Kevin Veenstra: I have one of those one story of diagnosis that I was on to it before my doctors were on to it, but I didn't know what it was. I am an  asthmatic, so I see an asthma doctor immunologist. Part of that also is I have my blood work done yearly.  That's the good news about the general practitioners.They did have the complete blood count. They didn't do the total protein.

For three years, I noticed my hemoglobin dropping every year about half a unit or more. I brought it up to my general practitioner to say, "Hey,--” We did B-12 shots, but then, unfortunately, he hand waved at it and I got down to, I'd say, not very anemic but certainly anemic for a guy around 11. I had the blood test done from 2010 on, and about  2012, I noticed the dip starting. At 2015, I had two things that I was going to do, always about being an advocate for myself, was A, do I still need these asthma medicines because it didn't do my kids much good, and then B, what the heck is going on with my blood.

I didn't know if I'm bleeding or something else. I went to the asthma doctor, and he actually found the M spike by doing the electrophoresis that the general practitioner never did and so he called up the general practitioner and then got me that month into a hematologist which I've been with ever since. I was diagnosed in August of  2015. I actually was bringing in, being an engineer by training, graphs of my blood counts dropping to my general practitioner to say what gives and he didn't quite pick up on it.

I was then diagnosed September 2015 initially and I had ongoing some fatigue along the sides, but it's like the frog in boiling water. It happens so slowly, never really quite notice to say,  "Oh, yes, I can't do what I used to do." The running joke is that another fellow support group patient and I, my wife and her husband were out walking on one of these foundation walks, and both of them compare. This other patient has the exact same item I did. She had more bone expression than I did, but also had anemia.

Her husband and my wife both at that time before were diagnosed just thought we were out of shape. Afterwards it's like, "Oh, no, I guess there is a medical cause for Kevin being more anemic." Misdiagnosis for three years, I don't think that's totally uncommon amongst myeloma patients to find out that something has been going on. I think Dr. Kyle of Mayo would say that when you're diagnosed, the myeloma actually started 10 to 20 years before your diagnosis, just for the geometric progression of how cells proliferate. I did start to go and get treated then in 2015. We did have to change insurance companies, so ... general practitioner got one that I'm more happy with now.

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Kevin Veenstra: I was diagnosed in September 2015, certainly in essence that made sense of something and we knew something was going on, but  it's certainly very shocking, overwhelming. I think sometimes you feel like you get run over by a truck and you're not quite certain what hit you. I did briefly look at the internet and I could recognize at least upfront that a lot of the citations that came up back then were really old and I decided rightfully not to pay attention to them.

I went to my local hematologist who's actually is a myeloma specialist and got put into-- Actually, they had a phase three trial going out at the time. It was for myeloma  KRd versus VRd. I got put into the trial right from the front. I got put in the Kyprolis [ arm. I did eight monthly cycles of induction twice, Monday, Tuesday, for infusion,  three weeks out of four with Revlimid. It was done locally. It's about 10 miles away, so after the first trip  or two, I had somebody drive me, but then I could realize I could actually drive myself to and from the appointments.

We did that eight months. Halfway, the initial discussion was probably going to go to a stem cell transplant, which we did. It was mentioned early on as this is most likely where it's going to go.  That would have been September. Let's say around January, they started to say, "Yes, we should get you into a stem cell transplant," which I then had subsequently had done starting in May carrying into June of 2016 at Mayo Rochester. The treatments, they went well. In fact, my doctor at the . . . clinics. I don't know if you can say where you're at or whatever else.

That's where I ran across a lot of people from the myeloma support group that were very friendly and going twice a week for extended times because it was a pretty slow infusion. You got to meet people. That was actually the talking to people at infusion and the support group was a blessing to help along to say, "This isn't the end of the world." I started going to the support group I think in October of 2015 based on Blair recommending it and a couple of other people I saw there. It's always the community that helps you through stuff. You start talking about it. It becomes a little more manageable, and then support group and you hear other stories and realize you're not in this alone.

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Kevin: Not a good experience. It depends on how you define it. We'll never do that again because it didn't work. I came out of it the same, if not worse than I went into it for all that trouble. I think part of it is my type of myeloma that it hides well. I think it's the t(11;14) translocation, which either cells grow fast or cells don't die. This is more of the cells don't die. I know it's still the standard of care.

It works I think for a vast majority of people, but there is a fraction that you don't really hear about that I think is about one-fifth or one-quarter that it doesn't really do much for. Not a hard statistic on it but let's say, 60% come out better and have a deeper response. There is a fifth or a fourth of us that it didn't do anything. Mayo is a good place. I think they do everything well, but it's probably one of the-- I don't mean to scare people, it's one of the harder things you're going to ever go through with your friends and family. I think it was actually harder on my wife than it was on me because I am suffering through it, but she's the one who has to see me.

