Battling Blood Cancers: Rabbi Ronald Roth's Journey

Rabbi Ronald Roth on Myelofibrosis, Bone Marrow Transplants, and Expanding the Donor Registry

Host Mike Roth introduces season eight of Villages Vitality Life, Seniors Life Unscripted and continues a series on medical issues facing seniors with guest Rabbi Emeritus Ronald Roth, his brother. Roth recounts being diagnosed in 1978 with essential thrombocythemia that progressed in 2015 to myelofibrosis, a blood cancer involving scarring of the bone marrow that reduces blood cell production. After declining counts and limited benefit from injections, he pursued a potentially curative bone marrow transplant at Mount Sinai in 2018 using a haploidentical half-match from his son Gabe after no perfect registry matches were found; he describes hospitalization, slow engraftment, and a year-long recovery. He advises seeing specialists, supporting research, getting regular blood tests, joining support groups, and expanding donor registries via NMDP/Be The Match and Gift of Life, especially for minority groups.

00:00 Season Eight Kickoff
00:40 Meet Rabbi Ronald Roth
02:20 Diagnosis to Transplant
05:45 Understanding Myelofibrosis
06:45 Symptoms and Monitoring
08:20 Alzheimers Tip Break
09:15 Advice and New Therapies
11:30 Support Research and Registry
15:28 How to Become a Donor
18:25 New Treatments and Recovery
23:33 Resources and Closing Thanks
26:11 Show Wrap and Supporters

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Transcript

Dolores: 0:56

Welcome to season eight of Villages Vitality Life, Seniors Life Unscripted. In this new season, we talk to leaders of clubs and interesting folks who live in and around The Villages. We also talk to people who have information vital to seniors. You will get perspectives of what is happening in and around The Villages, Florida. In addition, we will add more information for all seniors

Mike: 1:20

This is Mike Roth on Villages Vitality, Senior Life Unscripted. Today, we're going to be continuing our series on medical issues that face seniors. TodayI'm on with Rabbi Ronald Roth. Now, that's no coincidence 'cause he is my brother. Ron graduated from Cornell University with a BA in Theater Arts in 1970, and the Jewish Theological Seminary where he received an MA in Rabbinics and Rabbinic ordination in 1989. Ron has served in three different congregations, Beth El Synagogue in East Windsor, New Jersey, the West End Synagogue in Nashville, Tennessee, and the Fairlawn Jewish Center, Congregation B'nai Israel He retired in 2019 and was granted the title of Rabbi Emeritus. Ron, thanks for joining us today.

Ronald Roth: 2:21

Thanks for having me. Good, always good to Good to see you Mike.

Mike: 2:24

Ron has been active , in the community in Nashville. Now you're a volunteer ambassador for the National Marrow Donor Program, the National Bone Marrow Registry, and he's a member of Me The Match Clinical Trials Patient and Caregiver Advocacy Committee. He continues to teach adult education classes for the congregation in Jewish Ethics Now. Rabbi Roth is married to Rhonda Cass Roth, former newspaper columnist and a communications director. They're parents of two adult children Gabe and Deana, grandparents of a granddaughter, Isabella. Why don't you tell our listeners what you were diagnosed with in 1990?

Ronald Roth: 3:07

1989 . Actually, this goes back to 1989 . I was diagnosed with a high platelet count, and that indicated that I had a disease called essential thrombocythemia, which is a type of blood cancer

Mike: 3:20

Okay. And it progressed to what in 2015? In

Ronald Roth: 3:24

2015 it progressed to what's called myelofibrosis, also a m- actually, a even more serious type of blood cancer

Mike Roth AI4: 3:31

And in August of t- '18 you received a bone marrow transplant at Mount Sinai Medical Center in New York City. I know I attempted to help you and it turned out I wasn't a good match, and your son Gabe was a haploid half-matched donor and that's where the bone marrow cells came from. He d- Ron has recovered very well and why don't you tell us a little bit more about the experience of going through that from diagnosis to bone marrow transplant?

