New to me

[marshie]

Hi has anyone heard about a tablet you put on the inside of your mouth on your cheek and it helps with saliva its called XYLIMELTS I think its something herbal but not sure I am reaching for anything that will help Brian with the dry mouth Thanks marshie

[Karen_Rose]

Marshie I have tried lots of different products that do absolutely nothing. Earlier this year I found OralSeven moisturizing gel which works well for me. Best wishes

[marshie]

Thanks Pamela and Karen do you get them in a health shop or a chemist? Unfortunetly they took Brians full set of teeth out before he had radiation. That's another one I haven't heard of Oral Seven so I will stay on my Quest All the best marshie

[Karen_Rose]

OralSeven is available from Chemist Warehouse. If you want to try it but have problems finding it just let me know. I had almost all my lower teeth and jaw removed due to osteoradionecrois. That was 12 months after most of my tongue and floor of mouth was removed in 2007. Radiotherapy and chemotherapy caused life changing issues for me. Good luck! Karen

[Pamela]

I have only bought a couple of Biotene products at chemists in Australia. I have not tried health food shops as they are generally fairly dear. I am a member of Survivors of Head and Neck Cancer facebook support group (https://www.facebook.com/groups/45891977828/), the majority of whom are American. I got the names of items from their comments and when a friend travelled to US recently he bought them for me, a fair bit cheaper than some Australian prices.

[Pamela]

Hi Marshie I use Xylimelts and find them good for about six hours at night. I prefer them stuck to the roof of my mouth rather than teeth/gums although the instructions warn of choking in that position. I also use a number of Biotene products - all good - toothpaste, mouth rinse, mouth spray, mouth moisturising liquid and dry mouth gum, plus ACT dry mouth lozenges and TheraBreath lozenges. With the Biotene mouth rinse, I only use a very small amount to moisten my mouth so there is little to spit and waste. Some of these are not available in Australia (as far as I know) but a friend bought them for me to try when he visited USA recently. Hope you find something that suits Brian, Pamela 🙂

[marshie]

Hi all of you thankyou for your comments Brian has tried all the Biotene ones but no help Pamela is the xylimelts one of the ones from the U.S it looks as though I will have to go to the bank and get a credit card I cant use my card on the comp. Bless you all marshie

[Pamela]

Marshie If you open a PayPal account and use your ordinary bank account to pay from, it will be a very safe way to purchase items without the need for a credit card.

[marshie]

Hi PAMELA I DONT LIKE putting my bank details on the comp ha ha i'm old fashioned like that Cheers marshie

[Pamela]

OK, Marshie but I don't think it would be any safer getting a credit card and using that. One other option is to open another account especially for purchases and only ever have the amount of the purchase in it so nothing more can ever be taken.

[marshie]

That's a good idea I didn't think about that I'm just use to our one account.You live and learn even at my age. Thankyou marshie

[Pamela]

Life is a learning curve, Marshie. Glad to be of help. Warm regards, Pamela 🙂

[marshie]

Hi Karen yes we have a chemist warehouse near us I will try them.How are you managing to eat and keep your weight stable Brian has lost so much he is steady now but can only have shakes and sustagen you were sure right when you said it changes your life but I feel so helpless trying to feed him and he cant even have scrambled eggs so I just mix them with milk but it would be lovely to give him a dinner. Its 5yrs in nov. last time he saw his surgeon he said I wish I hadn't had radiation and the specialist said if you hadn't you might not be here now. So that's how it goes sorry for rambling ha ha marshie

[Pamela]

Marshie, never apologise for rambling, raving, ranting, venting or any other name it's called. That is one of the reasons we are here. You can vent to people who know where you are coming from unlike many of family and friends, many of whom have no idea. Another great group you may like to check out is: Survivors of Head and Neck Cancer (https://www.facebook.com/groups/45891977828/) - a wonderfully helpful, accepting group of people. Kind regards, Pamela 🙂

[Karen_Rose]

