Linda Trummer survived mantle cell lymphoma | blastoid variant | doxorubicin | vincristine | cytarabine

DESCRIPTION

It was a stressful journey, but Linda Trummer survived Stage IV mantle cell lymphoma.  In 2015, she went to her primary care physician after discovering a lump on her jaw line.  That led to a diagnosis of a slow-moving blood cancer, MALtoma.  However, further tests revealed a lump under her left arm and the diagnosis was upgraded to Stage IV mantle cell lymphoma, a rare form of blood cancer.  She underwent R-Hyper-CVAD, a multi-faceted chemotherapy regimen and just two months later was declared to have No Evidence of Disease.  Linda still suffers from the many side effects of her regimen, but is happy to be alive, especially when her prognosis indicated she would only live for another 18 to 24 months.

Linda was close to 60 years of age when she first noticed a lump on her jaw line.  She initially attributed it to her getting old, but when one day she saw the lump was growing, she sought medical attention.  A PET scan showed that she had MALT lymphoma, also known as MALtoma, a cancer associated with the mucosa-associated lymphoid tissue.  Linda switched oncologists and the second oncologist called for additional tests.  They revealed a lump under her left arm, and she was diagnosed with Stage IV mantle cell lymphoma.

Linda was placed on a chemotherapy regimen which included rituximab, doxorubicin, cyclophosphamide, vincristine, dexamethasone and cytarabine.  That was followed by six lumbar punctures of methotextrate.

Through it all, Linda Tremmer was an active patient.  She sought to help other cancer patients on her floor by setting up an arts class.  She also wrote poetry and with the aid of a cousin in Oregon, the poetry was set to music, which was played for the patients, who enjoyed getting care from a fellow cancer patient.

Linda’s regimen led to her being declared NED after two months, but she needed to stay on it and suffered from numerous side effects.  She was placed on medication for depression and PTSD, although she says the latter rarely presents a problem.  When she was diagnosed, Linda was told she would live another 18 to 24 months, and prepared to die.  She sought palliative care and was placed in home hospice.  She completed her will, set up cremation and wrote farewell letters to dear friends.  But when she got to the 24-month mark, she realized she was still very much alive and started concentrating on living and not dying, which she said was much tougher than it sounds.

These days, Linda is happy to be alive, enjoys living with her three dogs and two cats, and advocates for cancer patients through the Leukemia & Lymphoma Society and has a support group on Facebook.

By way of advice, she says anyone diagnosed with mantle cell lymphoma should make sure they find an oncologist who knows how to treat mantle cell, which is much easier today than it was in 2015.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society  https://www.lls.org

TRANSCRIPT

Bruce Morton: Greetings, this is the @CancerInterviews podcast.  Thanks for joining us.  I’m your host, Bruce Morton.  We’re thrilled that our guest is here with us because she has overcome a great deal.  Linda Trummer of Minneapolis survived a rare form of blood cancer, Stage IV Mantle Cell Lymphoma.  It was quite a battle, but even as she went through it, she found the time and energy to help others.  Now is the time to hear her story, and Linda, welcome to Cancer Interviews.

Linda Trummer: Thank you, Bruce

BM: Linda, let’s start by learning a bit about you and your life away from cancer.  If you would, tell us about where you are from, what you have done for work and what you do for fun.

LT: I live in a suburb of Minneapolis, Minnesota, and I had a 25-year career working with families and children in poverty, and it truly was the joy of my life.  Then at the tail end of it, I found out I had cancer and needed to retire from that job.  I am on social security and living the good life.  For fun, I run a cancer support group on Facebook.

BM: For anyone on a cancer journey, that journey has a starting point.  For you, when did you notice something about your health wasn’t quite right?

LT: Initially, I noticed a lump on my jaw line.  I didn’t pay much attention to it because I was just about to turn 60 years old and I thought it was an ‘old lady bump’ or something.  Then I was leaving a meeting one day and noticed in my car’s rearview mirror that the lump was growing, so I went to my primary care physician, who sent me to get a PET scan.

BM: And is that what led to your diagnosis?

LT: That led to my first cancer diagnosis, which was MALT lymphoma, or, MALtoma.  It is a low-grade non-Hodgkins lymphoma, so it is slow-growing and it is associated with the lymph node tissue.

BM: When you received that diagnosis, were there treatment options or was there was just one way to go?

LT: I didn’t get to the point in which I was offered treatment options.  My second appointment with the oncologist, he had re-run my blood work and found something else that was not normal.  He took my hand and promised me and said they weren’t going to find anything more serious.  That was the moment I realized I was going to need a new oncologist because nobody can make those promises.  So, I went to a different oncologist with the same cancer center and she discovered a lump underneath my left arm.  I had a biopsy done on that lump and that was when they discovered mantle cell lymphoma, blastoid variant.

BM: For all of us when we learn of our cancer diagnosis, it is a horrific day.  We know that.  But each of us is different and each diagnosis is different.  Given your specific circumstances, how did you handle this awful news?

