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#161092 01-30-2013 12:53 PM
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I have been reading all I can from these forums and notice that the USA have a lot of useful things that we do not have in England and wondered if there are alternatives or different names for things and wondered if anyone could help?
Club Soda - is this soda water
Ensure?
Alternatives for high calorie drinks
Magic Mouthwash.
Thank you all for your help and support.


SCC type 1 tumor in left cheek aged 45
T2N1M0 - surgery 14/2/13 to remove tumor, skin graft from wrist, neck dissection. No rads/chemo.
Mandy Rose #161093 01-30-2013 01:34 PM
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club soda or seltzer water

Ensure is a high protein drink which also has some vitamins in it, there is also boost very high calorie as a good alternative to ensure. These can be ordered online.

Magic mouthwash is a prescription formula which the 3 ingredients can vary (maylox, benedryl, lidocaine is one combo).



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #161095 01-30-2013 01:57 PM
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Thanks for your help, I am just trying to get prepared! The NHS advises gargling with soluble asprin for pain after radiotherapy which I feel might be slightly less than adequate.


SCC type 1 tumor in left cheek aged 45
T2N1M0 - surgery 14/2/13 to remove tumor, skin graft from wrist, neck dissection. No rads/chemo.
Mandy Rose #161096 01-30-2013 02:04 PM
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Hi
I'm in the uk as well Mandy. I used salt water and bicarbonate to rinse. The hospital gave me Mugard which was ok. Ensure drinks were given to me as well but I couldn't drink them.
If not offered then ask cos it's there to help if you need it.
All the best
Jayne


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
Mandy Rose #161097 01-30-2013 02:04 PM
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HI Mandy

yes, club soda is soda water. Any fizzy non sugar drink will do - even sparkling mineral water. Alex liked the sparkling water as it had slightly less fizz which worked better for him. Soda water hurt his mouth whilst he had ulcers. Left to go a little flat and it was fine

Ensure is a brand of high nutritional food (liquid) and should be available in the UK. There are many brands and you may have heard of Jevity, or TwoCal. These products are usually available through your hospital dietician via the NHS. Supermarket brands such as Sustagen are available but are weaker versions and a poor second choice. They are supplements as opposed to complete nutrition. If you need complete nutrition (ie your diet is almost non-existant) you need to ask your dietician for recommendations and possibly to put you on a scheme that allows you to get it through the NHS (this is how it works in Australia - not sure about the UK).

Christine has answered your question re Magic Mouthwash - you need to ask your doctor about something to kill the pain of your ulcers that contains a topical anaesthetic to numb the pain in your mouth whilst you eat. That will get you to the UK equivalent


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Mandy Rose #161130 01-31-2013 08:39 AM
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Here in Toronto, My hospital specifically recommended, soda water. (aka club soda) apparently the components of it - the sodium bicarb, etc... were the same as mixing the salt and baking soda, but this is a mixture you can drink so it heals the throat, whereas the baking soda mixture should be swished gargled and spit. They also recommend flattening it as some people become super sensitive to the fizz during rads. I for one still can't tolerate anything with fizz, and as of this coming monday I am 2 years post op and 21 months post rads.

best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Mandy Rose #161190 02-01-2013 07:03 PM
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Klo, that's interesting to read about your supermarket brands of nutritional drinks. Here they're pretty much the same as Ensure or Boost. I think the stuff all comes out of one factory and they just put different labels on it. But then, that's what I think about most American food products... there's this huge plant in Kansas with train tracks going off toward all points of the compass. Box and ship!

(Oh and PS I'm not referring to Jevity, which I understand is higher density stuff; never tried it, I just use whichever of the clones is on sale)


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Mandy Rose #161197 02-01-2013 07:42 PM
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I think most are Ross Nutrition, like Jevity, which is a subdivision of Abbott laboratories makers of Glucerna products. The Glucerna 1.5 has more protein than the Jevity 1.2, both of which I have, but these are probably available through durable medical goods stores not grocery stores.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Mandy Rose #164284 04-24-2013 05:54 AM
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Hi Mandy, I am in the UK too. Ensure is avaialbe here to but I was prescribed Fortisip which is very similar (you will find them on Amazon but you should be able to get them on prescription or from the hospital). I still use a bicarbonate of soda solution regularly as a mouthwash and when my mouth was very sore I was prescribed Diflam/Benzydamine (Oral rinse - locally-acting nonsteroidal anti-inflammatory drug with local anaesthetic and analgesic properties) and also Antacid and Oxetacaine suspension (made up at the hospital but like Mucaine)which between them have a similar result I think to Magic mouthwash. This forum will give you a lot more info than I could squeeze out of my doctors so make good use of it, there is loads of helpful info here. Good luck with your treatment. Sally


Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
Mandy Rose #164290 04-24-2013 07:56 AM
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Mandy - I was kind of surprised to see that they want you to rinse with some soluble aspirin. That seems counterintuitive to me. Aspirin is acetylsalicylic acid . The mechanisms of pain relief with it is never through direct contact but through stomach absorption and outward from there. When aspirin comes in direct contact with the mucous membranes of the mouth it causes burns. I can remember a patient that came into the clinic that had a tooth ache and the idiot had taken an aspirin tablet and put it on his gums hoping to directly get the relief there faster. It had caused a huge ulcer on his gums within a few hours� something significantly more painful than the tooth ache.

Perhaps when soluble it is diluted so much it is absorbed faster in your stomach, but that can't be highly consequential. This statement must reflect some across the pond differences in phraseology rather then chemistry because no one would ever topically apply aspirin, that just isn't how it works.

I kinda laugh some times at what the health service has said when it comes to things ( other posters comments) because in my case the pain from the radiation induced mucocitis in my mouth required MORPHINE and other opiates!! And my situation was not uncommon. Obviously you want to take the lest damaging drug to deal with pain as you can, but it will not be long before an aspirin tablet (taken properly) will not even put a dent in the discomfort.

Please don't let this scare you, I did not mean it to, but just wanted to convey that the doctors may have misstated or something may have been misunderstood. I am sure when the time comes it ail sort itself all out.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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