Living with MCL

It’s raining outside, and as you might expect, I am bored [big time].

So I thought I would give you a little taste of some of the discussions I’ve come across on the various list serves I belong to in relation to my MCL, which I made particular note of, concerning medical care and what ever.

In this first post, a woman is complaining about the poor care she is receiving from her primary care physician (PCP).

I left my PCP’s office in tears today. I’ll give you a little background, when I do go I usually have to wait 1 to 1/2 hr to even see him, then, he’s with me for about 2 minutes. <snip>

Anyway, I’m in constant pain, I mean constant, with the RA, the joint pain from the chemo, the bursitis and degeneration in my hip, the carpal tunnel in both hands, all of which happened after chemo. The Doctor came in and said “what’s going on today” I said “I’m in pain” his reply “again?”. He says “I’ll send someone in with your prescriptions” and started leaving the room, I said “wait” and he replied with “I’ll be right back”. When he came back I asked if he has even read my chart concerning all the pain I’m in, he said yeah but he was more concerned with the “cancer”. He proceeded to leave the room again and I said I wanted to talk to him about some things, again, he said he’d be back. When he finally came back I asked him about a pain management program because I want to work, which is getting harder every day. He said “let’s wait until after your pet scan and we’ll worry about it then” I just felt like he was saying let’s wait to see if worth the trouble or not or let’s see if you’re going to live first, then he left the room, all this happened in about a 2-3 minute span.

<snip>

I have to go to Doctor’s “in network” so my options are kind of limited, but I don’t think I can ever see that Doctor again after today!!!

That’s unfortunate, but doesn’t she understand that as reimbursements continually get cut to health care providers by the government (Medicare/Medicaid), and by health insurance companies [to increase profits], some doctors don’t always have the time to be as concerned, and they just aren’t going to perform to the best of their abilities.

Just think about that for a minute. How would you feel if you were asked to work for less money each year?

And here’s another email from some one who wants his insurance company to pay for a visit to an out of network doctor, when his plan doesn’t give him that option.

I was wondering if anyone has advice for an appeal letter to send to our insurance company to appeal our denied request to go see an out of network physician for a second opinion. If possible please also forward my wife on any suggestions or advice as we will be working together to come up with a letter.

I guess he must think he’s in a country like France or the UK where you can see any doctor you choose. But he’s not. He’s in the good old US of A, where we have enough trouble just getting the benefits we’re entitled to, let alone trying to squeeze the for-profit health insurance industry for benefits we’re not entitled to.  GOOD LUCK! (I might also had some of my comments back to him weren’t well received by a few members of the message board.)

And finally, there’s even some religious undertones which go on here. One lady was upset because her cousin, diagnosed with non hodgkins lymphoma refused treatment, and just wanted to die. A lot of the posts were supportive, but this one post got my ire.

The neighbor down the street, at eighty-something had had successful heart surgery and seemed to be on the mend after months of suffering and several hospitalizations. She was diabetic but then suddenly developed kidney failure. She out and out refused dialysis. Wouldn’t discuss it and her conversation amounted to, I’m ready to die. Period. End of story. Her husband and friends’ pleas were ignored. Then in her final two days’ dying in an extended care facility she regretted her choice (told my wife who works there). Rational decisions aren’t everyone’s choices. Sad to say.

Anyone else think this post is contrived, and designed to advance an agenda?

Oh well, like I said, I was bored.

I can certainly assure you of one thing, it’s not a lot of fun. Besides all the knowledge and experience gained, making it more difficult dealing with younger people who think they know it all, and even the fact the body doesn’t always want to do what the mind tells it (two things I might touch on further at a later date), the most difficult part of getting old is the fragility of the body, and the greater susceptibility to injury. Especially the back.

On Christmas day, I hurt my back shaking up a jar of dijon mustard. [No comments please!] For 2 days, despite wanting to go for a bike ride, the pain was so bad, I wasn’t even able to do the simplest of tasks. What’s even worse, I thought I was pretty much over it on Monday, when for no apparent reason (at least none I could determine), I experienced the same debilitating back pain again that occurred on Christmas day.

