Essential Items For Head And Neck Cancer Patients. These are things we've needed and that have help

sweetblood22

This was an idea and thread started by adventurebob a couple of years ago. These are all items we compiled as things we found we really needed to help us get through treatment. Obviously, no one needs everything, but I know I used a lot of stuff off this list. So perhaps if you are just starting treatment, or know some one who is, maybe you may want to get some of these things or give the person a gift basket filled with some of these items.

Please feel free to add additional items that you found were essential during your treatment time.

I am reviving this thread since it is a great resource as to what would be great for a new person starting treatment.   We have a few here that are new, so maybe this will be helpful.  I have also gone down the whole thread and tried to just pick out the items that are useful.  I tried to get everything, there's a lot!  

1. Lotion for skin
2. Green tea Or herbal tea
3. Biotene dental products
4. Aquaphor 
5. Baking soda / salt  and peroxide.  Recipe / instructions or rinse
6. Journal / log book
7. Thermometer 
8.  Immodium
9. Ensure or Boost
10. Bottled water and or a good water bottle 
11. Cotton hankie
12. Fleece hat
13. Hard candy
14. Blanket
15. L-Glutamine Powder
16. Home blood pressure monitor kit
17. Slippers / house shoes
18. Caloric intake book or website like my pyramid tracker to make sure you're getting in enough calories
19. Coupons for frosty's or shakes
20. Tissues
21. Ace bandage chip clip or netting for holding peg tube 
22.  Solo 16 oz cups and napkins for mucus spitting
23. Call SPOHNC or see superthread for link for the free book. We Have Walked In Your Shoes. A Guide to Oral Head And Neck Cancer. 
24. American Cancer Society. They will send you a packet of info and free stuff as well.  Will also reimburse you for mileage to hospital during treatment.  
25.  Lip balm. (I love CO BIGELOW from bath and body
26. Stoppers 4 
27. Calendula cream for neck burns.
28. Books like, Creating A Cancer Fighting Kitchen
29. Magic Mineral Broth or recipe for broth. Or give them a good home made rich stock with no salt.
30. Soft bristle tooth brush
31. Sponge/foam brushes for tooth brushing when mouth is too sore for soft bristles 
32. Paper tape
33. Water proof tape
34.  Drain sponges or 2x2 gauze bandages for peg tube
35. Baby wipes
36. Pill crusher splitter
37. Pill organizers 
38. Straws 
39. Package of note cards or thank you notes
4o. Ear plugs  
41. QTips
42. Small rubber coated baby spoon. Some people say they like them even better than plastic cutlery.
43. Toothette mouth moisturizer. (sometimes this comes in a kit with a rinse and sponges on a stick)
44. Protein powder
45. Neck Pillow
46. Electric razor.

sweetblood22

Topping
Topping in case anyone has any other things to add. Laralyn found a peg tube belt that was helpful. Anyone else have anything to add to this thread?

Kenny-

sweetblood22 said:

Topping
Topping in case anyone has any other things to add. Laralyn found a peg tube belt that was helpful. Anyone else have anything to add to this thread?

Hi sweetblood22,
This list

Hi sweetblood22,

This list was incredibly helpful, I'm checking them off as I go. 

Few things I wanted to check:

1) What did you use the ear plugs for?

2) Lip balm - Is this preventative, or recommended to start?

3) Lotion for Neck burns? Is neck burns expected during treatment?

 

thanks a bunch!

Barbaraek

Kenny- said:

Hi sweetblood22,
This list

Hi sweetblood22,

This list was incredibly helpful, I'm checking them off as I go. 

Few things I wanted to check:

1) What did you use the ear plugs for?

2) Lip balm - Is this preventative, or recommended to start?

3) Lotion for Neck burns? Is neck burns expected during treatment?

 

thanks a bunch!

Neck burns

Kenny,

Yes, neck burns are common. The radiation is like getting a horrendous cumulative sunburn. Aquaphor is good, and silver sulfadiazine (Silvadene) cream is even better if you get weepy sores/burns on the neck.

 

Lips can become cracked and dry from the chemo (5FU especially, and also from swishing and spitting that salt/baking soda solution).

 

Ear plugs? I don't know...unless it's to tune out noise.

