Jonathan Gegerson survived head and neck cancer | salivary duct carcinoma | taxol | herceptin

DESCRIPTION

In 2019, Jonathan Gegerson sought medical attention went he felt a lump on the right side of his neck.  After a couple of scans and a biopsy, he was diagnosed with salivary duct carcinoma, a rare form of head and neck cancer.  Jonathan survived, but not before enduring 67 sessions of radiation, 12 cycles of chemotherapy (carboplatin, taxol, herceptin) and seven surgeries.  He still undergoes a targeted therapy on a monthly basis, and the surgery has affected his speech and his diet, but Jonathan has resumed an active lifestyle that includes skiing and hiking.

Jonathan Gegerson thought his health was outstanding.  He was an active skier and liked to hike up Colorado’s 14ers (mountains whose peaks exceed 14,000 feet), but was perplexed when he discovered a lump on the right side of his neck.

He did not waste any time seeking medical attention and went to his primary care physician.  She conducted a physical examination and asked if Jonathan had recently undergone a root canal or some dental procedure that could result in an infection.  When he said no, the doctor sent Jonathan to an oncologist, who called for a CT scan, a PET scan and a biopsy.  That’s when he was diagnosed with head and neck cancer, even though at the time doctors could not specify what type of head and neck cancer.

His doctor in Colorado said Jonathan would need to undergo surgery, followed by radiation treatment and chemotherapy.  When Jonathan learned his care team had no experience with dealing with his type of cancer, he sought a second opinion from MD Anderson in Houston, Texas.  The doctors at MD Anderson suggested the same regimen, but Jonathan switched to them because they had experience dealing with salivary duct carcinoma.

His care team told him his treatment would result in a tightening of his face and would affect his speech, in addition to his ability to chew and swallow.

The chemotherapy regimen included carboplatin, taxol and herceptin.  He said the chemo left him weak and tired, especially two days after each round of treatment.  This, he said, was very frustrating because he was accustomed to being active.  During this time, the best he could do was go on short walks.

When Jonathan experienced a recurrence, he was placed on a targeted therapy of kadcyla and herceptin.  He eventually achieved survivorship but must continue to be on a monthly targeted therapy of enhertu and herceptin.

Jonathan Gegerson says his health is approximately 75 percent of what it was before his diagnosis, but he feels blessed that he is living, is back to hiking and skiing, and hopes to continue skiing until he is 90 years old.

Additional Resources:

Jonathan’s Book: “Perspective C,” available on Amazon and Kindle  https://a.co/d/4iW9BQ6

TRANSCRIPT

Bruce Morton: This is the Cancer Interviews podcast.  I’m your host, Bruce Morton.  Our guest on this episode has endured 67 sessions of radiation, 12 cycles of chemotherapy and a total of seven surgeries.  All this after being diagnosed with salivary duct carcinoma, a form of head and neck cancer; but we are very happy to report he is still with us.  He is John Gegerson of Parker, Colorado, and it is time to hear his story.  Jonathan, welcome to Cancer Interviews.

Jonathan Gegerson: Thank you, good morning.

BM: We want to start off as we always do by learning something about you, Jonathan.  So, if you would, tell us a bit about where you are from, what you have done for work, and what you like to do for fun.

JG: I am originally from Florida, but I have been living in Parker, Colorado for about 14 years.  I did spend some time in Vail, Colorado, and I was a skier, and an active skier, which I still am today.  I love to spend time with my wife and kids.  My background professionally is my working in the dental world and manufacturing for many, many years. 

BM: Your health prior to your diagnosis.  How was it?

JG: Oh, I was very active, so my health was excellent.  I was a very active person, exercised at least four or five times a week, used to do cross-fit and hiked 14ers, and so I was a very active person.  My health was very, very good.

BM: For all of us on a cancer journey, there was that time in which we noticed something about our health that wasn’t.  For you, what went wrong?

JG: In April of 2019, I noticed this lump on the right side of my neck, and I wondered, what is this lump?  That’s what sent me to my primary care provider.

BM: And what happened when you went to your primary care provider?

JG: She examined me, gave me a physical exam, and asked me if I had undergone some recent dental work, a root canal or any kind of infection, maybe a sinus infection, and my answer to all those questions was ‘no.’  So, then she said it could be cancer, but that I needed to undergo further testing. 

BM: And the further testing was done by a specialist?

