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

[sheryn]

Hi,

Thanks so much for your reply. The information you provided is really helpful. The specialist said two,three weeks delay won’t make any difference,but I don’t believe so, especially for those late stage patients like my father.

Could I ask you which stage you were at? My father was staged at least a t3n2b(stage 4a)in the initial consultation. I do feel two,three months is too long for my father’s stage. If sadly it progresses to a 4c,he might lose the last chance to cure. Thanks again for your help, wishing you best of luck for your now and in the future.

Sheryn

[CaptainAustrali]

Hi Sheryn

I can't speak unilaterally, only provide my perspective and experience, but I'd start with a simple thing I learned:  trust your doctors.  They do abide by a thing called "duty of care" and also "evidence based treatment".  If there's a statistical impact of delay in treatment in your dad's case, quite simply - I can't see that a doctor would risk the litigation, and also the breach in their duty.

My case ?  I was more advanced than your dad:  T4N2BM0, and the initial prognosis was that without successful treatment, I would probably have less than 6 months to live.

And yeah, I had a delay of about 4-6 weeks between diagnosis and treatment.  The same stuff described already - meeting with a dentist, scans, having a radiation mask fitted, etc.

I think, at the end of the day, if the cancer grows a little before being saturated with chemo/radiation, it's probably in the 'no big deal' category.  The chemoradiation will either kill it or not.  I was worried about metastases .. spreading to other parts of the body, etc .. but my doctors weren't.   So what can I say ?

In cases (like mine) where the cancer could grow and obstruct an airway, they'd probably modify the default schedule accordingly.  But where there's no imminent threat of the cancer kiling the patient, and they deem the risk of spreading to be low .. well, they'll schedule accordingly, I guess.

There are cancers that can knock you down overnight .. blood cancers, leukaemia, breast cancers - I think they are candidates for swift surgical intervention, immediate medication, etc ...

But for head & neck stuff, my impression is that they follow a pretty known trajectory.

My personal impression:  the doctors wouldn't risk your dad's life or treatment plan, the delays are necessary (whether medically or as a part of hospital logistics), and in the balance he's receiving the standard of care appropriate for his disease.

But hey .. what do I know ?

I can relate absolutely to the anxiety, my advice is to let it go, watch the clock, tick off the days, and wait.  The treatment phase, and after, is very bad, this cancer show is like being in prison, you just have ot mark off your time .. and maybe one day ... escape.

Let me warn you also - after treatment is finished, you don't suddenly know that everything is OK.  You have a wait of a MINIMUM of three months before they can do a proper PET scan to detect remaining cancer, and even in that time window they have false positives due to inflammation (that was my case, it was gut wrenching).  At 5-6 months I tested all clear (big relief).

As a wise man (Tom Petty) once said:  the waiting is the hardest part.

[April-Showers]

Hi Sheryn,

Sorry to hear about your Dad.  Are they planning to do a neck desection before treatment?  If it is inoperable then they will plan the onslaught of chemo and radiation.

In my case my cancer was discovered through what was to be the removal of a branchial cleft cyst in my left neck.  I had a fine needle biopsy prior to the op and all tests came back negative for malignancy.  So post operative came the knock down news that it was cancer....but the good news it was one node and they got it.  That was December 14, 2016.....I started rad and chemo end of Jan 2017.  I had to wait at least 6 weeks to recover from the neck desection.

I think it is always good to get a second opinion but as Simon pointed out oncologists don't make many mistakes....they do have a plan of attack they follow for HN cancer but saying that every cancer is different.  You need to feel you can trust the plan you are being given for your Dad, and if you feel anxious or disagree you should discuss it with the oncologist.  There will most definately be a logical explanation as to why things are being done in a certain way or time frame.

All the best. 