Ronald Roth: 4:04

Sure. Th-this was you know, I was diagnosed in 1989 with the high platelet count. In point of fact, at that point, my doctor didn't call it essential thrombocythemia, suppose because, number one, there was nothing I can do about it. There was no treatment that I needed. He kept saying, "If it goes too high, we'll give you a drug, and it'll drop it back, and that's the worst thing that can happen." Unfortunately, worse things did happen because my platelet counts went started going down below the normal level, and that's when I was diagnosed with myelofibrosis, and I was told to see a specialist at Mount Sinai, a medical center, Dr. Ronald Hoffman. I started seeing him in 2015, and my blood counts kept going down again, and I, even though I was receiving weekly of a medicine to raise my blood counts, 2018 it was very clear, though the disease could not… it couldn't totally predict about what would happen, it was very clear that this, frankly, this disease was going to kill me. So I had to make a decision as to what I wanted to do, and the only way to cure the disease is through a bone marrow transplant. And Michael, I do appreciate that you were you were tested. There's a one in four chance that a sibling could have match. It's a complicated matter. It's not, has nothing to do with blood types. As a matter of fact, blood type is irrelevant. What's called HLA factors, which is not worth going into, 10 of them, if they match, it's called a match. And the worldwide registry, which was h-had about 35 million people on it at that time, no one had a perfect match for me.

Mike: 5:40

Hmm.

Ronald Roth: 5:40

And so my other doctor, who I was… my transplant doctor, Dr. Alla Keyzner called us in at one point and said, "They're having some success in Italy with a new thing, a half-match, we could test your son and see if he's a half-match." Our son Gabe was a half-match, and in 2018 I said, "Yes, let's go ahead with the half-match." My, you know the odds were not… the half-match, I wouldn't have made it. With the half-match, I had some possibility of of surviving.

Mike: 6:11

Okay, so here we are seven years later

Ronald Roth: 6:13

Yeah now I beat some really bad odds. My doctor literally said to me, you know, maybe a 50 f- 50% chance of survival and a 30% chance of being as healthy as I am now. So I'm very

Mike: 6:25

How is myelofibrosis… How is myelofibrosis different from other blood cancers like CLL or c- leukemia?

Ronald Roth: 6:33

In blood cancers, there's something wrong with the prod- production of the components in the blood. No tumors, no stages. In myelofibrosis particularly, there is a scarring inside of the bone marrow. Because of the scarring production is totally made… it just doesn't work. My counts for platelets were very low, red blood cells very low, and my doctor once showed me a graph. He, trying to convince me that I really needed to go to the to transplant. It's not a… It's a hard decision to decide to go to transplant because the, you know, the odds are not great. But he showed me the graph, and my numbers kept going down and down and down over that three-year period. So in myelofibrosis, of the scarring, the bone marrow cannot produce platelets or red blood cells.

Mike: 7:25

What kind of symptoms did you have? Or were there any treatments before the bone marrow transplant?

Ronald Roth: 7:30

Yeah, that's a good question. Myelofibrosis , Again, the type of blood cancer I had, as my doctor said, it's a very unusual disease and you can't make predictions. The reason I was even diagnosed with that was because I was having regular blood tests as part of my annual physical with my doctor, and they saw the abnormalities in my blood numbers, and I also had some, several, huh, very painful bone marrow biopsies that diagnosed that. they have that diagnosis, yes, there are symptoms, and each time I'd see the doctor, he would go through a series of symptoms. "Do you have fatigue? Do you have trouble sleeping? Do you have itching? Do you have bone pain?" And so on. I was very unusual in that as well. I didn't have any of those symptoms. I literally had… the only symptoms I had were the low blood counts, did not have the fatigue, I was receiving weekly injections of a medication to raise the blood the red blood cells. That worked for a while. But towards the end, I had bone pain. I had for about a yea- a little less than a year, I had some bone pain. That is very unusual. It's a peculiar disease. Most people have an enlarged spleen, the fatigue and other symptoms

Mike: 8:40

So you were lucky in that respect

Ronald Roth: 8:42

Yeah, I kept working. I was working full-time regular. It didn't affect my work at all, and as congregational rabbi, that's a very demanding job. I spent long hours on the job every-- I, my day off was Wednesday, and I'd go from New Jersey to Mount Sinai every Wednesday for three years, my medications and my blood tests

Mike: 9:00

Right, let's take a short break and listen to an Alzheimer's tip from Dr. Craig Curtis.