We had a lot of friends to do the round-the-clock support, but she never gets a break. She is always worried. I'm too tired to worry, [inaudible] [laughs]. I'm just hanging. I'm just going to hang out, and that's what I am, and she's worrying about what goes on throughout this. It is a standard treatment. It works for most, did not work for me. Because it didn't work, even though-- Pretty sure they're not going to do it again.
 

Kevin: After that which that is scary because you come up, "This is now I've been less than a year into my diagnosis, where do I go from here?" Being at Mayo I was able to be put into a Venetoclax trial, which Venetoclax worked for pretty much on average about seven months. About January and February, my numbers went up and they didn't get back up to where I started, but they'd gone up two months in a row, so, I was disqualified from the study, and they put me onto actually, Darzalex, Pomalyst, Dex. They put me onto Darzalex, which is one of the latest greatest monoclonal antibodies. 

It was nice to work, I then thought study, I had to drive down to Mayo probably once a month, which in winter is not your best time, but it's not the end of the world. It was nice to try it out, I'd like to think at some point in time with my type of myeloma, they could actually bring back Venetoclax in conjunction with something else versus being just Venetoclax and Dex. I don't have a single agent in which I consider VD that single agent, they don't work as well as when you put it in a combination, but who knows, it's not from what I've seen since then. 

I was on Darzalex, Pomalyst, Dex, 50% of the people minor infusion reaction first time, and it never had any issues with it since. The Pomalyst though was causing me facial rashes and mental fogs and was not good, so part of that I would say for a lot of people is you want to definitely be your own advocate because it's not just about treating the cancer, it's about balancing cancer treatment, quality of life. 

I was my own advocate, we dropped from four to three on the Pomalyst and my doctor wanted to go to two and I put my foot down and said "No, let's go back to Revlimid." I never had any problems with Revlimid, and so he did listen even though he wanted to go to . . . and then I've been on, . . , Revlimid Dex for over 50 cycles of over four years now. We did drop down-- I'm trying to think of it. A year and a half ago, I dropped the Dex in half and a little bit more, and then I dropped the Revlamid from 25 to 15 because I started to get some hand cramping and other stuff. 

That's pretty much kept it in line. Occasionally, if I do something a lot more than I've done, I can still get some cramping around that time, but it's not even if I just looked at holding a pencil, my hand would cramp in the full strength of the other ones. Knock on wood, that's always the fear of when's the other shoe going to drop refractory is a fact of life of myeloma, and so I've inquired of the various doctors where we think we would go. I do a lot of research also on the side, just for trying to keep our group informed of the latest trends and be selfishly wanting to know what are my options and just seeing what may come up when this does go refractory. Knock on wood right now, it's been okay, my phrase is I like to keep riding this horse till it's dead and I kick it twice, and the other one is I like to keep as many arrows in my quiver as possible. 

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Kevin: A side-note about halfway through this, about two years into it, I had a brief uptake that my myeloma has never gotten away so that we're now five-plus years  coming up on six years. I've never gotten to remission. I've never gotten to zero. I've always, M spike of around 0.3 or something plus, or minus and I've always, I'm an IgG cap. I've always had Kappa light chain. 

I was running down. You should be about one to two.The lowest average. I was running probably 10 to 20, and then I started running 20 to 30. One of my doctors actually got me-- I was scared because at three of the four markers, they say you're in chemical refractory. I can't think of the right word they have for it. They're saying, "Yes, your myeloma is coming back." 

I actually got put into the initial phase of a clinical trial\. I went all the way through it, all the testing, everything was great. They handed me a debit card and said, "Pick out a hotel. We're going to line you up in like three weeks." Then it turns out it wasn't sick enough for that slot and so I was pulled and I was no longer qualified, even though I qualified on the front end, for that particular research slot, I didn't qualify. Actually, that was a blessing. 

My, overall generic thing for a lot of-- One of the thoughts I had was sometimes-- I think Chris Garth Brooks song up, so you cut out or your picture cut out. Hello, if you're still there, that's fine. Yes, I hear you. That's fine. As long as I hear you and you can hear me, that's fine. I think there's  . . . songs, unanswered prayers. I'm not a huge country fan, nothing against it, but, yes, that was a blessing in disguise. 

 My one other hematologist was saying, "I thought it was a little premature for you. I'd like to--" His other quote was, "I'd like to see them sharpen the arrow a little bit more before you actually had it." Mine was keep the arrow in the quiver. but it turns out, I now have been stable at that point where I jumped up to let's say, 20 to 30-ish for the . . . and, somewhere 0.3, 0.4 for the M spikes, till, as of last month-- I'm not going to curse myself. As of last month, I've been in that steady area for one and a half years. 

