Family Bonds Help Patient Fight Multiple Myeloma

The pain in his back became overwhelming, but Michael Tuohy didn’t think it was anything serious. He certainly never imagined the pain would eventually lead him to a diagnosis of multiple myeloma.

“I was 36 at the time and I let it go for months and months. I got to the point where the pain was unbearable, I couldn’t stand it anymore,” Tuohy said.

When he went to see an orthopedic doctor, Tuohy’s physician decided to send him for X-rays followed by therapy, despite not knowing what the cause of the pain was.

“I left that meeting thinking, ‘why are you sending me for therapy? You don’t even know what’s wrong with me,’” Tuohy said.

He then decided to get a second opinion from an orthopedic doctor who ended up not liking the way his legs felt when he moved them.

“He sent me for an MRI," Tuohy said. "Low and behold, the next day I got a call saying I had a tumor in my sacrum. Basically it all started there.”

Since the Connecticut resident was just 36-years-old at the time, multiple myeloma wasn’t even on his radar. The disease typically affects patients who are 60 years and older, and his doctors believed that his tumor just needed to be surgically removed.

After the results of a biopsy showed that he had cancer, Tuohy was sent to New York Presbyterian, which has a myeloma center.

“I was devastated,” Tuohy said. “For one, I didn’t know what myeloma was. I didn’t know what the disease was — it’s the first time I had ever heard it mentioned – but I knew that it was cancer.

“I knew it was treatable at the time, but there wasn’t a heck of a lot of treatment options back then ---this was 15 years ago. We were just devastated, my wife and I. My children were very young, so we didn’t really discuss it with them in the beginning. But basically, I was worried I was going to die.”

Multiple myeloma is a cancer that forms in the plasma cells, which are responsible for making antibodies that attack germs and help fight infections. Myeloma allows cancer cells to assemble in the bone marrow, crowding out the healthy blood cells and producing abnormal and toxic proteins.

Tuohy’s diagnosis wasn’t always easy for his family. When he was diagnosed, he had 2 children under the age of 10 and he and his wife decided originally that they wouldn’t tell them.

“I didn’t tell them right away, and we didn’t call it cancer in the beginning,” Tuohy said. “My dad had died from lung cancer years before and my daughter had known that, so we didn’t want to scare her. My daughter was 7 and my son was 3, so they were very young. My daughter kind of knew something was wrong.”

When a patient is diagnosed, it can be difficult for both them and their family. Sometimes a patient can become withdrawn and the disease can take a toll on relationships.

However, Tuohy found comfort and peace through being with his family.

“It definitely brought us closer without a doubt because at that point I didn’t really know what was going on, I just knew I had cancer,” Tuohy said. “At night, the best part of the day was sitting with my kids and my wife and we would watch Scooby-Doo as a family. I just wanted to be with my family because I was scared to death.

“My daughter has told us since that it’s not good to keep things from kids because they could possibly be thinking worse of what’s really going on. So ever since that we’ve been pretty much up front about everything.”

People cope in all sorts of ways, but for Tuohy, his religion and his family were what helped the most.

“My wife is the ultimate caregiver, she’s amazing,” Tuohy said. “She stayed with me the whole time I had my transplant and I was grateful for that. She monitored everything that went into me, she checked everything. It’s great to have an advocate on your side.”

Tuohy’s employer was also understanding about his condition, and would let him take what the company deemed as mental health days.

“Before I was getting ready for my transplant, they would let me take days here and there,” Tuohy remembered. “We would go do stuff with the kids, like go to the movies and do a fun day with just the 4 of us. That meant a lot.”

Shortly after his diagnosis, Tuohy had to make some changes to his lifestyle. He couldn’t run or horse around with his kids, and he had to cut back on a lot of physical and strenuous activities.

“The tumor destroyed my sacrum by two-thirds and it was a point where I had to worry about the sacrum maybe collapsing,” Tuohy said.

Later in 2005, Tuohy would go for surgery to try and stabilize the problem.

“I definitely had to cut back on my lifestyle as far as doing anything really physical because you have to worry about your bones,” Tuohy said. “Myeloma, it’s kind of strange, when it’s active it eats your bones from the inside out and an X-ray doesn’t show the damage until it’s basically too late.”

The physician’s plan was to first give him a low dose of radiation to try and shrink the tumors and alleviate some of his pain, followed by the harvesting of his stem cells. This would be done before he was given high dose radiation, because it compromises stem cells.

Although this proved to be successful in killing the tumor, Tuohy shortly ran into some complications. For the next year, caregivers kept a close eye on his health, but after a year and a half, Tuohy started breaking bones.

“I was breaking ribs,” Tuohy said. “I’d sneeze and I’d break a rib, I’d cough and I’d break a rib. The disease was coming back.”

