Erin Cummings survived Stage 3B Hodgkin lymphoma | full body radiation | MOP chemotherapy | laetrile

DESCRIPTION

Erin Cummings is still going strong despite being diagnosed with Hodgkin lymphoma in 1972.  At age 15, she noticed a lump on her throat and another on her chest.  That led to a diagnosis of Stage 3B Hodgkin lymphoma.  She was shocked at her diagnosis but initially had trouble putting into perspective just what she was up against because she cancer was something suffered by old people.  Even though she achieved survivorship, she still deals with residual side effects from her treatment regimen.  Nonetheless, Erin has gone on to compete in eight marathons and has established a nonprofit which seeks to aid long-term survivors who also deal with the late effects of cancer treatment.

Erin Cummings of Vineyard Haven, Massachusetts was a freshman in high school when she saw that she had a lump on her throat and on her chest.  She didn’t think much of them until her sister saw them and brought it to the attention of their mother.  Erin was taken to a nearby hospital and a week later, she was diagnosed with Stage 3B Hodgkin lymphoma.  She said she benefitted from not knowing much about cancer because she thought it was something by old people and wouldn’t pose a problem for her.

This was in 1972, and available treatment options were much different than those available today.  Those options included cobalt radiation treatment, surgery, and a new protocol still considered to be in an experimental phase called chemotherapy.  Erin’s parents didn’t want her having anything to do with chemotherapy and temporarily considered taking her to Mexico to be treated with laetrile.

Erin underwent a lymphangiogram to determine the exact location of the cancer.  After that came full body radiation, surgery to remove her appendix and a form of chemo called MOP chemotherapy.

She said the side effects of the radiation and the chemotherapy were nasty, but there was also a difficult emotion piece.  Erin said in those days, people thought that cancer was contagious.  As a result, her friends were told by their parents to neither touch her nor get near her.  This combined with Erin being a teenager made her demoralizing cancer experience ever worse.

However, Erin Cummings got through the treatment and became cancer-free five years later, in 1977.  At the ten-year mark, she decided it was time to take control of her body, trained for, and eventually ran in her first marathon.  Before she concluded her competitive running, Erin was in eight marathons in Boston and New York City.

Because she is still encountering the late effects of her cancer treatment and has met others in the same position, Erin established Hodgkin International, a nonprofit which provides help to people around the globe experiencing similar late effects.

Additional Resources:

Support Group:

Hodgkin International: https://www.hodgkinsinternational.org

TRANSCRIPT

Bruce Morton: This is the Cancer Interviews podcast, and I’m your host, Bruce Morton.  Here is a statistic that should get your attention.  Our guest was diagnosed with Stage 3B Hodgkin Lymphoma in 1972, and she is still with us.  She is Erin Cummings of Vineyard Haven, Massachusetts.  Here is a story that should inspire anybody on a cancer journey, and in terms of hearing it, there is no time like the present.  Now, here she is, and Erin, welcome to Cancer Interviews.

Erin Cummings: Thanks for having me.

BM: Erin, before we hear about your cancer journey, we would like to learn about the part of your life that has nothing to do with cancer.  So, if you would, Erin, tell us about where you are from, what you have done for work, and what you like to do for fun.

EC: I am originally from Summit, New Jersey.  I have been a resident of Massachusetts, so I have been here since 1975.  I graduated from the College of the Holy Cross in Worcester, and went on study for my Master’s in Social Work at Simmons College in Boston.  I was married in 1983.  I have a family of a husband and four children who were adopted from South Korea.  They are grown up now, but we were very lucky to do an adoption four times and it has been the highlight of my life.  I think in terms of work these days is primarily focused around the non-profit I have founded, Hodgkins International.  There has not been much as of late, I work seven days a week.  I would love to say I am enjoying all kinds of hobbies, but I think with any non-profit startup, that’s the way it is.  When I do have time for fun, I enjoy a little bit of golf, although I would say ‘playing’ is a very strong word for what I do.  I am a beginner.  I do a lot of thrashing around, but I love it.  I enjoy going for walks.  Previously, I was a marathoner, having completed eight marathons over the last 40 years or so.  I am now just walking, but I enjoy it tremendously.

BM: For each of us who has gone through a cancer journey, there was that point in time in which we noticed something irregular about how health.  For you, when did something appear to be abnormal?

