CSN Login
Members Online: 6

Ok, now that I know it's chemo and Rads, what products do I need to gather?

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Reading here you guys know what works. What do I need for my skin, mouth sores and all the other products to make this as livable as possible.

Thanks folks,

Joe

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am glad you asked this question because we need to start gathering things as well for when he starts the chemo and radiation.

Barbara B
Posts: 40
Joined: Sep 2012

Hello!

I imagine you will get many different thoughts and ideas about what to use. Everyone here is so very helpful which has been wonderful. My husband had 33 radiation treatments and six chemo treatments. He did not have one blister or one burn and I have to give credit to Aquaphor cream. It was recommended to us from a friend who went through breast cancer radtiation treatments. She never had a burn either.

We found Aquaphor in Rite Aid. It is very thick and sticky but works. He applied the cream right after each treatment and before bed.

He also used Biotene mouthwash and toothpaste because it does not have alcohol and won't burn your mouth. As treatment went on the doctor prescribed "magic mouthwash" it contains lidocaine, maalox and a few other things to help numb your mouth.

He used diluted baby shampoo and did not use gels, sprays or a hair dryer. The oncologist said he didn't know if the chemo would cause haor loss so we took the precaution. My husband was happy not to lose any of his hair =)

We went to the dentist and had trays made so that he could put fluoride on his teeth at night. This was to help keep the enamel strong.

This process can be overwhelming so if possible try to take things a day at a time and know that everyone here is pulling for you!

I hope this helps! Barbara

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

got a supply of stuff I might need before treatment started....The first thing on the list was the Aquafor....tho, I didn't use it until the last three months. During radiation I used Calendula cream for my neck...I bought the type for babies at the health food store...it isn't thick and messy, and was suggested at Radiology because of it's healing qualities. In the last three months I have used the Aquafor on my lips (the chemo I had for the last three treatments really kicked my butt.)

For mouth sores the Oncologist prescribed Mugard. Radiation brought a few mouth sores in the beginning, and Mugard seemed to stop those in their tracks, and then keep them away for the duration of radiation. It did not work in the case of chemo based mouth sores, however....and those I suffered thru for the last 3 months of chemo....I think when the chemo causes them, they just come on too fast and too furious....the Mugard can't keep up.

I had a bottle of salt and soda always mixed for use in my mouth, too. I have dentures, so didn't need to do the dentist when I started...but I still kept my mouth oober clean. I could not use the Biotene because it was SO minty to me, but was able to use Stoppers 4 (which I got at Amazon.com)...less intensity in the mint department. I used it everyday before rads, as my mouth would get so dry from breathing thru it with the mask on.

Also for mouth sores, I had L-Glutamine on hand...this is what I used in the last 3 months of treatment...it was the only thing that didn't sting like battery acid in my mouth including plain water.

Maybe you can tell from what I've said....Mouth sores were my number one problem during treatment, and they didn't come until radiation was long over....the last 3 months of chemo is what forced me to use my g-tube, and focus on my mouth.

I had my last of 6 chemos August 28, and my last of 35 radiations on June 15th.

For rads tho...get the Aquafor....but DO pick up a tube of Calendula cream...I didn't suffer near as bad as some of the folks on my treatment bus on neck issues...can't say for sure it was calendula, but you never know.

p

yensid683
Posts: 222
Joined: Apr 2012

I had 33 rads, and 8 doses of Erbitux, now 10 weeks post rads and recovering.

For your skin, I started with Aloe Vera, get the plain, not scents, no dyes. Walmart is where I found it in stock. I used it every day until the skin started to 'burn' on either side of my neck, then switched to the aquafor. I only used the aquafor on the burn and kept the aloe vera for the rest of my skin. The aquafor is very sticky (prepare to lose pillow cases) but the healed skin is perfect with no evidence of scaring.

I had lost my hair with the earlier treatments, they did high dose induction chemo and the cisplatin did the job. I used plain old Dove soap during treatments, again, the PLAIN soap. The idea is to keep the skin moist without adding stuff.

For oral care, I was not able to tolerate the Biotene. My sense of taste was corrupted by the high dose chemo, so I used a salt water and baking soda rinse. Use a regular bottle of bottled water, add a 1/2 teaspoon of salt and a 1/2 teaspoon of baking soda and then use it as a rinse. It worked well and was inexpensive. A bonus was that about 5 weeks post rads I finally found that I could taste salt because I was using the rinse.

