Living with AYA cancer: Let's talk

Welcome to the AYA Cancer group – a place to just talk about anything and everything.

Pull up a chair and introduce yourself. What is your cancer story? What’s on your mind?

Hi @haileyc @jessica0 @leukskywalker @stephtubman @gulstada, let's get this conversation started. What's your cancer story?

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Hi! I'll write more later, but the basic story is that I was diagnosed a year ago at age 33, I did five months of chemo, three months of immunotherapy, rads, and surgery, and I'm on ongoing adjuvant treatment . I am always interested to connect with other cancer survivors!

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Hi everyone!
I was diagnosed with stage IV melanoma at 29 years old — in 2018. Had tumors in my lungs, heart, brain and various soft tissue. I did SRS radiation for my brain and immunotherapy for a little over a year. Been cancer free since October of 2019.

Always looking for other fellow cancer survivors! Especially ones that can appreciate the dark humor. I just got a new dog last year and named him after my immunotherapy drug – Nivo! (He’s the border collie in the photo!)

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@stephtubman

Hi! I'll write more later, but the basic story is that I was diagnosed a year ago at age 33, I did five months of chemo, three months of immunotherapy, rads, and surgery, and I'm on ongoing adjuvant treatment . I am always interested to connect with other cancer survivors!

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What immunotherapy did you do?

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@haileyc

What immunotherapy did you do?

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I did cemiplimab which is a PD-1 checkpoint inhibitor like pembrolizumab.
How about you?

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Hello!
I was diagnosed with a Pilocytic astrocytoma in the brainstem at 3 years old in 2008. I have been battling cancer for 12 years!! I have had lots of chemotherapy, radiation, lots of pill taking, and surgeries. I just had neurosurgery in May 2020. I have been on chemo for the last 3 years, and just had shrinkage from my latest MRI scan. If you have any questions or would like to get to know me more, feel free to reach out! I am always looking for survivors or warriors to connect with!

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@stephtubman

I did cemiplimab which is a PD-1 checkpoint inhibitor like pembrolizumab.
How about you?

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Nice! I did one dose of the combo (ipilimumab/nivolumab) and then a year of just nivolumab because the combo was too much for me!

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@haileyc, love the pic of your pooches. Pets are amazing when we're ill and going thru tough stuff. How have your dogs been part of your treatment and recovery?

@ana15vankoeverden, Great news on the shrinkage. Have you been at the same treatment center since diagnosis in 2008? You must know everyone! What things are changing or would you like to see change as you move from peds to AYA cancer care?

@stephtubman, may I ask what adjuvant therapy you're doing? How's it going?

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I have not been on the same treatment. I am in my 8th line of treatment! I have never really knew of anyone with long journeys or tumors like mine. So I would really like to find some people I can relate to and they understand what it’s like too! Like same age, tumor, length of treatment, etc.

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@colleenyoung

Hi @haileyc @jessica0 @leukskywalker @stephtubman @gulstada, let's get this conversation started. What's your cancer story?

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In 2011 I was diagnosed with undetermined colitis and was prescribed Humaira as an immune suppressant to manage the symptoms. For five years it was managed and during that time I was able to live my life by getting married and starting my family by having a little boy with a little girl on the way.
When I was in my third trimester of pregnancy with my little girl I was extremely uncomfortable with coughing and itching everywhere. I did delivered a beautiful & healthy little girl on October 2016, but my symptoms seemed to be getting worse. After many doctor visits they conducted a biopsy & then they diagnosed me with stage four Hodgkin’s Lymphoma cancer on November 2016. My daughter was only three weeks old and my son was close to two.

After the second chemo treatment I came home and had the worst back pain that would also shoot down my legs. In December 2016 they diagnosed me with Transverse Myelitis and I was paralyzed from the waist down. I spent a month in the hospital after that & did physical therapy daily while continuing my chemo. My husband traveled between both towns to visit me and my in laws would bring my children in once a week to visit. I ended up heading back home in the New Year with one foot brace and a wheeled walker.
After a few scans it started showing that my cancer was not responding to the chemo anymore. So we tried a different chemo and that one didn’t work either so we went back to the Mayo Clinic. They suggested that we get started on the paper work process for a stem cell transplant and in August 2017 I received my Stem cell transplant. After the stem cell transplant they had me do radiation on my chest too.

In the beginning of 2018 I got influenza A, I also became allergic to the maintenance chemo & soon after I became septic. The doctors allowed my children to visit me & the moment they walked in my room was the first time in days I sat up and visited with anyone. My husband still believes that bringing our children up to my hospital room was the medicine I needed to help me keep fighting. After that I got better and was discharged from the hospital so I went back to The Mayo Clinic to visit about what our next step might be. At this point my Mayo doctor told me that I have stage four Refractory Hodgkin’s Lymphoma cancer & she recommended an immunotherapy treatment called Keytruta (pembrolizumab).

