Paraganglioma / Carotid Body Tumor Question

I'm glad to hear that there is a treatment plan in place for you, now @puddknocker. I'm sure that you are relieved to be at this point. It really can feel like a medical merry-go-round when you are first diagnosed.

It must be very encouraging to know that the three chemo treatments will probably put you in remission.
Do you know the frequency of the chemotherapy? Will it be monthly?

My tumor did not secrete. I don’t remember what “normal” numbers are now, but my labs were never out of range. I did the 24 urine test twice - once with my primary and again with the Mayo lab, and both were fine. I also did an endocrine test before my surgery and that was good as well. My tumor was thought to be a CBT but ended up being vagal instead. Not sure if that makes a difference or not. Good luck!

If you are on Facebook, there is a group called Pheochromocytoma and Paraganglioma Support Group. There is a lot of great information there.

My carotid body tumor was re-diagnosed as B cell follicular lymphoma, whatever that is. It may be an acronym They may call it something else tomorrow. I have tumors throughout my body, but three chemo treatments will probably put it into remission. I will be getting a permanent IV port on June 5, and begin chemo the next day. I have been to so many appointments, seen so many doctors, been to so many hospitals, had so many tests, I feel like I have been on a merry-go-round for too long. The paperwork is incredible, same information over and over again. Getting into a regular treatment schedule will be a relief.

Carotid body paraganglioma. Diagnosed two weeks ago. Unilateral, left side, grade 2 internal carotid and grade 3 external.
Question about blood and urine catecholamines test. Did your paraganglioma secrete? I have heard that neck paragangliomas only secrete norepinephrine if they do at all. Not other hormones.
What are considered to be the high numbers? I am 790 pg/mL for Norepinephrine, 47 pg/mL for Epinephrine, and 38 pg/mL for Dopamine on the plasma test. Thanks in advance. V

I wish you all the best at your appointment, @puddknocker. I look forward to hearing from you after your appointment.

Your comments remind me of a song by Simon and Garfunkel. Part of it goes like this:
In a clearing stands a boxer, and a fighter by his trade,
And he carries a reminder of every glove that laid him down,
Or cut him until he cried out in his anger and his pain,
I am leaving, I am leaving. But the fighter still remains.

I have my first appointment with an oncologist tomorrow morning. The comments from members of this support group have been both alarming, and hopeful. I appreciate each one of you, and pray for you as I pray for myself.

Great thoughts, @patriciagsr. Good tools for anyone dealing with life's difficulties. Thank you.

Thank you Theresa..

My 1st advice will be to never stop trying (because I know it’s very hard), to be positive, never loose hope and always work for your recovery. It all starts in your mind and determination BUT don’t have too many expectations because we expect to be perfect and it won’t be posible.

I was told I would never eat again and here I am, I can even eat a hamburger! With difficulties and slowly but I can, and that was unthinkable.

Also what helped me a lot was meditation and breathing, even when I choked I was taught to breath correctly so all the muscles will start to get loose and it really worked most of the times.

In short : mind, body and spirit are important

Mind (being positive and believe in yourself), body (do the therapies and take care of your nutrition) and spirit (meditation, breathing and any kind of higher power).

With my g-tube a person told me something that helped me a lot : don’t hate your tube, I know it hurts and it’s uncomfortable but acknowledge that because of it you are alive and be thankful to it because of that. So turning around some negative feelings to positive changes totally your attitude and therefore the outcome.

Finally… acceptance. This is what life wants you to go through and always for a reason, there is something to learn from that experience, so think and try to learn whatever you think it’s the lesson.

I just want to add that everyday I wake up is a challenge and I never stop being amazed and thankful for my story.

What a remarkable story of your journey with paraganglioma, @patriciagsr. You have certainly been proactive in seeking out help as well as very determined to adopt a healthy mind-set and attitude.

I appreciate you sharing this remarkable story and I hope that you continue to progress in living a fulfilling life. If you could give advice to anyone who is experiencing a complicated health issue, what would that be?

Dear puddknocker,

I had a big para in the skull base in the vagus nerve, I always knew it was benign but what I didn’t know where the real after effects of the surgery. A very tricky place to grow..: to be honest I’ve never heard about the vagus nerve before until my para.

I had a very long surgery (around 11 hours), they cut my bones in the jaw so they could reach the para. I don’t remember anything, not even being the the recovery area. I just found myself in my room with my family around.