EC: That’s a great question.  It was during my freshman year in high school, which would have been 1972.  I didn’t have the typical symptoms, like many with Hodgkins.  I didn’t have the rash, the low-grade fever, the lethargy.  I had two lumps, one on my throat and one on my chest growing over the course of months.  I didn’t mention them to anyone.  I didn’t think I was sick, period.  So, I really kept them hidden until my sister noticed them as we were getting changed.  I told me mother and that was beginning of my cancer journey.  I was admitted to our local hospital the next day, and diagnosed with Stage 3B Hodgkin lymphoma, a week later.

BM: For all of us when we are diagnosed, it is not a question of whether it is good or bad news.  Of course, it is horrific news; but each of us is different and each diagnosis is different.  What went through your mind when you received this diagnosis?

EC: Well, I was 15.  For me, the word cancer was only used with old people who had to die of something.  I never thought it would be a word to apply to a teenager, much less me.  I was shocked and I really don’t think I fully understood what I would be dealing with.  Luckily, I focus at that point in my life was getting back to school and being with my friends and getting involved in high school activities.  So, I was blissfully, selfishly unaware.  Other than going through treatment, I think I pushed it away and made it a side part of my life and not the most important thing.  In a funny way, Bruce, I think that really helped me because it wasn’t my focus.  I did what I had to do and went on with my life.

BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the bell icon, so you will be notified when we post our next cancer interview.  We also want to remind we are not distributors of medical advice.  If you need medical advice, please contact a licensed a healthcare professional.

So, Erin, you have gotten this news, and we are not trying to make light of this.  They will probably sound primitive today, but in 1972, in terms of treatment options, what were they?

EC: At that point, the primary treatment for Hodgkins was cobalt radiation, and because the disease extended to my abdomen, I had full body radiation, down to my pelvic region.  That was the treatment of choice.  Chemotherapy was a fairly new treatment.  The protocols were considered extremely experimental.  My parents didn’t want me to have the chemotherapy.  It was very tough to endure.  They were actually considering having me go to Mexico for laetrile.  We’re talking about the old ages of chemotherapy treatments.  Having gone through it, I understand why, it was barbaric.  It was much different than the chemotherapy protocols that are used today, but those were the two main treatment options, they and surgery.  I had lymphangiogram to determine where the cancer was, and a staging laparotomy before removing my appendix and my spleen.  I don’t think they do that anymore. 

BM: And what the toughest part of your treatment regimen?

EC: By far, the chemotherapy, but initially I was pretty sick from the radiation because I got it on my stomach and it made me nauseous.  I would go to school and be okay for a couple hours and get a little hungry, then getting sick in the restroom.  It was tough.  It took me weeks to get used to the radiation.  However, it did nothing compared to the MOP chemotherapy, the ‘M’ stands for a drug that is essentially nitrogen mustard, which is what we use in warfare, you know, mustard gas.  One can imagine what that felt like, going through your veins and the rest of your system. It was tough, and in those days, we didn’t have anti-nausea meds.  There were no infusion units.  I got the chemo in the emergency ward of the local hospital on a stretcher.  One of the reason they did that is because people would become so sick from the chemo that they wanted to make sure to provide emergency care. 

BM: Even today, not just in 1972, but even today, certain cancers like liver cancer and lung cancer carry with them certain stigmas.  In 1972, did your diagnosis include a stigma when you encountered others?

EC: Absolutely.  In those days, people thought that cancer was contagious.  There wasn’t a good understanding of how one gets cancer.  To be honest, for all parents who said, “Don’t go near her, you could catch it,” as horrible as that was for me, as isolating as that was, I couldn’t tell them how I got Hodgkins, so I couldn’t alleviate their fear, no way I could reassure them.  That was difficult.  I don’t know to this day why I had Hodgkins, I don’t think I will ever know.  I did know then that it was non-contagious, but I didn’t know how I got it in the first place.  I think as a teenager, that feeling of isolation was probably the most difficult side effect that I dealt with.

BM: I know the answer to this yes-no question, but nonetheless, I want to hear yo elaborate, but has it ever occurred to you how different you regimen would be if you were diagnosed today instead of 1972?

EC: Absolutely, and I am thrilled that it is different.  It should be different.  We should have gotten this far since 1972 that I think it is great.  I think about it in terms of the late effects I suffered because I don’t think that today’s protocols are going to produce the same kind of late effects that I had.  There will be some.  I don’t know of any regimen that won’t have late effects.  It’s just the nature of the beast, I’m afraid, but I am thrilled that the kinds of things that I have been dealing with over the years will not be tomorrow’s challenges for other folks.