As long as it's steady, I think stables-- You don't have to be cured, that'd be another thing for people is a lot of people get focused on, they want to be zero and zero's great if you can get there. MRD negative is going to have a longer, deeper response, but if you can't get to MRD negative, stable is not a bad thing. The enemy you know is better than the enemy you don't know. Stable but good quality of life I'll take over,   get to zero, but poor-quality life. It needs to balance anything you do, diet, whatever else you need to balance, fighting the cancer with living your life in the meantime. 

That's one of my other favorite phrases is nature thrives on balance. Anything that's a good ecosystem or whatever else you don't want to be too far to the left, you don't want to be too far to the right. If I get too many rabbits, then they'll die off from overpopulation or too few coyotes. I get too many coyotes, they'll die off of overpopulation. You want to be in that sweet spot in the middle. 

When you treat your cancer, you want to get it as low as it can, but you also want to have a quality of life. You need to balance those two things out. I'm happy if I can't be zero in high-quality life, I'll be stable in high-quality life. 

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Kevin: It's your life to live and so you want to make sure just like I did with the alm list, you have to make sure that it balances quality of life as you see it to say, "Yes,  that may be the latest greatest and it may be slightly more better aggressively treating the myeloma but I can't stand the side effects and so we need to do something different." 

The other one is there's one of our long-term patients in our group is really struggling. If at some level you have to come back to, "when do I pull the plug or not?" I'm not there yet myself but I've had the discussion and it is very true that you have to really start thinking about that. If I'm just going to treat it and I'm going to spend all day in bed vomiting, is that really worth going down that path? 

What's the burden you want to put on yourself? What's the burden you want to put on your family? I've done high-level thinking about it. A friend of mine contacted. He actually runs a funeral service, got the planning guidelines. Not planning the service, but all the things you need to think about ahead of time just to make it good for your family. Because it's really about who's left over after you. Make sure that Rachel's got the passwords to all the accounts and knows what pays out of which funds. We certainly both done health care directive of a very dear friend of mine. Unfortunately, he was getting treated for a rare case of lymphoma. They don't have all the nice drugs we do for multiple myeloma.  

He just completed his eighth cycle and final cycle of chemotherapy. Then because of the low platelets through brain aneurysm. I don't think he had that conversation with the wife. He's alive. He can get up in a wheelchair and move one arm and stuff but he's not the person. Doesn't remember most of his life. I don't know if that's the quality of life you would have chosen if asked up front but certainly the- I don't know and don't think of what the conversation that he had with his wife if they had anything about that. 

I don't mean to be morbid but people need to think ahead about, at some point in time, you don't want your family to be caught flat-footed. Your wife will know if we try to share responsibility but I'm the online bill payer so everything gets paid online and few things are cut with the check. Making sure she knows the passwords because we also had the issue of our support group. I was an assistant leader along with Vicky or other co-leader and both the original support group leaders died off within a span of six months unexpectedly. The first one we had to shut down the website because a lot of places respect your privacy, even after you're dead. It took a long time to get the test certificate, to get that taken over. Then the other one died without turning the financial keys over to us but fortunately, the bank understood and just cut us a check and we went to a different place. 

Stuff happens in a moment's notice and so you at some level do need to be prepared for it ahead of time. We now use a shared drive and cab both. It's not just my emails Vicky's phone number or vice versa to get into stuff. We have contingency plans and the same thing personal life for people to get that healthcare directive done, get that power of attorney done, get the will of beneficiaries done, get it done ahead of time. It's not about you. It's about your family and you're not being morbid. You're thinking of them. 

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Kevin: I think it's great that the IMF has rolled out this Myeloma Action Month. I liked the letter that they have to send to your doctors to try to make them more aware of the what causes myeloma. I wish my doctor had gotten one of those, my original GP, had gotten one of those way back when. I haven't sent him a letter because I was long since done with him by the time that it rolled around, but if I remembered his address, I should send him a letter because I think it's awareness for the doctors for sure. For as much as they do, I think it's very well done. I think it's also awareness for newly diagnosed patients because when you're living in your normal world, you're really not hearing too much about myeloma. It would be good to hear more about it. I know there's some big, fun givers. 

One year we did get a resolution signed by the legislature to make an announcement, but unless you get front page in the paper or somewhere in the paper, it's hard to get noticed for it. I think the topic they've had the last couple of years, I think is great. I always have a hard time, which is resiliency. I think that is a huge part of myeloma is because it's now more of a long-term somewhat chronic disease. It's more acute than chronic, but it's still got a chronic nature to it. You have to be in it for the long haul. Resiliency comes in, not only in year over year but even every day to come back in to say, "Where am I at today? Where am I going to go today? Do I have that in for me?" 