Fortunately after this episode, and another 3 days of rest, I felt well enough to go on the annual SoCal New Years Day ride, albeit an abbreviated version. I even managed to do one lap of the hammer zone ride on Saturday. I felt fine after both rides, and was even surprised I hadn’t lost too much speed, considering I was off the bike, and basically laid up [so to speak] for a week. I was even starting to feel good about the start to the new year.

But, and there always seems to be a but, this morning as I was starting to get ready for my bike ride, my back acted up again, as I was putting on my riding jersey. Unbelievable, I thought! What is going on? I could barely move. I sat down until the pain subsided somewhat, and then managed to apply some heat and ice to the affected area.

So right now the pain has pretty much gone away, at least I don’t feel much worse than the previous two days [when I rode], which is surprising considering how much pain I was in. I’m actually even considering going on a ride. I’m just not sure how  good an idea that might be.

There is all sorts of information in various print media and on the internet about the positive effects of the antioxidants, particularly Epigallocatechin gallate (EGCG), in green tea.

But can you believe everything you read in print media, and/or on the internet?

There are certainly plenty of people around making claims about the efficacy of green tea and EGCG, while at the same time trying to capitalize on the supposed efficacy by selling vitamins and supplements containing EGCG. The supposed reasoning being, if a little is good, then a lot is better.

I for one don’t subscribe to that theory, preferring to believe if you can’t get it naturally, it’s not worth getting. In fact I believe it was my mega-dosing on vitamin C, D, E and calcium which contributed to my contracting MCL in the first place. Now I refuse to take any medication, vitamin or supplement, even as benign as an aspirin, although I will admit to having taken an Advil or two, but that is about it.

So in order to get my dose of EGCG, I go to the Japanese supermarket and purchase Japanese (loose leaf) green tea, mostly Sencha, which is reported to be the highest in EGCG, but on rare occasions I do purchase Gyokura, which is a higher quality and better tasting green tea.

I will admit to having been drinking a considerable amount of green tea for many years since my diagnosis with little change in the progression of my disease, but during that time, I had been purchasing the least expensive green tea available in bags (40 bags for $2 at Fresh and Easy, or comparably priced green tea at Trader Joe’s).

But in May of this year, spurred on by research a friend who was diagnosed with bladder cancer performed, I switched to purchasing the real stuff, that is loose leaf Japanese green tea, which I alluded to previously is reported to be the highest in EGCG [plus I have little faith in the quality of the green tea coming out of China].

And that’s when I started to see some results.

Since April, I have seen a steady decline in my lymphocyte count, from approximately 100 thou/cumm (where they had been for about the past one to two years) to around 84 thou/cumm (reference range 4 – 11 thou/cumm) currently, which when you have a lymphoproliferative disease, could be taken as a good sign.

However, it’s not all joy here in Mudville, as one not so great side effect appears to be a reduction in platelets [one of the first indications of bone marrow failure, so I watch it closely], which have dropped from around 200 in April to 172 (reference range 130 – 400) yesterday. [Also based on a 6 month moving average.]

I started noticing a very gradual downward trend in both the lymphocytes and platelets starting in July, but it wasn’t until September that I realized something was happening. My lymphocyte count dropped dramatically to 62 thou/cumm, and platelets dropped to 158 thou/cumm.

At that point I started to get concerned, first thinking my spleen was malfunctioning (hoarding lymphocytes and platelets), but then I realized maybe it’s the green tea.

So I decided to cut back on my green tea consumption, from about 4 to 5 cups per day to 3 to 4 cups per day, to see if there was a “green tea” effect.

Well, at first glance there appears to be a direct correlation. The next month my platelets climbed back up to 179 thou/cumm, and my lymphocytes climbed back up to 93 thou/cumm. I became a lot less concerned, knowing the drop in platelets wasn’t likely the result of bone marrow failure, or my spleen malfunctioning, even despite the fact my lymphocytes did go back up.