Dr. Craig Curtis: 9:06

So even if you removed 100% of the amyloid, that would not cure Alzheimer's. That is true in patients with symptoms. You can remove all the amyloid, yet the symptoms will continue to progress. So what we're doing now in these prevention studies is we're trying to see if removing amyloid prior to symptoms beginning, if removing all the amyloid out of your brain, whether or not that actually halts the progression into actual symptoms in Alzheimer's disease. With over 20 years of experience studying brain health, Dr. Curtis's goal is to educate The Villages community on how to live a longer, healthier life. To learn more, visit his website, craigcurtismd.com, or call 352-500-5252 to attend a free seminar

Mike: 9:53

Thank you, Dr. Curtis. I'm back with Rabbi Emeritus Ronald Roth, and we're talking about a rare blood cancer myelofibrosis. We did a couple of shows on blood cancer over the, last two years. One on CLL and another one a, few weeks ago. What advice do you have for others who have been diagnosed with one of these rare blood cancers?

Ronald Roth: 10:19

I really advise a couple of things. First of all, seek out a specialist. of these are not that common, therefore you really wanna find someone who both you, first of all, you feel comfortable with, a doctor that you, that you know that's really shall we say, on the same wavelength. I was very fortunate at Mount Sinai to find those, and also someone who spent 40 years specializing in the treatment of these rare diseases, so they're right on the edge. For example, the fact eight years ago when I had a half-match transplant, that was very unusual. You know, a couple of weeks ago they took out an ad in The New York Times saying, "We're doing so much research and importance of research, we now can do transplants where there's not a perfect match." You couldn't say that eight years ago. So I was really lucky. The fact that I had a doctor who was really on top of the latest research, and that's true I'd say for all blood cancers. A lot of new treatments, a lot of new drugs. The CAR T-cell therapy is fairly new, and that can be used in blood cancers. So

Mike: 11:23

Why don't you tell our, our listeners a little bit about what you know about this CAR-T, because it's been used in several other cancers as well

Ronald Roth: 11:30

Sure. They take some of the cells out of your body and they reprogram their genes so they fight the cancer. So now the cells that came out of your body are gonna fight the cancer cells in your body, and they re-inject those into your body and it fights the cancer. I mean, it sound-- it's complicated. It takes a long time. It's not easy. But that's the general theory, and that is becoming a real important way of treating blood cancers.

Mike: 11:58

Now, you went to Mount Sinai because you live in the New York City area. Here in, Central Florida, I guess Tampa is the closest hospital I would say that would specialize , in blood cancers. Now, what can we do a- as seniors to help in, the fight against blood cancer?

Ronald Roth: 12:17

Okay, there are several, things we can and can't do, shall we say. First of all, of course, support research is so critical. The… I mean, I spoke to my doctor about this and she says, "Oh, yes, they're finding new drugs, new therapies, new ways of fighting these cancers." So you really have to support research. That's both, you know, privately through donations to organizations like the American Cancer Society. You want a long name? The Myeloproliferative Neoplasm Research Foundation. That's the, that's one type of cancer. Each of these types of cancers has a research foundation. Support them. Very important to do research and support that the government does not cut back health research, which unfortunately is happening, so we should fight against that's one, too. The other major issue with blood cancer is for people who need bone marrow transplants, that's expanding the registry. Now, as I've said, the, worldwide there are thirty-five million. Now, it is true that they want blood donors who are thirty-five years and under, which I understand is not significantly represented in The Villages. But anyone in The Villages,

Mike: 13:16

Very rare in The Villages

Ronald Roth: 13:18

I understand, but you may have a friend or a relative who can organize a drive or can even individually. It's very simple. If you're under thirty-five and under, you just go on your computer and get in touch with there are two organizations NMDP, or just do Be The Match. You can do Be The Match if you're under thirty-five, and they'll send you a little kit. You swab your cheek, you send back the swab to the people in Minneapolis, and you're on the registry. If they find a match for you, then yes, you would be asked to donate, and that donation w- can save a life. It doesn't cost you anything. if you do become a donor, you have to take a few days off from work to do that. That's really important, especially, let me make this point as well, for people in minority groups, and by the way, we Jews are a minority group because of the Holocaust, finding g-good matches is very hard. Any minority group needs to increase the number of people in the donor base

Mike: 14:18

Mm-hmm. Mm-hmm. So that's true for all minority groups?