JG: The further testing was an ultrasound to see if there was a lymph node.  Then she sent me for a PET scan.  Then I saw a radiologist where they did a biopsy of the lymph node and that’s what confirmed I had cancer.

BM: We already know this was terrible news, a horrific day, but when you got the news, how did you handle it?

JG: My initial reaction was one of shock because I was so healthy and so active.  I never smoked, and I had maybe one drink a week.  So, it was very shocking to me, and I immediately began to go down that path of thinking, “Oh, my gosh, this is it.”  I started to go down that path, but I had to catch myself and say I can’t tell myself “This is it,” yet.  I have to find out what all this means because I didn’t know what it meant at the time; I just knew I had been told I had cancer, but they didn’t know what type of cancer, just that it was in my head and neck area.

BM: By the way, we hope you will find time to like and subscribe to our channel.  And if you click on the bell icon, you will be notified whenever we post an interview.  We also want to remind you that on Cancer Interviews, we do not provide medical advice.  If you seek medical advice, please consult a licensed health care professional.

So, Jonathan, if you would, tell us what led to your learning what type of cancer with which you were diagnosed?

JG: After I was told it was head and neck cancer, and the PET scan indicated it was confined to the right side of my neck, I immediately went to an oncologist who talked to me about a treatment plan.  It included chemotherapy and radiation, but what was needed first was surgery.  He referred me to a head and neck surgeon who sent me for a CT scan.  He said the scan showed a tumor, but could tell right if it was in the gland, but the first step would have to be surgery to remove the primary tumor.  That was my first conversation.  The oncologist I saw ordered a heck and neck specialist for me.  I want to share that I ended up opting not to be treated by that oncologist and that head and neck specialist.  I decided to go for a second opinion with MD Anderson in Houston.  That’s where I saw a head and neck specialist and an oncologist.  They decided the same thing: Surgery first, then radiation and chemotherapy.

BM: Jonathan, at any time did they tell you how your life would change from this procedure, what the effect of it would be?

JG: I had surgery in Houston in July of 2019.  They said I would be somewhat tight in the neck area, that the radiation will affect my jaw opening, and that I could see some fibrosis of the muscles in the jaw area as well; but other than that, they didn’t mention other side effects I could have. 

BM: There are many types of chemotherapy regimens out there.  Yours consisted of what?

JG: Initially I was using carboplatin and taxol, plus Herceptin.  I got that for twelve weeks.  And then, as things progressed, and there was a recurrence, I started getting treated with kadcyla, which contains Herceptin.  That is more of a targeted type of therapy.  I was on that once a month for quite some time.  Now I am on a targeted therapy called enhertu, which is also a type of chemotherapy that has Herceptin.

BM: Will you always be on that targeted therapy?

JG: My cancer is so rare, and my oncologist in Colorado shared with me that out of four million people, ten to eleven people get it every year.  Because of that, there is very little known about salivary duct carcinoma.  As a result, the answer is ‘yes,’ I expect to be on this targeted therapy once a month until some research comes out saying I don’t need to do this anymore.

BM: Because you were diagnosed with a rare cancer, I always think of such diagnoses as packing a lethal one-two punch.  It is bad enough that you were diagnosed with cancer, but to make matters worse, there are not a lot of doctors out there with the expertise to treat a rare cancer.  In your case, were you pleased with your care team?

JG: Great question, Bruce.  Initially, I was not comfortable with the first two doctors I saw in Colorado.  I felt that they did not have enough experience with this type of cancer.  One of the questions I asked was, “How often do you see this?”  My oncologist said he had seen another case of salivary duct carcinoma.  So, when I went to Houston and met with the doctors there, I felt very comfortable.  They had seen my cancer, even though they said it was so very rare.  I concluded I needed to go somewhere where they had specialists, and for me, that ended up being MD Anderson in Houston.

BM: When you look back on your chemotherapy regimen, and we can agree that it is never pleasant, but it is necessary, what was the toughest part?

JG: The toughest part was two after the chemo.  That’s when I would not feel very well.  I felt very tired and very weak four or five days after the chemotherapy.  That was hard for me because I am very active person.  Mentally, I wanted to get and go do things.  Physically, the body was not cooperating.  I would do my best to go for walks, but that was the hardest part.

BM: We have talked about the physical hurdles you encountered, but what about the mental and emotional space in all of this?  You mentioned your wife, but from what other sources did you get support?

