Listen to Multiple Myeloma Patient Jeff O'Donnell Share His Story

Jeff O’Donnell: Many people have a day of infamy. Mine was September 3, 2003. I was a nursing professor and I had just done my schpeel at New Student Orientation. What I was teaching what my research was, where my office was my office hours. I walked out of the lecture hall and doubled over in pain, lower back pain. I managed to get through that enough to get to my office, get my stuff, get in the car and drive the 10 miles to home and spoke to my wife and said, "I am in really major, major pain. We either need to go to an ER or you need to call our GP." 

Thankfully, we had this amazing GP who said, "Yes, sure, bring him over." That was the start of my wife becoming a caretaker for a myeloma patient. We went to his office. His initial thought, given that it was lower back and a little bit on either side of my spine, "That might be kidneys." He gave me some significant pain meds and that helped things significantly and said, "Here's a kidney specialist, a nephrologist, that you should go see." 

 I did, and got an appointment on an emergency basis the next day, and went, and he said, "Based upon what I'm seeing, it's possible, let's get a scan." We set up a scan for the next day, and I managed to keep dealing with the pain meds and get into a tube for a scan.  

Sure enough, he saw a number of stones in both kidneys Okay. He said, "Let's wait and see what happens over a week to see if you pass them. Here's a wonderful little screen cup for you to pee into to catch them." Nothing happened. At the end of the week, I called him and said, "Sorry, nothing came out and I'm still in significant pain." 

Well, I had not realized what pain could be until he said, kidneys. For the men in the audience, they can understand how that might be a little on the painful side. 

He was able to break up some of the stones. The hope was that in the next week, I would be able to pass that. By this point in time, many people had said to me, "You realize that passing kidney stones for men is not far off from the equivalent pain of a woman giving birth to a child." Then having passed a couple, I was in full agreement with that concept. It was incredibly painful but after the stones were passed, I didn't have any pain relief. I went back to my GP and I said, "No idea why, but I've passed the stones and I am still in a tremendous amount of pain." 

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Jeff O’Donnell: He sent me to a physiatrist who specialize in figuring things out, maybe also rehab and things, another wonderful doc. She finally said, "I don't know what this is based upon what's happening." By that point in time, I had developed enlarged lymph nodes, significantly enlarged lymph nodes and some numbness and tingling in my fingers, my hands, my feet, commonly known as peripheral neuropathies. 

She said, "I'm going to send you back to your GP and suggest he does some blood work." He put together an amazing panel of tests and I went and got the blood drawn. The test came back and, "You may have some cancer, so I'm going to refer you to a really good local oncologist," which he did and she was wonderful.  She said, "Yes, there is no doubt based upon the blood work that you do have a cancer, but it's not a cancer that I'm familiar with. I'm pretty sure that it is a myeloma, a cancer of the bone marrow, but it's a little different. I want you to go see a myeloma specialist." 

We went to the city and saw a world-class myeloma specialist who took a look at what was happening and said, "Okay, there's a bunch of things we need to do." We did a whole new scan. He sent me to an ENT surgeon, ear nose and throat surgeon, who was able to do surgery to take out these really large, like the size of your pinky, lymph nodes and section them, ... He also sent me for a PET scan, a PET-CT scan back then, and that showed some significant uptake in two places that I was having the pain. 

In addition, it showed that I had lesions on 75% of the vertebrae in my back. Between all of that, this was a pretty good explanation to why I was in so much pain, still taking mega-doses of painkillers to the point that I was not really functioning. Thankful that I had a medical background so that I could understand all the things that were being said to me. He sent me to a peripheral neurologist to take a look at what was happening with the neuropathies in my hands. He ordered a large number of blood tests. 

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Jeff: Once that had happened, and all of this took seven months, meanwhile, I'm continuing in pain. We are trying all kinds of different medications to try and deal. Okay, it's nerve pain so we'll go to gabapentin. Well, I was on a dose that almost maxed out the gabapentin without any real success. I was on opiates which dulled everything including myself. 

At this point, I had no option, but to follow what my world-class myeloma specialist was saying, which is, "Okay, we're going to try and knock your load down, your myeloma load down so that we can harvest and then do a stem cell transplant. That's likely the only thing that is going to help. April 2004, I started on thalidomide. After five months, I had knocked the load down as far as it was going to go. I had my cells harvested two, three-hour sessions attached to a machine. 