Ronald Roth: 14:22

All minority groups in America are not w- I mean I was sitting there Mount Sinai before the transplant talking to another patient, and she said, "Oh yeah, I got about 68 match- perfect matches." And I'm saying to myself, "Great, I got zero perfect matches." So yeah,

Mike: 14:37

Yeah. What what was the e- ethnic group for, for the 68 matches?

Ronald Roth: 14:42

I know she looked like, you know, some Amer- white American. I don't know what ethnic group she was, but that's what she looked like. But she,

Mike: 14:49

So the Holocaust had a lingering effect of removing people from the population who might have been matches

Ronald Roth: 14:55

Absolutely, and that is why it is sometimes more difficult. And also, I assume people of say, I would say our ages have regular medical checkups. My cancer was determined through just a blood test, through my regular annual physical

Mike: 15:08

Right. I've undergone, undergone multiple blood tests every year af- after your experience. What advice can you give to our listeners who don't have any symptoms.

Ronald Roth: 15:19

Again you might not have symptoms. Let's put it this way. If I had not been having regular blood tests every year since 1980-something, I would have not had a physical symptom until a year before I had to have the transplant. that is a… So there are physical symptoms, fatigue, a fullness in the stomach. Spleens become enlarged when you have blood cancers. That can… It didn't happen to me terribly much, but it happens to many people. So any sort of those, any symptoms that you feel, yeah, go see your doctor, have a blood test. It's pret- that's pretty easy, you know. I like to say, you know, I've only had about 300 or 400 times they've taken blood out of my body, you know. No big deal And then they may have to do further tests, you know, there are further tests to confirm the diagnosis

Mike: 16:08

Let's talk about people who are wondering about what the process is to become a donor

Ronald Roth: 16:14

Okay. Sure. As I said you can get in touch with another group, it's a group in Florida. If you have younger relatives in Florida, there's a group called Gift of Life. You can get in touch with them. Again, Gift of Life or Be The Match, just Google them. They'll send you an envelope. In the envelope is a Q-tip. Put the Q-tip to your inside of your mouth, you send it back. You get registered. Now, let's say you're called to be a donor. Now, there are two different types of donations. One is bone marrow and one is stem cell. In either case, you'd have to go to one of the donor centers, and again, there are many donor centers around the country. So one of the things I do in my volunteer work, try to get legislation. Sometimes people are threatened with losing their job if they take a day off to be a donor to save somebody else's life. We're, we're working on there being national legislation that you can't do that. So you go to the donor center, and again, the process for the stem cells is a little bit longer, where they basically have to put in an IV on one arm and an IV on the other arm, and they filter the blood out of your, as it goes out, and then back into your body for what are called stem cells. And with the bone marrow, yes, they do have to take some bone marrow from your hip. That's what happened to my, our son Gabe. again, in either case it's, it takes a l- takes a while. The stem cells actually may take a few days. Bone marrow is usually one day. It might be a little pain, noth-nothing terrible. And then you, they, then they are able to take those, either the stem cells or bo-bone marrow, and they send it to the hospital where the recipient is. We have v-volunteers who go to Europe because there are, sometimes you, a 10 out of a 10 match might be in Europe, and they have to go there and literally go on a plane, pick it up, turn around, and come back.

Mike: 18:07

Right, that's a strange kind of medical vacation. Anyway you, you mentioned stem cells, and you were talking about taking stem cells out of a, human donor and refining them out of the, the blood plasma and then giving them to another person. Is that the way it works?

Ronald Roth: 18:26

That's the way, or for the person who's the match, yes. Mm-hmm . We're just talking about healthy people going to a donor center and ha- donating stem cells. That is perfectly legal throughout the United States. There's no issue there with doing that to save someone's life

Mike: 18:41

Is there a age cutoff for stem cells? You, you mentioned 35 for the bone marrow. Same thing for the stem cells

Ronald Roth: 18:49

The cells or the bone marrow is better, more effective, more likely to work if you're 35 or younger.

