Living with Multiple Myeloma

It was right around Thanksgiving in 2003 when I hurt my back(so I thought). I’d been lifting many (40) boxes of Life magazines from an estate sale. A few days later I was doing some exercises and felt a weird pop in my back. The next day when I got out of bed I just collapsed. Extremely painful. I managed for a week and then went to see my PCP, but he was out for Christmas so I saw the NP. She basically misdiagnosed me with a strained back. Never ordered x-rays which would have told the story. So I presevered and lived with the pain for a year. Ultimately it did improve but since cancer was the culprit( not that I knew though), a plasmacytoma tumor was developing where the fracture had been( not that I knew it was even a fracture at this point). Eventually, I asked for a referral to a sports doctor to see if a Kyphoplasty surgery would help. This was now 18 months from the original fracture. He ordered the MRI and the rest is history so to speak.

I’m almost 17 years out from that March of 2005. I feel enormously grateful to have lived with this so long and managed. Lots of people don’t get that chance.

My labs are back and show a 1 point increase putting me out of normal range but by very little. 19.7 mg/l , high normal is 19.4 mg/l kappa light chains. So hopefully my increases stay small and we can be ready with a plan once they start jumping exponentially. I get my next labs at the end of December so, we’ll see. i had an increase in the Alpha Globulin as well. Not much but that might mean there is more protein entering the blood stream.

Cancer has taught me to take things in stride and never for granted. Also, each day has its own rhythm and to go with that flow. When you’re getting treatments, there’s no trying to make it go faster or slower, it is what it is and treatments will go according to the schedule. I’m certainly a more patient person because of my cancer treatments. Life is full of uncertainties and all we can do is do the best we can with the time that is given to us.

There’s always some anxiety with labs etc when dealing with cancer but I think knowledge is powerful and helps keep most anxiety at bay. Since I know what’s out there, I handle it better. At some point Velcade will stop working and I’ll be on to the next treatment which would be Darzalex. It is an IV to start and is given over 8 hours to start so that if you’re going to have heart issues they know. I believe after that initial one, it’s a shot like Velcade but I may be wrong. I think most people tolerate Daralex well. Well, that’s all speculation at this point.

5 thoughts on “Living with Multiple Myeloma

  1. As you say, and I can identify with, living with cancer is hard. With the whole Covid issue getting tests and seeing consultants for my Thyroid cancer is almost non-existent. I have been waiting for a CT scan now since April to establish that the lump in my neck is not a return of the Thyroid cancer. I am going for bloods next week – at least they are walk in and no waiting list. Hope you carry on doing well and the Velcade carries on working for you.

      • It is a bit complicated – they can run a thyroglobulin test. This tells them if there are any residual thyroid cells still around producing thyroxin. The snag is they cannot tell if the cells are cancerous or not. In theory I should have no thyroid cells left after having my thyroid removed completely and two radioactive iodine treatments which search out and attach themselves to stray thyroid cells anywhere in the body and hopefully kills them – but it is possible some remain and begin to grow the cancer again. The thyroid medication is kept at a slightly elevated level to normal in cancer patients as this will supress any thyroid cell growth which potentially can become cancerous. If when I have the thyroglobulin test it is raised from the last reading this will alert them to the possibility something is wrong and further investigation will take place.

    • The fracture happened first as a result of myeloma. quite the common side effect. Because the cancer wasn’t detected then a plasmacytoma developed. Then I had after diagnosis 17 rounds of radiation on the back T 10.

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