[Bill1]

sorry to hear about your father....its all to surreal for anyone to comprehend....mine came out of the blue with an inflamed left tonsil without pain...didnt know it happened until i looked in my mouth feeling something there and bam...inflamed tonsil without pain....just got my biopsy back 2 days ago and its "INVASIVE POORLY DIFFERENTIATED SQUAMOUS CELL CARCINOMA"..scheduled for CT and PET.

i am an avid runner and was preping for a marathon so i am at minimal weight and body fat.....not good i take it for what i am in for...Dr. said it could be Surgery ? Kemo ? Radiation? or all three

no pain, no obvious lymph node swelling or pain he can see...must get test results....

i have no idea what i am in for but at age 70 i would imagine it will be a roller coaster ride wearing a blindfold....

has anyone specifically had a tonsil cancer on the site that anyone could give me some detail of their treatment...like feeding tube needed, ability to function daily, sleeping without meds etc ??? just curious if anyone can help inform me.

my thoughts and prayers are out to all of us that have had this thrown upon us to try to heal and continue with our lives...

thank you

[April-Showers]

HI Bill,

Really sorry to hear about your diagnosis.....It is shattering news, I know how you must be feeling right now.  You sound like an incredibly fit sort of guy at 70 to be running marathons!....Good on you!  Unfortunately this terrible disease does not discriminate, at all.

You will be guided by your oncologist and surgical team about the next step, as you would have gathered from this thread every cancer is different and while we have all had Head and Neck cancer our treatment has been different.  Saying that, the main treatement for HN cancer is radiation therapy.  

Just take it as it comes Bill everyone has had their own journey with this and you won't know how this will affect you until you are in it.  Hopefully you have a good support network with family and friends.  You will need it.

Hopefully you will get some direction on what next for you as far as treatment or surgery goes.  All the best and stay positive Bill we are all evidence you can get through this!

Sending heart felt regards,

April

[CaptainAustrali]

Hey Bill

Mate, there's not a lot of great information out there, so when you're first diagnosed and grappling to understand and ground yourself, it's hard to find the info you need.  It's all saturated with bland corporate advice, commercial offerings, self help manuals, unproven natural medicines, etc etc.

If you roll back to page 1 of this thread, it started with that need to understand, and as I learned, I tried to keep dropping updates with more information - stuff like the mucositis for example, as an isolated symptom.

Rather than re-hash, what I'd suggest is, wind back and have a read, I really hope some of it might be useful.  There's a bunch of folks who have similar/same disease profiles who have come and added information,  there's probably a lot of information trapped in this rolling conversation for someone with your disease profile.

My cancer was the same, but I think larger and more clearly marginated.

People hesitate to give advice, but let me give you mine (with a caution to make your own decision):  Get the PEG tube.  As you're superfit, you really can't afford to lose bodyweight, and your body will cannibalise muscle before hospitalising you with malnutrition/dehydration.  (I had an advantage being a fatty, ironically lost all the weight, but the radiation induced thyroid damage has broken my metabolism, piling it all back on after treatment, haha).

Buddy, think of that - during the course of treatment, my body required to access about 30k of stored energy.  When taking chemoradiation, your body is under duress.  You need .. shit I'm sorry I forget the calculation .. something like 0.8g of protein per kilo of bodyweight .. in normal conditions .. but with your body under duress you need to take as much as 4x that amount.  That's ignoring calories, hydration, nutrition and talking protein only.  So let's say you weigh 80k (for easier math), then each day you'll need to take 160g of protein - which is a combo of steak, chicken breast, eggs, etc for a body builder.

My friend, my advice for you to take with a grain of salt .. get a PEG tube & look at those mushasi weight gain powders that bodybuilders use (I know it might read crazy, but dead serious).  You'll breeze through most of your treatment .. let's say it's 7 weeks .. OK .. it's about week 5 and 6 that you'll blink and everything starts hitting at once.  Up until then you only contend with a loss of taste, so you can force eat just fine .. (I was unlucky getting a thing called rancid taste dysgeusia - if you get that you'll need the PEG tube sooner).

Anyway, the musashi shake are a great delivery system for protein, even if you take them by mouth to supplement your protein intake in lieu of eating a large steak, chicken-breast, eggs, tuna, etc.  The very idea behind the shakes is to provide a healing body with mega-doses of protein, and not to be calorie intensive because most of them want to stay lean and gain muscle.