Mike: 18:56

How s- old was Gabe when, he gave the donation?

Ronald Roth: 18:58

see that was 2015. He was he was in his late twenties

Mike: 19:03

Okay. So he was well within the group.

Ronald Roth: 19:05

Oh yeah

Mike: 19:05

Yeah.. Have any new treatments been developed for myelofibrosis?

Ronald Roth: 19:11

This this is some interesting work that's being done. number one, new drugs have been found to reduce the symptoms, and the key is to try to stop progression. In blood cancers, you know, there's a progression from the time that you're diagnosed until the time that you may need a an intervention like a bone marrow transplant.

Mike: 19:31

Right

Ronald Roth: 19:32

has happened in last, in the last few years is that some new drugs… When I was diagnosed, there was one drug for people with myelofibrosis, Jakafi, which I didn't take 'cause I didn't have the symptoms. While I was being treated, I was actually asked to be on a clinical trial. It turned out that I… It's a long story, not worth going into, but the bottom line was that there was a doctor at Mount Sinai who was developing a drug at that time which is now acceptable for people with myelofibrosis. Now you have two or three drugs that can s- that can treat the symptoms, prevent the symptoms, they're hoping, they don't know yet, if they can have an e- effect on the progression. That's the key issue here with many of these blood cancers. Slow down or stop the progression, and they're working on drugs for that at the moment

Mike: 20:20

Mm-hmm. And there were no other tr- and are no other treatments like radiation or surgery

Ronald Roth: 20:25

No, surgery is not a a treatment for blood cancers, nor radia- radiation surgery are generally not treatments for blood cancers. They are for other cancers, but it's true 'cause there's no tumor, they're not trying to take something out or kill something that they can… it's throughout your body. It's throughout your… It's systemic

Mike: 20:43

Just for an information point, you know, when you went in for the bone marrow transplant, how long were you personally in the hospital?

Ronald Roth: 20:52

Another story. So my doctor said, "Oh, you'll be in four to six weeks." I was in for eight weeks. Several things. Because of the type of cancer I had, myelofibrosis, and the scarring was pretty serious inside my bone marrow, a very long time for the new marrow to be established. You know, they, excuse me, they infuse you. I was infused on August 31st, 2015. That's my new birthday, by the way. We consider it a rebirth and lot of blood cancer pa- patients who've had transplants, they celebrate, you know. You know I'll be plus, what we call plus eight years on August 31st this year. A plus, because the day of your transplant is day zero, so now I'm plus.

Mike: 21:34

Okay

Ronald Roth: 21:34

So I went in there and I'd had the transplant come in. You know, it's a li-- it's not that dra- dramatic. The nurse brings in this bag of bone marrow and sticks it on your IV. And then you wait for engraft, what's called engraftment, and my engraftment was just very slow. As a matter of fact, they weren't sure it was gonna work. They were even at one point talking about giving me getting more bone marrow for me. But I was in the hospital for eight weeks and the you know, the time to really go through cur- getting better took me about a year. I remember I was told that right when I was diagnosed. I was shocked. "You mean it takes a year to get better from this disease once they treat you?" And the answer, yes, it does. Because when I got back to the house after eight weeks, I could barely walk. I'd lost 20 pounds. Of course, I was bald. I was weak. I could barely… I, it wasn't… My taste buds were gone. You know, 'cause you get chemotherapy. In the week before you get the bone marrow transplant, they give you chemotherapy to totally kill all your old bone marrow. As a matter of fact, what happens also is that your blood type becomes the blood type of your donor

Mike: 22:40

Okay, so your blood type actually switched during that period

Ronald Roth: 22:43

Oh yeah, I mean if you took a drop of my blood and tried to figure out who it came from, DNA would come s- would say, "Oh, that's blood from Gabe Roth."

Mike: 22:52

It's a very interesting medical switch.

Ronald Roth: 22:54

Yeah

Mike: 22:54

there anything else our, our listeners need to know about rare blood cancers like yours?

