LET’S TALK ABOUT MAST CELLS! But first… did you hear? I’m stable! (Stable) – ‘Cancer that is neither decreasing nor increasing in extent or severity‘ After seven years, many many close calls and becoming a veteran status with metastatic pheo, I am stable.
If you’ve been hanging around for a while, you know I always document when this disease causes another. We call that a co–morbidity or a secondary condition. It’s important to understand the common links between each disease, so that someone else may save some time searching for answers. I believe that if I had not been treated for mast cell activation syndrome, I wouldn’t be stable today. Quite literally, I wouldn’t be here at all.
This link between these two diseases is life saving information, so if you suspect it, please keep reading. Mast cells are difficult to understand, or it is for me anyway. I knew I needed to secure a specialist, get a diagnosis, and finally be treated. What I didn’t know was that my life was going to completely change, in fact I will go as far to say – my life was saved.
Although I focus on the link between pheochromocytoma and mast cells in this specific blog, I do want to make note of the known link between other cancers AND chronic illnesses with MCAD. Mast cells can be triggered by many factors such as: stress, medications, procedures, treatments, and more. It’s important to be aware of the link – because it can speed up the progression of disease. Like in my case, once the mast cells were stabilized, I became miraculously stable – see? There’s very little published works with regard to pheo para in general, so I’m not surprised it’s not being talked about. However there are published works with regard to the role mast cells play with other cancers such as breast, skin, and brain cancers. If you want to do some light reading, it’s here.
If you thought Pheochromocytoma was complicated… you haven’t met mast cells yet! I’m no expert, but I’m going to try and save you some time, effort, and a whole lot of brain fog by sharing my personal experience with both of these diseases. Perhaps something in my story will be of value to you, that’s all I ever hope for.
One major thing I’ve learned while being medically complex? Our secondary conditions can be even more burdensome than the primary illness if not diagnosed, treated, and managed properly.
Why is this? How can a secondary condition be worse than the primary?
The primary disease, (ie) the metastatic pheochromocytoma, becomes all consuming for treatment and management. It has SO many different symptoms that we are constantly learning… the symptoms then get bunched into one category. I’m sure you have all heard, “that must be a pheo thing” I even blamed ALL of my symptoms on my tumors for years, when the majority were from the undiagnosed MCAS. Secondary conditions can be incredibly dangerous if undiagnosed, because they can conflict with the primary disease. Mainly, treatments and medications used to treat the primary can be contraindicated for the secondary. In other words, medications and treatments being given for one can disrupt the other.
Think of your condition as one big jigsaw puzzle, the primary disease being the outline, and then each symptom building a new picture within that outline. Each symptom forming the puzzle, chronic pain, hypothyroid, adrenal insufficiency, etc. Each condition impacting one another, and needing a perfect balance in order to manage.
For a while, my jigsaw puzzle had the outline and edges almost done. My puzzle pieces were sorted, but still not revealing the pictures. Until I became diagnosed with mast cell activation syndrome, then suddenly my puzzle became whole for the first time, ever.
I’m not writing this to explain MCAS, there’s blogs way more equipped to do that. I’m writing this to inform you of the link between pheo/para and mast cell diseases.
If you’re reading this and can relate to the majority of what I experienced, I hope you will leave with the information you need to get diagnosed. I hope you will finish feeling empowered and hopeful, and be able to navigate the diagnostic process with your own medical team. With that said, I’m going to break down the symptoms and events that eventually led me to a diagnosis. I will explain how those symptoms improved and how. I will touch on the changes I’ve had to make in order to stabilize my angry mast cells and the inflammatory process. Let’s dive right in!
Timeline & Diagnosis
The email:
September 2020 I emailed my specialists with regard to my suspicion of having some form of mast cell disease. I began by explaining I was too symptomatic for my (tumor burden) ie: the amount of disease in my body. I was reacting to things constantly that made no sense, treatments were becoming impossible for me to tolerate. Medications were always an issue, every procedure always went badly. So I finally started sending out emails to immunologists until someone could help me.
“If I look back to when I had my first benign Pheo in 2010, the first red flag was shortly after my tumor was removed, I developed a huge array of new allergies. I always found that odd and didn’t know how to link the two. I’ve also been told that people with MCAD are more at risk for metastatic disease.”
The next red flag was when I became allergic to contrast iodine. This is the most common “allergy” amongst the MC community since dyes all fall under the chemical intolerance. Remember my first ever radiotherapy treatment? MIBG? It stands for radioactive IODINE, I was pumped full of the very chemical us masties are most allergic to. No wonder why my health declined so rapidly, sigh.
