Friday, October 7, 2011

October 6-7: Qualifying for Transplant

Whew, what a day!

Today I had a chest x-ray, a bone density scan, an EKG, and echocardiogram, and a bone marrow biopsy. Each one had an associated waiting period and travel through a very large hospital.

Pulmonary (lung) function test
Oh, and I found out I may have prostate cancer.

What's funny is that if I had been told that my PSA (Prostate-Specific Antigen) had jumped from 4.0 to 13.3 a few months ago, I would have panicked ... at least a little. Today I thought, "Oh, really?" Prostate cancer is hardly something to worry about today.

It does seem like cancer comes in twos in our house.

As many of you know, I am part of a Christian community. I live in a very large double-wide mobile home with another family. We have an outbuilding in which a single mother and her daughter stay as well. In fact, my wife and I moved our bedroom to my parents' RV a few weeks before my leukemia diagnosis. (Since a couple weeks after the diagnosis, we've been living in Nashville.)

That single mom, Jenn, was diagnosed with melanoma (a malignant skin cancer) in March. They removed the melanoma and a couple lymph glands, but in May some mild seizures (only tremors at that point) led to a diagnosis of brain cancer (an astrocytoma). The doctors said the two cancers were unrelated.


Jenn was only 37, but she handled the news with remarkable grace. She had as much of the brain tumor as possible removed, and then they radiated the microscopic tendrils that were left. She lost hair, lost balance, and had to go through physical therapy, all with a cheerful (and humorous) attitude and a smile. She began my training in how to take cancer news.

They can't really do anything else for her. I think we pray either that it goes away or that it stays stable for a few years until cancer researchers find a cure. Please join us praying for Jenn, too.

Anyway, she had two cancers, one found in March and one in May. It's possible I'm going to have two as well.

Prostate cancers, however, are incredibly misunderstood, at least by everyone I know. I found some information from the American Cancer Society that seems like awful big news to me, and I sure wish I'd been told about it.

But let's save that for a few paragraphs from here, and let's talk about the term myeloablative, and why it can be painful to be healthy.

Myeloablative or Non-myeloablative: Intense and Not So Intense

The paperwork I saw Tuesday said that I was scheduled for a "reduced intensity" transplant. Dr. Strickland had told me that might be the case. Apparently, the cutoff for a full intensity or reduced intensity preparation for the transplant is age 50. I am 50, so I'm in the "iffy" range.

... Okay, now it's the next day. I got interrupted, and I never came back to this blog. I read some of End of the Spear (I have a signed copy!!!) to my kids, which I highly recommend, and then we watched the movie, The Eagle, together.

So now I'm sitting in the waiting room of the "pulmonary/neurodiagnostics" section of the hospital trying to catch up. It's now October 7.

Anyway, Dr. Jagasian came in yesterday and explained what we all know, that all 50-year-olds are not the some. He said, "There are 50-year-olds who walk in looking great, and then there's another that comes in on oxygen in a wheelchair. Not the same."

Results from the pulmonary function test

Anyway, I look healthy enough to consider a fully ablative transplant, which I'll explain in a second, but first let me tell you why it matters.

Apparently, some leukemias stay in the blood, but others learn how to escape. The tumors on my back, clavicle, and lip prove that my leukemia knew how to escape the blood. Also, I had a couple swollen lymph nodes and a swollen spleen.

(And now I'm at home)

All these things mean he'd prefer to do a full intensity "conditioning regimen." This provides the best opportunity to get all the cancer cells no matter where they might be hiding out. As the nurse explained, with a full intensity conditioning regimen, the chemo and the radiation do all or almost all the cancer killing. With a reduced intensity regimen, the transplanted cells have to participate in killing the leukemia as well as replacing the entire blood system.

The full and reduced intensity regimens are called myeloablative and non-myeloablative. The terms have to do with whether they ablate, completely destroy, the bone marrow or whether they just partially ablate it. If they partially ablate it, the new stem cells have to outcompete what's left of my bone marrow besides the other things they have to do.

