Max Schlueter survived prostate cancer | rogue tumor | lupron | docetaxel| zytiga | cytoxin | xtandi

 

DESCRIPTION

Max Schlueter was prepared for his diagnosis of prostate cancer because of a family history.  In 2011, his Gleason score of 9.0 indicated a high level of aggressiveness.  Doctors right away prescribed lupron, a form of hormone therapy.  Max’s urologist ordered a bone scan, which revealed the cancer has metastasized to his hips and spine.  Doctors offered a clinical trial of chemotherapy teaming docetaxel with the lupron. 

The treatment included six infusions, approximately every three or four weeks.  That was followed by a series of scans.  Max and his care team agreed that the cancer had been stopped and had been put into an inactive period.  After six years of this inactivity, he felt he could stop taking lupron, which turned out to be a mistake.  The cancer returned in a major way.

Another round of docetaxel was prescribed, while Max resumed with the lupron.  He also started taking a drug called zytiga, which locks onto cancer cells and prevents any absorption of testosterone.  At that point, he developed what are called rogue tumors, which are unusually large tumors, in his back.  They were very painful and prevented Max from lying down on his back.  He and his care team decided to address the rogue tumors with spot radiation.  It was a week-long procedure and when it was done.  It removed the tumors and the pain. 

Max was doing very well until 2019, when the cancer came back.  It had spread to his skull, ribs and spine.  This time he was prescribed a similar but new drug called cabazitaxel.  That had good results for about a year.  Then Max had a new set of problems.

The cancer came back again and produced a chemical called FGF123, which triggered an autoimmune reaction, removing the linings of the nerves in his legs and feet, limiting Max to a wheelchair.

This time, doctors went a drug called cytoxin, with an eye toward holding the cancer in check while also neutralizing his immune system issues. Both goals were achieved, but one can take that drug for only about a year.  Max stopped taking it in 2020.  Not long after that, he had more problems with his immune system.  This time his doctor prescribed rituxin, which has worked just fine.  There were indications his cancer was returning.  Doctors put Max on xtandi, which prevents absorption of testosterone by the cancer.  He has good results with the xtandi.

Max Schlueter of Northfield Falls, Vermont can now return to enjoying the outdoors.  With the aid of braces, he can walk two miles a day.  He can bike five miles a day, and he has resumed kayaking.  Max says despite all he has gone through, his quality of life is excellent.

Additional Resources:

Support Group:

Vermont Cancer Support Network: https://www.vcsn.net

TRANSCRIPT

Bruce Morton: Greetings and welcome to the @CancerInterviews podcast.  Thanks for joining us.  I’m your host, Bruce Morton.  Just as no two people are the same, no two cancer journeys are the same.  Our guest on this episode is Max Schlueter of Northfield Falls, Vermont.  He is a survivor of prostate cancer, but while his journey has been an arduous journey, one dating back to 2011, he continues to fight and flourish.  Prepare to be inspired as you hear his story.  Here he is, Max Schlueter, and Max, welcome to Cancer Interviews.

Max Schlueter: Thank you, Bruce.  Glad to be here.

BM: Before we get started, we would look to learn more about you exclusive of your cancer journey.  So, if you would, tell us a little about where you are from, what you do and have done for work, and what you like to do when you have time for fun.

MS: I grew up in the 1950s in the Boston area and went to Boston College.  Did a couple years in the Army during Vietnam like most people my age.  When I got out of the service, I went back to school, got my PhD in criminology.  This was in Illinois, where I met my wife of 45 years, Kay, and went on to a teaching career at George Mason University in Virginia, teaching criminal justice courses.  Then we moved to Vermont and taught at Norwich University, retired from that and became director of the Vermont Crime Information Center for about 16 years, retired from that, became a director of their crime research group, which was a research and policy outfit from criminal justice issues in Vermont.  Then I have stayed retired.  During all this time I have been a very active, self-propelled sports enthusiast.  I ski, I hike, I rock climb, I kayak, you name it, we do it.  Vermont is a great state for being in the outdoors.

BM: In order to do all that stuff, I would think you have to be in pretty good health, so would you say prior to your diagnosis, you were in pretty good health?

