Donna’s Stage 1-2 PMBCL Non-Hodgkin’s Lymphoma Story

Donna was diagnosed with stage 1 to 2 primary mediastinal B-cell lymphoma, a subtype of non-Hodgkin’s lymphoma.

She describes undergoing 6 rounds of chemo, how she dealt with hair loss, parenting with cancer and advocating for herself as a patient. Thank you for sharing your story, Donna!

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Diagnosis

How did you get diagnosed?

When I got out of the shower in the evening, I noticed a lump in my throat that I did not see the day before. I pushed on it, and it felt pretty hard, but it did not hurt.

My heart sank a bit because I instinctively felt that something was very wrong. My first thought was thyroid cancer. I didn’t know what it was, but I knew it was not good.

I went to the ER the next day in hopes of getting a quick answer, as well as a benign answer. They did an ultrasound and told me to see an ENT (Ear, Nose, Throat) specialist. My blood work came back normal except for slightly elevated LDH (in the 300s).

They told me that was nothing and not to worry. They did not give me any information about my lump, which I thought was odd. 

When I got home, it felt like the longest night of my life waiting to see the ENT. I did not get much sleep that night. At that time, I had no other symptoms other than the lump.

What were your treatment options?

I had 3 choices:

1. DA-R-EPOCH: Inpatient and the possibility to avoid radiation
2. R-CHOP and radiation: One day of chemo instead of 5 days of inpatient, but radiation at the end would be necessary
3. A research study that was similar to R-CHOP, also needing radiation.

I really didn’t want to do the inpatient chemo, but avoiding radiation was important to me. I did not want to do a research study when there was already an option available that provided a 92% cure rate.

It took me 5 weeks after my diagnosis to research all of my options, including natural options with no chemo, before making my decision. In the end, DA-R-EPOCH gave me the best chance of a cure while also avoiding radiation.

Chemotherapy and Side Effects

Describe your chemotherapy regimen

I had 6 rounds. Each round was every 3 weeks. I had 1 week in hospital and 2 weeks at home. The first week was the infusion. I did end up with side effects during the infusion, but once I got home from the hospital, the second week was the worst part of it.

The third week was easier, and I was almost normal after rounds 1 and 2, but I still suffered effects in the third week during rounds 3 through 6. The effects were less severe than Week 2, but still hard nonetheless.

• Treatment:
  • Chemotherapy: R-EPOCH (Dose-Adjusted)
  • 6 cycles, each cycle = 3 weeks
    • Week 1: Continuous infusion through PICC line (arm) or port (chest) for 24 hours, lasting 5-6 days
    • Week 2: Side effects tend to kick in, ranging from nausea to mouth sores
    • Week 3: typically the healing week when blood cell counts recover
      • Note: If your white blood cell count (WBC) doesn’t rebound back into the standard range, your next chemo cycle may be delayed.

However, chemo has a cumulative effect, and by later rounds of chemo, I was not back to my normal self again before the next round. The later rounds are harder than the earlier ones, but there was a trade-off. The fear of the unknown was replaced by the more intense side effects.

What were the side effects?

• heartburn
• sore throat
• lightheadedness
• vision changes
• mood swings
• temporary neuropathy (improved after they lowered vincristine chemo drug dosage
• bone pain (Neulasta shot)
• nausea (by Day 3 of chemo)
• fatigue
• slow heart rate (occasional)
• low white blood cells/neutrophils
• runny nose
• puffy face/eyes (from the steroids)
• bladder pain (irritated by drugs)
• when hair fell out, scalp felt a little pain

Describe the side effect cycle

The side effects were predictable each cycle, with a little more intensity during the later rounds of chemo. I actually named the different phases because they were so reliable.

Phase 1 started the day after chemo. For me it was after my 5-day hospital stay. I named Phase 1 the “meat grinder” phase. It felt like I went through a meat grinder. Basically, everything hurt.

The second week after chemo, Phase 2 began. I called Phase 2 “the stratosphere.” This was when my hemoglobin would tank, and I would feel dizzy and weak as if I did not have enough oxygen. I was stubborn, though, and refused blood transfusions.

After that came Phase 3: “bio warfare.” That was when I became neutropenic and had no immune system, so contracting any germs would have been extremely dangerous. I would take Neulasta shots to increase my white cells.

Those shots lead me into my last phase: “snot city.” This was when my eyes and nose would drip for over a week due to my allergy to the shots. 

The chemo cycle was as predictable as Old Faithful! Once in a while, I would get something new like a mouth sore, but for the most part, I could count on those 4 main events.