So Monday they're having a meeting. At the meeting, they'll go over the results from all my tests. After the meeting, Nurse works will email me to let me know whether the doctors opted for fully ablative or not.

I already told them I vote for going for it.

The difference is that one of the two chemotherapy drugs will be doubled, and I will receive six times the radiation. That will result in a significantly increased amount of nausea and pain, but it seems better than having the leukemia come back. At least to me. (Gosh, you know, I think there's a part of me that wants to prove how tough I am, too. Emotions may make life worth living, but they're stupid.)

Prostate Cancers

Like I said, it's now tomorrow compared to when I began this blog. Since I mentioned that I had big news from the American Cancer Society, I've gotten very similar news from the radiology oncology doctor I saw today and from Yahoo News.

Between tests, waiting
The radiology oncology doctor (i.e., he works on radiation in relation to cancer) said that the test for prostate cancer, called the PSA test, has proven to be possibly more trouble than it's worth. It's a great test for finding cancer, but 70% of the cancers that it finds shouldn't be treated, and the test can't tell you which is which!

So the question is, should doctors keep finding these cancers, then treating all of them, resulting in incontinence (i.e., you can't control when you urinate), infections, and even death, or should they wait until the cancer causes some other problem, which means that some cancers will kill the patient, though that could have been prevented with treatment.

Which is worse, the cancer or the treatment?

The reason that question can be asked is because so many prostate cancers are simply not a problem. They will slowly grow until the man dies of old age.

Just today, of all days, a government task force advised men not to be screened for prostate cancer!

The American Cancer Society, says the article, is holding their tongue on approving that decision, instead saying that men ought to decide for themselves. Nonetheless, they did say this (quoting from the article I just linked):

"We have been long concerned, and it has been apparent for some years, that some supporters of prostate cancer screening have overstated, exaggerated and in some cases misled men about the evidence supporting its effectiveness," said Dr. Otis Brawley of the American Cancer Society in a statement. "We need balanced, truthful information to be made widely available to physicians and patients when making important health decisions."

Okay, so statement #1 is that proponents of prostate cancer screening can't be trusted. Statement #2 comes from the article I mentioned yesterday, when I started this blog:

Because of an elevated PSA level, some men may be diagnosed with a prostate cancer that they would have never even known about at all. It would never have lead to their death or even caused any symptoms. But they may still be treated with either surgery or radiation, either because the doctor can't be sure how aggressive (fast growing and fast spreading) the cancer might be, or because the men are uncomfortable not having any treatment. Treatments like surgery and radiation can have side effects that may seriously affect a man's quality of life. These treatments can lead to urinary, bowel, and/or sexual problems. In some men these problems may be minimal and/or short-term, but for others these problems can be severe and long-lasting (or even permanent).

The article goes on to say:

Studies are being done to try to figure out if early detection tests for prostate cancer in large groups of men will lower the prostate cancer death rate. The most recent results from 2 large studies were conflicting, and didn't offer clear answers.

Now this article isn't saying that it's a bad idea to screen for prostate cancer. They're saying the results were "conflicting," but is this what you were told about prostate cancer screening? Or were you told, "If you're over 50, you definitely should get it done"?

Personally, I am always of the position that if the doctors aren't sure that messing with something will help, then they need to leave people alone. "You never know" is not a good enough reason to spend thousands of dollars, risk incontinence and infection, and lose who knows how much time to treatment and sleep to worry. It's just not, and I'm a little offended that this sort of news hasn't already been trumpeted.

On the other hand, my PSA went from 4 to 13, which is a huge jump, big enough to cause the radiology oncology doctor to raise his eyebrows. I guess there are some people who ought to be checked further.

1 comment:

  1. wow, you are amazing! your strength is amazing.. your story is amazing.. i have to read more, thank you for sharing.