Sometimes you have to make a resolve. I'm just going to get up and I'm going to put one foot in front of the other and that's what I'm going to do today, see what I can or cannot do. There are good days and there are bad days, myself included, but just resiliency is for me. It's different for everybody. It's really about making a choice to, I want to get up again.That sounds more morbid than it is, but it is just part of-- I don't know if it's Scandinavian upbringing or whatever else, "Yes, today I'm going to get up and I'm going to do something today." 

Some days could be lay in bed days, but for the vast majority of days, I'm going to at least get up and do something. Once I start going, it all works better. Actually, I find out a lot of times I have more energy than I thought I would. The Myeloma Action Month I think is a great initiative by IMF to get awareness out there. Really, I think awareness amongst some of these people who are, I would say, even newly diagnosed, that there is help out there for you, that you're not just-- You're certainly not in it alone. It's not the death sentence it was 10 years ago.  

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Kevin: I think the biggest one is really about what is available to you through your insurance plans or your location. Studies have proven, if you have a myeloma specialist on your team, doesn't need to be your primary doctor but at least some level of consultation, you will live longer. I do feel for where I'm in the twin cities, I'm blessed to have a bunch of clinics and two great sites, Mayo Clinic and UVM, right within our reach. I'm from Iowa, so I'll pick on them. If you're up on remote Iowa, you may only see an oncologist and that's an issue because they may not be up to date on the current trends. I think the thing was that your doctor seeing less than four myeloma patients a year, statistically, you're not going to live as long. 

Long-winded answer, what can be done about it, I think that's part of the awareness to people. I think through groups like the IMF and other ones, especially now in the case of telemedicine, to make sure that you're accessing the best knowledge of multiple myeloma when you're getting your care. Maybe you still get treated at your local clinic, but I think you could now have virtual telemedicine to bring in Mayo Clinics or bring in Dana-Farber or somebody else to come back in and help you with their diagnosis. That's probably the biggest one, is your doctor doesn't know what they don't know. It also comes into some level of insurance coverage and that gets political. I'm not going to get into that, but on that whole one is you do need to also-- 

We're expensive patients. You do need to have great insurance on that standpoint. I'm not quite to the Medicare phase yet, but that also gets quite expensive for people. I know the International Myeloma Foundation is doing a lot to try to address the oral disparity because plan A and plan B, they do a fair amount to be reasonable on it, but plan D, it just kills patients that if I was on Medicare, I'd be paying out of [00:02:10] pocket $10,000 to $15,000 a year. Now there's a lot of support groups out there that actually helped fund it, can do some of the copays and even some of the drug companies, if you're on private insurance. It's expensive. 

What disparities come from? You have a doctor who knows your condition. Do I have the money and insurance to cover the treatment? Those are two of the things  that I think need to be addressed. Telemedicine in knowledge can address the first. The latter one, IMF is doing a lot. The Oral Drug Parity Act to make it treated in Medicare more like a plan B is a great legislation and be nice if they can ever-- IMS is doing what they can. Other people are doing what they can, but it just needs to be passed . 

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Kevin: A lot of isolation. My big thing is I'm doing okay. I have to admit that mask-wearing has been my friend because I've been known to-- In winter months, I will almost live on antibiotics. If there's a cold anywhere near me, it'd go right to sinus infection. This is the first year. . . part of us . . . is to get away. Once I get down here in warm weather, I don't have the issues, but this is the first year, and I can remember, I originally talked about this morning, was that I didn't have a cold that went to a sinus infection before I got here. 

I think that was basically mask-wearing and isolation. On the physical side, certainly, I do all the things they say. Once again, IMF has been great about publishing stuff there. Dr. Durie's videos are just excellent about what you can do. On the physical side, I've been fine. The mental side, it's been a little tougher. I take a lot of walks. I used to play a lot of tennis. I did a lot of volunteering not just for the IMF support group and a lot of things. That's been hard to basically as a retiree to having that section of-- I easily move beyond-- Part of my identity being my work, to part of my identity being all the different volunteer activities I did. 

Unfortunately, the pandemic wiped those all out, so I still do the support group. That's good, but all the other things I did-- wiped out my tennis. Certainly, pandemic fatigue hits you, but knowing the consequences are severe that  I keep reminding myself, "No, you can't go play tennis here because as much as you'd like to, it's still way crazy in Arizona," so I'm not playing tennis. 

Physically, doing better because the isolation, I didn't pick up other side infections. Mentally, it's really tough and it's part of that resilience you train in. If I'm going to get through it, I'll do something else. Have I picked up all those hobbies or self-improvement things that I like to think I could have a year ago? No.  I think the vast majority of us pandemic people don't have a lot of show for that year, but I live through it and that's what counts and so-- 

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Kevin: To me, the IMF means you're not in this alone. They're a great resource for medical information. They certainly fund support groups. They have all types of excellent videos and pamphlets. The IMF means support. You're not in this alone. That's what it means. 

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