If somebody's new listening to this, it's a lot like dialysis where they take the blood out and then take out your stem cells and then give you your blood back so that you don't lose a lot of volume. They harvested 21 million stem cells, which are then are frozen until they're used. Once they use them, you go into the hospital, knowing into a very special wing for stem cell transplants. Back then it had this really modern thing in the private room, that was a negative pressure room because you could not afford to get exposed to anything. 

At night, they give you melphalan, a very, very powerful chemotherapy drug that wipes out your bone marrow. Thus, you have incredibly weakened red cells, incredibly weakened white cells and if you get exposed to anything, you will get it. The next morning, you get your stem cells that were harvested, or actually some of them. I have enough for at least three, so two more. Got my stem cells and the first week, you really don't know much because you're just so weak. You're just hanging out in bed. 

After that, you start being able to move around and do things, and the third week, they have you walking around the stem cell unit and you then get to the point where your numbers have come up enough, your red count, your white count that you can go home. You cannot go to any place where there are a lot of people. I find it kind of funny now with all the masking for COVID, we should have done that back then. It would have made life a lot safer for those people who are getting stem cell transplants. 

It took four months to get 90% of the way back to what I was before and that was a good thing 

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Jeff O’Donnell: Let me talk for a second about medical marijuana. He first prescribed 90% THC, 10% CBD cannabinoids. THC is what gets you high. I felt like I was back in the late ‘60s. I said, "This isn't helping because I'm going to eat out of house and home." We shifted it down to 50-50 and I still was getting pretty high off it.  We ended up down at 16% THC, which worked as an anti-anxiety, and 84% CBD, which took care of the pain. That worked really well. 

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Jeff:  She and my New York guy came up with a plan that I would do down here in New York and that put me onto daratumumab, which at that point was an infusion requiring a chunk of IV dexamethasone, it's commonly called Decadron brand name and Benadryl, which is an antihistamine that lots of people take to fall asleep. 

You've got the dex making you wide awake and the Benadryl trying to put you to sleep and they just keep fighting each other; but in the meantime, they prevent the side effects of the daratumumab. Your first dose takes seven hours because they need to be really careful that you don't have any anaphylactic side effects, which I didn't.  

Then the next time it was three hours and the next time it was two and that pretty much wa  as quickly as you could get it. Eventually, I asked, "Can I take the dexamethasone in pill form and the Benadryl and save the hour that it takes to get that?" " 

“Sure."  

That cut me back down, but by that point in time, the daratumumab, which has a known issue of knocking the daylights out of your immune system. 

Then I was getting two hours of the daratumumab plus another three hours of IVIG. In essence, it's immunoglobulins from roughly 100,000 people that are mixed together so that each person's amount in the bag that you get is so small that you're not going to pick up anything from anybody. 

That has managed to keep my immune system I would describe it as half-full. I have half the low end of the normal range of my immune numbers. 

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Jeff: As we go on and when you fit the regimen that the two docs figured out was  daratumamab, the dexamethasone, the Benadryl and also Velcade, bortezomib. After the first treatment with the dara and the Velcade, all of a sudden, I had a sty in my eye and I went to an ophthalmologist who prescribed an antibiotic and warm compresses and did nothing. 

Went back, they tried another antibiotic drops ,nothing. Now, I've got a sty in my other eye. I tried another eye med, steroids, no use. I mentioned it to my New York oncologist who said, you've had your last dose of Velcade. It is an unwritten side effect. It did not come out in the clinical trials, but we have seen patients with sties who were on Velcade and when they go off, sure enough, he said in three weeks, there'll be gone. Three weeks later, they were gone. 

Part of the joys of all the fun things that you get with side effects of medications. Thankfully, after a year, which is the normal protocol, you go on one month of daratumamab once a month and the IVIG. I have been doing that now for close to a year, but  four months ago, five months ago, the company that makes daratumamab got FDA approval to give it sub-Q. 

Everybody gets the same dose, which is different from the infusion, which is based on your weight. It is injected 3 inches from your navel as a subcutaneously, sub-Q, but it's 15 mL's [00:03:00] of fluid, which is a lot to give sub-Q and it has to be given over five minutes. 

 Well, the first time I said to the nurse in the infusion suite, I said, "Talk to the pharmacy and have them split it into two shots, each 7.5 mL's or give or take and then inject on either side of my navel and I won't have this huge amount of fluid in my abdomen." That has worked beautifully. 

