is, and you're right, there is some sodium in salt ( approximately 39% ), but that doesn't make it bad. Too much may. Of course too much of anything can cause problems. Besides, sodium is essential for human nutrition. It is used to transmit nerve impulses, and is found in every cell of your body. Most importantly, salt imparts great flavors to food, when used in the proper proportions. So you would think, at the very least, such highly rated chefs would not hesitate to use it in their food. One can only wish. Went out to dinner last night at Michaels on Naples . A very highly acclaimed Italian restaurant in Long Beach. At least you would think so by the price. I just wasn't impressed, and I'm not sure whether I'd go back. While Edie's dish, spaghetti with lobster, had some noticeable flavors, my lobster risotto was as bland as could be. Granted the risotto ...

November 3rd marks the end of daylight savings time ends. The clocks get turned back an hour, and daybreak comes an hour earlier. I just hope I can make it that long. There's still 14 days to go. The last couple of weeks have been particularly difficult. All I seem to want to do is sleep. 6 o'clock comes around, and it's still dark outside. So I turn over, bury my head in the pillow, and go right back to sleep. That's never my plan when I go to bed the night before, but it always seems to work out that way. And it doesn't seem to matter what time I go to bed either. Then on top of everything else, my nose started bleeding this morning. I haven't had a nose bleed in over 3 years, but whenever I do get one, I can't help but think back to 4 years ago when I had to get my nose cauterized and 12 years ago when I had to go to the emergency room. Fortunately this latest episode wasn't that severe, and I was able to get it stopped relatively quickly. [And won...

Or it's about to be anyways. It was 48.7ºF when I woke up this morning. That's not as cold as it can get during the coldest months of winter, but it is getting down there. It's also a lot lower than it has been over the past several weeks, and a sure sign winter is upon us. The question is whether I'm happy about it or not? Of course I'm not happy about it. I much prefer the summer months with their mostly balmy temperatures and longer days, but there are some things to be said for the winter months. For one, sleeping is much more comfortable. I always get my best nights sleep during the winter months. And............ OK, so that's the only good thing I can think of about winter, except maybe it makes me appreciate summer more. Oh well, I guess there's not much I can do about it (moving to the southern hemisphere is out of the question), except try and endure, and relish in the fact winters in southern California aren't really that bad!

I've always considered the t(11;14) translocation as the defining marker for Mantle Cell Lymphoma (MCL). If that translocation presents itself, there is a very high probability you have MCL, but the more I read, the less I am convinced of that argument being so set in stone. Why can't my diagnosis of atypical MCL just as easily be an atypical variant of Splenic Marginal Zone Lyphoma (SMZL)? Sure, I have the t(11;14) translocation, but when all the other factors are considered, I believe I'm a more likely fit for atypical SMZL. From Lymphomation.org Splenic Marginal Zone Lymphoma is an indolent (slow growing) b-cell lymphoma. It typically presents with an enlarged spleen (splenomegaly). "Splenic lymphomas present with a massive splenomegaly (enlarged spleen) sometimes with mesenteric lymph nodes or hepatic involvement, but without peripheral lymph nodes; bone marrow and blood are often involved." With the exception of mesenteric lymph nodes , and hepatic involvemen...

No more 80 hits in a day to gloat over. It's back to my lowly 30 or so hits per day, so I thought I'd just take the time to update a few items I posted on over the last few days. Edie had to stop the Pomalyst [for now]. Her white counts took a precipitous drop to dangerously low levels. I guess the Pomalyst is working too good. She's had 3 neupogen shots since then, and her white counts have rebounded to a respectable 2.3. That's still well below normal, but it's considerably better than where they were earlier in the week. Waiting for her next blood draw tomorrow [Monday] to decide how to proceed. I said before, this drug is very new, so there's going to be a learning curve. Just not sure Edie [or I] appreciates her being the one used as the guinea pig. Oh well, someone has to be! As for me, my MCL remains stable [no change in blood counts], but I'm still experiencing more and more fatigue , which I can't explain but am convinced is caused by the Lipito...

On Saturday, I received 80 hits to my blog. That is far and away the most visitors ever to my blog in a single day. Even more remarkable, it was the weekend which is typically a slow time. So why the sudden surge? It certainly isn't because visitors are interested in me. Most of the hits, almost 50% have been for a post about  curing your cancer not being the best idea . And that wasn't even my post. It was a repost of an article I found in the Wall Street Journal [in 2006] which I thought of interest. It used to be a couple of posts I did on polychromasia were the biggest draw, but no more. Those posts still get their share of hits, just not as many as the curing you cancer post, and I'm curious why the shift? I've also noted a shift in who's visiting my blog. By far the most hits come from the US (as you might expect), followed by Canada and Great Britain. But lately I have been seeing more hits from other countries like Australia, Brazil, Ireland, Taiwan, Norway,...

Edie has started on her second round of Pomalyst, and the results just keep getting better. Her Kappa freelight chains are now down to 36 from the 175 about 3 weeks ago. The normal [reference] range is 5 to 19, so there is still a little ways to go, but at least there is progress. Her numbers haven't been this low since after her transplant in October 2008. (It's hard to believe it's been almost 5 years now.) The only question remaining, as it was was when she first started on the drug, is how long to take it? There doesn't appear to be a good answer for that. Since this drug is so new, there's not a lot of information about how long to stay on it, or even how long is safe to stay on it. Fortunately there doesn't appear to be any significant side effect which can be attributed to the Pomalyst, and which could prevent its further use. So for now the plan is to finish this cycle, and then see what her numbers are at the end and how she's doing, and then decide...

