Hi guys thanks for your wonderful feedback, can you tell me, is it the same procedure for PEG AND PORT can you have them put in at the same time, is the Port only for drugs or what. Is the PEG a big hole you put only fluids in, can I drink Pineapple, just as they are fresh off the trees here and so nice to drink. What fluids should I be drinking and not drinking, can I still use my mouth and throat to eat and drink when able too, and use my PEG as a backup.

How many of you get bad nausea and does the drugs control it, nothing to make you feel worst then being sick, how can I stop the sickness.
Is it common to get thrush in the mouth, if so, how do you minimize that? do many of you get joint pains I get that now when I wake up, at 64 lol do you suggest I put on 40 lbs before I have the treatment, what I�m worried about is my one lymph node in my neck that is swelling a bit more each week, is a sign of the cancer spreading fast around my body, how fast did your node swell and was it painful if so how did you stop the pain. or throb sometimes in my case in the mornings mainly.

Did many of you use this fake spit, Stoppers, spray, I don�t know if I can get it from here, you know any on line website sales for this? Did any of you use the Biotene GUM< GEL<MOUTH WASH, did you find it works well. What did you use for keeping fluid in your mouth�.Have any of you use the aquaphor ointment for your burning neck rad.

What did you find the best treatment to stop the nausea, is there tablets or oral medicine?

Jon, slow down some and use logic for some things. Such as whole pinea[[le from the tree into your stomache thru a tube. I don't think so. Yes it will be nice if you put on a few pounds in order to cover what you will lose. I lost 70 lbs and didn't hve a peg, but maybe should have had one. That wasover 2 years ago when I had the dissection and surgery. I went fro 220 down to 147 which is a few more than 70. I had just gotten back up to 180 and a Cat Scn showed that I had an Abdominal Aortic Aneurysm reocurrence, The Surgeon did manage to repair the upper half of it, waiting for the right time to do the bottom yet. I went back down to 160 and am now at 174. As for biotene products and aquaphor, I used both and still use the mouth wash a few times a day. Yes Biotene products do help with the moisture. Use the tooth paste to brush with and if like me , the teeth had to go, brush the tongue and inside of your mouth.The Aquaphor I used all the time and my shin was almost normal about 3 weeks after the surgery. As for nausea, I was lucky and never had that feeling. maybe because I only had liquids. I think it would be best if you stopped worrying and wondering, but take it as it happens. Keep an upbeat mind set if you can and it remember, happy thoughts are much easier to handle. Good luck Jon and you will handle this depending on your outlook. Jim-=-- email me with questions if you want and I will try to answer your questions.

Hi Exjim as I am alone in a foreign country and do not have a care net work here, I have to look deep into the things that could happen before they do, so as to have all the spit gel, stoppers and Gum, plus The Aquaphor ready, rather than trying to find it, when I�m deep in nausea and feeling very ill.

I am hoping to have these things sent to me via the internet so I need to know where to buy stoppers, as they are not even on the internet, I need to know how to buy the Biotene products, have them sent and buy many of the carnation VHC breakfast drinks.

Also I have an added problem, that I must be working, because I am a teacher here, more than 6 days off in any semester you�re out, no matter what, so I have to be very careful, to keep as well as possible and at least be seen in the mornings, even if I feel to bad, I can sometime slink off in the afternoons, so as you can see, any advice you can give me would be so much help in the predicament, I find myself in, even though I love living here and working in Thailand, because when my business went bankrupt, in the last recession I could not find work, in the UK England when in my 60s, here I can and have a dream life and job in a wonderful country.

So if I�m feeling sick, I need sickness medicine, where I can get to it, if my joints are in pain, I need this medicine nearby, if my mouth is dry I need the Biotene, where I can find it, not have to go to pharmacy�s looking, to see if they stock it in this country and it takes 3 weeks to get here.

So any advice you think I will need, to stock up on and any good web sites, you know where I can have it sent to Thailand I would surely appreciate it ..any pain ki;;ers you know of or any other side affects to be ready for thanks.

my main worry at the momnet while Im waiting to have the treatment is this left lymph node is swelling and quite hard now and feels like an alian stuck to the side of my neck and making a thobbing feeling form time to time. do you think it means the cancer is now spredding all over my body and is getting to a stage where they cant traet it or is this normal.