In this same email I requested that I be treated for MCAS in the meantime while doing the diagnostic process, to see how I’d respond to treatment and hopefully lessen my suffering. I was desperate and wanted to try anything to feel better.
I was a prisoner to my own body and each minute was unpredictable. My symptom list was SO exhaustive, I felt embarrassed to even send it. The more I researched though, the more I realized that mast cells affect EVERYTHING in the body!
SYMPTOMS & CONDITIONS:
Chronic Fatigue
Exertion & profuse sweating from light activity
Flushing
Sweats
Weight gain
Chemical sensitivity
Medication reactions
Medication intolerance (pain)
Unexplained non specific pain
Joint pain
Abdominal pain
Pain when walking (feet) extreme inflammation
Back/flank pain
Rashes
Itching
Dermatological issues
Congestion
Airways inflammation
Slight wheezing (always)
Poor sleep
Chest pain
Esophageal spasms
Palpitations (always good EKG)
Nausea
Constipation & diarrhea
Bloating (looking pregnant)
Painful bloating after eating
Endometriosis
Fibroids
Feeling of UTI
Headaches
Night terrors
Sleep paralysis
Mood disorders
Anxiety
Hypothyroid
Adrenal insufficiency
I told you it was a lot, didn’t I? It seems unlikely that all of these would be caused by one condition. Although there’s a lot of overlap within the different conditions, to my surprise, a lot of these would become managed with appropriate treatment. Keep reading!
I was debilitated, in bed all the time. I just couldn’t stand to be awake because I didn’t want to feel the pain and symptoms I was experiencing. Being in your 20s with terminal cancer is hard enough, but to not be able to have any quality of life – I had to do something. Anything
What ended up confirming my suspicion and making me push so hard for the diagnosis was a few mosquito bites. I had always been highly reactive to bites, but this was a whole other level. It wasn’t just the bites, it was how my BODY responded. This I realized, is a flare up – and it wouldn’t be the last!
“I got a few bites on my morning walk, they became so swollen, I got sick with nausea and a migraine that felt like I had a lot of pressure in my head (Similar to my Pheo attacks) I thought it was that at first. I checked my BP and it was low, 99/60. Not typical with a pheo, Then I realized the link between the bites and MCAS. So I took Benadryl, just to see. A debilitating headache that lasted 2 days with nausea, finally went away within ONE HOUR of taking benadryl. It also helped with the wheezing and flushing”
Finally my puzzle was coming together, and this was when I began forming my email and doing more extensive research to link what was happening to me. For the first time in years, I had a glimmer of hope. I knew there was a reason I was still here, kept defying the odds, this was my answer.
What does MCAS impact?
The release of too many mediators can impact almost every part of your body.
The primary affected areas typically include your skin, nervous system, heart, and gastrointestinal tract. The number of mediators released can cause symptoms that are mild to life-threatening.
Symptoms may include:
- skin: itching, flushing, hives, sweating, swelling, rash
- eyes: irritation, itching, watering
- nose: itching, running
- mouth and throat: itching, swelling in your tongue or lips, swelling in your throat
- lungs: trouble breathing, wheezing
- heart and blood vessels: low blood pressure, rapid heart rate, chest pain
- stomach and intestines: cramping, nausea, diarrhea, abdominal pain
- nervous system: headache, confusion, fatigue
In severe cases, your symptoms may include a rapid drop in blood pressure, weak pulse, and narrowed airways in your lungs, making it difficult to breathe. This life-threatening condition is called anaphylactic shock and requires emergency treatment.
I created a medical resume and shared the contents of what I put in mine to help protect others who suffer from the same illnesses. You can find it here, you should also be wearing a medical alert bracelet, I recommend this one.
Diagnosis
As far as a diagnosis goes, my immunologist made the decision to treat me right away based on the severity of my symptoms and quality of life. It was a judgement call based on the complex nature of my situation, and it was a good one. Days within starting just the H1/H2 combo, my symptoms improved dramatically.
The first test they will typically do is a tryptase test, but it has to be done while you’re in a flare up. That was difficult for me to do, and I was advised it’s common to not get a clear diagnosis with this alone.
We moved onto the more detailed 24hr urine test, quite complex and had to be sent to mayo clinic from here in Canada. I have not yet discussed those results, but with mast cell activation syndrome it can be tricky to get a confirmed result.
My team is on board with my confirmed diagnosis due to my response to treatment. The treatment for MCAS saved my life, sometimes that has to be enough.