A couple of years ago Tiger made some changes to his golf swing, under the guidance of a new coach (Sean Foley), and while he is still considered a good golfer, he isn't the great golfer he was before making those changes. Some might attribute most of his problems to the break up with his wife, because that's when everything started to go a different direction, but I know better. There was a time when I was a better than average bowler. I was able to average between 195 and 200 pretty consistently in all the leagues I was in, but like Tiger I wasn't satisfied.  I thought I could be better. So I took a lesson. The lesson was well worth while [or so I thought]. My "coach" helped me correct a number of problems I was having, and as the lesson progressed, I was feeling really good about my game. Of course that was practice, and one thing I've learned from 30+ years in manufacturing, is nothing ever works in the lab, under controlled conditions, like it does when i...

The electric company shut off the air conditioner (the 2nd time in 4 days). It's 95ºF outside, and they went and shut it off at the hottest time of the day. Admittedly I have given them permission to do so (for a discount on my electric rate during high usage periods), but that still doesn't make it any more tolerable to sit here in the sweltering heat. It's so hot, I don't even dare have another cup of green tea, as I was planning, for fear I may melt. The only saving grace is I don't live in New Orleans, as someone recently told me this would be a good day there. WOW! If that is truly the case, I don't know how the people of New Orleans can possibly survive a bad day. Edie and I lived in Houston, TX for about 4 years, and I don't remember anything like this back then. Of course we were a lot younger then, and I didn't have a deal with the electric company either. Oh well, I guess I'm just going to have to suffer until the sun goes down!

I knew there was a good reason I've been feeling so run down (fatigued) lately. The truth is I've been run down ever since my diagnosis with MCL, which can mostly be attributed to a <12 g/dL hemoglobin, but lately I just seem more so. A large part of the perceived increase in fatigue could be due to the weather, which has been unbearably hot as of late (my electric bill is going to be so high this month), plus I am getting older everyday, but in light of this  report linking statin use and fatigue , I can't help but think there is a lot more to it. As if relenting to having to take a statin for the rest of my life wasn't bad enough, now I have to deal with this information. Maybe I could just do with a boost from some performance enhancing drugs. (See "In defense of Lance Armstrong" to the right!)

In times of change, learners will inherit the earth, while the learned will find themselves beautifully equipped to live in a world that no longer exists. While the US is still so focused on fighting its battles with bombs, and military personnel on the ground, the rest of the world is using far more sophisticated, and potentially lethal weapons against its enemies, and the US. Just think the devastation that could be caused by a few well placed cyber attacks on our financial institutions, or our energy grid. And what do you think would be the result of China or Russia blowing up a satellite put into counter cyclical orbit at 22,000 miles in space. The results would be far more devastating than any military action the US could conceive, assuming the US could even launch a military attack in the resulting chaos. The terrorists no longer need to physically attack us. All they have to do is threaten. The US will end up destroying itself trying to prevent those perceived [yet non existent)...

It's now been just over 2 weeks since Edie started her first 28 day cycle (21 days on and 7 days off) of Pomalyst, and the initial results are encouraging. After only 12 days on Pomalyst, Edie's Kappa Free Light Chains dropped from in excess of 600 to 175. I believe that to be the biggest individual drop in numbers she's ever experienced. Don't know if any new side effects can be associated with the Pomalyst. Edie has been (and still is) on so many different drugs, it's difficult to determine what side effects are caused by what drugs. At least she doesn't appear to be any worse off, so that's a good sign. The only questions remaining now, are how many cycles of Pomalyst will she need, and if the treatment will be long lasting? Only time will tell!

I was reading an article in the most recent AARP magazine about Bill Clinton and his decision to become a vegan. Clinton traces that decision back to [angina] pain he was experiencing one morning in 2010 (6 years after quadruple bypass surgery), which resulted in him requiring a stent because one of [the grafted] veins "had given out". I did some additional research (on the internet) and discovered the vein hadn't actually given out, as reported in the AARP article, but rather it had become clogged. Further research revealed Cardiac experts say that the blockage of grafted heart vessels is not unusual in bypass patients. Depending on whether the grafts are veins or arteries — the former being smaller and less flexible than the latter — blockage could occur as soon as five years or as late as 10 years following the initial surgery. Schwartz said the bypass graft that was blocked in Clinton's case has about a 10% to 20% failure rate at five to six years. Maybe I'll...

When it comes to life, it should be a simple decision. Right? Well, I used to think that, but now maybe not so much. It depends on how you define quality of life, and what the alternative is? I like to think, when the time comes, it will be a simple decision for me, but since that time hasn't come yet, how can I really be sure? Now consider the same question when it comes to food. Is that as simple a decision? For me it is. When it comes to food, I always choose quality over quantity. Still the question arises, how do you define quality? Some people may equate quantity with quality. Some people may prefer lightly seasoned food. Others more seasoned. Like wine, we all have different tastes and what I like, someone else may not. I bring this up as a result of the dinner Edie and I attended this past weekend with the wine group we belong to. I thought the food was awful [tasteless]. The portion sizes were large, and the price was right (including no corkage), but the food, IMO, was ta...