»MORE: Cancer patients share their treatment side effects

Were you prepared for the side effects of treatment?

I was not sure what to expect until the first round was over and I was beginning the second round. I felt more calm going into Round 2 because I knew what to expect, and my side effects were very predictable. Once I knew what to expect, I felt more prepared. 

What helped you the most in dealing with side effects?

Summary: 

• Anti-nausea: Ativan (through an IV)
• Bladder irritation: oxycodone
• Mouth sores: lidocaine, magic mouthwash, Colgate Orabase, canker sore patches, gargling baking soda and warm saltwater
• Neulasta bone pain: oxycodone

It was great to refer back to the journal in my next round so that I could anticipate how long I will be dealing with a certain side effect. It gave me comfort because it reminded me that it would soon pass.

I kept my job since it was a work-from-home job. Working helped me maintain a sense of normalcy in my life. I brought my computer to the hospital, and it helped me pass the time.

I also had a coloring book. My husband stayed with me the entire time, which was also extremely helpful. I prefer to say, “We dealt with chemo.” Everyone should have at least one person to help them through this process. Having him there kept me calm and prevented the loneliness that would have made my thoughts wander down a destructive thought process.

»MORE: Patients talk about working during cancer treatment

How was the port?

Since I declined antivirals, antibiotics and anti-fungal medication, I opted for a port because there was a smaller risk of infection. Also, due to the countless amounts of blood work needed, it spared my veins and made access very easy. I have no regrets opting for the port.

What was the worst part of treatment?

Once I got a handle on the side effects and the fear of the unknown diminished, it soon became a fear of not surviving cancer or treatment failure.

Aside from the emotional aspect, the worst part was temporarily being physically unable to do the things I used to do. Whether it be eating (mouth sores), fatigue, dizziness or nausea, there was always a challenge.

I became too weak to stand in the shower, so I had to sit. I could not lift plates from the dishwasher into the cabinet because they were too heavy. It would take me several minutes to climb the steps.

Losing the ability to use your body in the way you were used to was the hardest, followed by the fear of not knowing when or if you will ever get back to normal again. 

My next scan was after my last round of chemo, and believe it or not, I was terrified. However, that scan came back clean as well. So did the 6-month scan after that, the 1-year scan after that and final 2-year scan. All were equally hard in their own way.

Describe the waiting periods after tests and scans

My hospital tried to get the results in the same day, but the waiting period was extremely hard. At any moment, your life could go on happily, or it could turn upside down again at the drop of a hat.

Wondering which path your life was going to go was incredibly hard. Since your chances of relapse is next to nothing after 2 years, my 2-year scan left me with a very surprising side effect.

Once I got the clean scan, I felt fatigued, depressed and almost angry. It was almost as if I had been happily running on adrenaline during my 2 years post chemo and once I reached the 2-year mark and everything was likely to remain good, the adrenaline left my body and

I was feeling terrible. I couldn’t understand why I wasn’t over the moon upon hearing my results and good news. It took me a few days to snap out of it.

»MORE: Dealing with scanxiety and waiting for results

Losing Hair from Chemotherapy

Describe the hair loss

I had very long, beautiful, brown hair, and I was really upset about losing my hair at diagnosis. However, after my hair was gone, I was surprised that I did not wear my wig very much.

Though my wig was made from my own hair, it was more comfortable to wear little cotton hats instead. I never anticipated I would go without my wig, and I only wore it a handful of times after chemo was done.

You had a wig made from your own hair

I did a search online for places that make wigs out of your own hair. I provided my hair and a donor who had similar hair as me to create my wig. We had to send it through the mail, which made me nervous. However, when my wig arrived, I instantly burst into tears.

I can’t explain the feeling I had when I saw my hair come back to me in a form that I could use.

I hugged it for about 5 minutes!

Support and Reflections

What helped when you lost all your energy?

Resting and knowing it will pass soon.

What was the biggest surprise?

Everything was a surprise because I was drifting into a land of unknown.

The biggest surprise was my clean scan after 2 rounds. I did not expect that at all. Another surprise was actually seeing the good in my situation and appreciating the experience. It took until after my last round of chemo to almost be grateful for what had happened to me.

Keeping a journal was a great way to vent my emotions without subjecting anyone to my anger or whatever I happened to be feeling that day. I am pretty sure I felt every emotion possible at some point during the journey.

Anger, fear, sadness, strength, weakness, loss, triumph, pain, loneliness, boredom, stress, fatigue, sociable, antisocial, happy, stir-crazy, peaceful, annoyed, determined, defeated, pathetic, delighted and close to God.

