Questions anyone?

If ever you are curious about something and would like to ask me a question, it would be a pleasure to answer.

Leave your question in the ‘Comments’ below

 

 

39 comments

  1. Miranda, I have read you’re blog about 4 times today. I admire you for the awareness you are spreading with this rare disease . May god bless you, And I pray that you get through this.

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    • I’m truly grateful for all of the outreach I’ve been receiving, it’s a strange but comforting feeling knowing that so many people now know what’s happening and are right along side me. It’s amazing, thank you Kathleen! Hopefully you will continue to follow and share 🙂

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    • Well the short answer is – some can, and some cannot. Which is why it’s so important to check with your specialist or oncologist before doing so. Most registered massage facilities will say no to massage, just because they don’t want to assume the risk of further damage to the patient. The main concern when giving a massage to a Cancer patient is that the Cancer can spread, the studies that have been conducted say deep tissue and lymphatic movement can put the patient at risk for the Cancer to spread. It seems as though it is not a definite black or white topic, which is why it is important to ask your doctor before receiving any treatments. Also when a cancer has already metastasized, it can be dangerous for the patients bones as they are very delicate once it has spread there, it can even fracture or break a bone. So, depending on the type of cancer you have, it may be okay with your doctor. For me though, if there’s a risk of cancer spreading, even if it’s a tiny risk, it just isn’t worth taking the risk and most registered massage therapists will agree.
      Miranda

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    • Hi Sandy, no, as far as they knew when I had my very first single large soft ball size right adrenal pheo tumor when I was 19 – back in 2010, it was benign. I also tested negative for the genetic mutations I had been tested for at that time following my surgery.

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  4. I’m a lucky one to I have the same thing and I started this about 2 years when I started all of it. I am 15 so I started at a young age luckily. And I like what you said of explaining everything I get it a lot to.

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    • Hi Kaden, I’m so happy you came across my blog and am sure you can relate to a lot of what I have said. When you say your pheo started when you were 13, do you still have active disease now? Have you had the genetic testing done? – Miranda

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  5. Hey Miranda!
    Got to see Serge today at my store (Bétonel for paint).
    We talked about you and what’s going on.. keep fighting and keep it up Love! I’ll be thinking of you and your positivity, cause there is -always- something positive right?
    😘😘

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    • Hi Karine! 💗
      First off, thank you for all of your help today, you were amazing! Serge came home telling me all about you & how kind you are.

      Thank you so much for taking the time to visit my blog, you are so sweet. There certainly IS always something positive, but it doesn’t hurt to be reminded by nice people like you along the way – a blessing this journey has given us, which in itself would be a positive …. 😉 !

      XOX

      Miranda & Serge

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  6. Miranda you truly are fabulous. I came across your blog by accident and am glad I did. I have rare net cancer of the lungs and liver. Inoperable and incurable. I have no primary cancer, and I can agree with the days you are having. May I tell you am old enough to be your granny. That being so I also have one day where I pretend to be amazing and the next I could writhe on the floor with the pain. But i will not let this invader define me and I will never give in. This cancer does not belong to me. Keep your chin up you beautiful girl. Rember we are we can and we will. Remain positive love Jan

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    • Jan, thank you for sharing your personal story with me. It’s through our joint suffering, struggle, yet incredible resilience that gives me back my hope when I need it most. I will remain positive because that is who I am, and I will continue to share my message because that is what I feel I have an obligation to do. I am glad so many people come across my blog by accident, so I can have the pleasure to speak to others like myself, and continue my journey to becoming a little less rare 🙂

      Thank you Jan, you are too kind. xox

      Miranda

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    • Hi Jan, having a pretty tough go, many things happening very quickly and have felt so incredibly poor… I can’t even write, I am still breathing (yay)! … just going through a bit of a pheo rough patch if you will, a scary one. Xxxxo

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  10. Hi Miranda!

    My name is Rachel and I am engaged to my fiancé who was diagnosed with pheo two years ago. He will be starting his MIBG treatment soon. What advice do you have around being the best support I can be? What should I expect? How can I be a cheerleader without being overbearing? Anything you can share that your husband does for you? Hope to hear back. Thanks.