Elimination Process
My disease has been stable since I am treated, and that’s enough for me. My main priority each day is keeping my mast cells stabilized, which I’ll talk more about below. I have the appropriate protocols in place, I now know how to protect myself before during and after procedures. I now know how to updose during a flare. I have educated myself as I did with any other illness. It’s the hardest one I will admit, it’s been so difficult to navigate this. I am constantly changing my diet, not to mention the chemical overhaul I had to do. Bye Bye fragrance, I am now a bland potato. most days i’m okay with that, since it keeps me alive. However I do miss the smells of bubble bath, candles, and perfumes some days more than others.
What to eliminate:
When they say fragrance is now life threatening, avocados are the devil, that’s no joke. I had to really reframe my brain to understand, believe, and then grieve many many things I was once used to. My husband had to quickly get on board and learn as well, because there’s no sense in you eliminating chemicals and fragrances if they’re going to exist in your safe space. Yes, that means everyone must be on board. For your life, for your health, for your safety.
I won’t tell you what to do, but I will share with you the process in which we went through to keep me safe and eliminate harmful triggers which put me in a flare up.
- Household chemicals, cleaners, windex, wipes, anything that has a scent or chemicals, gone.
we replaced all of our cleaners with norwex disinfecting cloths and natural cleaning solutions, right down to the laundry detergent, dish detergent, etc.
2. Personal care products, body wash, shampoo & conditioner, hair masks, lotions, perfume, all gone.
we replaced my skincare first, we use norwex body cloths, body wash that has no fragrance or is scented naturally, there’s no replacement for perfume – you just cannot wear any, i only use what i absolutely need. for skincare I use strength & courage made for the most sensitive skin and no fragrance. I use laroche posay for the rest. You can still light candles, but they have to be completely unscented. I often buy the LED ones now just for the comfort.
3. Food, we were thankfully already following a keto/low carb sugar free lifestyle. However when we realized that we would also have to follow a low histamine diet, things got tough. When you don’t eat sugar or grains, it already reduces your options alot. So we were essentially eating meats, vegetables, seeds, and cheese. We always make our own meals, but also had to eliminate processed meats. Left-over foods hold a higher histamine content, so everything has to be eaten fresh. It’s a lot of work and it can get expensive, but you have to be creative and just look at the benefits. Having a 4 day flare, or making a fresh meal (sigh)
High histamine foods include:
- alcohol and other fermented beverages
- fermented foods and dairy products, such as yogurt and sauerkraut
- dried fruits
- avocados
- strawberries
- eggplant
- spinach
- processed or smoked meats
- shellfish
- aged cheese
Foods that trigger histamine response:
- alcohol
- bananas
- tomatoes
- wheat germ
- beans
- papaya
- chocolate
- citrus fruits
- nuts, specifically walnuts, cashews and peanuts
- food dyes and other additives
Not every single item on this list triggers me, but I have to be extremely careful. I do eat chocolate, yogurt in moderation, and some lemon here and there. It’s best to eliminate them all first and reintroduce certain ones if you want to see how you tolerate it. With pheo we also follow a low tyramine diet, however most are already on this list so it makes it easier in that regard.
Some foods low in histamine include:
- fresh meat and fresh fish
- non-citrus fruits such as berries, cherries
- eggs
- chia seeds, flax seeds, hemp seeds
- gluten-free grains, such as quinoa and rice
- dairy substitutes, such as coconut milk
- fresh vegetables except tomatoes, avocados, spinach, and eggplant
- we love green beans, squash, peppers, onions, mushrooms, celery, carrots, zucchini
- cooking oils, such as olive oil but we favour refined coconut oil (it has no coconut taste) but all the amazing benefits such as a high smoke point and healthy fats!
Treatment
Understanding that treatment alone will not stabilize your mast cells, it’s a whole health effort. Your diet is just as important as your meds, your chemical exposure, your stress levels. All of the above are treatments for this disease. Otherwise you will continously fill your histamine bucket and the meds will just be fighting to lower it down – but it will constantly overflow.
- The first line of treament is an H1/H2 blocker, this is where most begin and covers most symptms. I started on cetrizine, and famotidine twice daily. We quickly doubled my cetrizine (h1 antihistamine) and we have maintained this dose.
2. Next we had to get my severe flushing under control, yes! it can be caused by MCAS, it is not exclusive to pheochromocytoma. There are different types of flushing, so my immunologist started me on aspirin therapy which is to control the release of D2 prostaglandins
(to me this was an absolute miracle, I could not believe that I had suffered with this flushing for so many yars and it could be taken away by a simple aspirin) It sometimes makes me really angry, but I don’t hold onto that anger. I wouldn’t want to go into a flare lol
3. Next we added montelukast or otherwise known as singulair which helps control the airway and breathing aspect. I was still experiencing a slight wheeze, and this finally removed it all together.