At first I tried to find ways to stimulate my salivary glands. The body responds to sour by trying to flood the mouth with saliva to dilute the sour. I use sugar free (tooth decay risk) lemon drops and they worked for about 3 weeks, and then my saliva stopped and I was no longer able to tolerate the sour, still can't unfortunately.

When it comes to prescription stuff, the 'magic mouth wash' is pretty good. I would swish and swallow and it helped with the sore throat. I also asked for pain med in liquid form, and had liquid Lortab. It is so much easier on the throat to do the liquid. You may need stronger as treatments advance, your doctor and the nursing staff will monitor you pretty closely and will make changes as needed.

I also have a prescription fluoride toothpaste, and I would recommend that as well, SF5000.

I would also explore a PEG tube. My doctor recommended one immediately as the ability to swallow enough calories would be compromised by treatments. I got mine before treatments started and while I was able to eat regular food for again, about two weeks, I made use of the tube and it kept me from losing much weight.

I hope things go easily for you, it is no real fun to be sick and even less fun to get 'treat'ments

yensid683
Posts: 222
Joined: Apr 2012

I had 33 rads, and 8 doses of Erbitux, now 10 weeks post rads and recovering.

For your skin, I started with Aloe Vera, get the plain, not scents, no dyes. Walmart is where I found it in stock. I used it every day until the skin started to 'burn' on either side of my neck, then switched to the aquafor. I only used the aquafor on the burn and kept the aloe vera for the rest of my skin. The aquafor is very sticky (prepare to lose pillow cases) but the healed skin is perfect with no evidence of scaring.

I had lost my hair with the earlier treatments, they did high dose induction chemo and the cisplatin did the job. I used plain old Dove soap during treatments, again, the PLAIN soap. The idea is to keep the skin moist without adding stuff.

For oral care, I was not able to tolerate the Biotene. My sense of taste was corrupted by the high dose chemo, so I used a salt water and baking soda rinse. Use a regular bottle of bottled water, add a 1/2 teaspoon of salt and a 1/2 teaspoon of baking soda and then use it as a rinse. It worked well and was inexpensive. A bonus was that about 5 weeks post rads I finally found that I could taste salt because I was using the rinse.

At first I tried to find ways to stimulate my salivary glands. The body responds to sour by trying to flood the mouth with saliva to dilute the sour. I use sugar free (tooth decay risk) lemon drops and they worked for about 3 weeks, and then my saliva stopped and I was no longer able to tolerate the sour, still can't unfortunately.

When it comes to prescription stuff, the 'magic mouth wash' is pretty good. I would swish and swallow and it helped with the sore throat. I also asked for pain med in liquid form, and had liquid Lortab. It is so much easier on the throat to do the liquid. You may need stronger as treatments advance, your doctor and the nursing staff will monitor you pretty closely and will make changes as needed.

I also have a prescription fluoride toothpaste, and I would recommend that as well, SF5000.

I would also explore a PEG tube. My doctor recommended one immediately as the ability to swallow enough calories would be compromised by treatments. I got mine before treatments started and while I was able to eat regular food for again, about two weeks, I made use of the tube and it kept me from losing much weight.

I hope things go easily for you, it is no real fun to be sick and even less fun to get 'treat'ments

yensid683
Posts: 222
Joined: Apr 2012

I had 33 rads, and 8 doses of Erbitux, now 10 weeks post rads and recovering.

For your skin, I started with Aloe Vera, get the plain, not scents, no dyes. Walmart is where I found it in stock. I used it every day until the skin started to 'burn' on either side of my neck, then switched to the aquafor. I only used the aquafor on the burn and kept the aloe vera for the rest of my skin. The aquafor is very sticky (prepare to lose pillow cases) but the healed skin is perfect with no evidence of scaring.

I had lost my hair with the earlier treatments, they did high dose induction chemo and the cisplatin did the job. I used plain old Dove soap during treatments, again, the PLAIN soap. The idea is to keep the skin moist without adding stuff.

For oral care, I was not able to tolerate the Biotene. My sense of taste was corrupted by the high dose chemo, so I used a salt water and baking soda rinse. Use a regular bottle of bottled water, add a 1/2 teaspoon of salt and a 1/2 teaspoon of baking soda and then use it as a rinse. It worked well and was inexpensive. A bonus was that about 5 weeks post rads I finally found that I could taste salt because I was using the rinse.

At first I tried to find ways to stimulate my salivary glands. The body responds to sour by trying to flood the mouth with saliva to dilute the sour. I use sugar free (tooth decay risk) lemon drops and they worked for about 3 weeks, and then my saliva stopped and I was no longer able to tolerate the sour, still can't unfortunately.