MS: I was, and in fact, all during the last ten years of my cancer journey, I was doing all of those things.  Just recently I had some issues, but for the most part, neither the cancer not the treatment affected my lifestyle.

BM: At some point, you had to learn that something was a bit off-kilter, something wasn’t quite right.  When did you notice something going wrong that led to the chain of events that led to your diagnosis?

MS: Actually, I didn’t notice anything.  I was very fortunate.  We have prostate cancer in the family.  My father and my two older brothers had prostate cancer, so my primary doctor was watching my blood work pretty closely and we were doing semi-annual PSAs.  Mine had been very low and then all of a sudden it popped up to 2.0, which normally people would ignore, but my primary care doctor was concerned about it.  He did another one a month later and that had gone to 4.0, so we decided to do a biopsy, and we found all of the samples had prostate cancer in them and they were all what we call a high grade cancer that scored a 9.0 on the Gleason score, which indicates the aggressiveness of the cancer on a scale of one to ten, which is about as aggressive as you can get. 

BM: It is always a very difficult bit of information to hear when one is diagnosed with cancer, but somehow was the blow softened because you knew of your family’s history with prostate cancer?

MS: I was.  You know, for me it was just a matter of time.  I was hoping because I lived a very healthy lifestyle, more so certainly than my brothers or my father, and I still was surprised when we got the diagnosis, but it wasn’t like some folks, who hear it out of the blue and disrupts their life.

BM: With prostate cancer, many times, there are options as to when to go forth with treatment, and once one does, what kind of treatment they choose.  Did you have a chance between a proactive approach and active surveillance?

MS: Because of the aggressiveness of the cancer, I went on lupron right away, which is considered a hormone therapy, which suppresses testosterone.  We debated a little bit and duked it out a bit with the insurance company, but my urologist really wanted to do a bone scan to see if that cancer had metastasized.  We did, and in fact had metastasized already to my hips and spine.  So, there weren’t a lot of options.  I did consult some radiologists who were of the opinion that the cancer had gone too far already.  It couldn’t be radiated, there was too much of it.

BM: So, what turned out to be the best option for you?

MS: Remember this back in 2011.  The best option was to continue with Lupron, and then my urologist discovered that at Dana-Farber in Boston, they were offering a clinical trial, where they were providing chemotherapy using docetaxel with the lupron.  This was not FDA-approved, so I was very fortunate to get into that.  Now, that is the standard of care.  If you have Stage IV prostate cancer, you will be on lupron and chemotherapy at the same time, so I was pleased to be able to help out in that effort by being in a clinical trial, and frankly, that treatment saved my life.  That cancer was so virulent that I probably would have been dead in 18 months is what they were estimating had it not been for this treatment.

BM: What was the next step?