Marshie I can’t say I disagree with Brian’s comments about radiation. Obviously those patients who return to a pretty normal lifestyle without major loss of function or change to facial appearance are satisfied with their treatments. Those of us with irreversible changes think differently. We’re human! I had a PEG for 3 ½ years. Besides Ensure, I lived on soups and milkshakes. Because of the texture I couldn’t swallow scrambled eggs for about 4 1/2 years, but I could swallow small spoons of soft boiled egg washed down with water. Every morning I have warm porridge with ¼ teaspoon honey. For years mashed potato and pumpkin was grainy like sand. I can eat mashed potato and pumpkin now. I also eat some pasta dishes like vegetable lasagne or tortellini with a creamy sauce. Tomato sauces or fruit juice drinks are too acidic now. I remember trying pancakes with maple syrup and ice cream. Pancakes are easy and I could taste the syrup without burning my mouth. Unless the food item breaks down, softens or dissolves by itself (without help from teeth and a mobile functioning tongue) I can’t eat it. Food consistency is very important. Brian might like porridge or perhaps mashed up weetbix for breakfast. It’s a long slow process. I will make a list of other foods that work for me. Karen

[marshie]

Hi Karen I think your doing well Brian has gone the other way he used to have porridge every morning but now cant seem to get that down the oncologist said looking at his throat when he emamined him he said the inside looked as though he had had a lot stronger radiation than he had he must have been sensertive to the radiation luckerly we have special masks now so you don't loose your saliva glands.Brian was not impressed ha ha I think we have tried everything possible for him to eat as long as he can keep his weight stable and have some more injections to help his neck he will be ok Frances

[Pamela]

I had full depth surgery to remove a SCC (mouth ulcer) inner left cheek near corner of my mouth plus the rest of the inner left cheek sliced to remove pre-cancerous leukoplakia and neck dissection. Then wrist graft folded to cover inner and outer cheek with forearm tendon to give pull at new mouth corner so I could smile. Mouth no longer closes at that area - left corner. Then thigh graft to cover wrist. 30 rads a few weeks later. Result - facial disfigurement, face/neck lymphodema, nerve damage to face/neck/wrist/hand/arm, slow healing thigh graft (now past 2 year mark, severe chronic pain and heavy meds that barely work. My surgeon has learnt from my wrist problem and now does grafts from the upper arm, not needing a thigh graft to cover. Apart from that, I would do it all again, rads included, if necessary. Anything less was not worth the risk. But each of us must make our own decisions based on knowledge and treatment available at the time. Regrets are not helpful. Best wishes to all, Pamela 🙂

[marshie]

Hi Pamela I have seen that site but belong to INSPIRE that's an American one as well. The people on there are great and I have made a lot of friends that I talk to privately I have been on it for about 8or9 mths and its not only Cancer but different things like FIBRO and DEPRESSION and we all talk and help one another. marshie

[Pamela]

Hi Marshie Am glad you have found that additional support that is such an important part of our lives - living this 'new normal', be it for patients or their carers. Good blessings for both you and Brian (((hugs))) Pamela 🙂

[marshie]

Hi Pamela and Karen I have sent away for some XYLIMELTS to the USA the first site didn't send to OZ but the 2nd did (I used my daughters credit card) so I will wait and see what happens. I haven't managed to get into town to get the Oral Seven its been a hectic week but I will and both you ladies from the Eastern States I am from WA and from England 45 years ago a $10 pom my husband and 3 children. Cheers marshie

[Pamela]

Hi Marshie I hope you find them as good as I do. Most things I've tried have been helpful for me, while being of no use to some other people. Just a case of finding what suits. Kind regards, Pamela 🙂

[marshie]

Hi Pamela They say my xylimelts are on the way so I am keeping my fingers crossed also they are in the UK and my daughter is coming over in Oct. so she is bringing some I hope brian finds them as effective as you did. Its his 77 birthday today I have got him some oysters hoping ne can eat them. Hugs marshie

[Pamela]

Hi Marshie Happy birthday to Brian. I hope you both enjoyed his special day and the oysters slid down easily. I hold the Xylimelt brown side against the roof of my mouth when going to bed. It sticks there within half a minute or so. I then go to sleep without moving my tongue against it so it dissolves very slowly over many hours. Mouth movements (such as talking) make it dissolve faster. If it has gone when I wake too early to get up I then have a squirt of Biotene Mouth Spray or Moisturising Liquid (a bit thicker than the spray) to get me through till rising time. Good blessings for the best options for Brian. (((Hugs))) Pamela 🙂

[marshie]

Hi Pamela well we had a nice quiet day a lot of phone calls from all over the world from children and grand children and some more on FB. Alas the oysters wouldn't go down I thought he was choking to death I think with just having smoothies and mainly drinks I think he cant swallow anything anymore. (don't worry the oysters didn't go to waste ) Hugs marshie

[Pamela]

🙂