LT: Well, I was sitting in the oncologist’s exam room with my adult son and my best friend.  When the oncologist told me the news, I paused the meeting and I asked them both to leave.  I really was scared, but for some reason, I wanted to have the discussion without them present. 

BM: By the way, we hope you will find time to like and subscribe to our podcast.  And if you hit the bell icon, you will be notified anytime we post an interview.  We also want to remind you we are not distributors of medical advice.  If you seek medical advice, please contact a licensed health care professional.

So, Linda, I am thinking at this time, this is sort of a one-two punch for you.  Not only have you been diagnosed with cancer, but it is a rare cancer, which could bring on a separate level of degree of difficulty.  How daunting was it to be diagnosed with a rare cancer?

LT: I asked the oncologist before I left the exam room that day what happens if I don’t get treatment.  She said, “You will die.”  The prognosis was 18 to 24 months to live, this was in 2015.  So, I needed to undergo more testing and begin treatment.  I went on cruise control, and did what I was told.

BM: I have to ask, Linda, and again, this is something that is tied to a diagnosis of a rare cancer, but because it is a rare cancer, there may be a scarcity of specialists with the expertise to deal with your diagnosis.  That said, was it difficult to find a good care team, the right care team?

LT: Yes, but I had never been exposed to the cancer world before, and self-advocating and all the things we need to do as cancer patients, are things we need to do as cancer patients, I didn’t think about.  I didn’t ask a lot of questions.  I just trusted that I was in a good place and the doctor was honest with me.  She said their cancer had only had two patients with mantle cell lymphoma, so they didn’t have a lot of experience treating mantle cell lymphoma.  I just sort of trusted what was going to happen, and moved forward.

BM: Now, tell us about the treatment regimen because you said it was going to be quite lengthy.

LT: Yes.  It was pretty brutal.  I had R-Hyper-CVAD, which was pretty toxic chemotherapy.  The first word is for rituximab, which isn’t chemo, but a drug to help the cancer cells from growing.  Then I had cyclophosphamide, doxorubicin, vincristine, dexamethasone, and added to that was methotrexate and cytarabine.  I had six rounds of that, all in the hospital.  They were given at separate times, so it was one chemo at a time plotted out over a week.  I was in the hospital about a week each time I needed chemo.  Then there was a fear that it was going to get into my nervous system and go to my brain and so I also had six lumbar punctures with methotrexate.  It was kind of a debilitating chemo. 

BM: Concerning your regimen, what would you say was the toughest part?

LT: When I first went in to the hospital after they did the extra testing they needed to do, I went in October first, 2015, and didn’t leave until the end of October.  So, I was in the hospital for a full month because of the toxicity of the chemo, plus I started also getting infections that had to be treated, so it really was the infections, and I am talking about pretty severe infections, with temperatures up to 104 degrees.  They packed me in ice to get my body temperature down.  So, I dealt with this whole thing for about a year and a half being in and out of the hospital. 

BM: That sounds extremely difficult, and yet as you went through this, you found ways to help other patients.  What did you do and given what you were going through, how did you manage to do it?

LT: I am kind of a helper.  I like to connect people with resources, make sure they are being heard and valued, and as a cancer patient, I realized there were a lot of us that were going through a really scary time, especially being in the hospital.  So, I asked the charge nurse on the floor if I could start an arts program on a weekend day, so that anybody who showed up in the waiting room could participate, knowing that when you sit down and start drawing pictures you start having conversationsthat just naturally flow.  That was the first thing that I did.  Then, I am a writer, so, I loved writing poetry.  My cousin in Oregon picked up my first poem and turned it into music.  So, we produced a CD that we donated to the cancer center to help cancer patients for their music therapy program.  It was healing for me to be engaged in that way.

BM: This was a lengthy regimen you were on, but it appears you were moving in a good direction, and when did you sense you were making progress toward survivorship?

LT: At some point during my treatment, I contacted palliative care.  I had so many issues.  I had eye problems.  I had a lot of pain in my neck, the areas that were affected by the lymphoma, they hurt. So, I was on a lot of pain medication.  I realized at some point that the oncologist’s job is to treat the cancer and when other side effects started occurring, you probably needed someone else to take a look at you.  I learned about palliative care` and invited them to come and be a part of my medical team.  That was an amazing discovery for me. Near the end of my treatment, the doctor said I should go into home hospice care.  I spent three months in home hospice thinking I was going to die.  It wasn’t until I hit the 24-month mark, I was at 24 months and I was still alive.  I decided I needed to start living again.

BM: And how difficult was that?

LT: It was very difficult because I had just spent two years preparing to die.  I mean, I had my will drafted, I ordered my cremation package, I was writing farewell letters to friends.  I focused on dieing, and then I had to reshape my brain when people asked me how I was feeling, I was afraid to say, “I feel fine.”  So, I would say, “I guess I’m okay.”  That’s because I was afraid I would jinx myself if I said anything too positive; so, I had to relearn how to express myself.

BM: But another thing you eventually learned is that you had No Evidence of Disease.  How exciting was that?

