Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[Azjoetrucker]

Thank you, Mike

[MikeR]

I had my oncologist review the article I posted on this page about the squamous cell / medical marijuana connection and this was her thoughtful reply:

1) As the article stated, "researchers identified that the molecular mechanism of THC...activates the p38 MAPK pathway, which allows cancer cells to grow uncontrollably." So, if you were only using CBD oil, then this is not a concern for you as the "legal"/over-the-counter CBD oils do not contain the THC component. However, even if you were using a full spectrum oil which included THC, then this is in reference to active cancer that is PRESENT and being induced to grow. This is not your case as there has been no evidence of active disease since completion of your treatment. Also, this is still in the study phases and has not been proven. Hence, why they say "cannabinoids MAY accelerate..." since they do not know for certain.

2) The prior association between HPV-related head and neck cancer was in question as to whether this was simply an association (due to the fact that the people who are using marijuana may also simply engage in promiscuous or more risky sex behaviors, thus having greater exposure/risk to HPV-related diseases) vs. an actual causative relationship where marijuana can cause HPV-related cancer. To date, there is no evidence that marijuana by itself causes cancer.

3) Keep in mind that these are lab models and may or may not translate in a clinically meaningful manner to humans.

So, in short, although this is a good investigation to get things started, I do not see anything here that supports evidence that it actually CAUSES the HPV-related cancer but rather, once the cancer is present, it can cause it to progress faster. But whether that actually matters clinically or not, is yet to be investigated. It may not matter. Keep in mind that it is just preliminary evidence and needs further exploration.

[Jen827]

Hi Everyone - hope you are all staying safe and healthy through this pandemic.  Quick question - has anyone experienced phantom smells?  How about smell/taste disappearing again after it partially returned?  I am dealing with both at the moment.  My disgusting phantosmia is cigarette smoke which is something i am most certainly never near.  This is awful.  That started a week ago the day my smell/taste decided to disappear again (COVID19 not a concern since I've been in total isolation).  Thanks in advance for any responses!

Jen

[ShaundenBakker]

Hi MikeR,

you are a lucky man to have an oncologist who has taken the time to respond so comprehensively to your enquiry. I have followed your posts with interest as I have had passing thoughts about medical cannabis myself over the journey. Will you now use it after digesting your oncologists thoughts?

BR, Shaun

[CaptainAustrali]

Hey Jen - its interesting timing that you get this symptom during the pandemic, and impairment to smell and taste have been circulated as possible signs of COVID infection.

They are also signs of other general infections, especially if they're already impaired somewhat from chemo/radiation.  But they can also be signs of cancer and other problems with the body, nerves & brain.

I've never experienced it, but my comment would be to take it pretty seriously and report it at your earliest convenience, to get medical advice.  (Saying this because you hinted about being in total isolation, so might be a bit unlikely to seek the advice?)

I've had taste impairment from the chemoradiation, but it was an initial drop (complete loss) during chemo, to rancid-taste dysgeusia, followed by slow receovery where it came back over a long period of time (iterative slow improvements over a year, plateauing out at about 80%ish of where it was pre-treatment).  No experience with loss of smell.

For me the big concern is if these changes have come on recently, and there's no clear reason for them.  I'd just urge you to get checked out.

[MikeR]

Hi Shaun. I am due to meet with my cannibus MD next week and also review this study with her. Having been on the RSO for a year now, it's a bit difficult to come cold turkey off the RSO, but I am concerned.

[Jen827]

Hi Cap,

Thanks for the reply. Yes i know at first i considered COVID since i am an ER nurse but the timing was long since i had seen another human. While not impossible, it is unlikely. I am getting antibody testing for it this weekend to see if i was exposed yet.

I ran the same course you did, no taste to bad taste to some return of both taste and smell and then a week ago this happened. I have no other signs of infection. I have spoken to my entire treatment team and they are convinced it is just more effects of the radiation popping up. Damage to the cranial nerve involved with smell is likely. That in turn destroys taste. We will do an MRI of head and neck to rule out all the ominous items like reoccurrence, brain tumor, stroke, etc but they do not think i will get any answers with that at all. That is why i was wondering if anyone here has experienced anything similar. Oh, and they started me on gabapentin yesterday - off label use for phantosmia/parosmia. This one is coming up to par with the mucositis in terms of disruptive. I am praying it goes away as quickly as it popped up.

Who knows! Maybe i had mild covid and beat it and this will just disappear like it is for all my covid patients! I am hoping for this scenario as it would be great to have some antibodies so i can return to the frontlines asap!

Thanks! Everyone stay safe and healthy,

Jen

[ShaundenBakker]

Sorry mate, but could you tell me what RSO is?

[Jay]

Hi Captain! 

I just wanted to thank you for starting and sustaining this invaluable thread. Just wading through all the advice and experiences. 

Top Job....j

[Cheftrevor01]

Hi Mate

I have head and neck cancer but my cancer started in my p arotid g l and that was removed to now having Terminal Sinus Cancer with mets to my lungs. In 2017 i was told i was going to die within 6 months that was 3 years ago and today i am still fighting cancer and still not winning but i am still alive. However although i have be through the mill of having Chemo for 11 months Cisplatin 9 months of Immunotherapy and 7 weeks of Radiation. My last radiation was in February 2020 lasting another 3 weeks but ever since my last treatment i have completely lost my mind and unsure why all of a sudden i am suffering severe anxiety. I feel like my whole nervous system has been shot. I cant understand why i am so overwhelmed by this now because before i was doing really well and only getting fatigue but picking up really well but this time i am suffering severe anxiety that i no longer sleep in my bed with my wife and everytime she gives me a hug i feel like i am scared that i am being suffocated and cant breathe. Even putting on warm clothes for the winter i hate wearing because i feel like i am being choked. Not sure if you have heard other head and neck cancer sufferers have experienced this but i certainly dont know why i am experiencing this this time round because other times i got through my treatments well.

Please let us know your own feelings of fatigue because i am wondering this time did they damage something in my head during my radiation because radiation does bother me a lot as last year my brother during his radiation under his arm caused his lungs to go fibrous and losing my brother 4 weeks after his treatment. He was a healthy man then deteriorated so quickly. This is why i am wondering did the treatment to my frontal sinus with radiation damage some nerves to my brain causing this anxiety.

Get well soon mate and keep up the fight.

Best Regards

Trevor