I documented symptoms and vented about how I felt. It was very therapeutic. I also limited who I spoke to. I could not handle speaking to every single one of my friends and family members about the same thing over and over again. I kept about 5 people super close, and they provided updates to the others for me.

Giving yourself space

I didn’t take any calls or answer too many texts. This was because my emotions were all over the place. I did not want to subject people to whatever might come out of my mouth, nor did I want to go over everything with everyone. 

I preferred not talking to anyone about it, and I really did not like when someone asked me, ‘How are you?’

I know they meant well, but to me, it was opening a can of worms. It was overwhelming to rehash everything over and over.

My mom, my husband and 2 of my friends were the only people I cared to speak to. My mom provided updates to my dad, sister and anyone else who was checking in. I appreciated the outpouring of love in the form of cards, calls, texts, flowers, gifts, etc. I never felt so loved in my life. I was just physically and mentally unable to speak to everyone once treatment started. 

What gave you the best mental and emotional relief?

The best relief for my fears and emotions was talking to people who had gone through it, gotten to the other side and are able to enjoy life with no issues.

I found the primary mediastinal large B-cell lymphoma board on Facebook and met many people who shared their experiences with me. I would post a question and have 80 answers within the hour. I really owe my life to them because if I hadn’t heard so many success stories, I probably would not have done the chemo. 

When I finally accepted my situation and completed my research, I was ready to start chemo. I felt true acceptance when I chose my chemo regimen and my path forward was finally clear. My friends on the group also helped me during chemo by assuring me that the side effects would go away. They helped me decide between a port or a PICC line.

They shared my [sorrow], tears, triumphs, clean scans and every stage start to finish. They understood me and could actually provide helpful advice that calmed and comforted me. My family took care of me physically, and my friends on the Facebook page took care of me emotionally. 

What do you wish you had known before you began chemo?

That none of my worst fears would come true (regarding side effects, etc.). That I would love the person I became after chemo was finished, that it changed my life for the better, that I am stronger than I thought, that there are people who love me more than I thought, and that there is a plan and a reason for everything, even if it doesn’t make sense at the time.

Both chemo and holistic body support in conjunction were necessary and essential to my success. I feel back to my normal self most days, and some days even better than before. Recovery was a sawtooth pattern always trending up. I am 3 years out now and have no real complaints.

» MORE: How to Be Your Own Advocate

How important is it to have caregivers?

It is absolutely essential.

Can you work during treatment?

The only reason I was able to work was because I had a work-from-home position with my company. It became more difficult to work during later rounds of chemo, but I still did not miss a day. I would not recommend working outside of the house.

There are too many germs, and the immune system is nonexistent at times. I also was unable to operate a car during treatment and worked from my bed.

»MORE: Working during cancer treatment

Advice for others going through what you went through

A quote from my chemo journal:

Remember that no matter how bad things may seem at first, you really don’t know the outcome until you get there. Going through chemo to fight cancer was not nearly as bad as I made myself believe it would be. None of my original fears came true, and I have come out on the other side better than before.

Most importantly, no matter how bad this ordeal was in the midst of it, I understand why it happened. The person I am today as a result of this experience is the person I needed to be. For that, I am grateful.

Parenting with Cancer

How old was your kid when you were diagnosed?

My son was 4 years old and turned 5 during treatment.

What are extra considerations when you have to parent while undergoing treatment?

Trying to keep germs away. It is important to stay isolated if your child comes home with a cold. We were lucky that my treatments were over the summer, so we could minimize contact with people as needed. It would be more difficult with school-aged children.

»MORE: Parents describe how they handled cancer with their kids

Any advice for how to ask for help?

I would not hesitate to ask for help. You are fighting for your life, and that is all you should be focusing on. If friends or family live nearby, I would suggest taking any help you can get.

Before I started chemo, we had all the days in the calendar marked for both sides of the family, so everyone knew in advance what to do and when. I would suggest planning ahead because things get tough during treatment, so it is good to be prepared ahead of time.

Take care of yourself first

It is inevitable that you will feel guilty for not being able to spend as much time with your children during chemo as you would like, however try not to beat yourself up too much.

Your job is to beat cancer so you can stay alive for your children. 

Chemo goes very fast, even though it seems slow while you are in the middle of it. Take care of yourself before anything else. It doesn’t feel natural, but it is what you must do.

Update: Congrats, Donna!

This beautiful wife and mom has since become a mom of 3! Donna and husband, Jason, welcomed twins Alexander and Matteo. Big brother Jaydon has had a great time with his new baby brothers.

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Primary Mediastinal B-Cell Lymphoma Stories