    Rachel

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  11. Hello Miranda! I’m so sorry to see you are going through a crap patch, another one. Please don’t be offended but have you considered Cannabis oil (CO) THC and CBD? You have tried so much and there is evidence to show many with various forms of cancer have been either held in remission or cured. There are many sites but among best would have to be cannabis success stories, and a site which deals specifically with brain cancers has an enormous amount of info for specific cancers and shares individual experiences. Surely there is no harm in gathering information? Sending love and appreciation for everything you do.

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  12. Hi Miranda, I haven’t been diagnosed yet but my doctor just informed me that I need to do test for pheo. I noticed you had your first surgery when you were 19. I also just turned 19. I was wondering if you were other wise healthy before your symptoms? And how long you had your symptoms? I was completely healthy, very athletic, never got sick until January when I started having severe episodic hypoglycemia.

    Thank you,
    Hannah

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  13. Hey,
    Was just surfing the web and ended up reading some of your blogs. Very encouraging and inspiring . It might be weird but have you thought of holistic healing?

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    • Hi Jonathan, I apologize greatly for not getting to anyone sooner. It seems my notifications haven’t been working for my blog in the last few months (fixed now!)

      Thank you for reading. I am integrating different therapies into my healing process, it’s a bit difficult right now with covid, but I definitely intend to widen the scope with how I can improve my pain and state of mind.

      Thank you for asking!

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  14. I stumbled across your blog today by accident , I am waiting for my test results and feeling like crap. I too have been on a very rocky road this last year with all these symptoms . Today is a very low day I feel very drained , like I have ran a marathon in my sleep
    it’s so hard to keep positive when your anticipating an attack
    .I’ve had so many awful symptoms to date . The scariest was a stroke like episode where my vision went and then came back . All my symptoms started back in Dec / Jan with severe headache s sweating and shaking and I just thought my thyroid medication was over but it seems it wasn’t , so it’s been one doctor after another to this present day. I am waiting the results of my blood tests do you advise I have an adrenal scan regardless , I have already made enquiries . When your gut just tells you it is and you know it’s so frustrating , doctors really drag there heels . Did you have an MRI with contrast ?

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    • Hi Trudy, I’m so sorry you’re having such a rough time. I can only hope you’re making a bit of progress in the last couple of weeks. You’re right, it is a hard adjustment to always be anticipating the worst happening to our bodies. It’s terribly hard to explain having an attack to those around us. The best advice I can give for comfort and to reduce the anxiety, is to try to have a quick 10 or 15 minute guided medication handy from YouTube, that way when you’re coming down from an attack, your sensory experience will be put at ease and you’ll be able to relax all the adrenaline in your system. Also, if possible, you can maybe ask your doctor to prescribe Ativan or something to reduce the effects of the attacks. Of course, alpha blockers and beta blockers are best at managing symptoms, but I’m not sure if you’re there yet. So the above is what I’d recommend for now just as far as keeping you safe and calm.

      As for what I’d suggest for scans and testing, I’d definitely recommend doing a repeat blood test IF it comes back negative. I would also recommend doing a 24hr urine for catecholamines. I’d push for a CT with contrast for now, keeping in mind these scans can miss the tumor depending on how large it is, but it’s still probably the best bet for a starting point. I believe my initial Pheo was confirmed with a CT & MRI. But now for maintenance & follow up with my metastatic Pheo, I get a CT with contrast, a gallium 68 scan, and sometimes an MIBG. Please don’t hesitate to contact me if you have anymore questions or need advise. 🤍🙏🏼

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  15. Anyone have suggestions for coping with abdominal pain for adrenaline boost with hypertension with paraganglioma? Used Zofran for the nauseau. But the pain lasts for days

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    • Hi Kate, I would really suggest a warm heating pad if you can tolerate it. That’s been my bestfriend for abdominal pain. If you need something extra, maybe talk to your doctor about a safe anti inflammatory you can take during flare ups 🤍