 

Barbara

jakesaround

Kenny- said:

Hi sweetblood22,
This list

Hi sweetblood22,

This list was incredibly helpful, I'm checking them off as I go. 

Few things I wanted to check:

1) What did you use the ear plugs for?

2) Lip balm - Is this preventative, or recommended to start?

3) Lotion for Neck burns? Is neck burns expected during treatment?

 

thanks a bunch!

Alra-Therapy Lotion...

Kenny,

My doc told me to use Alra-Therapy Lotion twice a day after radiation treatments. In other words don't put it on before radiation otherwise you will be adding fuel to the fire that will be your face and neck. This stuff is made out of an 100% Aloe Vera base with some other added vitamins and stuff. My doc gave me a sample and I went to a local mom & pop pharmacy to get a bigger bottle for later use. I think you can definitly buy it online from several places like Amazon but to find in a local store near you you would have to call around. I don't think the big chain stores carry it right now at least not in my area.

Here is a link to the product.

http://www.alra.com/collections/all/products/therapy-lotion

Has anyone else ever heard of or used this product?

Thanks.

jake...

Skiffin16

Dawn's List..

I can definitely pass on your info tomDawn (sweetblood), as she doesn't get on here much these days..

But we are Facebook friends..., and text buddies..

But the comments and suggestions made from others to your questions are pretty much spot on..

Silvadene (sulfonamide/silver), is a antibacterial used as a topical cream on burns, and works great for people with sever weeping burns. Though most of us don't get burned that severly.., some do though.

Myself, mine mostly turned really dark and peeled like a bad sunburn, but it wasn't raw... I didn't like the Aquaphor.., way too thick and greasy for me...

Anyways.., glad that you are being proactive, and that the SuperThread and Dawn's old posts are still being benificial..

Also, here's a direct link to the reference above, posted..

Alra-Therapy Lotion


Best, John

SASH

Additonal things I would add

A soft towel or baby blanket to put on pillow so not constantly washing pillow cases from the drool

Unscented tissues with no lotion to clean the mucous from the mouth if you can't spit it in the cup

Magic Mouthwash/Magic Mix Rx for when it is too painful to swallow and you need to numb yourself

 

LiseA

SASH said:

Additonal things I would add

A soft towel or baby blanket to put on pillow so not constantly washing pillow cases from the drool

Unscented tissues with no lotion to clean the mucous from the mouth if you can't spit it in the cup

Magic Mouthwash/Magic Mix Rx for when it is too painful to swallow and you need to numb yourself

 

This is so helpful. Thank

This is so helpful. Thank you. 

Skiffin16

LiseA said:

This is so helpful. Thank

This is so helpful. Thank you. 

Thanks..

Dawn doesn't spend much time on here.., but I know her and speak to her frequently.. I'll let her know that her hard work is still of value and helpful.., she'll much appreciate it.

As a side note..., and little trivia..

Dawn did all of her original posts, including the SuperThread on a cell phone.. Now that's committed to being helpful..

IAmStrong

Skiffin16 said:

Thanks..

Dawn doesn't spend much time on here.., but I know her and speak to her frequently.. I'll let her know that her hard work is still of value and helpful.., she'll much appreciate it.

As a side note..., and little trivia..

Dawn did all of her original posts, including the SuperThread on a cell phone.. Now that's committed to being helpful..

Coconut Oil

Hola.  I am over 5 years out.  My doctors commented that my skin is so soft and in such good condition....they stated they Never see anyone with skin as nice as mine and I was maxed out on all treatments.  My only thing I continue to do twice or more daily, is apply coconut oil, which is actually a hardened product and inexpensive.  Whenever my skin feels tight, I apply and massage in.    There is No change in the texture of my skin after healing from the burns.  And I massaged the resection area/scar faithfully as told to to prevent build up of scar tissue when given the all clear to do so. 

