2012 – Not off to a good start!

 Diagnosis, Life, My MCL  6 Responses »
Jan 032012
 

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 another inspector, who treats with Boric Acid (doesn’t require the occupants of the house to move out), and he’s coming on Wednesday to inspect the house. At least if he confirms the findings, and we do decide to treat, we won’t have to move out of the house.

And finally, I just heard that Terry Hamblin isn’t doing so well, and is in a local hospice in England. Dr Hamblin is the first specialist I contacted shortly after being diagnosed with CLL in 2002. He was one of the first to do research in the field of IvGH mutations, and was instrumental in recognizing I had MCL [not CLL], and in my decision to wait and watch, rather than jumping into treatment right away.

Dr. Hamblin retired a few years back, after being diagnosed with cancer, the type I can’t remember. I do know it wasn’t a blood cancer though. Still, he always responded to me personally whenever I had a question or concern, and to the questions of other patients on one of the message boards. He also provided great insight into some the latest treatment protocols and research being conducted on his blog, even when he was receiving treatment for his cancer.

I was fortunate enough to meet Dr. Hamblin for an examination, during the Christmas holiday in Bournemouth, England, in 2002. A visit I will not easily forget. My heart goes out to him and his family. He will be sorely missed.

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 Posted by Marc at 2:14 pm  Tagged with:

Research sheds new insight into understanding lymphoma

 Diagnosis, General Health, My MCL  2 Responses »
Jun 112011
 

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.

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 Posted by Marc at 4:34 pm  Tagged with: ,

Another year come and gone

 Diagnosis, Life, My MCL  3 Responses »
Apr 042011
 

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, hoping [beyond hope] I don’t wait too long, and it becomes too late to do anything that will be effective.

One thing I have learned from all this, making decisions at work was a lot easier than the ones you have to make in life.

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 Posted by Marc at 7:48 am  Tagged with: , ,

100 months

 Cycling, Diagnosis, Life, My MCL  7 Responses »
Jul 252010
 

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 bike 70 miles this morning, and managed not to get dropped [until the very end], despite a pretty rapid pace. Of course I am pretty tired right about now.

I know I’ve obsessed over this before, but I can’t stop wondering how I’ve managed to be so fortunate. Like I’ve said many times before, if I didn’t know I was sick, I wouldn’t know I was sick. And I doubt many others would think so either.

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 Posted by Marc at 2:19 pm  Tagged with:

No treatment required

 Diagnosis, My MCL  No Responses »
Jun 162010
 

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 if it is the result of iron deficiency, or just a manifestation of my lymphoma. He’s convinced, based on the my ferritin levels in the blood, iron stores in the bone marrow, along with some other tests, that I am not iron deficient. [And I agree.] As further confirmation he also checked my haptoglobin levels which were actually higher than normal. It would have been low if I were iron deficient.

(We also discussed depression as a cause of fatigue, and suggested drugs, but I refused to go there!)

So I think it’s safe to assume I’m not iron deficient, but if I wanted, he suggested I continue taking an iron supplement (65 mg of elemental iron per day), for another two months, and see if my hemoglobin increases any, as even more confirmation of that fact.

I’m gonna have to think about that for a bit though.

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 Posted by Marc at 7:40 pm  Tagged with: , ,

Another anniversary, come and gone

 Diagnosis, Health Care, Life, My MCL  2 Responses »
Apr 032010
 

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 fateful March day in 2002, I likely wouldn’t know I was sick. Heck, I still find it hard to believe I am sick, and I have all the documentation to prove it.

And how many people are diagnosed early on with a terminal illness, and get treatment prematurely, because of a fee for service health care system which encourages unnecessary treatments, when waiting and watching would have been a better approach (such as in my case), and then die prematurely due to complications of the treatment. [OK, so that's two political rants. I couldn't help myself.]

Who knows? I sure as hell don’t, but I still bless my lucky stars I did learn early on. Otherwise I likely wouldn’t have done many of things I have done since my diagnosis.

The only problem now is, the longer I go without feeling sick or needing treatment, the more complacent I’ve become, sometimes thinking I’m not really sick, while at the same time becoming more depressed with every blood test, thinking treatment is just around the corner, and the less likely I am to live life to the fullest. Some how I have to put a stop to that.

OK, enough feeling sorry for myself. Time for a bike ride.

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 Posted by Marc at 6:55 am
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