LIVING WITH MCL

WOW! We're only 3 days into 2012, and already it's not looking that good. It actually started New Year's Eve, when I thought my surround sound audio receiver was malfunctioning [Dolby Digital wasn't being displayed]. It took me 3 days to figure out the problem, which turned out not to be such a problem. Still it was stressful, especially since over the holiday weekend no one was available to contact for support. Then yesterday the termite inspector came by, and said the house needs to be tented. Jeez, we just had it tented barely 16 months ago, and the termites are [supposedly] back already. I'm not about to go through another tenting. It's not the cost so much, which isn't cheap at about $2K, as much as the hassle of moving out of the house for 3 days, costing at least another $500, dealing with 2 cats, plus having to double plastic wrap all the food and wine to boot. It's just not worth the hassle. The termites can have the house! So I contacted anothe...

Researchers from the University of Sheffield have discovered new insight into how and why people may develop B-cell lymphoma. ....researchers demonstrated that B-cells are deficient in one of the main DNA repair pathways, known as Nucleotide Excision Repair. This pathway repairs a lot of different DNA lesions, including UV-induced damage and chemical adducts (e.g. from air pollution and cigarette smoke). Read the full article I wonder how [if] I might be able to use this information to my advantage.

It's now been just over 9 years since I was diagnosed with MCL, but unlike the fact I no longer have to go into work, this is something I don't think I'll ever get used to. I've even gotten to the point now where I think I may never need treatment, which wouldn't be a bad thing, but what's scary is, that mindset has become so engrained, I'm at the point where I'm afraid of treatment, and may be hesitant to take it, or even realize I need treatment, when the time comes. I may even benefit from beginning treatment now, with single agent Rituxan, which would likely make me feel better by reducing the size of my spleen, and my feelings of fatigue, but when I think of all the known [and potentially more severe] unknown side effects, I'm hesitant. After all, I'm not at the point where I am totally debilitated. I can still function somewhat normal (and not having to make that 80 mile drive to work any more has helped), so I maintain the status quo, hopi...

That sure doesn't sound like such a long time, does it? Heck, the typical home mortgage is 180 to 360 months. Even some car loans are in the range of 84 to 120 months. But when you're talking about cancer survival it's an entirely different story. It is a long time. And I should know, because that's how long it's been since that fateful blood test that led to my diagnosis of mantle cell lymphoma (MCL). That's 100 months of living with a terminal illness, 100 months of blood tests (121 total) watching my numbers gradually degrade, and 100 months of stress, waiting for the next shoe to drop. But when I read the results of trials, which consider remissions of 6, 12 or 24 month as being good results, along with the numerous problems and complications experienced by others, I can't help but also think of 100 months as being a milestone. Especially considering I haven't had any treatment, and still feel like I'm in pretty damn good shape. I even rode my b...

Another person expressed some concern today, after my last post, that I may be starting treatment soon. Well, let me clear up any confusion. That isn't the case. It's just I get into these moods every now and then, when I can't help but question how much longer can I be so lucky? Especially when I look at Edie, and so many others in similar situations to me. Why have I been so fortunate to be so active, and not require any treatment for over 8 years, despite having a terminal illness? It just boggles my mind, and I find it difficult to believe it can go on much longer, but ............. Anyways, I had an appointment with my oncologist today to review my latest BMB and cytogenetic test results, and guess what? I have Mantle Cell Lymphoma. Actually I knew that all along, but if you remember back in April, I posted how my new oncologist was convinced I had Splenic Marginal Zone Lymphoma. Well, he's now convinced otherwise. We also discussed my low hemoglobin/fatigue, and ...

Yes, it's been 8 years [a year and 8 days to be exact] since my diagnosis with Mantle Cell Lymphoma (MCL), and I barely even realized it. Even to this day, it's hard for me to comprehend the fact I was diagnosed with a very aggressive lymphoma, with an average life expectancy of only 5 years. Of course one of the drawbacks with life expectancy predictions for a terminal illness, is there is almost no way of knowing how long the person had the disease before diagnosis. Was it one year, two years etc? It's difficult to know, especially with the health care system that exists in the US, where a large portion of the population is excluded from the health care system, and others can't or won't go to see a doctor, because of the cost, until it's too late. [OK, that was my political rant for the day.] Just how many other cases are there like mine? How many others are walking around with cancer, and don't know it?  If I hadn't gone for a physical exam that fatef...