The numbers did drop again slightly in November (lymphocytes down to 86 thou/cumm, and platelets to 171 thou/cumm), but I wasn’t overly concerned. You can’t put too much faith in one test, which is why I try to smooth out the results using a 6 month moving average.

Anywaze, after the blood test results in November, I gradually started increasing my consumption of green again, to an even greater amount than when I started. Instead of 4 to 5 cups a day, for the past couple of weeks I was drinking as much as 6 and even 7 cups a day.

And guess what?

My platelets dropped to their lowest level ever, 151 thou/cumm (172 using a 6 month moving average), and my lymphocytes dropped to 73 thou/cumm (84 thou/cumm based on a 6 month moving average), which excluding September of this year, hasn’t been this low since March ‘06.

So now I’m faced with a dilemma. Do I maintain my current level of green tea consumption (5 to 6+ cups per day), and risk a further reduction in my platelets, or do I cut back again, and reduce the beneficial effects (a reduction in lymphocyte count) of the green tea?

Damn! I hate these kind of decisions, but at least it’s good to know, anecdotally in my case, there is some truth to the claims of the efficacy of green tea. That knowledge, however, still won’t make me change my mind about taking EGCG supplements.

These are two terms that get bandied about quite often, and I might add incorrectly for the most part. I even recently received an email telling me that according to dictionary.com, they are synonymous.

Well contrary to popular belief, not everything you read on the internet is true, especially when it comes to health care [and health care reform I would add]. Manifestations and symptoms, although related, are not the same thing.

Symptoms are something that alert you to a problem, i.e. night sweats, bleeding that won’t stop, fatigue, bone fractures [in the case of Multiple Myeloma], and manifestations enable the doctor to reach a proper diagnosis. Even more simply put, manifestations can be measured, symptoms cannot.

For example,

Increased bone fractures are a symptom of Multiple Myeloma, resulting from decreased bone density, which is confirmed through additional blood tests looking for abnormal amounts of plasma cells, and certain particular antibodies of Multiple Myeloma.

Low platelets are a manifestation of many diseases, which can result in symptoms, such as internal bleeding from minor bumps, or bleeding from cuts that won’t stop.

Low neutrophil counts are another manifestation, causing increased infections (a symptom) because of the body’s lack of neutrophils to fight off the infections.

High lymphocytes, as in my case, are an indication of a lymphoproliferative disease, which can result in fatigue, night sweats, weight loss and other symptoms.

So why do I bring this up, you might ask yourself? I don’t know for sure, except to say I think it’s important to distinguish between the two. [Plus it's a rainy weekend, and I don't have much else to do.]

Just being diagnosed with a terminal illness, doesn’t mean you’re on your death bed, and it doesn’t even mean treatment is immediately warranted. And despite being ingrained in our minds the earlier you can diagnose cancer and treat it, the better off you will be, that isn’t always the case. There really is some truth to the statement,

sometimes the cure can be worse than the disease

In my case, I was diagnosed with Mantle Cell Lymphoma (MCL) in March of 2002. My MCL has manifested itself in many ways, high lymphocyte count, low hemoglobin, particular antibodies (CD markers), and several chromosomal aberations. But with the exception of an enlarged spleen [which I'm not sure is actually not a manifestation] I have no symptoms, and I feel mostly fine.

Had I been treated, when first diagnosed, I may have achieved a 5 year (or even longer) remission, but would I have been better off in the long run? What is the likelihood of a cure? What would have been the resultant side effects of the chemo? Would future treatment options be limited?

Those are important questions to ask, and while I’m never going to know for sure, somehow I doubt I’d be better off today had I started treatment early.

There have been many lessons I’ve learned in my almost 8 years since diagnosis, but two have stuck with me the longest. The first being,

No one cares more about you than you do

and the second was from a hematologist in the UK, who said:

You treat the patient, not the disease

Just a little something to think about in the coming year!