Previous Thread
Next Thread
Print Thread
Page 4 of 5 1 2 3 4 5
WendyG #98789 07-05-2009 06:58 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Dehydration was a big problem for me during Tx (last 2 weeks and 2 weeks post Tx). I wish the standard would be required port and daily hydration until 2 weeks post Tx. problem is that when you become dehydrated which only takes a few days without adequate hydration, you can pull your skin up say on the back of your hand and it will just stay up and your veins are almost impossible to find so that's why I think a port is important. The side effects of dehydration (nausea and constipation just to name a few)can make this Tx all the more unbearable.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #98798 07-05-2009 11:05 AM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
To avoid dehydration one must drink 2-3 liters of water every day (that's 6-8 12oz bottles). This includes fluids found in foods such as soup. Fluids must be replaced if they are lost through vomiting or diarrhea. It is very easy to get dehydrated and it will make you feel like sh*t as well. Staying hydrated also protects your kidneys if you are on chemo.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98818 07-05-2009 10:26 PM
Joined: Mar 2008
Posts: 404
Likes: 2
"OCF Down Under"
Platinum Member (300+ posts)
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Mar 2008
Posts: 404
Likes: 2
Hi Wendy

I'm really sorry to hear that Steve has to deal with this horrid disease. I hope that his doctors are managing his pain.

Where abouts are you located in Australia? I'm in Melbourne and if I can be of any assistance - please do not hesitate to let me know

Talk to you soon

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
WendyG #98820 07-06-2009 01:08 AM
Joined: Jun 2009
Posts: 51
Supporting Member (50+ posts)
Supporting Member (50+ posts)

Joined: Jun 2009
Posts: 51
Wendy, there are no silly questions! We have actually kept a food and water diary for the past several months. We couldn't understand why Dana was losing weight and getting dehydrated until we saw it in writing. We line empty water bottles up on the counter. The goal is 6 empties/day. If he is having trouble swallowing, it goes in through the peg tube. We started this after extreme dehydration led to low blood pressure with dizziness (no fun!) At one point, the Dr. wanted him to consume almost 3000 calories/day. This was when he was relying completeley on the peg. It was like having a baby in the house...feedings every four hours! Talk about quality time together! We still count every precious calorie, whether swallowed or liquid formula through the peg. We add calories by using whole milk, gravy on everything, and real butter. Unfortunately, I've gained weight way to well! Best of luck to you. We're here to answer any questions you have.

Diane


Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09


Dianeox #98827 07-06-2009 04:09 AM
Joined: Jul 2009
Posts: 453
"OCF Down Under"
Platinum Member (300+ posts)
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Jul 2009
Posts: 453
Thanks to everyone. I'm learning so much here. Things I never dreamed of. But I feel much more confident about where we are heading and the things we will be going through. Karen I'm in NSW on the hunter valley. We were in Townsville Nth Qld but after Steve's diagnoses we decided to sell up and head back to our family in NSW. So in the space of about 6 weeks we got his diagnoses, sold our house and took off on a 4 day, 2500km drive with 2 german shepherds and a cat in the car. Since we've been here it's been all go as well so as you can imagine it's been exhausting and extremely cold. Nice to meet another Aussie on here although I think you are all amazing.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
WendyG #98867 07-06-2009 01:51 PM
Joined: Aug 2008
Posts: 238
Gold Member (200+ posts)
Gold Member (200+ posts)

Joined: Aug 2008
Posts: 238
Wendy, we started off w/pen and paper but now my mom uses a small dry erase board which gives her a sturdier base. Works much better. Good luck to you and I'm so glad you found this website - it's a wonderful place for support and information. Take care.

Nancy T


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Nancy T #98880 07-06-2009 05:30 PM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Hi Wendy,
I have been away for a while from the board having surgery unrelated to OC.
Let me be another Aussie to say welcome to the OCF Forum.
Have read your posts both on this thread and on �New Job � Caregiver� and am happy to hear that all went well with the operation regarding the removal of teeth. Good to hear that he was able to keep the front ones.
I still have a few Oxycodone, find them great and am stretching the few I have left out over the next 4 days. Panadol should do the trick after that.
I can see that you are getting great advice from people here. As I had surgery only for my OC I cannot help with questions on Chemo or Radiation.
Did have teeth removed which added to the ones I already had missing and can help with food ideas.
You have had a long journey already with having to leave Townsville (have been there a few times and of course have holidayed on Magnetic Island a while ago now).
Is Steve being treated at Newcastle Hospital or coming down to Sydney.
There are 2 others close to Sydney that I am in contact with and I will let them know about your posts.
You both sound so positive and you will need to keep it up with the coming treatments.
Best Wishes
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

WendyG #98883 07-06-2009 06:32 PM
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
I lost sll of my teeth to OC as did ChristineB and it isn't fun and games for us. He will make it thru, but in the meantime. stsrt checking out recipes that are soft or can be made soft. The eating part is a big time pain in the butt. I hope she doesn't mind my speaking for her on this one, We exchanged recipes too LOL.. food for Gummy mouths and folks. There are some recipes posted in the formums.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #98885 07-06-2009 06:36 PM
Joined: Jun 2007
Posts: 10,507
Likes: 8
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 8

Thanks Jim, eating is a challenge alright. We are tough and can overcome this. Its just a tiny part of recovering.

Wendy, if you need more food ideas, let me know. Eggs are an easy soft food too. Applesauce should be ok for a while til hes mouth gets sore. Puddings and yogurt are also very easy foods.

Nice to see you up to posting again Gabe. Glad you are feeling better.


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 #98899 07-06-2009 07:58 PM
Joined: Jul 2009
Posts: 453
"OCF Down Under"
Platinum Member (300+ posts)
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Jul 2009
Posts: 453
He's being treated at Newcastle Gabe. We started everything in Townsville but the waiting lists up there are huge. It took 8 weeks from biopsy to full diagnoses up there. They also make people wait 6 weeks for radiation to start after dental work, not because of healing but because of their waiting lists. So we chose to sell up and luckily our house sold after only 9 days on the market. Mind you settlement hasn't happened yet but that's whole other story lol. It's been tough as I got knocked back for carers pension and steve got knocked back for disability pension. He is now at least getting some kind of benefit which helps slightly but as for me, nothing. Although Centrelink are reassessing my application after our social worker spoke to them. But yes, it's all been worth it as the hospital down here is wonderful. We are going to the Mater in Newcastle which is about a 40 minute drive away.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
Page 4 of 5 1 2 3 4 5

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,264
EzJim 5,260
Brian Hill 4,918
Newest Members
Kimkb, Red Chicken, Teach, Harry B, Snowdrop123
13,504 Registered Users
Forum Statistics
Forums23
Topics18,306
Posts197,298
Members13,504
Most Online7,516
Mar 21st, 2026
Powered by UBB.threads™ PHP Forum Software 8.0.1