Living with MCL

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.
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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 used American College of Radiology guidelines to determine whether they were appropriate.

They found that 52.2 percent of the patients were found to have had CT scans that were unnecessary. The average excess radiation dose per patient was 11.3 millisieverts, about the equivalent of 113 chest X-rays.

RAISING CANCER RISK

Some patients got a lot more radiation than others. In one in five patients, the dose was 50 millisieverts, enough to raise some concerns about health problems, Guite said. Seven of the 500 got 100 millisieverts of radiation, a level known to raise the risk of cancer.

“At the dose seen in our study, one in 1,000 patients could get a radiation-induced cancer,” Guite told the meeting.

“This could lead to up to 23,000 radiation-induced cancers per year,” she said.
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Dr. Louis Hinshaw of the University of Wisconsin who worked on the study said many institutions may be doing the extra studies for good measure, …………..

But he said it was possible some centers were doing the extra scans because they may get paid more for them.
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and being as cynical as I am [when it comes to the US health care system] I might also add:

to help recover some of the uncompensated and under reimbursed care health care providers are forced to provide, and at the same time increasing the risk of cancer for those that have the tests, creating potential new sources of revenue in the future.

That’s how free markets work!

NOTE: Some [all] of the women may also be interested in this article on Mammograms.

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 focus on the results of just one test. You have to look at trends.

Fortunately though, my total lymphocyte counts were about the same at 90 thou/cumm, which is good.

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 Monterey, and then drove to Solvang the next day, where the weather, while not perfect, was much more tolerable. Plus the wine there is very good! We ended up buying 19 bottles in only a day and a half of wine tasting.

Another lesson I learned was not to drive a car into San Francisco. I definitely won’t do that again. Traffic is horrendous, and parking is unbelievably expensive. I ended up spending $54/night to park the car at the hotel where we were staying. [That is just ridiculous!] Next time I’ll fly, and walk (it’s not a very big city), or take a taxi or bus to where I want to go. $108 goes a long way in a taxi, and even further on a bus.

I also learned I don’t need to go to another lymphoma conference. For all the talk about how great our health care system is in the US, treatment options for cancer (which consist of infusing deadly chemicals into the body) haven’t really changed much in the past 40 years, except for maybe the reemergence of Bendamustine, an old East German drug [chemical] which is showing good promise in treating lymphoma. There is some new research going on, but nothing at all earth shattering, or that I didn’t know about already, but even those are years off. Hopefully I’ll still be around then, but I have my doubts.

I did get one piece of new information from of the conference, and that was, in addition to having MCL, I may also have Cutaneous T Cell Lymphoma (CTCL).

You see, ever since my diagnosis with MCL, I have noticed a number of lightly discolored spots on my chest and back. They never bothered me, they’re relatively small, and they’re not very visible, so I never gave them much thought, that is until I saw pictures at the conference which bare a striking resemblance to what I have. The spots make up well less than 5% of my body’s total surface area, so if it is CTCL then it is likely a very mild form known as Mycosis fungoides (MF).

In about 10% of the cases, MF can spread to the blood, lymphnodes and other organs, but the spread in very unpredictable. In most people it progresses very slowly, or often times, not at all, which after 7½ years, just might be my case.

Of course it is possible I don’t have CTCL, as I was told by the expert, at the lymphoma conference, it is rare to have both a T Cell and a B Cell Lymphoma (MCL is a B Cell lymphoma), but it has been known to occur. And I have often been told I am a one of a kind individual.

It will be interesting to see what my oncologist has to say about that at my next appointment.

Worst of all though, it wasn’t until I got home that I learned I gained 4 lbs. I wouldn’t think that was possible, only being gone 5 days. I guess 5 days off the bike, and way too much food and wine, definitely takes it toll.

But it is good to be home, back in my own bed and back to my regular boring life.

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 spleen, but I’m not too keen on that idea.

But after 7½ years of not needing treatment, and even entertaining the thought I may never need treatment, the decision to wait at least another month wasn’t a difficult one to make. After all, except for an enlarged spleen, I feel [mostly] fine. Plus I’m still convinced the green tea is the cause of the rapid drop in platelets, rather than a change in my lymphoma or my greatest fear, bone marrow failure.

So in the mean time, I’m going to cut back my green tea intake [again] to about 3 cups of tea a day from 4 cups a day, and my hematologist ordered new cytogentic tests, AKA Flourescence in Situ Hybridization (FISH) to see if anything has changed in my chromosomal makeup, i.e. new translocations, deletions, additions etc.

Based on those results, and the results of next months blood test, we should have a better handle on what, if anything, is going on. Plus it will give me more time to do additional research, and consult with some of other lymphoma specialists, I have had contact with since my diagnosis, including a few at the lymphoma conference Edie and I will be attending in San Francisco next month.