LT: That came about two months into my treatment.  So, I wasn’t all that excited about it because I was still very, very sick and still thinking I wasn’t going to survive.  That’s because so many other things started going wrong with my body.  It wasn’t just the cancer anymore.  The chemo had taken a toll on me.  I would get up early in the morning and walk the halls and one morning I was walking and suddenly I looked up and caught eyes with a nurse, and just at that moment, my legs gave out and I needed to be wheeled back into my room.  So, I could walk, but I really had to learn kind of a depth perception, how to lift my lesg up high enough, even to step up on a curb.  That was pretty challenging for me.

BM: If we look at your health in terms of the here and now, what can you not do now that you could do before diagnosis?

LT: I am pretty healthy, but I have a lot of aches and pains.  I recently turned 70, but so maybe those aches and pains are part of getting old.  What I have heard from other cancer patients is the longer they survive, the more they recognize the effects of chemotherapy on their physical bodies.  Certainly, the emotional trauma is overwhelming.  I was delirious during my treatment because I was on so much pain medication.  I would see and hear things that weren’t there.  They brought in the cancer center psychiatrist at one point, probably about six or seven months in.  He talked to me for a bit and then said, “I don’t need to do anything now, but in a year, you’ll be seeing me,” and he was right.  I was diagnosed with the onset of depression, panic attacks, anxiety disorder and PTSD.  So, I had to deal with those mental health issues as well. 

BM: And are those still plaguing you today?

LT: I take some medication for depression and PTSD.  PTSD is a horrible diagnosis.  Very rarely do I have to deal with PTSD, though.

BM: That is good to hear.  Our guest is Linda Trummer of Minneapolis.  She has survived Stage IV Mantle Cell Lymphoma, a rare form of blood cancer.  We want to wrap up now and we conclude with the following question.  If you encountered someone who had just been diagnosed with cancer, they may have lots of questions and you would have lots of answers.  But if there was one bit of advice that you wanted to make sure stuck with the person to whom you were talking, what would it be?

LT: I am placed in that position quite often.  I am a first connection volunteer for the Leukemia & Lymphoma Society, so when someone is diagnosed with mantle cell lymphoma, I often get their information to call them anywhere in the country.  What I want to make certain first of all is that they have an oncologist who has experience treating mantle cell lymphoma.  They don’t need to fly to some fancy hospital for that treatment.  So much has changed since I was diagnosed in 2015 that there are a lot of different options now.  There is a lot of research out there and oncolgists have access to that information, so I suspect these days there are a lot more oncologists out there who can treat mantle cell.  Still, it’s important to ask that question.

BM: And we want to remind viewers and listeners, they can avail themselves of the long list of services from the Leukemia & Lymphoma Society at its website.  The address is https://www.lls.org.  Linda, now it’s time to go and we want to thank you very much for sharing your story, all you have overcome and all you have done and still do for those diagnosed with mantle cell lymphoma.  Linda, thanks so much for being with us on Cancer Interviews.

LT: Thank you, Bruce.   Appreciate it. 

BM: And we want to remind you that if you or a loved one are on a cancer journey, you are not alone. There are people out there like Linda Trummer and organizations like the Leukemia & Lymphoma Society that are there to help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society  https://www.lls.org

Linda’s Facebook Group: Mantle Cell Lymphoma: The Journey https://www.facebook.com/groups/122569668312501

SHOW NOTES

TITLE:  Linda Trummer, Mantle Cell Lymphoma Survivor – Minneapolis, Minnesota, USA

Not long after Linda Trummer discovered a lump on her jaw line in 2015, she was diagnosed with a rare type of blood cancer.  It was known as MALtoma, which refers to a slow-growing cancer of the mucosa-associated lymphoid tissue.  However, further tests led to a more severe diagnosis, that of Stage IV mantle cell lymphoma, blastoid variant.  Linda was told she had 18 to 24 months to live.  She was put on the R-Hyper-CVAD chemotherapy regimen.  In just two months, she was told there was No Evidence of Disease, but she has since suffered side effects.  Linda has been treated for depression and PTSD, but is happy to be alive and helps other cancer patients through the Leukemia & Lymphoma Society.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society  https://www.lls.org

Time Stamps:

01:48 Linda noticed a lump in her jaw line.

02:32 Said a PET scan led to a diagnosis of MALtoma.

03:32 A second oncologist discovered a lump under Linda’s arm, which led to a diagnosis of Stage IV mantle cell lymphoma, blastoid variant

05:32 Difficulties of being diagnosed with a rare cancer.

07:24 Linda describes treatment regimen.

09:04 Toughest part of treatment regimen.

12:05 Recalls moving toward survivorship.

14:30 When she learned she was NED, she still had a long way to go.

15:51 Linda compares her present to what it was pre-diagnosis.

17:22 Must take medication for depression.

18:48 Advice for others.

KEYWORDS (tags):

mantle cell lymphoma

blastoid variant

rituximab

doxorubicin

cyclophosphamide

vincristine

r-hyper-cvad

dexamethasone

cytarabine

lumbar punctures