When it comes to prescription stuff, the 'magic mouth wash' is pretty good. I would swish and swallow and it helped with the sore throat. I also asked for pain med in liquid form, and had liquid Lortab. It is so much easier on the throat to do the liquid. You may need stronger as treatments advance, your doctor and the nursing staff will monitor you pretty closely and will make changes as needed.

I also have a prescription fluoride toothpaste, and I would recommend that as well, SF5000.

I would also explore a PEG tube. My doctor recommended one immediately as the ability to swallow enough calories would be compromised by treatments. I got mine before treatments started and while I was able to eat regular food for again, about two weeks, I made use of the tube and it kept me from losing much weight.

I hope things go easily for you, it is no real fun to be sick and even less fun to get 'treat'ments

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

since everybody's problems and preferences vary, not sure you need to plan ahead too far.
prescriptions will take care of a lot of it.
for the rest, take it problem-by-problem and check these boards for solutions. every issue that has ever come up in the history of cancer has been dealt with here. ;-)

but plenty of baking soda and salt are essential. :-)

edit: just thought of a small item that was quite useful. the outstanding staff at St. Anne's in Toledo gave me a tiny pillow to put under the shoulder belt in the car...otherwise the belt would've pressed right on the chemo port... doesn't matter so much now, but very helpful in the first few days after having the port put in.

alligatorpointer's picture
alligatorpointer
Posts: 130
Joined: Jul 2012

MuGard works best if started on the first day of radiation and continued all the way through to the end of treatment. It will very likely prevent the mouth sores caused by radiation if used in a consistent regimen. It is necessary to wait an hour after using MuGard before eating anything so best to eat first and then do mouth care ... brush, floss, rinse & gargle with baking soda/salt, then coat mouth with MuGard by swishing it around oral surfaces for several minutes. It should be used again between meals ... every 3 to 4 hours if possible. The reason to arrange for MuGard as soon as possible is that it may take some time to get a supply because it is not available except through the manufacturer. Many oncologists have never heard of it because MuGard is a new product and is not yet on the formulary list of many hospital pharmacies. Insurance companies are also slow to recognize and cover new products so the manufacturer is working hard to try to get MuGard covered. I was able to speak with a customer service representative (Bonnie) at this number: 214-905-5100. She took care of making sure that a supply of MuGard was delivered in time to be used at the beginning of radiation. Since insurance would not cover cost and the radiation oncologist had never heard of it but was willing to give it a try, the MuGard company provided it as a way of promoting awareness. It is very expensive so hopefully other patients will receive financial coverage for this beneficial product. I feel that it was responsible for keeping the horrors of mouth sores from happening during my son's radiation (35 rads / 7 lower-dose cisplatin). MuGard has a website with more info: http://www.mugard.com/

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

sounds like a fine product!
although...not all of us get mouth sores during treatment. I didn't. did get thrush though, as a side-effect of antibiotics.
before treatments started, my onc got me a free supply of caphosol for oral mucositis...but I never used it much. cheers.

Sam999
Posts: 305
Joined: Mar 2012

I used following: ( i had 6 weeks of rads, no chemo)

Aquqphor lip balm for lips
Fresh Aloe vera to put on right after rads and than later used calendula cream. At night i woulp put aquqphor cream. After week 3, started putting aquqphor cream during day time as well. I had no rad burns, skin did turn black....kinda like a sun burn.

Used mugard from day one, call the manufacturer as the other post suggested, they will cover the cost if your insurance does not. Towards the end of treatment around week 5, i also started using caphasol. I strongly recommed using mugard and caphasol both from day 1.

Used stoppers 4 and bioten oral care gel for dry mouth thru treatment and even now.

One important note, in case you have any fillings in teeth, make sure you get the mouthguard made for that.

Baking soda and salt solution is needed thruout treatment in addition to all these products.

Also used cool mist humdifier at night, helped with dry coughing.

Folks on this site are awsome, they guided me thruout for any problems i had and were always there to listen for any frustrations.

Sam

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

They dicker and deal with the price...When I first talked to them they asked if $325 a month was too much....I gasped, and they dropped it to $100 a month (which was 6 bottles, and I still have 2 left)....When I got on here to tell everybody the price I got it for, another person told me I should have gasped twice, as he got it for $50 :)....

p

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Pretty sure that everything that you are looking for is more than likely covered on the SuperThread...

SuperThread

Best,
John

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Joe,

So you are all go for launch? Good luck, smooth ride and safe journey.

Besides a plethora of pain meds (just in case) and salt and soda rinse I had three favorites.