I hope you now understand.

Jon

Jon,

The port and Peg can be placed at the same surgery if your doctor/surgeon agree.

The port is a device that is place into your upper chest area near the clavicle. It is totally under the skin so it stays sterile. With each chemo treatment or even to have blood drawn, you will get a "stick" thru the skin and into the port. It is minimally painful and the infusion nurses are great about applying an anesthetic topically to numb the area. Bill actually had a cream that he could apply an hour before his "stick" that would numb the area so, no pain. Once into the port, a small IV tubing is placed to usually, first draw blood and then to infuse you. Chemo is fairly hard on your arm veins so the port keeps the nurses from having to find a good vein each time they need blood or need to administer chemo drugs.
The PEG is placed into your belly. There are pictures here on the OCF main website that show a PEG tube. You can continue to eat and drink by mouth with the PEG and as a matter of routine you should continue to swallow something several times a day even if you are totally eating by way of the PEG tube. Liquid supplements and water are put thru the PEG tube in several ways: You can simply pour it in with a wide syringe base, you can push it in with a plunger into the syringe, or there is a machine that you can hook up to that will feed you over a long period of time..say when you are sleeping.

RE: the pineapple juice. You can continue to drink the juice as long as your mouth can handle it. Since it is so acidic, I suspect that a few weeks into treatment, you might not be able to tolerate it. If you feel like it is something that your body needs, you could pour it thru the Peg as long as it is not too chunky.

Hope this helps,

Deb

Thats wonderful, debandbill, just part of what I needed to know. thank you I take everything at a stage at a time, so it does not all come over me, as to much information, but for some reason at this time, I am interested to know all in advance, that will help me, may be my body thinks its some one else that is going to have this treatment, until I do that is lol

Jon;

I did not get the port. The last three chemo treatments were hard on the arm since my veins were very hard to find by that point.

Jon,
Has your medical team sent you for a dental evaluation?

It is important to have any dental work done before starting radiation.

Once your radiation treatments start, and from then on, you will need to apply fluoride to your teeth daily. Most of us are fitted with fluoride trays for this.

Going into treatment, it seems to be good to be a bit overweight. I was told to try to add ten pounds. Every week I had an appointment with a dietitian who double checked my weight and made adjustments for constipation and the like.

You might want to see if your medical team includes a dental group and dietitians.

FYI, My liquid PEG nutrition was called Nutren 1.0 with fiber. It is made by Nestle. Although it only has 250 calories per can they said at eight cans a day I got both the calories and liquid hydration I needed. Hydration is very important.

Jevity is also real common. Some like Nutren 2.0 and Carnation Breakfast VHC-560 that pack twice the calories, but it needs to be diluted to get down a PEG.

Just drinking this stuff, the Carnation tasted the best to me, but by week four nothing tasted good (horrible taste). Some people apparently lose their taste completely, so in that case it probably doesn't matter.

If you don't get a PEG, I recommend you try to get the Carnation VHC (360 or 560

Since I was always able to drink water or juice and eat soft stuff like pudding, I never managed all eight cans -- usually just six.

Jon, I will look for email addresses for the companys that make these products and pm them to you. They will know if there are the products available there for you. I understand you now and what you are saying.

Jon:
You can buy all of the Biotene products through www.dentist.com
I would definitely buy the toothpaste and toothbrush. When I was going through treatment, the flavoring of other brands of toothpaste was just too strong for my mouth.

Also, Biotene's soft toothbrush is softer than any you will find in a drugstore, and it's extremely helpful especially when you're mouth starts getting sore.

I used Aquaphor when my neck was first becoming red and sore while going through radiation. Late, I was given a prescription for 1% silver Sulfadiazine Cream for more sever burns.

Hope this helps
Sandyst

You can buy the tooth brushes in the OCF web store at a very competitive price.... Help yourself and help the foundation at the same time.