Tuohy became a non-secretor, which is when your numbers don’t accurately reflect what is going on in your body.

“They take my blood and everything says it’s okay -- my levels — everything was fine but it’s really not,” he noted. “The disease was up and gone, but I was breaking ribs. I broke like 5 ribs in the span of maybe a month or 2.”

Since Tuohy was breaking bones frequently, his physician decided it was time to go ahead and do a stem cell transplant.

In order to prep for the transplant, Tuohy was given dexamethasone, a high-dose steroid, for 6 months. He was given 40 milligrams for 4 days on and 4 days off, then the process would start over again.

“When I was pretreated for my surgery, I went on high-dose dexamethasone and I had a really difficult time with that, especially in the beginning,” Tuohy said. “I was almost bed ridden the first couple days after I started it.”

In 2002, approximately 2 years after his diagnosis, Tuohy received an autologous stem cell transplant.

Unfortunately, Tuohy’s reaction to the transplant process was extremely difficult.

“When you’re doing a transplant, they give you a high-dose chemotherapy,” Tuohy said. “It not only kills the myeloma, but it kills the good cells too; it kills everything. So that’s why the rescue happens where they insert your stem cells back into you. They’re like baby stem cells that latch onto your marrow. When they grow, that’s basically your new system growing back.”

When Tuohy received antibiotics, he developed a high grade fever and a full body rash.

“I had a 106 fever for about 4 or 5 days on and off,” he said. “Eventually, they pulled the antibiotics away and just had to take a chance I guess. I couldn’t keep going on like that, I was hallucinating -- it was awful.

“When they pulled all the antibiotics away, my stem cells kind of kicked in at the same time and I started feeling better again. I was on my way coming back. But it was a little touch and go there for a little bit because of my reaction to the antibiotics.”

Tuohy noted that keeping a good attitude about his situation was something that helped him through this difficult journey.

“I tried to keep a positive attitude from the beginning,” Tuohy said. “I didn’t want to mope around and let my kids think I’m depressed. It’s a lot to go through, but I did try to stay positive as much as I could. I prayed every day that something would happen to put me into remission.

“In the beginning I didn’t know. I’d look out the back window and think ‘Am I going to be here next year?’ It’s pretty heavy stuff when you start thinking about it.”

Tuohy went into remission from the transplant for 3 years, but in 2005 his cancer came back again.

There was talk of either doing another transplant or trying a new drug called lenalidomide (Revlimid), which was in the expanded access program of a clinical trial.

Expanded access is when an investigational drug is used outside of a clinical trial by patients who either don’t meet enrollment criteria or the trial is already in progress.

“We all decided after the experience I had last time with the antibiotics, I really wasn’t going to do another transplant,” Tuohy said. “To go home the next day and just start taking the pill is a lot less involved than rearranging your life to do a transplant. Although I got a 3-year remission from the transplant and I’m grateful, taking the drug was a much easier root to go for me because of my allergies.”

Tuohy believes he took Revlimid for 2 months on the expanded access program before it was approved by the FDA. He has been on it since 2005 and is currently in complete remission.

Although he had some trepidations about trying Revlimid, his main concern was that he had cancer recurrence.

“I was nervous, but most of all I was scared that the disease came back,” Tuohy said. “It was coming back big time.”

Being able to have this kind of success with Revlimid is something Tuohy says he is grateful for.

“It’s been great to have a chance at a life again, it’s going to remission, and it’s kind of like living with a time bomb,” he said. “The disease is treatable, but it’s not curable yet. I’ve been very fortunate that this drug that I’ve been on for 10 years has kept my disease in check. I’m truly grateful for that, because everybody’s different -- drugs work differently for different people.”

Tuohy said Revlimid has carried few side effects during his treatment. Although he did experience a blood clot in the beginning that is fairly common, it was able to be taken care of quickly by going on blood thinners.

“For me, it’s a drug that I take without really feeling like I’m taking anything,” Tuohy said. “Some drugs have really bad side effects. The only thing that happened to me was the blood clot and once I got that squared away I haven’t have any issues at all.”

Tuohy stresses that everyone is different and some will experience different side effects.

“All drugs have side effects, whether they’re big or small. There’s always something that you have to be careful about,” Tuohy said.

When he was first diagnosed, Tuohy was prescribed pamidronate (Aredia), which is a bone strengthener that myeloma patients typically receive. It is a 4-hour infusion that he would get once a month.

“I had so much damage to my bones, it’s almost like repaving roads. This is how it works for your bones,” Tuohy said. “The first time I got it, I had a reaction to it. I got a fever and I developed phlebitis, weird stuff. I had someone tell me it was because of my age. I was younger at the time and my body is fighting it, so who knows. But it’s a hard thing to really foresee because you don’t know what kind of side effects you’re going to run across.”

