[Cerberus]

My journey to multiple myeloma

by Cerberus on Tue Oct 14, 2014 1:17 pm

My name is Martin Echols, and I was diagnosed with a solitary plasmacytoma in 2010. I had been laid off earlier in the year from a job I had had for 13 years.

I had seen my doctor because of continued and increasing pain in my neck. After some muscle relaxants and an X-ray, I was sent to a local hospital for an MRI. By now I was temporarily working for the 2010 census; I left work and went to the hospital. After about 30 minutes of MRIing, a technician came in and shot me up (I have always hated needles) with a contrast agent (I had no clue why though).

When the MRI process was completed, a doctor met me in the hall and said that I should not go home. Instead I should go to a hospital (the irony appeared to be lost on him, this is a hospital). This was pretty scary, and they didn't really say why. I had to call my wife to come to the hospital, not a great phone call. They said that I had a lytic lesion on my second cervical vertebra and that I should go immediately to a major hospital for evaluation. They put me in an ambulance, and I was off to Philadelphia.

In my own defense, I hadn't eaten anything since a light lunch, and it was by now 11 pm. But the truth is that I hate needles (did I mention that?). So after the folks in the emergency room had put a few in me and wheeled me over to an X-Ray machine and asked me to stand up, I couldn't respond. When the tech asked me if I was alright, I vaguely remember saying 'I don't think so' before keeling head first onto the floor.

I woke up back in the ER, now bristling like a porcupine. There had been consternation in the ranks of the ER, the room was full of lab-coated people, and my wife was nowhere to be seen (they had ejected her to make room for everybody else).

Things eventually calmed down, and I was sent to a room in the cardiac wing for observation. So after a few CT scans, they did a biopsy of the lesion and came back with the diagnosis of solitary plasmacytoma. Obviously, neither myself nor my wife knew what that was, but the 'oma' at the end said a lot. I had cancer. I went through the normal shock process before getting down to what we should do about it.

Next thing I know I am in the radiation wing of the hospital with a group of other people getting radiation treatments for various tumors. I had a mask created to hold my head correctly each time (took a couple of days). I went every day for 28 days, and got to know the other patients and technicians there during my visits.

On the second to last day of treatment, the radiation technician said good bye to me and wished me good luck. I assumed the tech was off for the next day. Except when I showed up the next day for my last appointment, the tech was there. While I was mildly surprised, the tech looked deeply shocked. It turned out that the tech had thought yesterday was my last day, and consequently had disposed of the mask. Consternation again, the head of radiology comes down and we go through a 3-hour process of drawing dots all over my neck and having me lie perfectly still for about 15 minutes. I don't know if that last dose actually got to where it was supposed to be.

I started with a hematology oncologist, and he thought the blood test results were promising. The M-Spike was very low, and the light chains were in normal ranges. At that point, I found a new job on Long Island, NY. So I started with Sloan Kettering on Long Island and a new oncologist.

The M-Spike stayed stable for the following 2 years with regular follow-ups every three months (like a roll of the dice every three months). By then, the oncologist said that I most likely had a pre-multiple myeloma condition, not solitary plasmacytoma. I guess I saw that coming.

Then the oncologist left the practice. I ended up going to Sloan Kettering in Manhattan (usually a two-hour drive). At about this same time, I went to a neurosurgeon for a re-evaluation of my cervical vertebra. The doctor had an MRI done, and when I met him next, he was looking grim. He said that I needed to have all of my cervical vertebra and my skull fused together with a bunch of metal rods and screws. I got a few second opinions, and in the end had cement injected into the hollowed out second vertebra. Ultimately this was probably a bad idea, the surgeon did not do exactly what he had said he would. C'est la vie. Another surgeon said that we can still stuff rods in it later on. What a relief.

By now I had lost my job on Long Island as the company was sold. I moved to Harrisburg, PA, to live with relatives while figuring out what to do next. We continued to go to NY for oncologist checkups, but now it was a three and a half hour drive, and for some reason, they always gave me a 7:30 am or 8:00 am appointment, even though we are setting it up a month in advance.

Next the lambda light chain concentration began rising consistently with each visit. Then the M-Spike began to follow. The numbers weren't high, 0.6 mg/dL M-Spike and 1,100 mg/dL light chains, but it was the trend. So my oncologist recommended starting me on Revlimid and dex.

Up until now, the whole multiple myeloma thing was sort of theoretical for me. Aside from the now 4-year old injury to my neck, I hadn't had any cancer-related problems. Now it was getting serious.

After three cycles on Rev/dex, it looks like the M-Spike is not responding. At this point, I am on a fourth cycle of Rev/dex with the addition of an antibiotic. I will be having stem cells collected next month.

It has been a long 4 years. I am thankful for my wife who has helped me along the way with physical and moral support.

[DallasGG]

Re: My journey to multiple myeloma

by DallasGG on Tue Oct 14, 2014 4:14 pm

Martin, sorry to hear about your multiple myeloma and your path to where you are now.

I was curious. Was there a reason that they didn't include Velcade (bortezomib) with your Revlimid and dex treatments? It seems fairly common these days to do early treatment with all 3 drugs (Velcade / Revlimid / dex) or other combinations of drugs. But I'm not a doctor and don't know the exact reasons why certain drugs are given during early treatments to each patient.

I had 5 cycles of VRD (Velcade / Revlimid / dex) after I was diagnosed, which brought my m-spike down to zero from 4.0 g/dl initially. After a SCT in February 2014, I'm now on maintenance of Revlimid / dex. Some people go on maintenance of Velcade.

Good luck to you with your stem cell harvest and stem cell transplant when / if you eventually do that.

[Cerberus]

Re: My journey to multiple myeloma

by Cerberus on Wed Oct 15, 2014 1:41 pm

Hi DallasGG,

Not sure why we didn't start with Velcade.

My situation is a little different in that I don't have all the symptoms of multiple myeloma, but after 4 years and the now increasing M-Spike, which is just 0.4g/dl, we decided to start doing something.

After 3 cycles, it looks like the M-Spike is not going to come down any more so we were going to add Velcade.

But on reading about it, I found that previous bouts of shingles is a problem so we decided to add clarithromysin, an antibiotic that has been studied with multiple myeloma. Also an antiviral.

Will find out on 8/29/14 whether the new combination does anything.