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Wanting advice: how to help during head/neck radiation&chemo

Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Jan 29, 2019 5:05 pm

Hi there...
My dad (58yrs old) is starting head/neck radiation and chemo in a few weeks and I am the only one who lives here. Family/friends will come in on the weekends to see him, I'm sure, but I will be here for everything else. He had tongue cancer in Feb and had it removed only to find out it moved into his neck lymph glands in November. December he had the lymph nodes removed from neck and they suspect it could be coming back so they are doing 7 weeks of radiation on tongue and neck along with chemo.

I am hoping someone here can help me prepare to help him the best way I can? I've googled all sorts of side effects of head/neck radiation and I'm getting overwhelmed. Hopefully there are suggestions with what to bring? I've heard humidifiers and special mouth wash with help with the dry mouth? 

I have no idea what we are in for.
Thanks in advance to anyone who has suggestions. 

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Brighty on Jan 29, 2019 6:02 pm

jessicav‍  welcome to cancer connection !   I'm sorry about your dad.   I'm goig to tag one of our mentors JamesT‍ who has experience  with this type of cancer and will be able to share his experience with you.   

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Jan 29, 2019 6:15 pm

Thank you!

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Brighty on Jan 29, 2019 6:24 pm

jessicav‍  just going to add my two cents from the caregiver  perspective.     Caregivers matter too and it's not an easy road.   I wwas wondering  if you have a support system  set up or people you can lean on?   Do you have anyone  you can turn to for help?    You can start with the oncology  social worker at the hospital.    They are usually  available  to talk.     They can also set you up with further resources.      Do you have hobbies  or outlets? You will need something to turn to to take your mind off cancer if only for short periods.   I also would advise you prepare all the questions  you want to ask in he appointments.    You might  be overwhelmed with information overload.   Try to write things down and don't  hesistate to ask for clarification .    Get all  tbe help you can, there  are many resources out there.   All you have to do is reach out.    You started at the right place.    Seek help,practice  self care,take it day by day,hour by hour and you will get through this.   I wish your dad the best with his upcoming  treatments  and don't hesitate  to post questions  or vent to us.    We are here to listen.    

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by JamesT on Jan 29, 2019 11:26 pm

Hello jessicav‍ 

I have had throat cancer and did go through 35 radiation treatments along with 2 Chemo - Cisplatin treatments, it was supposed to be 3, but my hearing was affected.  I was 56 when I went through it.  I am now 16 months post radiation.

It sounds like your dad has gone through lots already, with the tongue operation last February.

For myself I found that I listened and followed what the medical team recommended, and happy to share my experiences.

You will find under the forums heading, and then choose cancer types, then on the right side scroll down to head and neck.  In that area there are lots of great threads on different experiences folks have shared that would be very beneficial to read.

In advance of the treatments your dad is going to go through, I would suggest he look to put some weight on....good weight though.  I followed this initial advice and I gained 10 lbs up until I think week 3-4 of the 7 week treatment, when it became more difficult to eat foods, and my diet started to change.

They say the impact of radiation has to be compensated with double the calorie intake your dad would typically eat in a day.  For my final 3-4 weeks when eating solid foods was out of the question, I was drinking a drink called resource as it has 475 calories for each serving.  These drinks got me through.  I have seen another poster share a smoothie that sounded great with higher calories.  That would be worth checking out.

Is it cisplatin for the chemo treatment?

where do you guys live?

Sincerely,


James

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Jan 30, 2019 12:42 am

Thanks Brighty, I will seek out some resources to help with all of this. I do have a partner who is very supportive but will also be quite involved in this. Will make sure to set aside some time to take care of us as well. Thanks for all of your kind words and suggestions, I will be reflecting on this message over the next few months. Jessica.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Jan 30, 2019 12:47 am

Hi JamesT, Thanks for replying to this- I’m so happy you made it through your treatment and are able to help others! His doctor mentioned his hearing being affected by the chemo and when he said he already has hearing problems she suggested they will try to find a different type of chemo. He has his appointment with them on the 13th to find out more. I will definitely look up that other forum specific to this type of cancer- thank you for the suggestion (I just found this site today and thought it was worth a shot). The smoothie is a great idea and I will look up that drink as well- they told him he may need a feeding tube if he loses too much weight so we are hoping to avoid that. I’ll tell him to start loading up on good calories. He is from the East Kootenays and I am living in Kelowna, so he will have to fly here to have his treatment at the Kelowna hospital. Thank again for everything. Jessica.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Cynthia Mac on Jan 30, 2019 8:19 am

Hi, jessicav‍ , I’m coat-tailing here with JamesT‍ and Brighty‍ . I’m my father’s caregiver (lung cancer last year). Dad didn’t experience hearing loss during his chemo, but he got tinnitus, which is a common condition in people who have hearing loss (and Dad does have some hearing loss). I mention it so you can kind of keep an eye out for it.

