Baroreflex failure as a late sequela of neck irradiation

FormerMember
FormerMember
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Hello All

I am a former USAF corpsman and later, an Oncology nurse. I have had extensive experience on both sides of the bed rail, as I am also a stage IV survivor. Had squamous cell carcinoma in the right tonsil and tongue, plus a few nodes. I was given a 50/50 chance and since I have not ever been real lucky, I was pretty worried. Soon after diagnosis, the battle commenced in earnest. The campaign lasted six weeks. The fighting was fierce. My oncology doc's launched an immediate cisplatin chemical assault, while the radiologists mapped the enemy positions in prep for the nuclear attack. I knew cisplatin from my nursing days and I thought, good choice. very toxic. I put this in military terms partly because that's how I think of it, and it is reality of it. It was very difficult for me and I certainly felt like a battle field.

The good news of course is my Doctors, my champions, prevailed. It is unfortunate that the doc's had to use nuclear warfare, but there was no other way. As in all wars the are innocent bystander casualties. Also, it is an unfortunate truth that radiation "is the gift that keeps on giving".

This brings me to the topic. My innocent bystander organs that were caught in the crossfire are called baroreceptors. They took an apparent lethal hit from the radiation. But here's the tricky part that people need to be aware of. It takes on average 6 years and 4 months for the receptors to start to fade out and the onset of symptoms to appear. My first symptom- looking up causes rapid drop in blood pressure and I go faint. As it progressed dizziness when I stand to a more acute stage, where I had outrageously high blood pressures during sleep, referred to as a nocturnal surge. I would wake in the a.m. feeling as if I had been beaten all night.

I did not know what was wrong. This is now 7 years or more post cancer. I started looking for answers and I found a Head and neck cancer survivors forum. The first entry was a guy complaining of all my symptoms. Lower down, there was another. Farther down still was an entry from a nurse that suggested it may be baroreflex failure syndrome.She was familiar with this condition.

Once I read that, did some scholarly research and found my answers. (regarding this: cut and paste the title onto google search or google scholar. Relevant studies linking the cancer treatment to the eventual BFR syndrome are on the first two pages.

Baro means pressure and the receptor is the sensor. The two nodes in the carotid arteries are the sensors that tell the body when enough is enough regarding blood pressure. When they fade out, the body is operating blind to its own pressure and does know when to stop. it must be held down with drugs. Lot's of drugs.

But again, there is hope. I work with my physicians and pharmacist and we are doing better. I am getting better control, and though I am stuck with this condition,I wouldn't want it any other way. I am still here to keep company with my wife. for that, its a small price.

Now if I can be of help to anybody, I would like that.

  • Hi 

    Welcome to the community

    Thats an interesting post

    I think the more targeted radiotherapy available these days has a more sparing effect regarding collateral damage. 
    The carotid sinus is at the bifurcation of the external and internal carotids so it’s at the level of the Thyroid cartilage of your larynx. 
    Maybe the sequel you describe is something to be aware of if you have had both sides of your neck irradiated and you develop thyroid gland insufficiency further down the line. Most of us don’t. I don’t know whether you need both sets of baroreceptors to maintain blood pressure. 

    Edit

    I do seem to remember somebody here describing similar symptoms though. I’m racking what’s left of my irradiated brain to remember. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Here’s the thread

    HERE

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • FormerMember
    FormerMember in reply to Beesuit

    Hi Beesuit

    Thanks for the welcome. In all honesty, in my studies, I have not run across only one failed receptor. When the radiologist did her initial exam, even though I had the cancer on the right side, She elected to do both sides. she said it could be there and that was enough to warrant both sides. She said, we only get one chance, It was better to take the damage than the risk at that point. My doctor was at the Zion Cancer center in San Francisco. It is listed in the top ten hospitals in the US for saving lives. I could not argue her opinion.

    Ironically, in the VA emergency room, where I went to report a lesion in my throat, an exceptional Nurse Practioner that had saved my bacon several times examined my throat, she said my thyroid was enlarged. She had discovered I also had Graves Disease as well as the cancer. A couple of years later, my thyroid was killed, again with nuclear attack. The thyroid issue is unrelated to the receptor. as

    As far as the targeting goes, I am not so sure. It has not been long since my therapy, really. I know something of the capabilities of the Siemens units they usedon me , they don't get any better.

    I don't know if my condition was preventable or not. I have wondered what can be done. Perhaps, surgically impanted shields over the carotid nodes, prior to radiation. I never saw a three dimentional image of my tumor. Perhaps some extra fancy shooting around them if possible. Who knows. I plan on contacting my ENT, and oncologist docs and suggest that they warn patients of this possiblity. That way, when it shows up, you might suspect baroreceptors. Even though the hospital I am being seen at is staffed by UCSF, one of the top 25 med schools in the US, It took me almost 3 years to get a difinitive diagnosis, during which there was much experimentation and failure.