Once the dry mouth, mucositis and other problems set in (you're bound to get them to some degree, and honestly it's better to have the PEG and not need it than need it and not have it - in that scenario you are hospitalised, intubated via nose maybe, ugh) .. anyway, once those problems set in, you calculate the amount of protein shake you need via PEG per day for optimal healing, and administer it like medicine (you also take pain relief etc that way).

Anyway, prioritise:  hydration, protein, calories, nutrition (calculate the amount of calories you need for weight maintenance, and even continue exercising if you can and you enjoy it).

Thats my two cents to take with a grain of salt, noting:
- some people go through treatment entirely without PEG tubes

- pre-existing airway stuff like GERD can be an influencer of bad mucositis (which is the main reason to have a PEG, as it takes away your ability to eat/drink normally)

- its not just mucositis, some people have pain that prevents BY MOUTH, me, I'm good with pain, that wasn't a problem, so as April says, everybody's mileage varies.

- also some people have complications when their PEG is installed (about 10%).  I did (post surgical fever, which settled)

That's just zeroing in on one issue that for me was hugely important, what I suggest is have a read, look at folks with similar profiles, and then also take those little factoids and do pubmed searches if you're inclined.

Pubmed is a massive library used by scientists today as a research tool, basically you can compose a search phrase like "pubmed surgical risks peg insertion australia" and you're almost certain to find an article tabulating the stats.  

So yeah, suggest getting impressions and anecdotals from this thread, noting the stuff that concerns you most, read the science, then when you talk to your oncologists you'll already be pretty well informed.

[Bill1]

Hi Captain....

thank you for your reply.  your words are well taken and needed.... sounds as if your fully recovered and back to normal ?  did you have anything spread to the lymphs ?

got a few questions reading your post....i have read where people had a nasal tube inserted when they could not eat due to pain...do you think that is for sure not the way to go...you sound like you really looked at this.

did you get the peg right away or wait till week 2 or 3 etc ?

i take a LARGE regimen of vitamins daily....do you think i could crush them and take out of capsules and get them in the peg or nasal tube or just go without for the weeks....

my biggest concern is my mobility thu it all...i have family that i care for with medicines etc and one is diabetic so i get up thru the night to check blood sugar and give insulin as needed...will i be knocked down and not be able to function do you think ?  i have a ton of responsibilities to tend with day and night....

i am assuming they removed your tonsil ?  if so when...before or after treatment....

i weigh about 160lbs so your protein number is close to what i should need if your calculation is correect since i weigh just under 80k s...160g of protien...thats a lot...will need the Musashi shakes...i dont know how else it could be done....

did you use over the counter pain relief....i read about aspirin and others when you need it....

did you get kemo and radiation...that is what my family dr said may be my course of action.

also, from what i have read, i actually stopped exercising already thinking i need to fatten up some if possible and save my energy during the treatment as to not loose muscle mass etc....at my age it is almost impossible to gain muscle mass without taking certain drugs which i would never do...i do it the hard way and try to maintain....

i hope i can function thru it all....and not loose it...?

[CaptainAustrali]

Buddy here's my two cents, and in giving it, I'd urge you to read up on any topic that concerns you before making your final judgement call.

1) PEG insertion:  it was prophylactic, meaning that it was put in during the break between diagnosis and BEFORE treatment began.  I read about the surgical risks, all the literature around PEGs and winded up just trusting my oncologist's advice that it's better to have it in case you need it.  It was a night in hospital and some post surgical fever complications, but on the positives - it saved my life, without it, I would have been a wreck.

2) Nasal intubation:  that's not a preferred method, as I understand it, rather something they do if someone winds up in hospital malnourished and unable to eat by mouth (because they're too messed up to risk PEG surgery at that time, I guess.).  The nasal tube is less convenient to use, and apparently slightly more risky, it's more of a backup scenario, if that makes sense ?

