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

[Bill1]

Hi Debnova

thank you for your input...sorry about your post opp with the antibiotic....they are very harsh and can cause all kinds of problems like you are having...they are the number one stay away for me but now it looks like they will dish them out as a needed med.

did you still work out while getting treatment ?  i am afraid it will diminish my weight since i do not have much fat......i am trying to sort it all out and calm my wife at the same time...it hit like a lead balloon...thank you for your infput and thank God for this website !!..

[CathV]

Hi Bill

I hope you get on well and sail through it! Simon has given you lots of info about PEG which is great - thanks SImon! I didn't have one. Mine was a sinus cancer in the mucous membranes, on the left (what is it with the left side of the body eh?!). I had a nasal feeding tube while in hospital because my upper left jaw was removed and I had fat put into the cavity where the tumour was - I was nil by mouth. I've got a pretty good pain tolerance too and I hate taking pain meds but I had to take some by week 4 or 5 as I was literally crying with pain as I tried to eat (main problem was a very burnt toungue from radiation). Even then I didn't have PEG although I stopped eating altogether and tried to drink those protein shakes that the nutritionist gave me (they were so thick I had to do 1/2 shake 1/2 water). When I was on endone and (the other one begining with t - can't think of it atm) my husband was frightened because I was basically a zombie. I had stopped talking.

However, I am now back at work and am going back to full time next month. You do get back to a sort of normal. It's taken me two years to get back to my weight before I was diagnosed (I was about 47kgs and lost lots of weight - nearly got to 38kgs).  I may have more major surgery in the future because the fat that was taken from my abdomin and put in my face  has shrunk lots - more than the plastic surgeon has liked. So it is back to eating fatty things to get that fat for my face! That's one of the things about radiaton - it shinks tissue. The other thing is that it damages your thyroid. I'm on thyroid hormone but it seems to be fixing itself as the amount I am taking has decreased.

Simon mentioned PubMed - that's great! I am a medical librarian and work at a major hospital in Melbourne. The main component of PubMed is Medline, a very large US biomedical database (hardly any Australian content) . Most of the content is clinical but there are some consumer websites out there. I can look for information for any on this forum if ppl would like. Even clinical papers have to be taken with a grain of salt - it is common to use a system called critical apprasial which is basically assessing whether the information is evidence-based and can be used in practice.

And no, I didn't look up my cancer haha!

Catherine

[CathV]

... And I forgot to mention. Dry mouth with effect your teeth. I was referred to a specialist dentist and see them every 3mths. I was advised to use Tooth Mouse which strengthens teeth. Also do those exercises if prescribed by physio - neck and mouth stretches etc. I find that if I don't do my mouth stretches, my jaw can get stiff and I find it hard to open my mouth.

Everyone has different experiences but we are all doing this together. 🙂

[Bill1]

Hi Catherine

thank you so much for all your info...wow, God bless you for all you have been thru ...seems everyone thats sought treatment has been thru some unbelievable experiences...one article i read on line stated....with cancer treatment, the rule is....IF THERE IS NO PAIN, THERE IS NO GAIN and all the treatment failed to kill the cancer..... i am logging in what I can get for the Oncologist meeting....got my Pet-Cat scan last night....now have that and MRI and get full diagnosis of what i have and where...i pray its only the left tonsil....but we will see

all your info is very helpful and i have written it all in a log....the one thing i worry is sleep with all that pain...did you take anything for that ... i normally sleep fine but have to get up about 3 times to take care of my diabetic cat with blood sugar testing and insulin and other family member that also takes meds....i have the strength to do all that and get back to sleep in the middle of it all...i have no one to do that for me so i will persevere and march forward to best i can....

i have been experiencing dry mouth now for over 1 year...came on suddenly...some nights i wake up and its like a beach...so i have to keep a tumbler of water at the bed to rinse etc sometimes 3 times a night ...i have lost a bit of taste as a result....i GP never said or looked at my tonsils or suspected this...but i hope it wasnt the cancer causing it and its deep set into me now....i fear all the ugliness of the treatment affects since i am 70 yrs old and everyone i have read on the blog is young...i hope this body i have been trying to keep up will hold...i am sure my age is a factor....

if you see any medline articles or others in your travels i would love to read what i can...sure anxious to see where i am on Wednesday with test results....

I would like to thank you all for your generosity with your time and interest to help me thru this hell that has been thrown upon us...

Thanks to all

Bill

[MikeR]

Hi All. I am a 53 year old father of a 3 year old who was diagnosed in November last year with HNSCC, stage 4, unknown primary. I just completed 6 weeks of radiation and chemo about 3 weeks ago. I have been following the many helpful posts here--many thanks to all.

The treatment was simply hellish, especially the last several weeks, although I am beginning to regain some energy and get out of the house. I have a PEG from the beginning, and have not really had any food by mouth for about 1 month. Anything and everything burns, I think due to Thrush, which keeps coming back.

I have been exploring some alternative approaches, as well as research trials (in case the radiation and chemo does not kill this--i have another scan in about 3 months. 

Anyway, just wanted to introduce myself, say hello, and many thanks to all.