Ronald Roth: 23:00

No, I, it is also more common in older people. I'll just that out. It is diagnosed. I mean, I was… when I had the, you know, when I had the transplant, actually I had my 70th birthday while I was in the hospital for those eight weeks, and that people should really, the regular blood tests, supporting the organizations, and encouraging younger people to have themselves listed on the registry. Those would be im- important ways, because I think there, I know there is tremendous advances. I spoke to my transplant doctor. She says, yeah, she's finding it that new drugs are coming out and there's wonderful ways that we can try to treat it's a frightening disease. Let me be clear about that. I think the doctor in 1989 did not say to me, "You have a blood cancer," is 'cause he didn't wanna scare me, and there was nothing I could do about it. So you- I also, you know I also, if you have it, a support group is very important. By coincidence, there's a small group of us in northern New Jersey who have myelofibrosis, and we met for several years and I hate to say this, but yeah, a few of us are still alive and

Mike: 24:06

Okay

Ronald Roth: 24:07

regularly contact each other. Support is very important, and don't be afraid to reach out to those resources.

Mike: 24:13

Now, can you tell our listeners a couple of resources that they can reach out to? Maybe a website or a phone number that they can call

Ronald Roth: 24:21

I'm gonna mention a few. Again, nationally, the people who keep the registry, they used to be called Be The Match. A lot of people know that, Be The Match. They're now called NMDP, National Marrow Donor Program. That the, they keep the registry records. They're the people in Minneapolis who do the great work that I volunteer for. the, as I said, there's a group called Gift of Life in Florida that's a registry. There are individual organizations for each of the different types of blood cancer. Again, of one I had, difficult name, it's a myeloproliferative neoplasm, MPN. The MPN Research Foundation, the American Cancer Society, those are all organizations, and it's amazing. I, yeah, ma- that's a good point, thank you, I appreciate that, because when I was diagnosed in 2015, and I went, where did I go to find out information? I went onto the internet, and at that point, I found that I had about two to three years to live. That's, there was very little information, and basically that's what was my takeaway. If you go to these resources today, there's tr- in all of those resources, there's more information. There's something called Patient Power. It's a very good website, Patient Power, that really speaks more more detail what's going on in the cancer. So there's, there are resources. Be careful, of course, it's the internet, and I know Doctor Internet is always not correct. But there are good, reliable sources that I mentioned that will give you good information

Mike: 25:51

So my last question is, have you used AI to, at all to help people with bone marrow matching? Or has that come in at all?

Ronald Roth: 26:02

I don't know. I don't do that. You'd have to ask the people in Minneapolis, you know, the NMDP people how they- what they're doing. Again, it's, it… Look, it's the matching, like I said, there are-- Actually, there are 12, but 10 matching is is a match. It's a something that they have to do in the lab to do, to to figure out. I-- My guess is the labs are trying to make that more efficient, but I really don't know where that goes.

Mike: 26:26

Ron, thanks for being, thanks for being with us on Villages Vitality, Senior Life Unscripted.

Ronald Roth: 26:32

And, thank you for inviting me, and I just, again, I'm so just appreciative. Look, I have a s- I had a second chance on life, and I'm just appreciative of all the people who helped me and organizations and ways in which people can still continue this fight against blood cancer

Mike: 26:48

Great. Thanks again for joining us

Ronald Roth: 26:50

Thank you. Bye-bye

Speaker 5: 26:51

Remember, our next episode will be released next Friday at 9 AM. Should you want to become a major supporter of the show or have questions, please contact us at mike@rothvoice.com. This is a shout-out for supporters Tweet Coleman, Ed Williams, Duane Roemmich, Paul Sorgen, and Dr. Craig Curtis at K2 in The Villages. We will be hearing more from Dr. Curtis with short Alzheimer's tips each week. If you know someone who should be on the show, contact us at mike@rothvoice.com. The way our show grows is with your help. Text your friends about this show if you enjoyed listening. Use the fan mail button on our homepage, villagesvitality.life, to leave comments. Be sure to include your name, email, and phone number. We thank everyone for listening. The content of the show is copyrighted by Roth Voice 2026. All rights reserved