Now, that's the way the pharmacy does it for everyone who ends up on what's called FASPRO dara and that has cut two hours down to five minutes and it can be done while I'm getting the IVIG. That I have convinced them to speed up so that I get it over two hours now, because I've never had a reaction to it. I'm down to two hours in the infusion suite once a month. 

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Jeff: I go in and see my New York City myeloma specialist every six months, the pandemic men. I saw him right at the beginning in March of last year. I didn't get to see him until maybe a month ago. Knowing that it had been more than six months since my last PET scan, I went ahead and called and said, "Can you write the order, and I'll have it done before I see you so we'll know what's happening?" We did. 

I went into the city. They have a special radiology suite that does them, and had that done. The positive news is that things are better. There's less sugar uptake. Funny is that they call it SUVs, sugar uptake value. I remember the first time I said it in the support group, "I've got some good SUVs." Somebody said, "Oh, what kind?" At that point in time, PETs were not common. I get a PET once a year now. I'll see my specialist in the city every six months. I get the FASPRO injection once a month locally down in Westchester. 

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Jeff: When I first found out that I had myeloma, the mean survival time was a year and a half. That is now 17 and a half years ago. I've beaten the system so far, but our mantra in the support group is, everybody's myeloma is different. 

Some people have bone pain, some people have kidney issues, some people it's just blood, all different ways that it presents itself and, I obviously have reacted really well to the stem cell transplant, but I know others and including John who had four STEM cell transplants, and it was not as efficacious as mine was. 

There are people that react negatively to one of the various drugs that are commonly given and others who it's a miracle drug for them. Everyone is different with this disease, and that's probably the most important thing that people should know. 

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Jeff: I think that's a really good question. The first week in March, as soon as it became obvious that it was a big issue and that I was hitting five of the high-risk categories. I left Westchester and moved up and for four months I lived in our house up there by myself. Even my wife wasn't not coming up because she did not want to infect me if she had been exposed. Finally, we made a decision for July 4th weekend that the immediate family, myself, my wife, our son, his wife, and our first grandchild, who I had seen pictures of, but never held. 

Our daughter came up from Austin, Texas, where she's at the University of Texas getting a PhD in special ed. She drove up because she didn't want to get on a plane. Four days later, she was there in time and she really wanted to see her nephew. It was a wonderful occasion and we had a great time together. Then, once my wife was there, she stayed. We had two more months of this time together in our upstate house safe, senior hours at the local grocery store 6:00 AM. Fortunately, I'm very much of an early morning person. 

I would see two people and the cashier masked obviously, everybody socially distancing; and in the beginning, wiping down everything I got from the grocery store to make sure it didn't have any COVID on it. I have eventually in September, went back down when things were looking better. Then we had a worry in terms of Thanksgiving. Our daughter, because all her classes at UT were virtual, she just stayed with us because it was a lot safer up here in a rural County in New York than it was in Austin where the governor was not doing any masking. 

She stayed with us through Christmas and August, we all went out to Quincy mass where our son, his wife and our grandson, because their daycare they'd had two employees come down, test positive for COVID. We needed to become the daycare for our grandson while they both worked virtually, which was absolutely wonderful. After Christmas I went down until we saw the surge and I came back up and said, I'll be back when it's time for vaccinations. 

I had my first-- actually, I had both doses in February a little over two weeks ago. I had blood drawn yesterday to see if with half an immune system, whether the vaccines would have worked and with a test that is done under EUA, Emergency Use Authorization from the FDA. It's not a standard test. I did show positive for the antibodies, so I am okay. Next week I will be moving back down to Westchester. I will stay double-masked and socially distanced and washing my hands and sanitizing but we are starting to open up down there. 

I happened to have been the Chair of the Residents' Council that for two years that ended in November and my vice-chair is now the chair and I am his vice-chair.  We're still keeping track of everything. 95% of the residents-plus have been vaccinated, gotten both doses. I'm feeling very safe down there and we'll enjoy being back. 

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Jeff: To me, the IMF means an organization that provides incredibly important information about myeloma, that supports a lot of research worldwide in terms of myeloma. Is an organization that wants to do everything possible to help any person who comes down with myeloma. 

It is an amazing organization that I am very happy to have been involved with for 17 years. If I have a question that I can't answer, I can reach out to their info line, which provides great information if you call in. 

I can call Dr. Durie anytime and say, "Hey, listen, this happened." I’ve done that a few times or seen them at a patient and family seminar. His wife, Susie, is just an absolute joy. She is one of the most upbeat people that you’d ever find. It's an organization that really, really cares. 

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