Carlos’ Stage 2 Light Chain Multiple Myeloma Story

Carlos shares his stage 2 light chain multiple myeloma story and undergoing major back surgery, induction therapy, stem cell transplant and maintenance chemo.

In his story, Carlos highlights dealing with losing his hair, the approach with fertility preservation, the impact of the cancer diagnosis on his marriage, and how he turned to natural, holistic approaches to help strengthen his health.

---

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

---

Multiple Myeloma Diagnosis

What were your first symptoms?

It all started with back pain. I had just turned 40, so I thought I was just getting older.

What made you go to the doctor?

One day, I was helping a friend move a TV, and I got a really bad back spasm. That’s the reason I ended up going to the doctor in the spring. I’m the typical guy that doesn’t go to the doctor unless it’s really urgent or necessary.

The doctor did an X-ray first and gave me some muscle relaxers. It helped for about a month. The pain came back, and I went to a specialist.

Getting scans

The orthopedic specialist ordered another set of X-rays and some steroids. In November, we traveled to New York for vacation, and something changed. A lump appeared in my upper back that increased the pain, so as soon as we returned to Miami, I went to the doctor again. 

He scheduled an MRI, but by then it was early December. Because of insurance deductibles and the holidays, I decided to wait. In January, I was at the gym one day and lost complete strength in my left arm. I ended up finding a place that did stand-up MRIs because I couldn’t lay down on my back. 

This was a Thursday, and the following day, the doctor called me and said he scheduled an appointment with a neurosurgeon for Monday.

Describe the standing MRI

It wasn’t as easy as I thought it would be. You don’t stand during the whole thing. You sit down in a very narrow seat. I actually couldn’t get through it on the first try because of the pain in my back.

The machine started scanning. I couldn’t sit still because of the pain, so I asked them to stop and ran out to my car to spray Biofreeze on the area.

I was able to go ahead with the MRI after this. Usually, people that do MRIs aren’t allowed to say anything to you, but she looked at me and asked multiple times, “Were you in an accident?”

I responded, “No.” I had no idea what was going on until Monday when I went to see the neurosurgeon and got to look at my scans.

What tests did they run at the ER?

If I would’ve fallen, I could have ended up paraplegic because my head was being held up only by the surrounding tumor. Half of my T1 and T2 were gone, so they put a neck brace on me immediately.

They performed some tests that day, but since I required surgery, they moved me to a room. For a week, they continued with multiple blood tests, X-rays, PET scan, CT scan and 2 bone marrow biopsies.

»MORE: Dealing with scanxiety and waiting for results

Describe the bone marrow biopsy

It’s a simple procedure.

You go into what’s just kind of like an office in the hospital. They apply local anesthesia, and it just feels like a shot in your back. It wasn’t super painful.

For about 24 hours after, it hurt me to walk, but that’s about it. I have a high pain tolerance, so I don’t know if it’s that way for everyone.

It’s obviously not enjoyable, but it’s really not bad. It wasn’t for me anyway. I don’t really mind needles, but for people who have a problem with them, I can see how it could be a nightmare.

How did you get the official diagnosis?

They had done a bone marrow biopsy before the surgery and also took some of the tumor that was removed for a biopsy. The results didn’t come in until about a week and a half after surgery.

They chose the subtle way of telling me by having three doctors with ‘Miami Cancer Institute’ on their coats. I already kind of suspected it, but that’s how they told me.

Surgery and Recovery

What do you remember heading into the back surgery?

I’m normally an anxious person, but the doctor was very comforting. Her presence and the way she handled everything gave me a lot of peace of mind.

It was like being a baby. The physical therapy did help a lot. It was intense.

It was like 3 hours a day. They were teaching me to walk again. They wanted to make sure I could walk up stairs since I lived in a 2-floor home.

The brace they put me in after surgery was on half my body. I had to wear it 24 hours a day except for when I was showering. It was rough. The brace didn’t come off for 3 months.