    Two drugs are absolutely needed to control. Clonidine and benzodiazepien (valium). Others as well, but these 2 are essential. Unfortunately, clonidine for the most part is no longer used because of dangerous side effects. Doctors are very reluctant to prescribe it. As to the valium, well when you ask for that, you are regarded with suspicion at best. I would always say, its not my idea, its in the studies. Fairly recently, I discovered why. Emotions are an extremly volatile when it comes jacking the pressure. I can get very emotional watching a movie, remembering an old friend. anything than illicits a strong response sends the pressure soaring. Valium blunts the output from limbic system (where emotions are formed) to the hypothalamous and then down the axis to the adrenal glands where the order is givin to release more adrenalin. The rub is the is never an order to stop. That order would have come from my baroreceptors. It reminds me of Clooneys description of a bipolar disorder, saying " it like a cat being swung around by the tale by its own humors" . I have to watch my emotions.

    MICHAEL

  • Hi Michael

    Although I’m medically qualified Google can only take me so far. 
    I hope you can at least mitigate your symptoms to give you a decent QOL

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • FormerMember
    FormerMember in reply to Beesuit

    I appreciate your kind words. They echo something I read form Dr Nato Bioggioni. You will find his name on many of the studies. He has concluded that stable control of blood is highly unlikely and most probably unobtainable. He basically said we should focus on quality of life. Make the most of it. While I was nursing, I was also going to school where became a geographer and historian. I watch and study geopolitical situations around the world. Its getting pretty exciting out there. I still very much enjoy my life, wife and everything. I have quit chasing a cat named Rheos II. Its a device under study than involves an implantable device like a pace maker with electrodes to the carotid  arches to mimic signals of a baroreceptor. My doctor looked into it for me told me it was not working. It was good for me to know that, and I was glad he put it to rest.  I feel very contented with my lot in life regardless.

    Michael

  • OK I’ve just had a quick flip through a couple of reports

    I found this

    We propose that labile hypertension and orthostatic intolerance can develop as a late sequela of neck irradiation, due to chronic carotid baroreflex failure, which in turn is due to radiation-induced accelerated development of carotid arteriosclerosis.

    Quite a few of us are aware of the arteriosclerosis issue. 
    Lots of us are taking precautions right from the outset. Keeping weight down, maintaining fitness, controlling blood pressure and cholesterol. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • FormerMember
    FormerMember in reply to Beesuit

    Hi beesuit

    Your information is correct. The chronic aspect of baroreflex failure is an average of 6 years and 4 months form the radiation. I did not pull this number from the sky. The very first study I ran accross studied 67 subjects. That was the average time of onset. 68 if I count myself.  as to aggravating and exceleration atherosclerosis, no doubt. All I can say is I was not hypertensive prior to therapy. Also, when investigation my dizziness, a ultrasound study done and found no significant problem. I  have post op'ed many carotid endarterectomy patients. they all suffered advanced atherosclerosis of the carotids, none ever had a baroreflex failure. There are few conditions that produce it. One study from abourt 20 years ago suggested it less than 10,000 in the country from BFR. It is only due to advances in therapy that our numbers are growing

    I believe once you have taken the radiation, the die is cast. Of course all survivors head and neck cancer will not develope BFR. There are many variables here. The state of your carotids is irrelevant. Its a radiation issue. Without the radiation, there is no BFR. I believe that what matters most is where did you take the hit, and what was the dose. I know my carotids were hit. An interesting fact for men, is the pattern of our whisker grow provides a sort of mapping of exposed areas. All my growth stops at my lower jaw line. no more on my neck. an oral surgeon pointed that out to me when she needed to pull some teeth. She could tell by my chin whiskers it was safe. She also sent to Zion for a copy of the mapping to confirm. Also to be safe, she sent me to travis AFB for 30 dives in a hyperbaric chamber. all because of radiation. As i mentioned before, I was stage IV. I was given the maximum chemo dose and radiation that a human can take.  Most don't have it as bad as that. I truly hope that I am in a tiny minority.

    You are wise to take the precautions that you do. But please, after 6 years, get a BP cuff from amazon. Omron makes pretty good ones. I have a self contained unit I wear on my upper arm. Just push a button you got it. I just pushed my button- 227/134 P 97. Time to medicate.

    Best of luck and wish you a wonderful life

    Michael

  • I have to have a tooth pulled next week. Whiskers would be an asset  Wink

    I have an Omron. I am obsessively familiar with it as I suffer badly with white coat syndrome. You’d think I would have been cured of that by now Joy

    Good luck Michael. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge