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Heike #179611 04-25-2014 07:11 PM
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Don't apply any lotion before rads. It will just make it burn worse. Liken it to putting tanning oil on. Not a good idea. This is not the type of tan you want to enhance.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
ChristineB #179612 04-25-2014 07:43 PM
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Thank you Christine. I have tried to find a shop that ships to Australia but haven't been successful. I emailed Nestle itself and am hoping to hear from them soon. We can get Sustagen , maybe that's a substitute for it?

What an amazing job you do. I hope the youth is listening to you. Australia is very much anti smoking and now won't operate on head and neck (in public hospitals) if you smoke. I hope that you can reach out to as many as you can.


Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

Heike #179614 04-26-2014 12:07 AM
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Heike, I know that you can buy Ensure powder in 900gm tins from pharmacies in Australia. It costs about $22 maybe $24 per tin
Ensure is what most of us in NZ and Australia are recommended to eat/drink by hospital Dieticians as we go through this treatment.
Most of us get the ready to drink cans of Ensure plus. You can make this up yourself . The Ensure powder tells you to add 6 scoops but to make it equivalent to Ensure Plus you just add 9 scoops per serve.
This formula will provide your husband with all the calories, protein, carbohydrates and vitamins etc. that he will need . Make sure he drinks the equivalent of 6 - 8 ensure plus drinks per day. Of course you can add fruit, yoghurt, nut butters, oils and / or anything else you want to this .
Also make sure that he has some medication to help with constipation. He will get constipated. everybody going through this treatment does.
Hope this helps,
Tammy.


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Heike #179616 04-26-2014 04:48 AM
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Thanks Tammy. Will get it tomorrow.

I wouldn't have known what to buy.


Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

Heike #179628 04-26-2014 01:17 PM
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Some of your questions have been answered. Which is great everyone here is very helpful. There are other nutritional options the ensure is great. You can also pick up a protein powder to mix into a smoothie or if you get an unflavored one you can toss it in soups. They have chocolate, vanilla, and berry flavored too. Often one scoop is 25 gms of protein - he'll need a lot to heal.

The smoothies - you can add fruit and yogurt and ice cream.

Smoking is not a good thing - it would be best for him to quit but again you've already got a lot on your plate and frankly he'll either do it or not.

The type of chemo - I meant the name.. Cisplatin he'll need a lot of fluids. It can mess with his hearing - and is hard on the kidneys.

Let me clarify - is he having chemo once a week for 5-6 weeks?

(The other chemos are Erbitux, or carboplatin - these are the most popular)

Someone answered your question about the cream so that's great. I used to apply it directly after radiation and a few times later in the day, and once before bed. If he's fair skinned he may burn and blister badly, if he's darker skinned or olive skinned he may not have it as bad.. I tanned mostly. Had this funny tan from my nose down... wink

Anyway 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
Heike #179636 04-26-2014 06:27 PM
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Posts: 286
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Thinking of you as the treatment starts tomorrow Heike. Love and prayers from Brisbane.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Cheryld #179637 04-26-2014 07:14 PM
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Cheryl he is having 4x a week chemo and 5x rads and the drug is cisplatin. The doctor prescribed 4x chemo per week instead of once thinking he might handle it better to get it in small doses plus getting a drip as well.

Thank you for all your input. I am feeling so anxious and it's not even me who is getting the treatment. Hoping I've got it all organised �

Will watch out regarding hearing loss, dehydration and constipation.

Here we are, one day to go until treatment starts. Time flies.



Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

OzMojo #179639 04-26-2014 07:20 PM
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Heike Offline OP
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Thank you for your prayers and kind thoughts OzMojo.

Emotions are all over the place as time gets closer. I'm sure tomorrow will be quite emotional.


Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

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