MS: We went through that treatment, which was six infusions, approximately every three to four weeks.  When that was done, we did a series of scans and we all agreed that the cancer had really been stopped and had been put into an inactive period.  That went pretty well for about six years.  Then I felt maybe I could take a vacation from lupron, which is an approach that some people take.  I was having a very difficult time with hot flashes, which is one of the primary side effects of this drug and I was having a hot flash at least every hour, day and night.  It would have been great to end that, so I did take a little bit of a break, and that was an unfortunate mistake because as soon as we took the pressure off the cancer, it came back with a vengeance.  So, in 2016, I went through another round of docetaxel and that was relatively successful.  At least it slowed the cancer down, continuing of course to take the lupron.  I was also taking a drug called zytiga, which locks onto cancer cells and prevents any absorption of testosterone that is produced anywhere in the body.  At that point, I had developed some of what they call Rogue Tumors, which are large tumors, larger than the rest of the tumors in my body.  These were in my back.  They were very painful.  I couldn’t lie down on my back, I was very limited in my motion, so we decided to radiate those.  It is called spot radiation, and there were about six to eight of them in my spine.  It took seven days and that was really a wonderful thing.  They took those tumors out and relieved all of the pain.  I was doing very well, until 2019 when the cancer came back and again started to spread, skull, ribs, particularly in the spine.  This time we went with a similar drug.  This one was called cabazitaxel.  Then COVID hit.  I was going to Boston for this treatment, and we were just about at the end, and I decided I didn’t really want to go to Boston because of the COVID pandemic.  We cut that a little bit early.  We got about a year out of that, and then everything went south.  By that I mean we discovered the cancer was producing a chemical called FGF23, which is actually in your body.  When you do a blood test for it, the number is like 123.  My number was 7,000, and the FGF triggered an autoimmune reaction, and my immune system started to de-laminate, which means removing the linings of my nerves in my legs and feet, which basically left me a paraplegic, in a chair.  I was admitted to Brigham and Women’s Hospital, which is affiliated with Dana-Farber.  The doctors there got together and came up with a plan using sort of an old time drug called cytoxin, and the hope was that it would hold the cancer in check while also neutralizing my immune system.  Fortunately, for me that did work.  The damage to my nervous system stopped, my cancer was at bay, however, you can only take that drug for about a year, which is what we did.  We stopped in 2020, we waited to see what would happen, started some rumblings again with the immune system, so we went to a drug called rituxin, which suppresses your immune system.  This was a little scary to me because we were still in the pandemic.  My cancer started to rumble again, and we went to xtandi, which again is a drug that prevents any absorption of testosterone by your cancer.  That has held the cancer in place, and again, the damage to my nervous system is still under control.  Through a lot of physical therapists, great effort, great support, I am now up and walking.  I have some great braces.  I can walk two miles a day, I can bike for five miles, I can do my kayaking, so my quality of life despite all that, is really excellent.

BM: What I want to do now, Max, is backpedal a little bit, get away from the medical piece of this and address the mental and emotional piece.  First of all, here you had been leading this very healthy lifestyle, but cancer comes knocking and now you have to deal with all these drugs and there is probably this feeling of a lack of control once those drugs are in your system because of what they do, their effects.  How difficult was that emotionally, knowing that was this lack of control of your overall physical situation because all the drugs you were taking, and you weren’t even sure they would do what they are supposed to do?

MS: I was fortunate in the sense that I had a built-in support network from my two older brothers who were being treated at Dana-Farber by the same oncologist as I was at the same time.  They were just a year or two further down the line, and so they were able to provide me with a lot of great support; but even with the best of support, once you are diagnosed with cancer and it’s gone to Stage IV, you have a terminal disease, and you know that you are going to die from prostate cancer.  The question is just really pushing it out as best you can with as good a quality of life that you can.  Somebody very, very wisely that this is like grief, this is like losing a spouse or a family member because in a sense you have lost your life.  You have lost plans for your future, you have perhaps lost your livelihood if you can’t work, you have lost many aspects of control of your life.  And that went on to say there are three questions to ask.  One is, what did you lose, what do you have left and what can you do with what you have left?  I took that to heart.  Instead of being distressed or distraught about this news, I was able to basically get on top of it, ask those three questions and basically move forward.  That to me was a big help, psychologically.

BM: You had mentioned that the military was in your past.  Did anything in your training aid you in how you dealt with your cancer journey?

MS: It did.  One thing we always learned in the military to fight the fight that’s in front of you.  What that meant to me I need to deal with what I need to deal with, today.  I am not going to worry about what is going to happen 18 months from now.  I am not going to worry about what could happen with the next chemo or how effective it is going to be;  I am going to do what needs to be done today in terms of my medication, in terms of my physical therapy, in terms of my exercise, whatever the case might be.  Again, that’s really helpful because you can easily dig yourself into a very deep hole by worrying about what if this happens or that happens.

BM: You had mentioned your brothers being a source of support.  Who else might have helped you.  Wife?  Family?  Friends? 

MS: My wife, Kay, was a wonderful source of me.  The two of us were very close before, but we were even closer after the diagnosis and we were looking at my lifespan being shortened considerably.  The other thing that I wish I had done but didn’t until later was get involved in a support group.  I have only recently done that and had I done it, I think it would have been helpful to me, not only in terms of emotional support, but also in terms of these little tips that people have about dealing with chemo and radiation, especially if it’s a national group.  One of the great things about Zoom is that you can be talking to people in California or Florida and what you find out is treatment standards are a little different in different parts of the country, so that you can really broaden your knowledge by being a part of a support group.

