Moderated by Stephen Cerne, Owner/President of Fully Functional Fitness, Inc.
Join us on June 4th, from 8–9pm ET / 7–8pm CT / 5–6pm PT for our first Cancer and Exercise AppChat! Caregiver and Exercise Expert, Stephen Cerne from Fully Functional Fitness will be leading the discussion on the GRYT App. We’ll be chatting on everything from guidelines, to exercise programs, and different ways to alter and adjust exercise to accommodate different needs.
What we’ll be covering:
What makes up a well-rounded exercise program? • Cardiovascular-Respiratory • Muscular Strength & Endurance • Flexibility • Balance
American College of Sports Medicine (ACSM) Guidelines on physical activity: •How does one determine exercise intensity? •How to determine your maximum HR •Tools for use in determining intensity
Specific Guidelines •Cardiovascular-Respiratory •Muscular Strength & Endurance •Flexibility •Balance •How does one alter an exercise program?
Factors: •F- Frequency (How often) •I- Intensity •T- Type/Modality (Ex. Walking, biking, swimming) •T- Time/Duration (length of workout)
I made my way to Miami for a second opinion on a leg injury from my car accident 5 months prior. At this point I was unable to walk, but was FULLY expecting my diagnosis to be a torn meniscus and a Baker’s cyst. I told myself “all I need is surgery and then this will be behind me”.
I will never forget the shock and emotion I felt on 11/11/15. My MRI scan showed something was very wrong. That big white blob? Ya, in a “normal” leg, it’s not supposed to be there. That large glowing mass was all tumor. Active Aggressive Fibromatosis of the left popliteal fossa. Complete with strangled artery, that if not treated NOW, could end in amputation. The LAST possibility in my mind was cancer. “I need a biopsy, why?”, “I’m sorry, I have what?”, “What does aggressive mean?”, “I need 24 weekly rounds of CHEMOTHERAPY?” — I’m sorry, I think you have the wrong person, car accidents don’t cause cancer!
After two rounds of chemotherapy and relearning to walk through physical therapy, I walked into my orthopedic surgeon’s office last month for the determination on whether or not I would continue with chemo, or be done for now. All I heard was “decreased vascularity”, “increased collagen”, ”the tumor is so dense it’s absorbing all the waves”. These comments were soon followed by cheers and thumbs-up from all 8 doctors and nurses. My tumor responded well to the treatment, and it was his recommendation to stop chemo.
Cancer doesn’t take a break. It’s been on my mind every day for three years. It’s an everyday choice to fight. I’ve tried my best to not let cancer define me, but instead motivate me to live a full and loving life, since I now understand I only get one.
Here’s to the end of a chapter, and the beginning of a NEW one! The world is my oyster.
GRYT is choosing to find JOY even after being diagnosed with a rare, incurable cancer that will probably require multiple chemo treatments throughout your life.
GRYT is choosing to fight the physical and mental battle of cancer and chemo EVERY DAY by not giving up at work, at the gym, in relationship, or in adventuring.
GRYT is choosing to believe cancer and chemo is a beautiful part of my story that deserves to be shared.
GRYT is choosing to share my @chemo_diaries with the world in an effort to raise awareness about the effects of chemo.”
Every step of the way a complication or unexpected bump in the road. An initial benign diagnosis. A chyle leak from a lymphadenectomy. Extravasation during my first chemo treatment. Two PICC lines.
Since my own cancer diagnosis, I’ve chosen to be radiant. To do what I can to bring light to the darkness for those touched by cancer. I’ve experienced the anger, pain and hopelessness of diagnosis. Of treatment. Of not knowing. Of waiting. Of watching.
Although my journey was full of complications, the destination has allowed me to have a clear mission in my life. That mission is to help others in their time of need. Sometimes, it’s a calming voice. Or helping people find community. Other times, it’s being a sounding board, nodding and agreeing that someone’s circumstance is unfair.
I’m lucky. I’m experiencing the gift of remission, something a lot of people do not get to experience. I’m fortunate. And I’m not taking it for granted.