3) Meds via peg:  yep, you get a mortar and pestle, liquify as much as possible, and insert them into the PEG tube with a syringe.  Basically the tube is an access portal directly into your stomach.  You only have to be mindful not to get it blocked (ie crush the meds pretty well).

4) Mobility:  me, I spent a lot of time playing computer games, and sleeping whenever I needed to.  You get hit by waves of fatigue, and in my case mucositis robbing me of sleep and comfort, so I needed distractions, and just rested whenever I needed it.  Note:  up until the 5th week of treatment, it's pretty much fine, might feel like a breeze .. it's after the second round of chemo and toward the end of treatment that things got bad for me, and for about 3 months post-treatment.  As to caring for others .. I really don't know, mate.  I'd investigate back-up if there's any available to you, even look at community carer programs or whatever for the period where you are in treatment and immediately after .. can't care for others if you can't look after yourself .... but sure, I have 3 young kids, and I was still able to spend time with them, lurch to my youngest's birthday (he turned 4 right in the shittiest part of my treatment).

5) Tonsil removal:  no, I didnt get surgery, it was non-viable due to size and position of my tumour.  However, my tonsil is gone, apparently it was destroyed by the radiation.

6) Protein:  if you mix that bodybuilder protein powder into a shake and take it via PEG, working from your specific math in terms of protein and calories, it will go a long way to helping your healing and wellbeing (assuming you cant eat/drink by mouth late in treatment).  The nutritionists will give you these ghastly pre-made shakes and say you need to take like 20 per day, but that's because they don't carry the amount of protein and calories available in the professional sports shakes.  it's a tip you won't get elsewhere, and my nutritionists reluctantly agreed it was genius, even though outside the hospital's guidelines.  You can also put high calorie liquids into the peg, stuff like custard and eggnog and whatnot .. anything that will give you mega-calories needed to maintain your weight

7) Pain relief:  I took panadol until late-stage of treatment, when the doctor got annoyed with me and insisted I take the morphine based medicine, they give you something in-between too, I seem to remember it's called Endep or Endone or something.  I'm good with pain, and my mother was a junkie, so I had some concerns about morphine, but took it when the doctor insisted I start, his specific words were "Simon, I really don't understand why you aren't screaming in pain right now !  You're just taking panadol every 4 hours ?  Look, I don't want you to have a siezure or anything, please start taking your prescribed pain relief"

😎 Treatment received:  Adjunctive chemoradiation.  3x high dose cisplatin (chemotherapy) and 35 treatments of radiation, 5 times per week over 7 weeks.  Apparently this is about the norm.

9) Exercise and general wellbeing:  get through the tunnel, your tunnel may not look like mine did, just navigate through it and do your best, be kind to yourself, easy on yourself, and ask for help if you need it, especially from your doctors.  My advice re: exercise is, I guess - do it if you feel that you can, and if you think it will make you feel good.  I'm no expert, but I have read about how light exercise during treatment can be helpful - also you will be taught some new exercises (neck and swallow) to help mitigate problems with the radiation treatment.

Lastly-  not sure if it's mentioned much in the thread .. dental stuff.  You can get a thing called .. ahh, from memory ... radiation osteonecrosis of the jaw .. where the jaw is weakened by the rads, complicating any and all future dental interventions.  You can get a special toothbrush and toothpaste to help mitigate this and which is also designed for dry mouth from chemoradiation .. probably your cancer care team already mentioned this, if not, be aware ?

Cheers

Simon / Captain Australia (heh, yeah, I really am actually Captain Australia, if you're curious there are probably pictures and videos still up around the internet)

[April-Showers]

HI there Bill,

I can add to what Simon has said.  I agree, at your weight I would really recommend the peg as losing weight is inevitable with radiation treatment as the damage is far too great to maintain a "normal" intake.  By the end it is all about getting enough protein in to survive and anything extra that will support the healing process. 