The immunotherapy was going great, but then it allowed my Crohn’s disease to start flaring up. I had to make a decision if I would like to stop the immunotherapy or would I like to get ileostomy surgery. In July 2019 I decided on the surgery to help me better control my Crohn’s disease which would allow me to continue my immunotherapy to help control my cancer.

It’s now March 2021 and I am now living a better quality of life than I ever have. My goal in life is to be able to spend as much time with my family/ loved ones and watch my children grow up. My son just turned six and my daughter is four. I also have two little dogs who act like my children from time to time, but my family keeps me busy and they are my reason I keep going. They are a great distraction too.

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Hi everyone! My story is that I got sick in my junior year at ASU and was diagnosed with myelodysplastic syndrome in 2017. I had a stem cell transplant from a donor in Poland in January of 2018 and was able to go back to school later that year, and finish my degree in 2019. Activism has been a huge part of my healing process and I have been volunteering and involved with an organization called Be The Match since diagnosed. BTM is the organization that registers bone marrow donors for these transplants and it is so amazing to be able to give back this way and honor my donor. The hardest part of this whole process for me was stopping my education for treatment and then reintegrating into society and figuring out what I was/am supposed to do with my life post-treatment (especially since part of that healing has occurred during covid). The friends I have made in the Mayo support group have been invaluable before, during, and after treatment. I never felt alone with them, and I hope that anyone who joins us here or in our virtual meetings can find the same solidarity and kinship that I have. If you relate to anything I have said or want to know more, please feel free to reach out!

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@jessica0

In 2011 I was diagnosed with undetermined colitis and was prescribed Humaira as an immune suppressant to manage the symptoms. For five years it was managed and during that time I was able to live my life by getting married and starting my family by having a little boy with a little girl on the way.
When I was in my third trimester of pregnancy with my little girl I was extremely uncomfortable with coughing and itching everywhere. I did delivered a beautiful & healthy little girl on October 2016, but my symptoms seemed to be getting worse. After many doctor visits they conducted a biopsy & then they diagnosed me with stage four Hodgkin’s Lymphoma cancer on November 2016. My daughter was only three weeks old and my son was close to two.

After the second chemo treatment I came home and had the worst back pain that would also shoot down my legs. In December 2016 they diagnosed me with Transverse Myelitis and I was paralyzed from the waist down. I spent a month in the hospital after that & did physical therapy daily while continuing my chemo. My husband traveled between both towns to visit me and my in laws would bring my children in once a week to visit. I ended up heading back home in the New Year with one foot brace and a wheeled walker.
After a few scans it started showing that my cancer was not responding to the chemo anymore. So we tried a different chemo and that one didn’t work either so we went back to the Mayo Clinic. They suggested that we get started on the paper work process for a stem cell transplant and in August 2017 I received my Stem cell transplant. After the stem cell transplant they had me do radiation on my chest too.

In the beginning of 2018 I got influenza A, I also became allergic to the maintenance chemo & soon after I became septic. The doctors allowed my children to visit me & the moment they walked in my room was the first time in days I sat up and visited with anyone. My husband still believes that bringing our children up to my hospital room was the medicine I needed to help me keep fighting. After that I got better and was discharged from the hospital so I went back to The Mayo Clinic to visit about what our next step might be. At this point my Mayo doctor told me that I have stage four Refractory Hodgkin’s Lymphoma cancer & she recommended an immunotherapy treatment called Keytruta (pembrolizumab).

The immunotherapy was going great, but then it allowed my Crohn’s disease to start flaring up. I had to make a decision if I would like to stop the immunotherapy or would I like to get ileostomy surgery. In July 2019 I decided on the surgery to help me better control my Crohn’s disease which would allow me to continue my immunotherapy to help control my cancer.

It’s now March 2021 and I am now living a better quality of life than I ever have. My goal in life is to be able to spend as much time with my family/ loved ones and watch my children grow up. My son just turned six and my daughter is four. I also have two little dogs who act like my children from time to time, but my family keeps me busy and they are my reason I keep going. They are a great distraction too.

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@jessica0, I'm sure you and @haileyc and @stephtubman have immunotherapies experiences to share.
I bet your son and daughter are your inspiration and distraction from cancer. But I can also imagine that discovering cancer while pregnant compounds all the worries of both cancer and parenthood. Where did you find your emotional and mental support?

Hey @taybro4, congrats on finishing school and your activism. I hope you'll let other AYAs at BTM know about the Mayo support group here and the Zoom meetings. COVID has interrupted life for everyone around the globe, but for the pandemic to hit just as you were figuring out post-treatment life is also a double blow. Has the fact that the world kinda stopped or slowed down, too, been helpful and given you more time to reflect and make a plan? Or has it been like holding back a bull ready to get out of the pen? What did you study as ASU?

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