BM: I realize you didn’t have a choice about going on the chemotherapy regimen that you went on, but you went on and there are certain aspects of chemo that are unpleasant, your appetite, how food tastes, that sort of thing; but in retrospect, are you glad chemo was part of your treatment plan?

MS: Absolutely.  A piece of advice that I would give people who are thinking about alternatives is, chemotherapy is not as bad as people think.  I have talked to a lot of cancer patients who did chemo, and we are all sort of, of one mind.  It is not as difficult as other forms of chemo.  For prostate cancer, the drugs are devoid of side effects, but they really are pretty minimal.  When I was working, I did not miss a day’s work.  There were some days when I closed my door and took a little nap, but I still exercised every day, still worked.  Fatigue, of course, is an issue with chemo and it was only a couple days on each cycle that I was really tired, but I still got out of bed.  So, for all intents and purposes, chemo was a small price to pay for the benefit that I got from it.

BM: Your journey included being a paraplegic. If you would, tell us more about the transition from being a paraplegic to your independence, the physical therapy, etc.

MS: In some senses, that was the worst part of the whole journey was the neurological damage because as I said before that I lived a very normal, healthy lifestyle.  So, when this came along and given my active style of life, this was a real blow and this is where that notion of what did you lose, what do you have and what are you going to do with what you have, was really helpful to me.  The other thing that is very helpful is that I am a Buddhist and I meditate every day, and the Buddhist philosophy embraces the sense of impermanence, that things change, and embrace the notion of being mindful of your thoughts.  What I was able to do was use those techniques to harness the thoughts in my mind, avoiding negative, defeatist thoughts and trying to move to a point of always working hard every day to improve.  At first I was in a rehab hospital, then I received physical therapy at home and then I was able to do PT in the hospital on an outpatient basis.  I had an outstanding physical therapist who was very concerned for me.  I had worked with her for many years before that.  Progress was slow and steady, but I kidded her saying, “I know I am your favorite patient because I do what you tell me.”  Indeed, I did.  I did the exercises and eventually the nerve damage was repaired, much to the surprise of my neurologist.  I send them little clips of me doing things.  A little clip of me skiing, or a little clip of me on my bike, or a little clip of me bowling.  They get a kick out of it, they need a lift.  So often they deal with cases that don’t end well, and I think they like to see successes from time to time.

BM: Max, we are talking about prostate cancer and two of the things those on prostate cancer journeys are really concerned about are urinary function and sexual function.  How did your journey go with those two things?

MS: I didn’t have a prostatectomy, removal of my prostate, which oftentimes is the cause, but the lupron because it eliminates testosterone from your body, also eliminates any kind of libido.  My wife has been extraordinarily understanding.  We talk about shifting from ‘hot sex’ to ‘cool sex’ in the sense of showing more affection and so forth.  No real difficulties with urinary problems and I guess that is because my prostate is intact.  That was never an issue.

BM: You had been talking about skiing and kayaking and the like.  You can still engage in these sports, but after the nerve damage, to what degree can you perform these sports?

MS: I definitely have to dial it back, and that was a hard part of it.  Before the neuropathy, our idea of a weekend was to climb a 4,000-foot in Vermont or New Hampshire.  That’s out of the question now.  I don’t have the stamina to do it.  Part of that is due to the current drug I am taking, which does cause some level of fatigue.  Some of it is lack of stamina as a result of the body trying to re-generate itself and re-generate nerves.  It takes a lot of energy for the body to do that.  With that said, a two-mile hike in the woods, relatively flat, is still a great experience.  It is just a matter of changing your perspective.  We are still doing it, but we are doing it more slowly, a little bit shorter distances and so forth, but it has been a hard adjustment, I have to say.  Again, my wife has been great, she has been more than willing to do this.  She walks faster than I do and we call my walking speed, “ceremonial.”  Now we don’t look so much at finishing the goal, as you would when you are high altitude, trying to get to the top.  We now look around a lot more, look at the trees, look at the flowers, look at the stones and so forth, because we are walking at a ceremonial pace.