I couldn’t drive. I had to be very careful. I had to sleep on my back. I didn’t have a lot of pain, but I did have a lot of muscle soreness.

Induction Therapy

Describe the first visit with the oncologist

After physical therapy, they sent me home. The next day, I had my first visit with the oncologist. He tried to explain as much as he could about multiple myeloma and the treatment he planned for me to go through. About 2 weeks later, I started chemotherapy.

What side effects did you have from chemo?

I had a lot of different side effects. Besides taking the chemo medication, I was also taking muscle relaxers and pain relievers. The side effects we varied.

The steroid obviously caused some trouble sleeping. My pain reliever was giving me blurry vision. At one time, I got really anxious because I was just sitting at the dinner table and lost the vision in my right eye completely. I was having a lot of anxiety. Muscle relaxers, when you use them for a while, can cause that. 

I didn’t have much nausea. Supposedly, the benefit of taking the steroid is helping with the nausea. I definitely had some chemo brain.

I experienced a lot of confusion and forgetfulness, and I had this sensation that I was wearing a helmet all the time.

I had some intestinal pain. A side effect that I would get the day after my Velcade was the hiccups. The first time I got them, I tried the usual known remedies like holding my breath and drinking water quickly.

What helped you with your side effects?

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

In addition, I do intermittent fasting. That’s when I eat 2 times a day, once at 1 p.m. and once at 7 p.m., which I read helps 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. 

In general, it really did help. Eating well and exercising, even if it was just a little bit every single day, was a big deal.

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.

»MORE: Cancer patients share their treatment side effects

Did you work during chemo?

I don’t think I should have, but I did. The whole situation with the insurance and short-term disability is not a smooth process.

Requesting extensions was such a mission, and I was always afraid that I would lose my job.

When I came back after my 3 months of disability, I couldn’t remember anything I used to do because of the chemo brain.

»MORE: Learn more about chemo brain

I didn’t really notice it at the time, but later on when I was absent from work again for 3 months (after the stem cell transplant), I returned and remembered how to do everything. It wasn’t until then that I realized just how much all the medications had affected me.

»MORE: Read more on how others dealt with work after a cancer diagnosis

What happened after you finished your chemo?

After my fourth cycle, they performed the typical blood tests. My cancer indicators were all normal, and they declared me in remission. They also completed another bone marrow biopsy, and the result was 1%. I started with 18%.

I thought they would stop the chemo at this point, but they continued the cycles at a lower dosage for 4 more cycles, they stopped about 1 month before my stem cell transplant.

How did you feel when you got the news about remission?

I was ecstatic with the news, and the very first thing I did was call my wife and let her know. She was so happy to hear that everything we had done worked and that I was going to be okay.

I was also excited because I thought I would be done with chemotherapy, but to my disappointment it had to be continued until transplant.

In the end, you go through the stem cell transplant, and they have no idea if it’s going to work, how it’s going to work, or for how long it’s going to work. It’s kind of like magic.

I know cases where people had a relapse within months of the transplant, as there are patients that stayed in remission above 5 years.

They do this big thing to your body and don’t know what to expect. It’s hard to believe in magic when it’s supposed to be science.

Describe the stem cell transplant prep

After reaching remission, they continued the same RVD regimen, just in lower doses. There are many tests they perform pre-transplant. They test your lungs, your heart, and even perform a psychological test.

About 2 weeks before the transplant, they placed a catheter port on me. I found this to be one of the worst experiences. They inject you with local anesthesia, but you still feel a lot of the procedure. It made me really nervous having it so close to my heart.

When I showered, I had to be sure to cover it correctly. I couldn’t get it wet. It was just stressful. You have to really take care of it to make sure you don’t get any kind of infection. 

Harvesting stem cells

The next step was to harvest the stem cells. Two days before that, they give you a shot to make the cells come out from your bone marrow into your blood so they can harvest them. 

This process went smoothly. They take enough for 2 transplants just in case. It took about 6 or 7 hours of being hooked up to the machine.