 

Jkchapa79

A friend bought me a “port pillow” for the seatbelt. Still use it after port removal. I also highly recommend a feeding tube lanyard or belt! Hydration support…Pickle juice helped a lot with both nausea & the horrid taste/smells. Frozen pickle pops really helped as well. Hydration/electrolyte drinks or mixes. Banana bag oral solution contains electrolytes & vitamins (pharmacist formulated). Adult diapers really saved me a lot of accidents & embarrassment. The Navage helps a lot (along with OTC nasal sprays; always check with your dr of course!) In addition to the salt baking soda gargles, I found a rinse that contained zinc. Zinc can help with healing and soothes mouth sores. I preferred beanies over crochet or knitted hats. I still wear them regularly because I’ve become sensitive to both hot & cold. A good blanket (the portable heated blanket is awesome!). If you develop hearing loss-bone conduction ear phones! There are apps available in combo with the conduction ear phones that can be helpful with hearing. I put together a medical file/book that listed everything: diagnosis, drs info, medications, other health conditions, lab & imaging reports, etc. Research & seek out websites, organizations, foundations, charities, anyone that can assist financially, provide free rides to treatment, lodging, insurance navigation (health & life). Apply to have someone help keep your home tidy, grass cut, or anything that you need help with. My husband had to do it all: work 48 hrs a week, took me to all of my treatments & appointments, took care of me, took care of our children, and all of the domestic labors. I think one of the most important and valuable things we need during & after treatment is a support “staff” so that life doesn’t fall all on 1 person. People regularly asked or offered to help: give them a task! Have someone that helps manage appointments & share that calendar with everyone that needs to know. Have someone else come once or twice a week to help with domestic chores. If people offer food, ask them to pick up your grocery order, make frozen meals, gift cards to local restaurants. The fridge food pile up is real and becomes a burden (in my opinion) If you have children, ask people to take the kids for a few hours to go to the park or some place that gives them some respite. There are lots of programs for big brothers/sisters. Our kids take on so much with a sick parent/guardian, and they deserve time to just be a kid! Take advantage of telehealth that offers therapy for the family both individually and family. The very 1st statistic that I learned after my diagnosis was 11.6% higher divorce rates. My hubs & I made the very conscious decision to actively work on any issues that came up, especially cancer related. We came across some great podcast, books, etc that helped improve our relationship. 95/5 has become our motto & advice for all couples. Some days I can only contribute 5% to our relationship so he knows he’s got to come up with the 95%…and that changes daily. Take advantage of your pharmacy…pharmacist are incredibly knowledgeable and can absolutely help with medication management, medication information, and most are so great with suggestions for OTC treatments. I know some retail & mail order pharmacies will put together pill packs to help with medication management. I have a huge list of how to help, useful items to have during & after treatment, etc. I’ll stop here but feel free to reach out if interested. Shortly after my treatment was done, my neighbor was dx with pancreatic cancer…I made her a “chemo bag” with a good blanket, ear buds, extra device chargers, moisturizer, and other items she might need while receiving & after treatment. I think my #1 recommendation is to seek out & accept assistance from your support system.

wbcgaruss

Jkchapa79 Welcome to the CSN Head and Neck discussion forum.

I see you have had your share of this evil disease starting way back in 2008 with Myoepithioma on the hard palate.

Then 14 years later, in 2022, most likely with cancer being the last thing on your mind, you find you have Stage IV Aggressive squamous cell nasopharyngeal carcinoma.

You are cancer-free now but of course, you have leftover issues from treatments and some I would assume are difficult to deal with at times just from knowing a couple of people on our local where I live support group at the cancer center who had palate issues with cancer and obturators. Also, you are dealing with chronic pain and other issues.

But thank you for your huge list of help tips and products for treatment and other tips in general. We get to be very knowledgeable in medical issues, treatments, and how to handle and deal with things we never dreamed of like feeding tubes, ports, and more.

You went through an awful lot but here you are still standing and it is people like you who are a great inspiration to new people with cancer when they see what you went through and make it will give them confidence that they can get through anything too.

And of course cancer treatment is getting better and there are a lot of success stories out there but post-treatment I always say nobody gets away free with H&N cancer, you always have some treatment left over like neuropathy or dry mouth, or other side effects. Some people are very lucky with very mild to no effects leftover and others not so much.

Either way, we adapt to the new normal and go on with life as you have done and post-cancer life is more precious than ever and one day at a time is a good script to follow.

I commiserate with you, I went through several cancers also.

Hopefully no more.

Thanks for weighing in with your tips and I summarized your treatments, but if I am wrong on any of it please let me know.

You may want to let people know a bit about your treatments.

I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

Our motto here and you exemplify it is (NEGU) Never Ever Give Up.

Wishing You The Very Best

Take Care, God Bless,

Russ