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Phantom Pain: A post-treatment phenomenon or concern?

Todd W Franzen

July 5, 2021

Ghostly hand against glass with the text "Phantom Pain A post-treatment phenomenon
Phantom
Pain

The sensation of phantom pain can be difficult to put into words because it’s not just one thing that hurts but rather a collection of different sensations experienced in various locations and intensities at any given time. In my experience it feels like burning, shooting, throbbing, or stabbing sensations. Sometimes all happening simultaneously on different parts of your body.

“What is this pain?” I ask myself, to which the answer is always a mystery.

People will say they feel this after an amputation or other type of injury where there is nerve trauma involved. Which I have also felt from past surgeries. The problem with these descriptions is that everyone seems to describe their own personal. So you never really know if what someone else feels like is what you are experiencing.

As a transplant patient, the sensation of phantom pain can be difficult to put into words. It’s, not just one thing that hurts but rather a collection of sensations experienced in various locations and intensities at any given time.

What is Phantom Pain?

Phantom pain is a type of pain that a person can feel in parts of their body that have been. It can also be sensations that are aftereffects of treatment and surgeries that have been experienced from diseases like cancer.

Phantom pain is important because it serves as proof to people with physical disabilities that their mental awareness is present and alive. Phantom pain can also be frightening for some people who may not understand what is happening to them when felt.

What are three causes of phantom pain?

Phantom pain is caused by damaged nerves and the brain’s response to them. Multiple sclerosis, cancer, or amputation can trick the brain to think that a part of your body is still affected.

Phantom pain can also result from injury to the sensory nerves in a person’s arm or leg. The nerves send signals to the sensory cortex in the brain that is misinterpreted as coming from a different location from where they actually originate in the body. This will be an ongoing sensation until treating physicians find a way to correct it with surgery or other treatments.

Symptoms of phantom pain don’t stop after amputation because healthy neurons will continue to send signals to the brain.

I like to use the term Phantom Pain as a way to describe pains that I feel and experience post-treatment. Being hyper-aware of the sensations helps me be able to make sense of what’s happening in my body. Every single unexpected pain makes me wonder and creates a sense of fear.

What are three ways to treat Phantom Pain?

There are a lot of treatments for phantom pain. These include medications like antidepressants, anticonvulsants, and analgesics. It’s important to find the right type of medication for each person to make sure it’s as effective as possible. Surgery can also be an option, with the goal being to treat the problem that is causing the pain. Electrotherapy and neural stimulation are also good options if surgery isn’t possible or helpful.

Phantom pain can be difficult to deal with because there doesn’t seem to be any stopping point in terms of its effects on your body. There’s no cure for phantom pain but there are things you can do to manage your symptoms and keep your mind calm when these feelings

What are three holistic ways to prevent future occurrences?

– Eliminate toxic substances in your life. Toxic substances can be anything from alcohol to prescription drugs, and they carry a high risk for abuse and dependency. Drink water, exercise, sleep enough to recharge the body and eat well.

– Schedule activities that provide you with personal fulfillment. It’s important to schedule time for yourself in order to prevent future occurrences. If you are feeling down or need reassurance that there is more to life than just living day to day then it could be effective for you to schedule an activity on your calendar like meditation or reading a book.

– Find a group of friends who support you and believe in you no matter what! Having friends who believe in you will help eliminate stress which will create a better

What are three ways to cope with the pain?

I have found that there are many ways to cope with the pain, but my favorite ways are as follows:

-Meditate: One of the most effective ways to relieve stress and calm the mind is through meditation. Meditation has other health benefits such as promoting healthier brain functioning, lower cholesterol, and reducing inflammation.

-Exercise: Exercising can be an opportunity for you to take time out for yourself and release pent-up frustration. It will also improve your mood and reduce your anxiety.

-Take two minutes every day for “Me Time”: I like to designate at least two minutes every day for me where I do something that I really enjoy doing in order to regroup from the stresses of life. This could be reading

Phantom pain is a term I like to use as a way to describe pains that I feel and experience post-transplant and treatment. Being hyper-aware of my feelings, sensations, senses on being able to make sense of what’s happening in my body. Every single unexpected pain makes me wonder and creates a sense of uncertainty for myself which has lead me here.

It’s important to find treatments that work best for each individual because not everyone will respond the same way when it comes to medication or surgery options available. If you’re struggling with your own personal choice on how you want to handle your pain, maybe some of these tips will help you out!

-Todd

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Todd W Franzen


I am a two-time Hodgkin's lymphoma survivor with 17 years of documented cancer survivorship experience that spans multiple treatment eras. My journey began in November 2009 with a Stage 4B diagnosis at age 33, and continued through recurrence and treatment in 2019-2021. This rare longitudinal perspective—living through two complete treatment cycles a decade apart—gives me comparative insight into cancer care evolution that no single medical professional can replicate.

MY TREATMENT EXPERIENCE

First Treatment Cycle (2009-2010)
• 12 infusions of ABVD Chemotherapy over 6 months
• 2 infusions of ICE Chemotherapy (4-day infusions)
• 1 infusion of BEAM Chemotherapy
• 1 Autologous Stem-Cell Transplant
• 8 PET Scans
• 6 CT Scans

Second Treatment Cycle (2019-2021)
• 2 infusions of Brentuximab and Bendamustine
(Severe allergic reaction to Brentuximab — hives)
• 25 rounds of Radiation to Mediastinum (46RAD combined)
• 4 infusions of Keytruda Immunotherapy
• 2 infusions of IGEV Chemotherapy (5-day infusions)
• 1 Total Body Radiation (2RAD)
• 1 Sibling Allogeneic Stem-Cell Transplant
• 6 PET Scans
• 6 CT Scans

COMPARATIVE EXPERTISE

Surviving two stem-cell transplants—one autologous, one sibling allogeneic—across different decades of cancer treatment has given me firsthand experience with nearly every major modality in lymphoma care: combination chemotherapy, salvage chemotherapy, immunotherapy, radiation protocols, and both types of stem-cell transplantation. I've experienced treatment side effects from the "standard" ABVD era through the modern immunotherapy period.

This comparative expertise matters for survivors. Treatment protocols in 2009 looked very different from 2019, and the long-term survivorship implications are still emerging. Doctors treat; survivors live with the aftermath. I've done both—twice.

CREDENTIALS & PROJECTS

• Founder: Strap In For Life 501(c)(3) nonprofit
• Author: Internal Architect: A Cancer Survivor's Memoir
• Licensed Insurance Agent (practical healthcare system navigation)
• 17-year cancer survivor documenting the journey since 2008

WHAT I WRITE ABOUT

Cancer survivorship doesn't end when treatment stops—it's when the real reconstruction begins. My blog covers:
• Practical survivorship (relationships, careers, identity)
• Treatment experience insights (what they don't tell you)
• Long-term effects and secondary health considerations
• Mental health and emotional reconstruction
• Healthcare system navigation

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