GRYT is riding a rollercoaster of emotions and not knowing the outcome.
GRYT is spinning a cancer diagnosis into a passion to help others.
GRYT is staying involved with the lives of my children during treatment.
The GRYT core values are Community, Authenticity, and Relentlessness. We always put the community first and expect the same from our partners. This is the intention of every partnership we create, to make a positive impact for the community.
Our GRYT principles always put the person first, ensuring they never feel pressure to accept someone else’s standard. Information is not a luxury, but an undeniable right. GRYT’s mission is to ensure that patients, survivors, and caregivers have the information to make decisions based on their personal values and lifestyle. Our partners share this mission.
GRYT is nothing without the community of users that continues to grow every day. Standing behind them means protecting their anonymity and never doing anything without their permission.
GRYT promises to be humble in knowing that at the core of everything we do, we are here to serve the community and listen to our team and partners with respect. Trust and collaboration advance the greater mission to cure, treat, and heal.
GRYT promises to come with an open mind, allowing ourselves to consider new ideas. Knowing that our mission can only be achieved by learning new things from different people and places.
GRYT promises to be adaptable. By adjusting course and pulling in resources, we can make incredible things happen.
GRYT promises to work with purpose. Our partners will allow us to be authentic, curious, willing and patient to work with us as we consistently discover different and continuing ways to work with our community.
And lastly, GRYT promises to honor the highs, as well as the lows. We promise to recognize both of these because it is the true, raw and authentic face of our story. It’s not all rainbows and race medals, but hair loss, scars, and sometimes, even death. Which GRYT also promises to never ignore.
Couldn’t join us for last week’s AppChat with Hopelab? Read the highlights below from moderators: positive psychology expert, Ximena and Vivibot project lead, Michael.
Part 1: Survivorship, Positive Psychology, and Purpose
Hi everyone! My name is Ximena and I will be your moderator for the chat. It all started the summer after college — I had plans to go to graduate school to study positive psychology. I am from Oregon, and my school is in Southern California, so my family and I road tripped it down to CA and moved all of my things into my new apartment. I got a call from my dermatologist that I had melanoma after a new student mixer one evening.
Luckily, my family was still there, so we packed up all of my things and drove back up to OR so that I could get treatment. I spent that year at home recovering and working with children at a daycare. It was an unexpected year to say the least! Now, I am back in CA and am in my second year of graduate school studying positive psychology.
How did you come to study and incorporate purpose/positive psychology into your life?
I love studying positive psychology for many reasons, but I think that the biggest one for me is that it is providing me with tools to help people live purposeful and fulfilling lives.
Traditionally, the field of psychology focused primarily on helping individuals with various disorders get to a neutral level of functioning. But, positive psychology focuses on getting someone from a neutral level of functioning to thriving.
I try to incorporate positive psychology into my life as much as I can, and I frequently focus on cultivating a sense of gratitude for life. This was especially difficult after my diagnosis, because I felt anything but grateful after first hearing the news. I actually felt terrified and like my world had been flipped upside down.
As time went on, I found myself frequently being incredibly grateful for everyone who was there supporting me.
Do you feel like cancer has impacted your life/ who you are as a person? If so, how? If not, why not?
I feel that cancer has certainly impacted my life, I feel like I now view life as much more fragile, and so precious. I think it has made me hone in on what is really important to me in life.
Where you are now / what do you think is your purpose?
I always knew that I wanted to help other people, but after my cancer diagnosis, I felt very passionate about helping other individuals with cancer and cancer survivors.
I do feel like there is tremendous potential for post traumatic growth after this experience, and I would love to help foster it in cancer survivors.
The 7 skills that Vivibot covers
There are Positive Psychology skills that Vivibot (the chatbot for individuals with cancer and cancer survivors that was made by Hopelab) teaches.
noticing and savoring positive events
random acts of kindness
Since one of my favorite practices is fostering a sense of gratitude, let’s do a gratitude activity.
Why doesn’t everyone list 3 things that you are grateful for?
This is one of my favorite exercises, and I had a professor once who told our class that he did this every time he woke up “before his feet hit the floor”. He said it was a great way to start off the day.