4. Last but not least we incorporated cromolyn sodium which is another stabilizer used to help aid in digestion, I have been able to digest more foods since taking this twice a day mixed in water.
Then and Now
Am I cured of all illness because I have a diagnosis? No. I am catching curve balls everyday, I am continuously learning to manage this disease. What’s changed?
I’m no longer bed ridden, I have use of my legs, (most days) I don’t internally explode each time I walk to the bathroom. I have more control of my emotions, I am not crying every few minutes with no reason. I am not having dark thoughts and my sleep is improving every day. I am able to do a bit more by myself like get dressed (most days) and do some baking for enjoyment. I do of course still need help but it is a tremendous relief that I’m able to do a bit more on my own. I’m able to do my phsyio routine which naturally helps relieve pain since I can no longer take certain pain medications with MCAS – read more here
SYMPTOM IMPROVEMENT:
Chronic Fatigue – I nap and rest daily, but am okay if I am mindful of the extra rest and meditation my body needs
Exertion & profuse sweating – this remains unchanged, but there’s a slight improvement. slight, tiny (lol)
Flushing – major improvement, as shown above.
Sweats – slight improvement
Weight gain – weight has stabilized with increased mobility and sugar free diet but remains a struggle
Chemical sensitivity – it’s managed with the lifestyle changes we have made and eliminations listed above
Medication reactions – well managed since I know what to avoid and when to follow a prep protocol before procedures
Unexplained pain – it comes and goes but MUCH less frequent than before
Joint pain – much worse when exposed to extreme temp changes, knees still hurt a lot and fingers when waking up, but much improved and no longer constant
Abdominal pain – huge difference in abdominal pain. this used to be debilitating for me, since treating my endometriosis this also improved even more
Pain when walking (feet) extreme inflammation – this does still happen, but not every day like it used to be. Now when it happens I know I’m in a flare up and I need to be mindful of the things I listed above.
Back/flank pain – mainly during flare ups but not with me 100% of the time
Rashes – i still get flare ups under my breasts and my inner thigh, but does go away with the skincare I mentioned above
Itching – my scalp gets itchy when I am flaring up, I now know what to look for and typically rest when I notice it
Congestion – completely gone away unless flared up (rare)
Airways inflammation – completely gone
Slight wheezing (always) – completely gone
Poor sleep – sleep has improved significantly, i wake up a lot, but it’s improving every day
Chest pain – it used to be everyday, now it happens every couple of months maybe, infrequent
Esophageal spasms – i can’t remember my last one, they have resolved
Palpitations – this is part of the territory but has decreased in severity and frequency
Nausea – not as intense, but still does happen, can be controlled with zofran
Constipation & diarrhea – i don’t struggle with the inconsistency as much as I did before, it doesn’t alternate consistently like it did.
Bloating (looking pregnant) – this does happen but it’s very rare and I can now pinpoint it to a certain type of food
Painful bloating after eating – this has resolved as long as I take my cromolyn sodium
Endometriosis – pain managed with visanne treatment, however we are still investigating the link and severity…
Fibroids – stable for now
Feeling of UTI – this has resolved
Headaches – much much less frequent, only comes during a flare
Night terrors – resolved with h1/h2!!
Sleep paralysis – resolved, for the first time in my life
Mood disorders – I still struggle with this greatly. I get flare ups that are sudden and mood specific, I can feel my mood shift and not be able to control it. I can only isolate myself and wait for it to pass with de-stimulation. I am still investigating this aspect as it’s been a struggle for me
Anxiety – i do get anxious but can manage pretty well with my coping skills and my daily routines, it stems more from PTSD and I do notice disassociation with MCAS. I do not experience the impending sense of doom as I did before, unless I’m in a bad flare.
Conclusion
As you can see, the treatment for MCAS is life changing. I went from being 100% debilitated and suffering to being able to enjoy some quality of life. It takes constant work and many many practices in order to control it. However I do hope that by me sharing all of my knowledge with you – it will save you time and effort. Maybe you can skip to the good part!
I’m interested to hear from you – let me know if you have MCAS and pheo, if you have tried any of these tips and how they have helped you.
Remember, there is a known link between these 2 diseases. Please be mindful if you are experiencing unexplained symptoms or if you are metastatic and your symptoms aren’t adding up with your ‘tumor burden’. I promise the effort is worth the outcome.
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