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  16. Thank you so much for this blog. God bless you. My daughter has been having all of these symptoms for at least the last 7 years since age 19. Before that she had a sudden onset of septic shock in ninth grade which no one could ever explain but afterwards she had adrenal insufficiency. Despite that , since the new onset of symptoms Four years later , she has been to dozens and dozens of doctors who basically blame her and then prescribe another medicine. More anti anxiety more something for weight loss. More for heart problems. And they just continue to ignore what they can’t explain like why she suddenly had to be rushed to the hospital for throwing up massive amounts of blood several months ago. The pain she gets with the attacks is so intense what she really needs is morphine but her last trip to hospital in an ambulance and the subsequent mistreatment in the ER was so traumatising that it seems worse than the pain. I am just writing to let you know we finally got her endo to ask for a metenephrine test which we will do today. And also to let you know your blog is definitely saving lives and bringing comfort. Without it I would not realize what we are dealing with when she gets an attack. Or how to begin to cope. You are a brave warrior and I am so sorry for all your suffering. I want to thank you for all your help. 💗💗💗🙏🏻🙏🏻🙏🏻 Lisa

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  17. Hello Beautiful.

    I just want to say how brave you are and so strong. With you telling your story to the world means alot. I am no longer young, but I had a few things going on with me when I was younger, and doctors look at you like nothing is wrong. I ended up not having anything but still. why young population has to be in suffering, everyone should be their own doctor and listen really hard what their body is telling them., then do research and bring it to a doctor’s attention, demand for them to listen to you.

    What happen to you was so wrong and those doctors should be responsible for the delay in your diagnosis. But no one does anything against doctors. They need to learn a lesson. its malpractice.

    I wish you the best. stay strong and enjoy the beauty of this world.

    Thank you.

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  18. Hi Miranda Thank you for all that you share in your blog It is very helpful to so many people. I was diagnosed in 2019 by accident and removal was in 2020. I had had systems for many years before that. My question is regarding a comment about vision health. I have noticed in the last few years I have issue where I have a 3D vision affect and a couple of times I have slowly lost my vision for a no more than 5 minuets. No head ache or anything else. I have discussed this with all of my Dr including my Ophthalmologist and all I get is it must be optic nerve migraines. Lately I have noticed that my glasses I just got in December 2023 are not always as clear as when I got them. Can I get your perspective on vision and Pheo. I also had genetic testing and is was Neg.
    Thank you
    Brenda

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    • Hi Brenda, such an important topic and question. I appreciate you asking and I will draw more attention to this in the future.

      Just to be clear, are you asking whether or not perhaps you have recurrent catecholamines? I do hope you’re having full full follow ups to ensure your levels are still normal and imaging if necessary.

      As for if it’s possible that your vision could be impacted from the disease itself, yes. The long term impact of adrenaline is something that’s very poorly understood. Even if we do not have catecholamines circulating in our blood, the continuous restriction of vessels and output of poison essentially can cause vision fluctuations. I do hope there’s more information about this one day because it’s always been an issue being understood medically.

      I’ve NEVER met an eye doctor who understood or recognized the link between the vision and pheo. It’s just not something they are aware of in most cases. My endocrinologist is aware of it, but I imagine if there’s so little info on the topic when it’s actively secreting there’s even less or none when it comes to the later impact.

      Every tissue in our body is touched by these hormones. Many functions become impaired without knowing. What is the solution? That’s the difficult part. I’ve never had a solution apart from increasing blockers and having to pay for new lenses constantly

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      • Yes that is what I was asking. I have my labs done every 6 mo or sooner if I feel like something is not right. Thank you again & stay Fabulous ❤️

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  20. Hi! I’ve followed you on Instagram for over a year now. I just today found your blog and read some of it. You had another major surgery recently. Are doctors saying you will continue to need to have surgeries throughout your life? Is there a chance you could go into remission? You’ve had multiple major surgeries since 2015 right? Is there anything they can do to help lower the risk of the cancer coming back stronger?

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  21. Hello Miranda,

    Thank you for your blog. My daughter, who is my only child and age 18, was recently diagnosed with the SDHB mutation, which she inherited from her father. It is so good to see you living your best life. You are an inspiration.

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  22. Hi Miranda

    I was wondering how you are ? You were so great for me / to me when I was going through hell. Just from your words and stories of your journey.

    And even though you don’t know me at all – you still mean a lot to me . And I often think of you, and how you have made such a huge impact to so many – total strangers like me.

    Well. We haven’t heard from you in a little while. So here is a a virtual hug. I hope you are OK and just know. “We” care about you.

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