As Brighty said, self care for the caregiver is very important - it’s the equivalent of the “putting your own oxygen mask on before you assist others” scenario they instruct us on an airplane. If you want pointers on that, let us know what you need, and we’ll try to get you to what you it.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Gretha on Jan 30, 2019 10:50 am

Hi jessicav‍ 

My husband has cancer in his soft palate and he just finished radiation 10 days ago. He had 7 weeks of radiation and 3 chemo treatments.He is 58 like your dad. Before he started his treatments, he tried to put on weight as much as he could. i think he gained maybe 5 pounds. He had a feeding tube but he never used it. After maybe 3 weeks, he couldn't eat solid food anymore so I started to make him some nutritious smoothies. Here is one recipe I came up with :

Chantale's 1000 calorie - high protein - high fibre - low fat shake

Makes 32 oz - 88 g protein - 16 g fibre - 4.5 g saturated fat

Smooth and easy to get down!


1% milk                    3 cups

Plant based protein powder            1/3 cup (35 g)

1% Cottage cheese                1/2 cup

Garbanzo and fava flour            1/4 cup

2% Greek yogurt (flavored)            100 g

Avocado (fresh or frozen)            70 g

Powdered skim milk            1/4 cup

Honey (or date syrup = less sugar)        1 tbsp 

This smoothie is full of protein, low in saturated fat and full of fibre. My husband drank this for maybe 1 week to 10 days. He even gained weight  because of it.  Then he switched to Ensure because the smoothie was too hard to swallow. You need a good blender. You can also do half of the recipe. The best thing is to drink it right away because it will get very thick.

He followed all the doctor's advice, he did a lot of rinsing with water and baking soda, he did his mouth exercises , put cream on his neck, put his trays on his teeth every night and overall it went well. He also got a humidifier.

Some people mentioned Xylimelt was helping with dry mouth when they were sleeping. My husband tried it and he didn't really care for it. Everybody is different. Now he is recovering and every day he is getting a little bit better. He went to see the doctor today to see if his feeding tube could be removed. I don't know what else to tell you. If you have any questions, don't hesitate to ask me.

Take care
 

        
               
            

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by JamesT on Jan 31, 2019 1:26 am

Hello jessicav‍ 

We live in Chilliwack and I did my treatments in Abbotsford.

You might consider starting a conversation under the head and neck area.  There is a great community in head and neck and your posts might get better visibility there from other folks who might only look in that area.

Glad you have joined this site, it is a great area to get insights from other folks who have been through what your dad is going to go through, who would be happy to provide their point of view to help.

For increasing weight what I did was track all my calories on an app called My Fitness Pal.  Something I have been using for years, and it sure came in handy when I was trying to keep track to double my calories.  Not an easy thing to track without the help of an app.  Gaining the 10 lbs helped me so much, and I was lucky I did not have to have the consideration for a feeding tube.

I had hearing problems as well before starting, which I did not know.  My right ear was weaker than my right.  Nothing alarming up front as they didn't say it was.  but after 2 treatments it definitely affected my hearing and they called off the 3rd Chemo treatment.

There was no difference if I would have had the 3rd treatment vs 2.  There were no stats the 3rd treatment made a difference, and this surprised me.

I can certainly share how it was as I was going through it.  Please let us know how your appointment goes on the 13th and when everything is expected to start.

Thanks Gretha‍ for posting your receipt.  That's the one I was referring to.  Glad you posted.

Sincerely,


James

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Gretha on Feb 4, 2019 7:24 pm

My pleasure James. If it can help someone, it makes me happy.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jennifer_m on Feb 5, 2019 5:43 am

Hi jessicav‍ , my partner finished radiation for head and neck cancer in November so I have some experience on this front (though his retired mother was able to help with a lot of day to day caregiving stuff as I also work full time and couldn't take a lot of time off). Definitely good advice re: mouth washes and gaining weight. My partner had a feeding tube inserted after his surgery to remove his tumour and they kept it in for radiation. I'm glad they did as by the 5th and 6th week he was in a lot of pain and exhausted, so it made eating one less chore to have to deal with. If they suggest he get a feeding tube, it's not a bad idea. The insertion was painful but it was really helpful (it was removed about a month post-radiation). My partner's tumour was in his jaw so the radiation focused on the side of his face. After about week 3 he developed skin tenderness - basically like a bad sunburn. The nurses at the hospital recommended some creams that did help, and soaking his face also helped with the pain too, so reminding him to do that regularly may be good preventative for skin symptoms. The last two weeks of radiation and the one week after were the worst for my partner - he was tired, nauseous, and in pain. He found playing video games helped take his mind off things because he didn't have energy for much else. You might want to talk to your dad about what activities he would enjoy - books, games, etc., and stock up so he has things to do handy when he starts feeling crappy.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by JamesT on Feb 15, 2019 1:16 pm

Hello jessicav‍ 

How is was the first treatment of radiation and chemo for your dad?