I never had any pain whatsoever, I was very swollen where the surgery took place but the 1st symptom that something was not well was that I couldn’t even swallow my saliva. I told this to the doctor and he kept telling me everything was in in head and that I had to eat so I could be released. I couldn’t eat or drink anything. Also my left vocal chord collapsed, so I had a very low voice and I had Horner’s Syndrome (my left eye had fallen noticeable).

Days went by and I heard the same “it’s all in my head” , a therapist came and we started working without any success but nobody really believed me. I was desperate and very frustrated as I never expected or knew this could happen.

I was released from the hospital after 9 days with the promise that I would eat/drink, it was a couple of days before Christmas so usually they send many patients home.

I am not American nor live in the US. I am Peruvian and live in Lima so I was not going back home but to a hotel with my family. I had a control appointment on Dec 27th.

I remember clearly trying to eat or drink whatever and I couldn’t, I started loosing a lot of weight and was weak. Maybe I managed to drink 1 bottle of protein shake during the day and with a lot of effort. When I went back to Mayo I was in a very bad state, they made this exam in where you drink/eat something in a XRay machine and whatever could go through my throat was going directo to my lungs. No good news. That was a red alert because I was in the way to have pneumonia.

Immediately they told me I need a g-tube, and I remember not even knowing what a g-tube was and they explained me obviously I accepted because I had no choice but I was not prepared emotionally for that. The following day I was back in surgery with general anestesia to place it, I was surprised when I woke up and I was told they couldn’t place it because my stomach was too high so they needed another doctor to perform the surgery. On Dec 31st at 4 pm I went again to surgery and the could successfully put the tube. I was released to the hotel at 10 pm.

Complicated because the explication we received about how to feed myself, clean the tube etc was very basic. So between my husband and my kids (adults) they started feeding me in the best way. On January 2nd we flew back to Lima. It was very difficult and now I realise I should have stayed longer in the US but that’s how we did it.

Thankfully in Peru we have access to a lot of help and I had a 12 hour nurse with me. She bathed me, fed me, gave me water etc. I also had 2 hours daily of swallowing therapy. I had to go back to Mayo every 3 weeks for follow ups.

I can’t deny those months were very difficult. I had a lot of trouble finding which formula could be good for me because I was constantly vomiting (after that I learn to vomit through the tube) and I lost almost 20 kilos in 2 months but I learned to handle my tube perfectly. Went to a nutritionist here in Lima and she started working in my nutrition with real food made at home.

Eventually with my therapies I could drink a little water and some baby food. After 14 months I reached a point where my tube had to be changed so the doctor here in Lima told me “if you don’t take this tube out you will never force yourself to eat” so I decided to take it out and started a new life.

Difficult but after 3,5 years I can eat fairly well, I learned what I could eat and what was more difficult but specially I learned how I should react when I choked.
Now I eat everything as a cream. A couple of months ago my doctor told me I had anemia and low iron, and that was because I ate what I could, and when I found something I could swallow I sticked to the same food every day. So no variety.

Now I eat everything blended and I have a very balanced diet. I has constantly dizzy and now that is gone and I feel much better. I take a lot of care about what I eat. I eat lots of protein (chicken, red meat, liver, eggs) blended with vegetables and always some fat (olive oil), for breakfast I blend overnight oats with some nuts, Greek yogurt, dates, some red fruits and whatever I feel like putting. For dinner I have a protein shake.

I had 2 procedures in my vocal cord and for the 3rd one I researched and found a great specialist in NYU Languone in NYC. He did a vocal chord replacement and muscle ablation to my throat which helped me a lot because my throat paralized and this allowed me to have it open so food could go down (but also out if I lean after eating and for some hours later).

Horners Syndrome got better but I learned to embrace my new life style. It’s very difficult but I had no option. Now I can go to a restaurant and order somethings to eat and I know what I can’t eat.

Being 14 months without having a voice or without eating was emotionally very hard for me so I also got help with that. Did lots of meditation and therapy.

Don’t think my experience will repeat in you. Everyone is unique with its own story. What I can definitely tell you if that it’s a daily battle but with time you learn how to handle it and even turn it into your benefit. Like always looking at the glass half full and not half empty.

These support groups helped me, and still does. Maybe I don’t write or say anything but reading other experiences have helped me a lot.

I travel, go to the gim, so sports, go out with friends and have a normal life knowing my limits but I don’t let those things not allow me to enjoy life.

I hope my long story helps you in something and i there is anything I can do to help you please let me know. Be positive… as you say, you’ve gone through so much that this won’t kill you… I am sure it will make you stronger 🙂