I was taking 25mg orally of Revlimid (chemo) every day, and I was getting 40mg of dexamethasone (steroid) on the first day and 4mg the second day. I did all that from February to June. I stopped when they were happy with the way the numbers were moving to have a kyphoplasty. We squeezed that in and moved right into the stem cell transplant in July.

I had a lot of hypotension, which was the opposite of what we thought was going to happen. I had some minor diarrhea.

I think the myeloma causes all my nausea. I had nausea, but I don’t think it was the drugs. 

Scott C. (Multiple Myeloma, IgG Lambda, Heavy Chain, Stage 3)

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The immunotherapy drug is called Revlimid. It’s a common drug in the myeloma community. It was a kind of mainstream at the time. I’m not sure which side effects it caused because I was on two other drugs, but I know that typically, it can cause some GI issues as well as fatigue and neuropathy. 

I did experience all of those, but I don’t know if that was from just the Revlimid or the other drugs too. 

All the drugs I was on except the steroid can cause neuropathy. That was a huge thing for me. It’s tough when you’re going through any kind of treatment because fatigue and nausea are huge side effects you have to battle. I had a lot of GI issues. 

Exercise was something that I’ve always done, thank goodness. Going into treatment, it wasn’t as hard for me to do it. I would just walk a lot. 

Melissa V. (Multiple Myeloma, Active Myeloma Stage 3)

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The first week I was on Revlimid, Valtrex, and Dexamethasone. That was at the first hospital.

I remember that the Revlimid made me feel a little sick and very tired. The Darzalex made me feel really hot about 30 minutes after they started the infusion. I had a bit of a fever, and I kind of lost consciousness for a bit.

Jude A. (Multiple Myeloma, Stage 3, Surgery & Chemotherapy)

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The doctor chose RVD, or Revlimid, Velcade and dexamethasone. That’s immunotherapy, targeted therapy, and one steroid.

In total I went through eight cycles but reached remission after four. Thankfully, the medication did what it needed to do pretty quickly. Once I went into remission, they lowered the doses as they prepared me for a stem cell transplant.

The Revlimid is a pill. I was taking it every day for three weeks and taking a week off. Velcade was two times a week for two weeks and two weeks off.

I am a firm believer in eating well and by that I mean eating for nutrition. Lots of organic vegetables, eggs, green juices, along with some fruits.

In addition, I do intermittent fasting. That’s when I eat two times a day, once at 1 pm and once at 7pm, [which I read] help your cells clean out damaged cells, a process called autophagy.

Apple cider vinegar really helped me with any intestinal issues or heartburn. I took all types of different teas. I was already on enough pills, so I gave the alternative medicine thing a try. 

I would go outside and walk to get some vitamin D, which is extremely important for your bones and immune system. I believe all those things really helped to not feel as much from the side effects.

Carlos C. (Multiple Myeloma, Light Chain, Stage 2)

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I’m still taking chemo three days a week. I take a drug called Revlimid. I take a low dose of Prednisone every day.

For the last year and a half, my numbers have been good. I’ve felt great. I walk three miles a day. I don’t know that you ever get back to normal, but I’m doing well. I’ll just be doing this indefinitely unless it stops working

The Revlimid gives me some fatigue, but I tolerate the Darzalex pretty well. It’s expensive treatment, but I’ve been so fortunate.

I’m involved with some patient finance programs. I have some co-pay assistance. Since the first inpatient treatment, I haven’t been able to work. 

Clay D. (Multiple Myeloma, Relapsed/Refractory, Chemo, Radiation, Transplant, Targeted Therapy, Immunotherapy)

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