Is it Cisplatin they have him on?

How are you coping?

Sincerely,


James

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Feb 15, 2019 3:48 pm

Hi JamesT‍ 

They are giving him Carboplatin chemo. The chemo treatment went well and haven't had too many symptoms yet with nausea or hair loss. It's day 5 though so they mentioned days 5-12 are the worst because your body is at it's lowest and weakest point with the chemo killing the white and red blood cells in addition to the bad cells. We are monitoring closely for fever over the next week but as far as we know, only 1 more chemo on March 4th and then potentially a 3rd dose but they aren't sure yet. 

5 radiation treatments so far out of 35 total and he is noticing some sticky mucus that is causing him some discomfort swallowing and sleeping but otherwise I think he's doing really well. His neck is getting quite red and sore but he also just started doing some stretches and tongue exercises so we aren't sure if he's sore from doing those, or from the radiation. He is still able to taste and eat so fingers crossed that we make it through without a tube. 

I got him every product you can imagine to help with dry mouth and dental care during the process so we are keeping up on that. I have nothing to compare to, but overall I think I (we) are coping very well so far. Trying to keep things positive and as "normal" as possible. My mom is flying in today for the weekend so that should lift up his spirits!

Thanks for checking in, I really appreciate it!

Sincerely, 
Jessica.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by JamesT on Feb 15, 2019 4:34 pm

Hello jessicav‍ 

For you dad he will want to follow a daily routine of keeping his neck clean and always have cream applied.  This very much helps ongoing to soothe the neck as well as help lesson any scaring.

I used to do this around 4 times daily....

You can buy the glaxo cream from costco super cheap and its great for hydration.  I still use it as a daily face cream.


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How is his pain so far?

Sincerely,


James

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Feb 17, 2019 10:09 pm

Hi James. Thanks for the info on the cream and cleaning products. He’s loving that cream! His pain is getting really bad the last few days. Hurts to move his head, getting splitting headaches over night and is starting to lose his taste. He’s using Tylenol 3 to try and help with the pain... chemo is kicking his butt this week too. Lots of naps and low energy. Jessica.

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by JamesT on Feb 17, 2019 11:28 pm

Hello jessicav‍ 

Yes all part of the course for the effects of chemo.

Best to not fight the need for more sleep...hopefully he's off for the time being and can nap as necessary.....I used to sleep in till about 10...and then have to have a nap mid afternoon...just the way it was.

Tylenol 3's...yikes...he should talk to a doctor after he has radiation on Tuesday.  I was on morphine pills...and quite a lot of them as the pain increased...and the pain will increase.

The key with the pain is to keep it at about a level 5, and then think of taking a pain med.  There is no need to endure pain as your dad goes through tis, and the management of the pain meds is done by one of the doctors who will track what he is taking and what he should be taking.

Hope that helps.....and when he's on the heavy duty pain meds....constipation could be a real issue, that he will have to be aware of to manage and ensure he doesn't have happen...its totally preventable.

Hope this helps.

You are not alone, and on here you have a great resource of folks who have been through what your dad is going through.

Sincerely,


James

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Feb 20, 2019 3:18 pm

JamesT‍ Thanks for your advice. I am going with him today to his doctor's appointment after radiation and will discuss pain management and morphine. My dad agrees that the T3s are not cutting it... will ask about other options. He was also surprised at how quickly he is losing his taste- it's going to be a struggle to convince him to eat even though he can't taste what he's eating. It doesn't help that 2 weeks before treatment when he was here for his mask fitting and dentist visit they pulled two of his molars out, so he's having trouble chewing on top of the pain and lack of taste. He has already lost 5 pounds in the first week.

Jessica. 

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by JamesT on Mar 4, 2019 11:54 pm

Hello jessicav‍ 

How is your dad doing?

Sincerely,


James

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by maui2000 on Mar 5, 2019 12:57 pm