Vivibot is a chatbot that actually does practices like the gratitude activity we just did.
Part 2: Chatbots
Hopelab created this bot in collaboration with young adult cancer survivors. Hopelab is a social innovation lab based in San Francisco. This bot is made to be used through Facebook Messenger.
I guess I just wanted to start off by asking, what do you think a chatbot is?
(I had no idea what it was before talking with Vivibot). A chatbot is actually a robot that automatically responds when being asked questions.
I have tried chatting with Vivibot, and the first thought that came to my mind was that I wished that I had access to this when I was just diagnosed with cancer.
Immediately when that happened, I didn’t really have the words to describe how I was feeling and had a lot of processing to do. I think that this bot may have helped with that.
Vivibot can actually act as kind of a launching pad that might help cancer patients / survivors to a place where they can talk to other people (therapists, counselors, etc) about their experience.
If you’re interested in trying out Vivibot you can check out her FB page and start chatting with her now!
Highlights from the Neuropathy & Cancer AppChat Sponsored by Seattle Genetics and ReVital Cancer Rehabilitation
Missed the Neuropathy & Cancer AppChat with cancer rehabilitation expert Dr. Stubblefield? Attended and want a recap? No worries, we’ve got you covered! Read below to find out what information Dr. Stubblefield shared during the AppChat as well as what questions he answered from those in attendance. You’ll also find more information on Dr. Stubblefield, resources and our sponsors!
Part I: Neuropathy & its Signs/Symptoms
Information from Dr. Stubblefield:
The central nervous system (CNS) consists of the brain and spinal cord. The peripheral nervous system (PNS) consists of everything outside of the brain and spinal cord. Nerve roots come out of the spinal cord, literally resembling the roots of a tree, join into complex interconnections called plexuses, and then branch into large-named nerves, such as the sciatic nerve, which travel to the rest of the body.
There are motor nerves which supply impulses to the muscles, sensory nerves which relay sensation from the body, and autonomic nerves which control things like blood pressure and digestion.
When we talk about peripheral neuropathy (PN) we are talking about damage to the nervous system outside of the brain and spinal cord.
There are three major types of neuropathy problems:
Sensory problems: This is usually pain or the loss of the ability to feel. Sometimes it presents as numbness and/or tingling, which we call paresthesia.
Motor problems: This is the loss of the ability to work the muscle, which presents as weakness. It usually occurs distally out in the hands or out in the feet.
Autonomic problems: The autonomic nervous system, which is part of the PNS, controls bodily functions such as digestion, heart rate, blood pressure, and sexual arousal. These functions may be altered by damage to the PNS.
Different causes of neuropathy will affect the different parts of the PNS differently. For example, platinum drugs primarily damage sensory nerves. You may have pain and lose the ability to know where your joints are in space, but your muscles still remain strong. Severity of neuropathy can also vary widely. Neuropathy could just be numbness in your fingers or, in extreme cases, it can cause paralysis.
Q&A with Dr. Stubblefield:
Q: Can neuropathy affect the face? A: Neuropathy of the face does happen, but it’s rare. It’s usually a vasculitic phenomenon.
Q: Are muscle fasciculations a form of neuropathy? A: Muscle fasciculations, or muscle twitching, can be caused by neuropathy. Motor nerves can send false signals to the muscle, which spasms in response.
Q: Can neuropathy cause erectile dysfunction (ED)? A: It absolutely can. It can occur from damage to the autonomic nervous system. It’s relatively rare though and the neuropathy is usually significant elsewhere. If it is only ED, then we would look for other causes.
Q: Can neuropathy cause toe cramps? A: It absolutely can. If the motor nerves are damaged and send false signals to the muscles of the toe.
Q: My neuropathy pain is much worse in the cold. What causes neuropathy pain to worsen in the cold? A: It is very common for neuropathy to become more painful in the cold. The cold makes the nerves fire differently, causing more pain.