Tuohy has been using mail order pharmacies and has had a mostly positive experience. When the doctor sends the prescription for Revlimid in, Tuohy has to call and do a consult with the pharmacy, as well as the manufacturer of the drug.

“You call up, you spend a couple minutes doing a survey for legal rights, and then the drug is delivered on the day they say it is coming,” Tuohy said. “It’s very easy.”

The reason patients have do go through a consult is because Revlimid is derivative of thalidomide, which was used in the 1950s and 1960s to treat pregnant women with morning sickness. However, the drug was catastrophic and led to severe birth defects, such as malformed limbs.

“That was basically the biggest topic that they want to cover,” Tuohy said. “To protect birth defects and to protect other people. Also things like don’t share the drug, don’t go and give blood, which I’m not going to do. They are things I wouldn’t do because it’s common sense, but for legal rights they have to protect themselves.”

For patients who are newly diagnosed, Tuohy said it’s important to have a support system in place.

“Someone who is helping you out with anything you need, being your advocate, your voice,” Tuohy said. “The day I checked in for my transplant, it was a blur to me. I don’t even remember it. I was messed up mentally.”

Tuohy and his family have been heavily involved in advocacy work for multiple myeloma. They first started working with the International Myeloma Foundation (IMF) after his wife received a phone call, shortly after he was diagnosed.

During this time, Geraldine Ferraro had come out and told the world that she had multiple myeloma. In response, there was a lot going on in Washington DC, including blood cancer hearings. The IMF asked patients to write and submit letters to congressmen or senators to help support multiple myeloma.

The letter written by Tuohy’s wife cause the attention of IMF President Susie Novis, who asked them to travel with the foundation to Washington DC to help spread awareness.

This was the first time Tuohy met other myeloma patients, and it had such a large impact in fueling the thirst to try and help others.

“It really moved us and made us want to do more,” he said.

The Tuohy’s were asked to join with support group leaders from all over the country to discuss potential avenues to better support patients.

Tuohy helped start the first myeloma support group in Connecticut, which has been in operation for 14 years.

“Our group has changed through the years,” Tuohy said. “Unfortunately, when people get better you lose some. They disappear, which I don’t agree with. When you’re in remission, that’s the time when you could really help another patient that’s coming in that’s scared to death. It’s really gratifying to be able to help other patients. I wish I knew about it when I was going through it, but there wasn’t a support group in Connecticut. But thanks to the IMF there is now.”

Despite that, the IMF has been a tremendous help to the Tuohy family.

“When I was diagnosed, I was scared to death and I didn’t speak to another myeloma patient for at least a year,” Tuohy said. “Once we got the ball rolling starting a support group, I felt we could reach out and help patients who are going through what I went through in the beginning. That’s all the IMF starting that up. My wife now works for the IMF. So they were so instrumental in getting me through this disease and my family. My kids want to help out. If there’s a patient-family seminar, they’ll come and help out as well, because we want to do what we can.”

Starting the support group and continuing to be involved with the IMF is not the only thing the Tuohy family has done.

In 2007, they created the Myeloma Mobile. The idea came to Tuohy while vacationing in the mountains of New Hampshire.

“We were driving home from one of our stays up there. I was just talking to my wife and I said ‘what do people out here who don’t have access to cancer centers or specialists do?’”

From that simple question, the gears started turning in his head and the Myeloma Mobile was born.

The Tuohy’s packed up an RV with all the IMF publications and set out to visit 20 cancer centers across the country, from the East Coast to California, for the entire summer.

Their goal for this cross country trip was to try and create awareness, as well as speaking to patients who have limited access to specialists and publications. His children were also heavily involved, doing interviews and speaking with children of other myeloma patients.

“We had 20 different cancer centers that we had events at,” Tuohy said. “We had to go and speak about what we were doing, what we had hoped to do, get the word out about multiple myeloma, create awareness, and let patients know that you could learn about the disease and where to go.”

Besides visiting all 20 cancer centers, they also helped start up a few support groups throughout the country.

“We would get calls,” Tuohy said. “There was a group in Virginia that was just starting up and he wanted us, if we could, to stop in on our way home -- so we did. We stopped in at a couple support groups like in Michigan, Colorado, wherever we could.”

They even managed to get some local press from the states they were driving through to further their goal of spreading awareness.

“I would do it again in a heartbeat, it was amazing,” Tuohy said. “I was grateful to be able to do something like that, to reach out and help as many patients as we could. It’s really touching to have patients come up and tell you how much they appreciate what you’re doing.”