I have/had thyroid, esophageal,  trachea cancer.  I had thryoidectomy, lymphectomy, and neck resection.  I had three weeks of oral chemo and 37 radical radiation treatment.  The best advice I can give is learn to be patient, gentle, and  understanding.  Before he begins treatment try to put on some good weight - about 10- 15 pounds if he is not stocky.  Lots of protein and good starches.  The first few weeks won't create much discomfort.  Week 5 will begin a a downward spiral when eating is nearly impossible.  All acidic or citrus foods and drinks will be out of the question along with soda or sparkling waters and spices including salt.  He will be given exercises to do - DO THEM, they help keep your throat active and lips and tongue from getting "stiff"!  He will be given prescription mouth wash (Larry's Solution) to use, I recommend using it half hour before eating and anytime the soft tissue is "tender".  My skin broke down quickly at 5 weeks and oozed continually.  They placed saran wrap over my skin to avoid direct contact with my mask during radiation treatment.  I used a cream called Camwell that I purchased from Amazon - recommended by my Oncologist to ease the burns (this worked very well).  I also use Silvadene prescription cream on the burns.  I did not require a feeding tube as I maintained my nutrition.  I mostly ate pasta with finely ground meats and sauces or mashed foods and milkshakes.  Swallowing became very difficult and the tissue in my mouth was extremely tender. My throat felt sore and my saliva become very ropey. I have/had continues dry mouth and my teeth suffered greatly causing gum line decay.  I also recommend carrying a bottle of water all the time and sipping.  Use a child's soft toothbrush to clean your teeth. Ask your dentist for a prescription fluoride toothpaste and use Biotene mouth rinse and gum/lozengers to aid in dry mouth.  These symptoms resolve very slowly.  He may also be given a liquid pain medication to use to help with pain especially at night.  I also would take a spoon half hour before dinner so it would be easier to handle swallowing.  Wishes for great success!
 

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Ellap on Mar 6, 2019 2:59 pm

I am 4 month post radiation from head and neck cancer treatment. I had 30 treatments of radiation over a 6 week period.  Prior to that I had surgery over a year ago (feb 2018) to remove scuamous cell carcinoma from my chin.   I was told I was clear and that I wouldn’t need any other treatments.  5 months later in July 2018 I lost 75% of my lower mandible including my teeth, base of my mouth and chin.   10 hour surgery to remove and rebuild everything.    A few complications after surgery including MRSA infection which sent me back to hospital for another 10 days and 6 weeks of 3 different iv antibiotics.   I finished the antibiotics on a Monday and started the radiation 2 days later.     I was very weak and tired and sick from the surgery and the infection so going into the radiation my body was already rundown.    I was on a liquid diet at that point so I knew the next 6-8 weeks were going to be for lack of a better term hell.     I had to take in 2400 calories to maintain my weight through radiation. I was told to drink high calorie ensure which has 355 calories per bottle. The problem is I’m lactose intolerant so I had to put lactase drops in it and refrigerate it for 24 hours before I could drink it.   So remembering to do that became a challenge a few weeks in when I was tired and in pain and just wanting to sleep.     So my boyfriend and I went to a store that sells protein powder and bought a bulk gainer, lactose free , high calorie power. Each scoop was 258 calories so I was putting 2 in an ensure and turning into a shake so it was then 871 calories.  I could drink 3 of those per day versus drinking 6 ensure.   I maintained my weight through radiation and I continued to drink those shakes until I could eat again.  I saw many people at my radiation sessions with feeding tubes due to weight loss.   I told my radiation doctor what I was doing so he started telling his patients to go buy the protein powder. I’m not sure where your dad is being seen but my pain got very very bad around week 3.   Make sure if he starts feeling pain that he can’t control he’s telling his doctor.  They referred me to the pain clinic right at the Tom Baker where I was receiving treatment and they got my pain under control within a week.   That may have saved my life as much as the radiation did.     I hope this information helps you and your dad.    Please reach out anytime.     Ella 

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by Elsie13 on Mar 6, 2019 5:56 pm

Hello Ellap‍ .  Glad you have found cancerconnection.  Sorry you had to go through all this.   Thanks for your detailed post - your ideas, eg protein powder, might really help some people. 
Maybe JamesT‍ , Gretha‍  and jessicav‍ will say hello. 

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by jessicav on Mar 10, 2019 4:37 pm

Hello Ellap‍ 
I’m so sorry for what you have gone through! My dad just got a feeding tube put in a few days ago because he was losing too much weight. His pain is quite bad and he’s started to get sores in his mouth- he told his doctor so they put him on “dialuaded?” Some type of morphine pill so it’s helping a bit more and 3 different mouth rinses for numbing the pain. We will try to make some better shakes for him- but he just had his second round of chemo and it’s hurting him way more than the first. 
Thanks for your comments- I’ll be picking up some protein powder for him right away. 
Jessica 

Re: Wanting advice: how to help during head/neck radiation&chemo

Posted by maui2000 on Mar 10, 2019 8:02 pm

This is a difficult time.  Careful using pain meds as eating becomes not important to the patient.  You just forget to eat or don't care to eat.  I still suffer from mouth sores 6 months after radiation and chemo and 1 year post surgery.  I found drinking pure aloe I buy from Amazon helps.  You can also get it flavored and it is available in health food stores.  Ask the radiologist for Larry's magic mouth wash.  I used it for pain and always 30 minutes before eating.  You can also dab a mixture of benadryl and mallox with a Q tip on mouth sores.  Carry a bottle of water to sip continually and DO the mouth and swallowing exercises they give you.  All the best. Stay strong, stay hopeful.
 

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