Q: Is it common to have no symptoms of neuropathy during chemotherapy, but have it develop after chemotherapy has ended? A: Yes, it is common with agents such as the platinum drugs and is known as “coasting”.
Part II: Causes of Neuropathy
Information from Dr. Stubblefield:
In the world, the most common cause of neuropathy is leprosy. In the United States, the most common cause of neuropathy is diabetes. While in cancer, the most common cause is chemotherapy — particularly the vinca alkaloids, the taxanes and the platinum drugs.
Different chemotherapies can cause different types of neuropathy.
The vinca alkaloids and taxanes are what we call tubulin inhibitors. Tubulin is a type of protein that acts similarly to a pulley system. Among other things, cells use tubulin to divide. Tubulin inhibitors disrupt the process of cell division and cause the cell to die. If it is a cancer cell, this is a good thing. If it is a normal cell, this can lead to unwanted side effects. Tubulin inhibitors affect both sensory and motor nerves equally. Platinum drugs target the DNA of the cell and cause changes in normal cell functions, such as the ability to repair DNA and/or create new DNA. They only affect sensory nerves and not the motor nerves. To the trained eye, tubulin inhibitors and platinum drugs result in very different types of neuropathy.
A number of things can mimic chemotherapy-induced PN. Both a pinched nerve, which may be caused by bad arthritis or a disk herniation in the back, and carpal tunnel syndrome can cause numbness and tingling. These effects can be easily mistaken for PN.
More than one factor can contribute to neuropathy. A good neuromuscular medicine clinician should be able to sort out the cause or causes of the neuropathy.
Q&A with Dr. Stubblefield:
Q: Does chemotherapy-induced PN develop immediately or over time? A: It depends on the chemotherapeutic agent. Neuropathy is an immediate side effect of the vinca alkaloids and taxanes, but it usually gets better once you’ve stopped the chemotherapy. Platinum drugs affect the DNA, which means neuropathy is more likely to develop over time and may continue to get worse 6 to 9 months after you’ve stopped chemotherapy. This is referred to as the coasting effect.
Q: How common is neuropathy in patients that have been treated with platinum drugs? A: It depends on the dose. Most patients will get some neuropathy, but it typically goes away for a significant percentage of them.
Q: Why are some people more susceptible to chemotherapy-induced PN?A: A person may be more susceptible to chemotherapy-induced PN if there is a pre-existing issue, such as diabetes, or even a pinched nerve somewhere. This can make the nerves more sensitive to chemotherapy. Sometimes there is no identifiable reason.
Q: What about radiation? What kind of neuropathy is most typical following radiation? Is it more immediate or can it be delayed? A: Big and good question. It depends. Radiation does not cause a PN. It only damages the nerves that are inside the radiation field.
Part III: Evaluation of Neuropathy
Information from Dr. Stubblefield:
Diagnosing neuropathy can be very simple or one of the most complicated things in medicine. When a patient without any evidence of neuropathy before chemotherapy develops typical signs and symptoms of neuropathy in the treatment setting, we assume it is chemotherapy-induced PN and we don’t do any additional investigation.
When someone develops neuropathy that is not typical, then we will investigate using a detailed history and specialized physical examination. If that doesn’t get to the bottom of things, we consider nerve testing (nerve conduction studies and electromyography (EMG)), specialized laboratory studies, and sometimes imaging.
There are many nerve issues that might not have caused issues before treatment that can come out as a result of it. Much of the testing is to ensure that isn’t another type of neuropathy (vitamin B12 deficiency, diabetes, Lyme disease, etc.) or a mimic of neuropathy, such as spinal stenosis (narrowing) which compresses the nerves coming out of the spine.
Q&A with Dr. Stubblefield:
Q: Where do I find a neuromuscular medicine clinician? What qualifications should I be looking for? A: Most neurologists have at least some training. Those with a board certification in electrodiagnostic medicine, such as EMG, are even better. Rehabilitation physicians are also experts in neuromuscular medicine.
Part IV: Treatment of Neuropathy
Information from Dr. Stubblefield:
Numbness: Unfortunately, nothing really works for numbness caused by neuropathy. Feeling is lost because the nerve is not functioning or is dead.