How was the actual transplant?

I checked in on a Thursday and left 2 weeks later. The same day I checked in, they gave me the high dosage chemo called melphalan.

During the infusion, you have to chew ice. This is to avoid the development of mouth sores, so I chewed away for about 2 hours.

The following day, they returned my stem cells. This is the day they call your “re-birth” since your immune system is practically starting from zero. They said some people might get a reaction, but I didn’t have anything like that. I was very comfortable. 

Something that the doctor didn’t mention before the transplant was that I would have to be connected to an IV pole 24/7, which made moving around and sleeping completely uncomfortable. It dripped potassium and magnesium. 

It is important to develop a routine when in the hospital for a long period of time, to shower and do exercise. You have to remember that you are in recovery, not on vacation.

»MORE: Learn more about bone marrow transplants from a specialist

Next steps after stem cell transplant recovery

The final blood check was at about the 99th day, which was right before my parents’ 50th anniversary celebration in December, so it was perfect timing. They checked my white blood cell count to see if I could fight off basic colds and infections, and they gave me the green light to start living a more normal life. 

Then in January, we started the maintenance therapy, which I must continue indefinitely for now.

It’s 10 mg of Revlimid every day for 3 weeks with 1 week off. At the beginning, I experienced tiredness and itchy scalp and skin, so I started taking Benadryl too.

Since this is a cancer with no cure, this maintenance helps extend your remission time. I visit my oncologist every 3 months to look at my blood tests. I am hoping the cancer stays away for a long time.

I don’t think it was as bad for me as it would be for a woman or a child. It’s definitely an additional thing to deal with though. 

I didn’t like being hairless because no matter how I felt, I would look at myself in the mirror and think, ‘Yeah, I have cancer.’ I looked like I had cancer. It’s a reminder constantly. 

It wasn’t really a confidence thing for me, but it was hard to look sick all the time. I don’t care what people think about how I look.

»MORE: Dealing with hair loss during cancer treatment

Did fertility preservation come up?

During my first talk with the oncologist, he mentioned fertility and the dangers of chemotherapy and trying to have a baby. I’m 42, and my wife is 36. We don’t have children. 

He offered to reach out to someone in the hospital to put some sperm into a bank for me. There weren’t any days available until the same day I had to start my chemo regimen. 

I had my first chemo scheduled at around 11:00 a.m. in the morning, and the only time the fertility people had available was 8:00 a.m. the same day. That was nerve-wracking, but it was accomplished, and they’re frozen somewhere just in case. 

»MORE: Fertility preservation and cancer treatment

I do suggest that you look for a therapist to work through the whole process together.

That support is so important. There are things that you go through that only someone else who has gone through this or a professional can really understand. 

Finding your cancer community

Connecting with other cancer survivors was extremely helpful. After all, only other cancer patients really understand what we go through physically and mentally. 

We would bounce ideas off of each other, share what our doctors were saying, and just get support. I met some really amazing warriors.

Music was another important support for me during my journey.  When I needed to relax, I would listen to Bob Marley’s “Legend,” and one of my favorite’s songs, “Three Little Birds.” That song would transport me to a beautiful beach in Brazil and bring me peace.

What is your “new normal” after cancer?

Now, everything is a lot more short-term than it was before. There’s no 5-year project or plan. Everything is planned out by 1 year at most. It’s a lot more about doing what we enjoy the most as often as possible, whether it’s a walk, traveling, eating out or just being together watching a movie.

I’m still very optimistic. I live as though I don’t have anything wrong with me and never did. Even though I do have certain pains, I just ride it out and enjoy life as much as I can.

Keep an open mind about it, that’s all. There are a lot of people that will talk to you about cancer remedies. Any time someone asks me about this, I say the same thing:

‘I don’t believe there are any natural remedies that will cure your cancer, but I believe there are natural remedies that can cure your side effects.’

---

---

Multiple Myeloma Stories