BM: Now, in terms of your journey and what you went through, I had mentioned earlier that there was this juncture in which you knew that something with your health wasn’t quite right.  Let’s flip the script.  When did notice things changing for the better?

EC: Initially, the five-year thing was a big deal.  You become cancer-free for five years and you are cured.  I don’t know if they still say that, but in 1977 they did, so that was a big jumping off point.  I think the next big hurdle for me was at ten years, and that was the moment in which I decided to run my first marathon.  My feeling was at the time was that cancer made me feel as though my body had betrayed me.  I had no control over what was happening.  I wanted to feel control again.  Doing a marathon for me was my way of saying that I am in charge now.  My body is going to do something good.  It is going to defy cancer, and that was a huge turning point for me.

BM: It’s been more than half a century since you were diagnosed, and I have got to believe that anytime somebody hears about your story, your longevity, that they are going to be inspired.  So, I have to ask.  How does it feel to be an inspiration to others?

EC: I think that might be a strong word, but I think that is a good thing.  I think longevity is not easy.  I never expected to live this long.  I think there are a lot of people responsible for my still being here.  It’s not just me.  I have had great medical care over the years.  Lots of friends and family rooting for me, so I should mention that I did not get here on my own, and that erodes some of my own feelings about being an inspiration because there are too many people that can take credit for that.

BM: Now we are going to wrap up, but before we wrap up, you have established a non-profit that exists to help those diagnosed with cancer.  If you would, tell us how Hodgkins International came to be and what it can do for others.

EC: Hodgkins International was founded in 2016.  It came about because there were a number of people like me who found each other primarily through Facebook and other platforms, looking for answers.  We were all having some very specific medical issues that didn’t seem to be tied to our earlier diagnoses, but we were not prepared for those issues.  When we could go to a doctor to say there is something wrong with me and it might be tied to my diagnosis, the doctors would say that was so long ago and not to worry.  That response turned out not to be true; but in the absence of good clinical information, we decided to do our own homework and that was really the foundation of our organization.  We want to make sure our fellow long-term survivors, of all types of cancer, understand the risks of their earlier treatments, that they know about late effects, that they are empowered to take steps to use their voices, so that doctors will listen to the prospect of a survivor suffering late effects and what to do about them.  We were founded because of the lack of opportunities provided by the medical profession for people like t get good information.  We have since grown tremendously.  We now have thousands of folks who look to us now.  We work really hard with other organizations to make sure that people have the tools they need to survive.  That’s our job.

BM: If somebody wants to find out more about your non-profit, what is its web address?

EC: It is www.hodgkinsinternational.org.

BM: Super.  Erin, that’s going to wrap things up.  Thanks for a terrific, and yes, I’ll say it, inspirational story.  Thanks for being with us on Cancer Interviews.

EC: Thanks for having me, Bruce.  I really appreciate it.

BM: And as we say when we conclude, if you or a loved one are on a cancer journey, you are not alone.  There are people out there like Erin Cummings, organizations like Hodgkins International, that are there to help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group: Hodgkins International

https://www.hodgkinsinternational.org

SHOW NOTES

TITLE: Erin Cummings, Hodgkin Lymphoma Survivor – Vineyard Haven, Massachusetts, USA

Erin Cummings is still going strong despite being diagnosed with Hodgkin lymphoma in 1972.  At age 15, she noticed a lump on her throat and another on her chest.  That led to a diagnosis of Stage 3B Hodgkin lymphoma.  She was shocked at her diagnosis but initially had trouble putting into perspective just what she was up against because she cancer was something suffered by old people.  Even though she achieved survivorship, she still deals with residual side effects from her treatment regimen.  Nonetheless, Erin has gone on to compete in eight marathons and has established a nonprofit which seeks to aid long-term survivors who also deal with the late effects of cancer treatment.

Additional Resources:

Support Group:

Hodgkin’s International: https://www.hodgkinsinternational.org

Time Stamps:

04:10 At age 15, Erin noticed lumps on her throat and chest.

06:53 Describes 1972 treatment options.

08:21 Recalls the toughest part of her treatment regimen.

10:06 Erin said she had to deal with a stigma that accompanied her diagnosis.

11:35 How a contemporary Hodgkin lymphoma treatment regimen is different from a 1972 regimen.

12:54 Remembers when she achieved survivorship.

14:23 Is asked how it feels to be an inspiration.

KEYWORDS (tags):

mop chemotherapy

stage 3b hodgkin lymphoma

laetrile

cobalt radiation

erin cummings

full body radiation

lymphangiogram

late effects