Multiple Myeloma – Mostly True

I would like to take this opportunity to apologize for not maintaining my blog as well as I should. It’s been a couple weeks since I’ve added anything new. I’ve had a lot going on but I promise to try to do a better job of updating this spot of the Internet.

So what’s new? In June 2018 I posted that I was undergoing treatment for Multiple Myeloma, a cancer of the blood. In that post I mentioned that my blood levels were once again beginning to rise, a sign that the cancer was adapting to the treatment regimen. Recently, the blood levels were taking wild swings, both up and down. Those swings were a clear indicator that it was time to change the treatment regimen.

The old treatment regimen was a daily chemotherapy drug in pill form. It was really convenient but I had been on the drug for nearly seven years, which is a long, long time with Multiple Myeloma. Eventually the cancer cells mutate and the treatment becomes less effective.

We’ve moved on to a relatively new drug called Daratumamab, commercially known as Darzalex, used in conjunction with a protreasome inhibitor called Velcade. I’ve tried to keep up to date on new advances in the treatment of the disease and Daratumamab is one of the most promising drugs available, so I was happy when we went in this direction.

Daratumamab is not a chemotherapy, but is a monoclonal antibody. Basically, it’s an immune system protein that attaches itself to the cancerous protein and either destroys it or allows another therapy, in my case a proteasome inhibitor called Velcade, to destroy the cancer cells. It’s a two-pronged attack and has proven to be very effective. Keep in mind that it’s not a cure for Multiple Myeloma; at this time there’s no such thing. It does buy you time, though, and over time new, more effective treatments become available, and there’s always the possibility of a cure in the future.

I schedule my visits early in the morning. I like it as I’m frequently the only patient for the first hour or so. The nurses are great and I have quiet time to just read or even nap. It could be worse.

There are times when I have the entire clinic to myself.

There are negatives to the treatment regimen. It’s an infusion drug, so for three to six hours each week I’m sitting in the clinic with an IV in my arm. After the first nine weeks, the treatment will go to bi-weekly, and after six months it becomes monthly, so it does get better.

Any time you have an IV inserted there can be some pain involved but it’s minor relative to the benefits of the treatment. The worst part, for me, is the grand finale, in which the tape is ripped from my arm. I’m pretty hairy and tape is not my friend.

Here’s a little story that I find really funny. My wife and I went to a Thai restaurant once. The waiter looked at me, looked at my arm, said “Fur!” and started petting me. I’d never been petted before, so it was strange, but it was also hilarious. I guess you had to be there.

The two worst parts of the infusion process- the placement of the needle and the removal of the tape afterwards.

The biggest negative, to me, is that due to the large amount of steroids they give me to fight off any adverse effects during the infusion, I can’t sleep. It usually lasts just the one night and, again, it’s a small price to pay relative to the benefits.

The last negative is that around three days after the treatment I feel terrible. I kind of see it as a war going on inside my body between the good proteins and the bad proteins, and I suspect it’s related to the body count of the bad proteins as the good proteins attack and kill the bad guys. Since I usually feel bad for around a day, I can live with that. Go good proteins!

I’ve been through four weekly treatment sessions so far and the initial results are promising. After the first two weeks my M-Spike, which is basically the bad protein level, dropped about 30 percent. That’s a significant decrease and one that gives me hope. My hope is that the downward trend in the protein count continues and that we can postpone a second stem cell transplant, which is a possibility, for as long as possible.

So that’s why I’ve fallen behind in my posts but I will try to keep it updated. Thanks for following and have a great day.

There comes a time when we begin to realize we’re not immortal. For me, that was when I was diagnosed with multiple myeloma.

Multiple Myeloma is a cancer of the blood where a certain protein becomes cancerous and then clones itself over and over, eventually forming tumors in the bone marrow. There have been several new drugs and treatments introduced over the last few years which have extended the life expectancy of patients, but there is no cure.

I had known for years that I could eventually develop the disease. I’d had smouldering myeloma, it’s precursor, for a decade. There’s about a fifty percent chance that the cancer would progress from the smouldering phase to the active phase within the first ten years, so I was right on schedule. I was still shocked by the diagnosis, though. After ten years of nothing I figured I was in the clear.

The average life expectancy of someone with multiple myeloma is three to five years, although with recent advances many people are now expected to live many years longer. I’m nearing six and my protein levels are still pretty low, although lately they’ve begun to climb again. I consider that pretty good.

I’ve been lucky. As the disease progresses, tumors develop in your bones and spontaneous fractures can occur. So far the disease has not damaged my bones.

I underwent a stem cell transplant in 2013. Sometimes the stem cell transplant doesn’t work. Mine did, and I was home two weeks after my stem cell transplant. There were a couple guys who’s first stem cell transplant didn’t take and were into their second transplant. I was out of work for six weeks, post-transplant, the minimum required, then returned to work full time. A work acquaintance who had the same disease, underwent a stem cell transplant one week before me and even had the same oncologist returned to work part time and then retired a year later. So, yes, I’ve been lucky.

There have been some positives. I’ve lost a little weight, so I’m right where I should be as far as BMI. My wife and I eat a lot better than before, with a lot of vegetables and organic foods. I’ve cut out sodas and most processed sugars. We’re working on staying healthy.

Don’t get me wrong. Having cancer sucks. I’m always tired. I can’t spend a lot of time in the sun because skin cancer is a real possibility. The chemotherapy drugs have some pretty maddening side effects, and that’s always a concern.

Then there are the costs associated with monitoring the disease. So far, I’ve had three bone marrow biopsies, a stem cell transplant and I’ve been on chemotherapy of one sort or another for six years. The chemo drugs are around $200,000 per year. Doctor’s appointments and full blood panels have to be done every three months, and they aren’t cheap, either. I blew past the million dollar lifetime insurance cap that existed before Obamacare within four years of my transplant.

These days depression is an issue. Multiple myeloma is never cured; the best you can hope for is a reduction in the protein levels to keep the disease at bay. You live in constant fear that the disease will suddenly start growing again, that the chemotherapy drugs will stop working or that the treatment will become too expensive.

For years I worried about insurance because I now had a pre-existing condition. After Obamacare I had to worry that the GOP would repeal the law. Now I worry that they’ll simply roll back the lifetime cap or the pre-existing condition protection and I’ll have no insurance. There’s plenty to be depressed about. ABMT Clinic 2

Because my protein levels are once again climbing, I had an appointment with my oncologist to discuss future treatment. There are several new drug therapies that we can use, but before we can decide on which one to go with I have to undergo another bone marrow biopsy. I’m not looking forward to it. I’ve had three already and I can honestly say it’s probably the most painful thing I’ve ever experienced. But it is what it is.

So for now, I’m kind of up in the air, waiting to see what the future holds for me.

Tag: Multiple Myeloma

Change is Good

Me and My (Cancerous) Shadow

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