Posted by jessicav on Jan 29, 2019 5:05 pm
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.
Posted by Brighty on Jan 29, 2019 6:02 pm
Posted by jessicav on Jan 29, 2019 6:15 pm
Posted by Brighty on Jan 29, 2019 6:24 pm
Posted by JamesT on Jan 29, 2019 11:26 pm
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?
Posted by jessicav on Jan 30, 2019 12:42 am
Posted by jessicav on Jan 30, 2019 12:47 am
Posted by Cynthia Mac on Jan 30, 2019 8:19 am
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.
Posted by Gretha on Jan 30, 2019 10:50 am
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.
Posted by JamesT on Jan 31, 2019 1:26 am
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.
Posted by Gretha on Feb 4, 2019 7:24 pm
Posted by jennifer_m on Feb 5, 2019 5:43 am
Posted by JamesT on Feb 15, 2019 1:16 pm
How is was the first treatment of radiation and chemo for your dad?
Is it Cisplatin they have him on?
How are you coping?
Posted by jessicav on Feb 15, 2019 3:48 pm
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!
Posted by JamesT on Feb 15, 2019 4:34 pm
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.
How is his pain so far?
Posted by jessicav on Feb 17, 2019 10:09 pm
Posted by JamesT on Feb 17, 2019 11:28 pm
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.
Posted by jessicav on Feb 20, 2019 3:18 pm
Posted by JamesT on Mar 4, 2019 11:54 pm
How is your dad doing?
Posted by maui2000 on Mar 5, 2019 12:57 pm
Posted by Ellap on Mar 6, 2019 2:59 pm
Posted by Elsie13 on Mar 6, 2019 5:56 pm
Posted by jessicav on Mar 10, 2019 4:37 pm
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.
Posted by maui2000 on Mar 10, 2019 8:02 pm