Personally, I didn't want a peg and was determined to get through without it...which I did.  By the end of third week of treatment I was on a liquid diet consisting of sustagen and any other protein shakes I could get down.  By week 5 my intake was restricting and my dietician was talking about nasal feeding if I was unable to up the intake to maintain the recommendded protein intake.  Getting protein shakes down became a traumatic and painful chore.  I lost over 30 kgs and by week 6 of treatment I was unable to even drink water...being a stubborn thing I went to bed a stayed there living on sips of water for the first weekend that treatment ended.  I truly thought I had met my end that weekend, my husband begged me to go to emergency but I thought I would rather die here than there.  I think the weight I had going into this and the otherwise healthy state I was in helped me get through without a peg...and perhaps being a stubborn thing when it comes to medical intervention!  Like Simon said, do your homework and be ready to make decisions based on your own research and individual preferences.

I can say each day was a step to recovery .... a very small step and by the monday I was getting one of my shakes down again (I should have been taking 4 a day)....but still losing drastic amounts of weight.  Like Simon, I had a bit of weight to loose going into this, excercised regularly and maintained a very healthy diet. 

I also take ALOT of vitamins and supplements but as soon as treatment started I was told to stop all of them due the interactions with chemo.  So my advice would be to vitamin up now while you still can....C is a big one....if you can source IV administered Vit C I would definately advise that.  If you are in Melbourne I can recommend the NIIM clinic (www.NIIM.com.au), they do high dose Vit C over the IV.

As for pain management......you will be offered a full range of drugs to get you through this.  It will be up to you what you take and don't take.  BUT...you will be on heavy handed pain releif for some time.  It is all trial and error about what agrees with you and what doesn't.  As the side effects ramp up so will pain releif....my advise don't suffer in silence.  I hate any sort of medication, we eat organic produce I cook from scratch, we avoid toxins and nasties wherever we can.  So going into this it was very confronting to be offered so many drugs.  However, I soon realised it was a temporary measure just to get through.  For me fentanoyl patches worked really well as I stuck a strip on my arm and it went into the blood stream without taking anything orally.  The dose could also be increased as needed, but with increased dosage came increased drowsiness.  I was offered cocain mouth wash which I refused to take so they offered me other numbing gels to use when trying to get my shakes down.  Aspirin is not going to get you through this....you are going to go to the boundaries of your outer most pain threshold you will need all the pain releif you can get.  The downer on all the pain releif is you will be very drowsy and spend alot of time sleeping.  Be prepared to rest up, your body will take a battering and rad and chemo are already exhausting...on top of that you will get the drowsiness from pain meds.

As for my diagnosis, mine was an unknown primary that has spread to one lymph node in my left neck...so stage 4.  Due to the unknown primary, despite having a neck dissection to remove the affected lymph node, I had to do rad and chemo.  I should have done three chem, as is standard practice, but I couldn't do it so I refused (with consultation with my chemo oncologist) to do it.  

ABout mobility, I didn't suffer any problems with being mobile....just extreme tiredness.  You will need to rest as much as you can to face the rad every day for 6 weeks.  The first 5 weeks of rad are completely manageable and you may even be still eating.  There was another guy having the same treatment as me and he was drinking coffee 5 weeks in!  Everyone is different, but by week 5-6 you will quickly lose ability to eat/drink and even swallowing will be painful.

Simon can give you more heads up about the peg.

I am two years out now and pretty much back to a 'new' normal.  What remains - limited saliva production and thyroid damage.  Small price on the greater scheme of things.

[Debnova]

Bill,

Being physically fit will help. I was diagnosed with right tonsil squamous cell carcinoma in Dec 2018. I am a long distance cyclist. I did not have a PEG. I went to a liquid diet at about week 4 of radiation and nothing warm or hot at soon after that.  I didn't lose weight until after treatments ended and I was put on a very strong antibiotic. That was my downslide. From that point I have had stomach issues which compounded the mouth, taste and saliva issues. Basically even now I don't want to eat. And I am still losing weight. 

You have to weigh the negative longterm effects of the PEG. If you swallow well and are healthy I would do all I could to avoid it. 

I am sorry for your diagnosis hang in there. 

I hope you recover well!

Deb