Mike (from USA)

[Bill1]

Hi Mike...i am also in USA...and this weekend i had MRI and PET/CT...diagnosed with left tonsil cancer and spread to lymph nodes on same side...meeting with Oncologist in the a.m. and see how bad it all is...the tonsil cancer is 2.20cm and the nodes affected are less than 1.0cm....dont know what they will want to do...i may need to get a few opinions ?

sounds like you were lucky to get the PEG...everyone says its the way to go...you have finished your treatment so good luck for the future scans...its a very very high rate of success from my reading and wish you a full and speedy healing.

if anyone has a suggestion for me with the lymph nodes with cancer please remark...the side affects of the lymph surgery if they did surgery are horrendous...lymphodema of head and neck, taking out arteries and muscles etc etc...the pictures look terrible...i have to figure this out...they say they may want to cut the tonsil out since it did not go beyond the tonsil...then ???  i will get my suggestions of the Oncologist in the a.m.....another sleepless night.

its a tough battle for all of us and and it affects everyone differently but its the end result we all want the same....fully cured...its as stressful for our families as well as ourselves and i hope and pray that all of us go down this road successfully and only one time...God Bless

[MikeR]

Hi Bill. The cancer also spread to lymph nodes on both right and left side of my neck. An ENT suggested a full neck dissection at the time, but after transferring care to a cancer hospital (Moffitt in FL), they decided to wait on surgury. Depending on outcome of PET in September, surgury may still be an option.

I had the PEG inserted 2 weeks into my six week treatment. I've had really mixed feelings about it. My digestive system took some time to get used to it and I struggled with horrible constipation (which I think was likely related to the Oxycodone). I've used Senocat-S (4 pills/day), Miralax, Mag Citrate, and finally Movantik to counter the digestive slow-down from the pain meds and change in feeding route. Happy to report that I no longer am taking the pain meds (3 weeks out of treatment), and am starting to introduce certain foods by mouth (smoothies with protein powder). Still using the PEG about 5 times a day, but hoping to gradually transition back to mostly by mouth. 

The whole idea of the PEG was something to get used to. Whatever denial I was in around the cancer seemed to lift every time I used the PEG. In the end, I am grateful for it. Even with it, I have lost about 30 lbs (I was pretty skinny to start with) so I'm sure I would have been in a huge amount of trouble without it.

[Bill1]

Hi Mike

wow, quite an ordeal all of this is for all of us....you say that the cancer spread both right and left into the lymph nodes....mine is just on the left side along with the tonsil and many nodes are affected only on the left....they are going to do both my tonsil and nodes at the same time with the radiation plus one day wk of kemo.  Mine is a stage 4a.

did you get those lymph nodes taken care of at the same time ?  did they do all nodes with the tonsil, you didnt mention that in either of your posts ?

if you did, i am wondering if when they do this to me will my tongue, voice box, esophagus be affected ?  then of course there is the thyroid, ability to swallow normally after the treatment along with smell and taste and dry mouth etc etc etc....

did you have the nodes and tonsil done at the same time and what seems to be the effect now that you are out of treatment ( i know its not been long)....but curious what side affects you experienced from all of the above or anything else

thank you for your information....you dont know how valuable it is since i start in the next week or 2 and at 70yr old i am shaking in my boots as one would expect...i do not have weight to loose due to my running which i have stopped and now trying to conserve calories and eat my way to a few pounds pre treatment...

thank you and wishing you the best with your long term result.....

bill  

[CaptainAustrali]

Just a quick one mate - my tonsillar cancer also had lymph node involvement (a string of cancer on the left, and a suspected microscopic presence on the right).  The radiation took care of it, no surgery.

There's a side effect that I don't think I mentioned, amongst the other laundry-list of issues, but it's worth noting.

As a runner you'll be familiar with the phrase "charley horse", a kinda muscle spasm that can hit your calf or mid-thigh, and it spasms and all you can do is kind of thump and massage your leg until it goes away ?

OK, so as a result of chemotherapy, mucked up diet, not enough potassium or whatever, you can be prone to getting these spasms in your legs, at night, during the treatment phase and for a while after.  Yuck.  I think I DID mention this in earlier posts.

What I might have not mentioned is that as a result of the nerve damage to your neck, where the lymph nodes were dosed with radiation, you can get them in the side of your FACE.

For me it's about one a week, I guess.  If you feel the spasm coming, you can kind of slap/massage your face and prevent or mitigate it .. in many ways the feeling that a spasm is coming is just as bad as the spasm itself.

It eases off in severity as your body becomes used to working around the damaged nerve .. basically it's scar tissue inside the side of your neck, so when you move your head a certain way, the scar tissue abutts against healthy muscle, and the muscle kinda twists and goes into spasm, when it's normal movement is prevented.

Anyway, it's (in my mind) a trivial side effect, because I'm a big macho toughguy who likes to trivialise pain.... BUT ... I think I forgot to mention it previously, and it directly relates to lymph node treatment .. so ...

Sorry mate, yeah, another thing on the list.  I'm not sure these spasms are common though, it could be something like 1 in 20 who gets them to any level of frequency and severity, I can't say.

[Bill1]

Thank you for that info Capt....not looking forward to all of this...interesting you had lymph nodes done at same time also...do you have any permanent damage to voice, swallowing, taste, smell , thyroid etc or did it all seem to clear up after treatments ?

by the way i did look you up on the Internet as you said i might do...my wife an i were really impressed with your career...so even celebrities get this i guess...you seem to have a great career and life...this cancer knows no limits i guess and i am shaking in my boots .... i will see what it does to me over the treatment etc...

if you think of anything else please let me know...i have it all printed and will be following the plan when it begins...i suspect treatment in a week or so, meeting wednesday with the radiologist to set it all up for them to start.....

once again, thank you for thinking of me....and informing me of what could take place during treatment....

the oncologist said not to get the PEG now and only if i have a problem....but like you said, its easier to get it now and not later and i will need it...seems everyone used it for months and the ones that didnt have it said they were dumb not to get it....i suspect its a simple procedure outpatient ?

thank you

BIll