Melanoma Stage 3 neck radiation..please tell me what to expect?

Loracdraw
Occasional Contributor

Melanoma Stage 3 neck radiation..please tell me what to expect?

Hi, i was diagnosed with melanoma cancer Stage 3, on New Years Eve...2021.

I have had the lymph nodes out and it has been recommended to do 5 weeks of neck radiation and then a year of target therapy.      Please can someone share their experience with neck radiation including side effects, im terrified!   Thankyou....

24 REPLIES 24
sch
Super Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

Hi,

It's perfectly normal to feel terrified. The unknown is a scary thing.

Can you tell us a bit more about yourself?

Do you have family and friends close by who can help support you?

 

While I haven't had your cancer type, I thought I would share some information from the cancer cancer website.

https://www.cancercouncil.com.au/head-and-neck-cancer/treatment/radiotherapy/

 

It might also be worth calling the cancer council and having a chat if you feel like it.

https://www.cancer.org.au/support-and-services

 

-s

Loracdraw
Occasional Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

Hello,

Im 80kms from Adelaide. Live alone but have family support and friends.   Have 2 weeks to decide whether to take neck radiation, then target therapy, or skip radiation.  My lymph nodes in my neck are gone and i have stage 3 melanoma Im in my early 60's and would like to hear some feedback from anyone who has has neck radiation.

sch
Super Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

Hi,

 

There is a thread that has been running for some time that might be worth having a look.

https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-sid...

 

@CaptainAustralihas documented a substantial amount of information about of his battle.

 

Take care!

 

-s

OzStu
Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

I had 7 weeks of neck radiation.  Actually everything from the bottom of my ears down to collar bones 360 degrees, mouth, throat, the lot.  Was on cisplatin chemo as well.   My skin was falling to pieces after week four.  I had to have it all covered in burn gel, and gauze, and have dressings jigsaw puzzled all over.....no adhesives to my skin. These had to be redone four times a day.  My bro stayed with me and done all my dressings.  Apart from that,  taste went, and everything tasted like shit.  Had a feeding tube in stomach, but only used it for the last week and about a week after treatment.  Skin healed really fast after treatment stopped.  Two weeks after it looked like bran new babies skin.   I don't grow any beard from just under jaw down, and the sides of face is sparse.  My mo and goatee came back to normal.....except most grey hairs were no longer grey, original color again.   Taste started to impove after about a month.  Saliva went to about 25% at worst,  now it's back to about 50% nearly a year later.  Taste is probably around 80%.  I developed lymphadema under jaw and down neck a bit.  Slept with compression thing on at night and that stopped the fluid building up.......while upright I didn't get any build up.  I done lymphatic massage couple times a day as well.   I used a near infared light on my neck and jaw for a couple of months.....now I don't have lymphadema anymore.   Skin is good,  taste is good enough to enjoy food,  saliva is enough that I don't suffer dry mouth, although I seem to have to sip water to get really dry things like crackers down comfortably.   Had sore throat pretty bad for couple of months after treatment,  used numbing liquid for that and that was good.   Now just a slight hint of burning now and then at back of throat.  Had numerous bouts of oral thrush and now gargle a few times a day with a mixture of bicard soda,  salt,  and apple cider vinegar in hot water.   No more thrush.   I do neck stretches daily, and mobility and flexibility is probably better now then at any time in my life.   I had swollen saliva glands that I could feel for a long time,   they have shrunk to almost normal now.   I have mild aches and pains which come and go which on there own aren't severe enough to affect me but have a mental impact because they worry me that its cancer coming back.   I've had one just under my right side of jaw going up to my ear for a few days now.   I find the weird convoluted stretching exercises if invented make it ease up, so i figure it's a bit of fibrosis developing. 

 

I take vitamin K2 and D3 and calcium together for bone health.  I do resistance exercises for my neck muscles enough to pump them with blood, as well as stretching.  And I use near infared light on the area for 15 mins per day.   I do all this to minimize the chances of developing late onset side affects.    I really don't feel, or like any different then before I had cancer.  Apart from not growing any whiskers under my jaw.   In fact I probably look and feel a bit better because I got my weight down and I'm exercising and eating better.   I had 35 radiation treatments at high dose.   So not everybody turns into a crippled wreck after radiation treatment.   You're having much less......so fear not.   xo  

AstroChris
New Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

Thanks for your post Stu. I started week 3 today (16) of 35 zapps and 6 x chemo's. So far I have found the chemo to be good, as they are pumping me full of IV hydration. I have not found any problems with it. The radiation has started to kick my butt tho. I have started the dry mouth and glugy spit. My cancer is on my right tonsil at the base of the tongue. I'm finding that I have to stick to "MY SCHDULE" as a minimum for my self medication, oral care and nutrition.  It gets a bit hard at times, and I'll admit I haven't stuck to it 100% of the time, but for the most part...it's going OK. Glad to hear your doing well and thanks for your words. They helped me, I'm sure they'll help others. Take Care mate. 

AstroChris
New Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

Hang in there, you are on a journey like you have not had before. You are going to have everyone watching your back. Family, Friends and the medico's. They are all going to be there for YOU! To support you. Listen to the professionals advice, ask questions, research reputable web sites and be prepared for what's going to happen. For me, I want to know what was going to happen. That takes away a lot of the unknowns, puts me in a better position to deal with. I'm only 3 weeks into Radio and Chemo, so no expert by any means. I think you will also find some help when you start your treatment with other patients as well, I have met some going through similar treatments, we seem to bump into each other on Monday's for Chemo, so say G'day, you never know. Good luck with it. Stay strong within yourself, having a positive attitude is very important for your own well being. Peace & Love

AstroChris
New Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

For Loracdraw above..........^^^^^^
Budgie
Super Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

Hi @Loracdraw,

I only had 5 sessions of radiation to my left jaw area. All was fine except 6 weeks later I had hair falling out in the area that was zapped. Also, 6 months down the track I developed Lhemitte's syndrome; every time I bent my head, yawned or breathed deeply I would have a zapping sensation down the lower half of my legs. This was due to the myelin sheath around the spinal cord being damaged. It only lasted around 5-6 months, then everything was back to "normal". My hair grew back nicely too.
You have some fabulous info supplied here on this thread. I hope everything goes well for you, whatever you decide.
Take care of yourself.

Budgie

OzStu
Contributor

Re: Melanoma Stage 3 neck radiation..please tell me what to expect?

You'll be fine Astro.  They know where your cancer is.  They only suspected where my primary was, and it had already spread to my lymph nodes.  biggest lump in neck was 32 mm.  There were a couple of small ones too.  Google d-Limonene  if your interested in preserving saliva function.  I started taking it in second week, and kept taking it for about a month after radiation.   I was told my saliva production would not come back,  but it has.  I estimate it is over half now.  This supplement was researched by a radiation oncologist.  Can't remember her name.  in tests on rats they found that rats subjected to radiation lost most of their saliva production and never regained it.  The rats given this supplement didn't lose as much, and regained a lot of the lost production.    This is exactly what has happened with me.  I don't even use mouth gel or carry a water bottle around with me.  I eat pretty much whatever I want without problem for the most part.   They hadn't found out exactly how it works,  but they suspected that it somehow protected stem cells in the saliva glands and these stem cells allowed the the regrowth of gland tissue after treatment stopped.  They found no decrease in the affects on tumors in the rats that took it.   They also did find that it accumulates in the saliva glands.......that much they know.

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