Pain: Pain is different. In pain, the nerve is not dead, but it is sending false signals into the spinal cord and brain which are perceived as pain.
Very often those with pain respond well to medication. One of the best studied drugs for chemotherapy-induced PN pain is duloxetine (Cymbalta). Gabapentin (Neurontin) and pregabalin (Lyrica) have a different mechanism of action than duloxetine but, from my experience, can also be very effective for pain. Tricyclic antidepressants (such as, nortriptyline and amitriptyline) may also be very helpful. If non-opioid options are exhausted, sometimes we have to try opioid-type medications for pain management. These are usually effective.
Some patients use topical medication for the pain, such as lidocaine patches or topical creams compounded by pharmacists. They are not really absorbed and as a result don’t get into the CNS, but some patients swear by them.
Supplements are generally not going to make you better, unless you have a specific nutritional deficiency. Many National Cancer Institute studies have looked at various supplements in the treatment of chemotherapy-induced PN, but unfortunately none have been positive.
A vitamin B12 deficiency can cause neuropathy. Vitamin B12 is a common supplement people get for neuropathy and, if you are vitamin B12 deficient it can be curative, but for chemotherapy-induced PN it’s not.
Alternative treatments for pain management exist too, such as acupuncture, exercise and neuromodulation or scrambler therapy. My personal sense is that acupuncture is most likely to work when you believe it will work. In scrambler therapy electrical impulses on the skin are sent to overwhelm pain signals with non-pain signals.
Problems with Day-to-Day Activities: Therapy can help improve balance, coordination, dexterity and strength issues caused by neuropathy. Physical therapists can help with balance and walking (gait) issues — making patients more mobile and less likely to fall. Occupational therapists can help with strength and dexterity. They can also give you tricks to make everyday tasks easier. Therapy is not necessarily a cure, but almost everyone can become more functional and more comfortable.
Q&A with Dr. Stubblefield:
Q: What is more common in patients with chemotherapy-induced PN: numbness, pain, or both equally? A: Both numbness and pain are very common. Numbness is a little more common. Pain is easier to treat.
Q: Is there one drug that works better for pain than others? A: Not necessarily. Just because you don’t respond well to one drug, doesn’t mean that you won’t respond well to another drug. The drugs used to treat pain do not all act at the same target. Also, we’re all wired a little differently and, therefore, respond differently.
Q: Would cannabis or cannabidiol (CBD) oil help neuropathy symptoms? A: There is very little high-quality data yet. I hope that once we get better clinical trials we are able to gain a better idea of whether or not it is effective.
Q: Would someone that had slightly low vitamin B12 levels before chemotherapy be more susceptible to neuropathy? A: Yes, and it would be worth replacing the vitamin B12.
Q: Is there any negative effect of taking vitamin B12? A: No, not at all.
Q: For problems with the autonomic nervous system, can you only treat the neuropathy symptoms or can more be done? A: It is supportive treatment. There is no specific treatment to make the nerves work better.
Q: Any other non-pharmacological tips for dealing with neuropathy? A: Keeping the skin in good condition with lotion can help. Avoiding constricting garments, such as socks, can also be helpful.
Q: What, if anything, can be done to prevent neuropathy if you had treatment and no neuropathy so far? Any measures that should be taken to avoid late effects in general? A: Unfortunately, there is no treatment to prevent late effects. The treatments currently available optimize your function and control symptoms if they develop.
Q: What’s on the horizon? Do any new treatments look promising? A: There are new medications in development to help with pain, but nothing curative as yet.
An AppChat is a LIVE event that takes place on the Stupid Cancer App. You’ll find input and engagement from the community, along with expertise from speakers. AppChats are not only a great learning opportunity, but a way to connect with other users like yourself. Always free, check out GRYT Health on Facebook and Instagram for AppChat announcements. Questions? Contact firstname.lastname@example.org.
Disclaimer: All content is for informational purposes only. Content is not intended as a substitute for medical advice or treatment. Consult your medical professional for any questions concerning your health.