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 wi...

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...

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 orde...

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 p...

Most of you know, when it comes to the US health care system, I am not a big fan. Notably, it discriminates against the less fortunate, and in many cases does not work in the best interest of the patient. I think the following article justifies many of my concerns, pointing out a huge flaw in the for-profit, fee-for-service health care model adhered to in the US, while highlighting the importance of being your own advocate, and approaching everything you do, especially regarding your health, with a bit of skepticism. CHICAGO (Reuters) - More than half of patients receiving abdominal CT scans, an advanced type of X-ray, got them for tests they did not need, exposing them to excess radiation that could raise the long-term risk of cancer, U.S. researchers said on Monday. ............................. The University of Wisconsin-Madison team led by Dr. Kristie Guite studied 978 CT scans of the abdomen and pelvis done on 500 patients that were sent to the university to be interpreted. They...

I find it very interesting when comparing results of tests performed at Kaiser and the VA, all the results are better [higher] at the VA. After receiving the latest blood test results (taken with 24 hours of each other) At the VA, my hemoglobin was 12.7 g/dl vs 11.5 g/dl at Kaiser, and my platelets were 212 thou/cumm at the VA vs 178 thou/cumm at Kaiser (both with the same reference range). Even my blood pressure was higher [not better]. At Kaiser, and when I check at home, my blood pressure always ranges from 110/60 to 120/70, but at the VA, it's always about 130/80 or higher. I can certainly understand blood pressure being higher due to the environment, and a shorter wait to have my blood pressure taken at the VA (little time to relax after a brisk walk to the doctors office), but why the hemoglobin and platelets? Oh well, I guess that just goes to show you how much variability there is in the equipment and/or the technicians interpreting the results, and a good reason not to foc...

I learned I don't like going on vacations. Of course that's really nothing new. I've always known that, but I can't help myself. I just love the anticipation of going on vacation. It's just that once I'm on vacation, all I can think about is getting back home. [Is that what happens when you get old, and set in your ways, or is it just me?] I also learned October is probably not a good month to go on vacation. While this is supposed to be the warmest month of the year in San Francisco, it was anything but that on Saturday and Sunday. When we arrived on Friday, the weather was actually pretty nice. It was sunny, warm, and there was very little wind. Of course that all changed when the sun started to set. Not only did it get colder, but the wind picked up, making walking to dinner a little trying. And it didn't get any better the next two days, including the drive down the coast to Monterey on Sunday, where it was even colder and windier. We spent one night in ...

Saw my hematologist today, and we decided the best thing to do is wait another month. We talked about possible treatments, and I was glad to hear she (my hematologist) was amenable to using  Rituximab as a single agent therapy instead of going for all out chemo. I was also interested to learn she was surprised my platelets were as high as they were, considering the size of my spleen. She has seen several others patients, with smaller spleens than mine, exhibiting much lower platelet counts. Removal of the spleen is another possibility, and could provide several years of relief, but there are a few downsides to that approach. Not only would I be off the bike for a few months, it will require the taking of antibiotics for many years, or even the rest of my life, until other organs take up the spleens functions, and the lymphoma has been known to spread to those other organs, including the liver, which would not be desirable outcome. She even mentioned the possibility of radiation to the...

As if the company I work for being bought out, and the onset of fall, with the weather changes and the much shorter days it brings isn't enough, I just received my latest blood work today, and it was not to my liking. Not only did my lymphocyte count drop from 94 thou/mcL to 62 thou/mcL (which may or may not be a good thing), my hemoglobin dropped back down to 11.4 g/dL, and my platelets continued on their downward slide, dropping to 158 thou/mcL from 172 thou/mcL last month, and 200 thou/mcL in July. What's really disappointing, I went on a pretty hard bike ride this morning, and climbed the 2 miles up to the top of Turnbull Canyon within 2 seconds of my best time this year. I was really feeling good, that is up until just now. It's always possible the hard bike ride, and the slight dehydration, may have skewed the results, but I'd have thought the results would be higher (like my creatinine, which was up to 1.2 today), not lower. Whatever, something is going on. Eithe...