JG: I have four kids, so my kids were constantly calling and checking on dad and encouraging me.  I am a man of faith, I absolutely was in prayer and just really committed to the idea that this was not ‘it,’ and I was going to get through this.

BM: Now let’s turn this journey in a more positive direction.  I am guessing that with the passage of time, you began to sign see signs that indicated you were moving closer to survivorship.  What was that like?

JG: Once I finished the initial treatment of radiation and chemotherapy and came back to Colorado from Houston and healed from the radiation, I started to feel better, I got moving again and I was exercising again.  This was great.  I concluded life was worth living and it was worth going through the pain and suffering to get to the other side.  I started to rejoice and do my daily activities again and work and exercise and get engaged with my family and be the husband and dad that I wanted to be.  I thought, “Hey, I am going to get through this!  I am living.”  That was a wonderful emotion.

BM: Jonathan, I want you to think back to what your health was like before you were diagnosed.  Think of that as like 100%.  Knowing what you know about your health now, how close are you to 100%?

JG: Today I would say I am 70-75% of what I was.  That’s simply because I have had four recurrences and I am still on a therapy once a month, but I have survived every recurrence.  I tell people even though I am getting chemo, I am doing it with a smile because I fully believe I can survive, and I am going to live a long life.  I always tell people I want to keep skiing until I am 90 years old.  My health has changed, but I am still living life.  I have to change some things.  My speech has been affected from my surgeries.  My eating has been affected by it.  I can’t eat what I used to eat because of chewing, and my swallowing has been affected, but overall, I am living. 

BM: Jonathan, we are going to wrap up and we will conclude the way we almost always do, with this question.  If you encountered someone diagnosed with salivary duct carcinoma, that person may have lots of questions.  You may have lots of answers, but if there is one thing that you want to make sure the other person remembers as they walk away, what would that be?

JG: I would say always get a second opinion.  Do not rush down the path of treatment.  Get a second opinion and really every question you can possibly think of before you take the plunge.  Make sure you are comfortable with you doctor and comfortable with the treatment path.

BM: That’s outstanding advice to cap an outstanding story.  Jonathan, thanks so much for being with us on Cancer Interviews.

JG: Thank you, Bruce.  Appreciate the time and the opportunity.

BM: And we want to remind you as we always do when we conclude that if you or a loved one are on a cancer journey, you are not alone.  There are people out there like Jonathan Gegerson, who can provide information and inspiration.  So, until next time, we’ll see you on down the road.

Additional Resources:

Jonathan’s Book, “Perspective C”, available on Amazon and Kindle

https://a.co/d/4iW9BQ6

SHOW NOTES

Jonathan Gegerson, Head & Neck Cancer Survivor -  Parker, Colorado, USA

In 2019, Jonathan Gegerson sought medical attention went he felt a lump on the right side of his neck.  After a couple of scans and a biopsy, he was diagnosed with salivary duct carcinoma, a rare form of head and neck cancer.  Jonathan survived, but not before enduring 67 sessions of radiation, 12 cycles of chemotherapy and seven surgeries.  He still undergoes a targeted therapy on a monthly basis, and the surgery has affected his speech and his diet, but Jonathan has resumed an active lifestyle that includes skiing and hiking.

Additional Resources:

Jonathan’s Book, “Perspective C,” available on Amazon and Kindle  https://a.co/d/4iW9BQ6

Time Stamps:

02:35 In 2019, Jonathan noticed a lump on the right side of his neck.

03:26 After a physical exam, he was told by his doctor that he could have cancer, a diagnosis later confirmed after some scans and a biopsy.

04:34 As one with a healthy lifestyle, he was shocked by his diagnosis.

06:21 He learned he would need surgery, radiation and chemotherapy.

08:11 Changed his care team after seeking a second opinion.

09:13 Doctors told Jonathan how treatment would change his life.

12:10 Says he believes he will always be on his present targeted therapy.

13:16 Is asked if he liked his care team.

15:55 Names the toughest part of his chemotherapy regimen.

19:03 Jonathan recalls when he felt he was moving closer to survivorship.

21:30 Compares his present health with his health before his diagnosis.

24:00 His advice to others diagnosed with salivary duct carcinoma.

KEYWORDS (tags):

salivary duct carcinoma

head and neck cancer

jonathan gegerson

carboplatin

taxol

herceptin

bruce morton

kadcyla

enhertu

fibrosis