BM:  Ceremonial.  Sounds like you should be waving to an adoring public.

MS: I am.  I am waving to the squirrels and the other creatures.

BM: It sounds like the way you are hiking is a more fulfilling experience, mentally, emotionally, spiritually.  You still getting in the exercise, but you are taking in all the beauty that Vermont has to offer, of which there is no shortage.

MS: One of the other things that I have learned from my Buddhist practice is to develop a gratitude practice, which means to look for things to be grateful for.  The more you do, the more you will find things even in some of the darkest days.  I can be grateful to the infusion nurses at the hospital that are so kind or the dedication of my doctors or the kindness of my friends who were driving me to chemo appointments, and whatever.  That certainly lifted my spirits and continues to keep those spirits up because we certainly have a lot to be grateful for, living here in the United States and having access to great medical care, many of us having good insurance to cover the costs of these sorts of things.

BM: Max, we want to wrap up now and when we do, we try to finish in the same place.  We will ask you to imagine you have a private audience with someone who has not only been diagnosed with prostate cancer but someone who has been diagnosed with a level of acuity not unlike your diagnosis.  I suspect there are many things you could say to this person, but if there were one overarching message, what would it be?

MS: I would say that now that you have this diagnosis, your life has changed and now the most important thing for you to do every day is to do what you can to beat this cancer.  If that means exercising, if that means taking the right drugs, if that means driving a long distance to get treatment, that’s what you need to do.  Other things now fall by the wayside, your work, your other sorts of hobbies, they gotta come second and for a lot of people, that is a difficult transition to make, but it is a winning recipe, believe me.

BM: Wonderful.  Max, thanks so much for sharing your story.  You have come back from a huge deficit, to use a little sports parlance, and best wishes to you and Kay as you go forward.  Max, thanks so much for taking the time on Cancer Interviews.

MS: Thanks, Bruce.  I hope somebody watches this and is helped by it. 

BM: It is hard to imagine that it wouldn’t be helpful.  And that is going to wrap it up for Cancer Interviews.  Don’t forget, if you are on a cancer journey or know someone who is, you or they are not alone.  There are plenty of people like Max that can have sage advice and information that can help you along your way.  So, until next time, we’ll see you on down the road.

Additional Resources:

Vermont Cancer Support Network

https://www.vcsn.net

SHOW NOTES

TITLE:  Max Schlueter, Prostate Cancer Survivor – Northfield Falls, Vermont, USA

With a family history of prostate cancer, Max Schlueter wasn’t surprised when he was diagnosed.  What did come as a surprise was his cancer metastasizing to hip and spine.  A treatment regimen combining Lupron and chemotherapy kept the cancer at bay; however, years later, the cancer returned years later attacking the nerve linings of his legs and feet, rendering him a paraplegic.  Between determination, his Buddhist faith and a stellar team of physician therapists, Max regained his ability to walk.  Now retired, he has returned to an active lifestyle of skiing, kayaking and mountain climbing.

Additional Resources:

Vermont Cancer Support Network

www.vcsn.net

Time Stamps:

04:50 Because of a family history, Max wasn’t surprised when he was diagnosed with prostate cancer.

05:28 He had to go on Lupron right away, as the cancer had metastasized to his hips and spine.

07:10 A combination of Lupron and chemotherapy saved his life.

09:55 Rogue tumors materialized in his spine but were removed with spot radiation.

12:03 Max suffered an autoimmune reaction, which affected nerve linings in his legs and feet, leaving him a paraplegic.

14:03 Was eventually able to walk again.

17:23 Said his military background aided his cancer journey.

21:45 Max said regaining use of his legs and feet was the toughest part of his journey.

24:35 Describes his post-treatment urinary and sexual function.

KEYWORDS (tags):

prostate cancer

rogue tumor

spot radiation

cancer

lupron

docetaxel

cancer interviews

zytiga

cabazitaxel

bruce morton

cytoxin

rituxan

chemotherapy

max schlueter

xtandi