When I got up this morning, I felt like sh@#&! I was just plain tired, made even more so, knowing my latest blood work had me with a hemoglobin of 11.5 g/dl. I was also concerned about the two nose bleeds I had on Sunday and Monday , and wondering if I was going to be able to ride my bike at all this morning. I couldn't even back out of riding [which at the time I wanted to], as I committed to do Turnbull Canyon , with a friend. So I made the best of it, put on a happy face, and headed out at 7 AM to meet Ed. From the very moment, I left the house, I felt I was going to have problems. My speedometer was only registering about 16 mph, which was really discouraging as I felt like I was doing 18 or 19 mph, but I persevered anyways. There's no way I was going to ever admit anything was wrong. So we meet up, and headed for the Whittier foothills. I did my best to keep up with Ed, hoping only that I wouldn't get another nose bleed, and would not fall too far behind on the hil...

I just hate it when people ask me for advice about what I've done [and am still doing] to keep my MCL at bay for so long. I hate it because I really don't have a good answer, and I don't want to mislead anyone. Sure I drink a lot of green tea, and a lot of red wine, but I'm not really convinced they have been effective in holding my MCL at bay. There just isn't any scientific evidence proving their efficacy. I am hopeful, and believe that in moderation, taking only what can be obtained naturally, can't do any harm. I won't take and EGCG or Reservatrol supplements. [note]The main reason I drink lots of green tea is to ensure I hydrate myself enough, and I drink red wine, well... because I like it.[/note] There are however, some practices I follow which I believe have been effective in extending my longevity, i.e. restricting caloric intake, and intense exercise, but I haven't seen any scientific evidence to prove the effectiveness of those practices eithe...

Despite being a heavy drinker of green tea since my diagnosis, mainly for its cancer prevention, and hopefully cancer curing qualities, I recently have developed a new found enthusiasm for green tea. Now whether it has been the green tea I have been drinking for the past 6+ years, my heavy exercise routine, or just pure chance that has kept my MCL stable, or at least [very] slow progressing, for the past 7+ years is certainly open to debate, but based on past research, I have chosen to believe green tea has at least helped to some degree. So what has given me this new found enthusiasm? Well, a friend of mine, and cycling buddy, was recently diagnosed with bladder cancer, and knowing my daily regimen called to ask my advice on green tea. He had already done a lot of research on the subject, so when I told him my obsession with green tea consisted principally of drinking the least expensive, decaffeinated green tea available (Trader Joe's brand of 18 tea bags for $3, and more recentl...

I'm sure I pissed off a few people on the MCL message board today with my comments about fatigue, and I'll probably piss a few more people off with this latest post, but I can't help myself. I actually enjoy sparking controversy sometimes, it helps get the juices flowing, not to mention fatigue is one of my favorite topics, second only maybe to discussions on the US health care system, or lack there of. There seems to be constant discussion about fatigue on all the message boards, not just the MCL board, but it all boils down to lymphoma survivors claiming bouts of fatigue, after chemo, a transplant, or just from having lymphoma, without any logical explanation, e.g. low hemoglobin (around 10 g/dl), EBV , CFIDS , all which can be checked for. I have to admit I am of the opinion of most of the doctors, who have little sympathy for these patients, that fatigue in the absence of a low hemoglobin etc. is mostly psychological. Certainly there is the fatigue associated with recei...

Here it is 6 AM Wednesday morning, it's 48°F outside, and it's still dark. I remember just last week at this time, the sun was starting to rise, and I was already preparing to meet the group at 7 AM for a bike ride, but now it's an entirely different story. It will barely be light at 7 AM when I get to the marina, and it will definitely still be dark when I have to leave the house to meet the group. So here I am, drinking my tea, having already gotten up late, and instead of starting to get ready for my ride, I'm blogging. How depressing!