1. Lorazapam for anxiety, 1 pill 0.5 hour before donning the mask and occasionally for sleep if my mind was racing.

2. Magic Mouth Wash, went through a 6-pack, loved the stuff, sore mouth sore throat, 5 to 10 mils swish around and swallow, great stuff!! Note: now that I can taste again (somewhat) I can’t believe I drank so much of the stuff.

3. Neck burn week 6, 7 & 8, Silver Sulfadiazine Cream. Worst pain of my treatment, this took it all away. Messes up you tee shirt and pillow case, but how cares it is great.

Tell doctors and nurses how you feel, they generally have something for what ever is happening. Don’t be a tough guy and try to wait out the pain. Take your prescribed pain medications and get some sleep.

Today, 25 weeks post, feel pretty good, sleep great and take no meds (other than BP, low dose vitamins, and prilosec)

Best,

Matt

P.S. wearing the mask is a chapter by itself

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I second the recommendations made by others. But you need to consider clothes. Loose around the neck, but possibly warm depending upon your location. Also the various creams will probably make a mess of your shirts. So something old, unless your significant other insists you look presentable. Rick.

dlygoblue
Posts: 28
Joined: Mar 2012

Here's a list of things used by others, and stuff I added.
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 someone 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.
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, or LOTS of facial tissue
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. Q-tips (radiations and chemo can cause wax build-up)
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.
25. Lip balm.
26. Calendula cream for neck burns.
27. Books like, Creating A Cancer Fighting Kitchen
28. Magic Mineral Broth or recipe for broth. Or give them a good home made rich stock with no salt.
29. Soft bristle tooth brush
30. Sponge/foam brushes for tooth brushing when mouth is too sore for soft bristles
31. Paper tape and/or Water proof tape (Instead of athletic tape. Hurts less when removing)
32. Drain sponges or 2x2 gauze bandages for peg tube
33. Baby wipes
34. Pill organizers
35. Package of note cards or thank you notes
36. Non-metallic utensils. Chemo and radiation affect your taste, and that’s amplified with metal utensils.
37. Toothette mouth moisturizer. (sometimes this comes in a kit with a rinse and sponges on a stick)
38. Protein powder
39. Neck Pillow
40. Electric razor.

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Hi Dlygoblue,

Thanks for providing a list here. I've printed it off. It looks really helpful
How do you contact ACS regarding #24? Also, is the Protein powder similiar to the protein shakes but powder?

boardwalkgirl
Posts: 261
Joined: Jun 2012

I agree with the Aquaphor, I made it thru 6 weeks of treatment before my skin blistered and peeled and then I used Silvadene cream. I slept with a cool mist humidifier at night which helped keep my mouth and throat from being so dry. I also purchased a wedge pillow to sleep on when the mucous was so bad, made sleeping so much better. The Biotene Mouthwash helped with the dry mouth.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Here is another version of the list above..., some things are the same, some are not;

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
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
40. Ear plugs.

From the thread started back in early 2011; H&N Kit

Yep...you guessed it..., it came from the SuperThread .

I was never big on Aquaphor....wat to thick and greasy for me. But I really didn't need anything other than warm showers to loosen the dry (sun burnt) skin from radiation.

Also, while Biotene is more easily obtained than Stoppers4, I've heard that Stoppers works better for most.

Best,
John

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Joe,

Wow, did you get all of that? You might need a truck and some strong friends to carry it all. Least we forget, a nice recliner, chair or couch where you can rest up between treatments.

Good luck, just ask and see what you get.

Best,

Matt

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

It's just a compilation of items that have worked for many... It is a pretty good list though. I probably used between 25 - 30 items or close on that list.

I don't think anyone has went for it all, LOL... but you never know.

JG

Barbara B
Posts: 40
Joined: Sep 2012

Ditto on the recliner! That chair was my husband's place to simply relax, sleep, eat, watch tv, he did it all with a remote and a bell. The bell? That was to call for me of course lol. I figured how else would he be able to get help if he needed it.

The list above is a great resource, but I would start slowly. Everything is so overwhelming at first that you should try to take things as they come.

Besides, EVERYONE here is so very, very helpful. Just ask and they will answer! Barbara

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

I'm going to say I just winged it with what the Radiologist gave me, Aquaphor, face cream, along with scripts for magic mouthwash, lorazepam and pain meds but then I forgot my sister was better prepared, stocking up on Ensure and following up with the in-home nurses on supplies that I needed. Plus I had a sample bag from my dentisit that was helpful.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

John,

I used 17 on your list

Matt

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network