Hello and looking for advice

ian1511

Hello Everyone. I was diagnosed with Stage 2 nasopharyngeal cancer on March 21, 2011. I am a nurse practitioner who worked in geriatrics. I'm 50. I'm now still on short-term disability. The journey has been painful, humbling and eye-opening.

I had a PEG tube placed. It is a button style. If I could do it over, I would have had the regular style tube placed as this small "button" presents difficulties. I have to place and remove the tube itself each time I "feed".

I completed 33 IMRT treatments to my nasopharyngeal area down to the clavicle level on May 25, so 2 weeks out from rad. I did sustain the equivalent of 2nd degree burns to my right neck, the more heavily irradiated side. It has healed and left me with darker skin, that seems to be peeling. The rad/onc doc told me he tried to spare much of my left parotid and some of my inner right parotid. Being Asian, he said I seemed to have genetically rather large parotids and he hoped this would bode well for saliva return at some point.

Looking back, I think I really erred by giving up oral food intake about week 4 into the rad chemo treatments. I just could not bring myself to swallow food that had no taste and that had to go down a really sore throat.

My throat still feels "hot" when I swallow my thick saliva. But, it is much improved when compared to the last week of radiation. It felt like broken glass at that time. Swallowing water is OK. I did make a shake of lactose free ice cream and peach slices the other day to test the waters and was able to struggle through 8 ounces of that. But, I thought, I can't survive on carbs! I tried a tsp of honey yesterday and gagged and almost threw up my tube feeding. That brought back too many nightmares of endless gagging while going through the 2nd and 3rd chemo weeks.

I am asking for a link or any advice or reference to any previous discussions on how to transition from total feeding tube dependence (me on Jevity 1.2) to oral intake. My saliva is still poor. And, I have virtually no taste, although, I can identify foods once they are in my mouth, perhaps through smell that has remained intact. I do not think I will be able to return to work unless I can get off some of these 4 a day tube feedings that take an hour each feeding.

You might think me crazy, but I think I've watched and DVR'd every Food and Cooking show while I was going through treatment. Friends told me I was crazy and sadistic. I kept dreaming of the foods I want to cook and eat once I am able to. At this point, I am worried. I hope and I pray I can eat once again.

Last note, I am going through Acupuncture to try to help with saliva and taste. I've only had one treatment on Tuesday, so far for this specific goal. No results yet.

I would appreciate all and any advice on this matter.

Thanks,

Darren

buzz99

Transitioning to oral intake
We can certainly relate to your situation. Buzz did not eat much at all for about 5 months and was tube feeding dependent for that period. He quit eating after his first chemo and long before he had to deal with the radiation effects. About 3 weeks after the end of treatment, he started to sip thick liquids such as milkshakes and smoothies. He had difficulty with anything cold. Scandishakes were a life saver. For about 2 1/2 months after the end of treatment, he took in only liquids but gradually increased the amounts and the rate at which he was able to drink them. He then started eating soups, fruit cocktail, pastas or anything bland with a lot of liquid. He could not even tolerate salad dressing initially as it burned his tongue. Be patient with yourself. Healing takes a long time. When you are healed sufficiently, you will be able to slowly begin eating again. Karen

ian1511

buzz99 said:

Transitioning to oral intake
We can certainly relate to your situation. Buzz did not eat much at all for about 5 months and was tube feeding dependent for that period. He quit eating after his first chemo and long before he had to deal with the radiation effects. About 3 weeks after the end of treatment, he started to sip thick liquids such as milkshakes and smoothies. He had difficulty with anything cold. Scandishakes were a life saver. For about 2 1/2 months after the end of treatment, he took in only liquids but gradually increased the amounts and the rate at which he was able to drink them. He then started eating soups, fruit cocktail, pastas or anything bland with a lot of liquid. He could not even tolerate salad dressing initially as it burned his tongue. Be patient with yourself. Healing takes a long time. When you are healed sufficiently, you will be able to slowly begin eating again. Karen

Thanks Karen. Wow, It is
Thanks Karen. Wow, It is difficult to hear, in terms of the length of time. I only say this because I am not sure how I will be able to swing work and tube feeding. I'll have to figure something out, if it will take that long. I certainly have experienced the difficulty with cold. I tried ice cream and it threw my stomach for a loop. Anything remotely thick makes me gag.

One other quesiton, I was able to transfer a picture onto the photos section, but it does not show up on with my posts. Am I not doing something here? Darren

Hondo

Hi Darren

Glad to have you here with the rest of the family on CSN, I too am only one of many NPC cancer survivors here and know all too well what you have gone through. It will take sometimes but thing will start to get better so hang in there. I did not use the PEG tube for my treatment everything went in the hard way, so I can’t help too much there. My taste came back about 10 weeks or so after my last treatment stopped but like I said I never stop eating through the mouth so maybe that helped.

Hope you plan to stay with us as a lot of us are here to help other go through fire.

All the best to you
Hondo

Kent Cass

Darren
I returned to work a month after my last rad, but by then was mostly with an Ensure diet at work- along with pancakes before and after work, at first. Having a G-tube, my 2.0 Jevity feedings only woulda taken 10-15 minutes, rather than an hour, and woulda fit into our 1/2-hour lunch. Tried some soups for awhile, but the flavor wasn't there. Multi-vitamin cut-up for breakfast, too. Slow going with trial and error to find what agrees with you. Might try scouring Sweet's Superthread for ideas on what's easy to digest at the start. Ensure was the real starting point for me, and what I weened myself off the PEG with.

Best of luck, and glad to hear you've weathered the storm.

kcass

ian1511

Hondo said:

Hi Darren

Glad to have you here with the rest of the family on CSN, I too am only one of many NPC cancer survivors here and know all too well what you have gone through. It will take sometimes but thing will start to get better so hang in there. I did not use the PEG tube for my treatment everything went in the hard way, so I can’t help too much there. My taste came back about 10 weeks or so after my last treatment stopped but like I said I never stop eating through the mouth so maybe that helped.

Hope you plan to stay with us as a lot of us are here to help other go through fire.

All the best to you
Hondo

Thanks Kent and Hondo. I
Thanks Kent and Hondo. I remain very hopeful. My energy is much better now. At least I'm doing chores around the house and some weeding, although, I was seeing stars a couple of days ago after weeding. I was told I was at the nader of the Cisplatin. They did some labs and I was slightly anemic, hemoglobin down to 10+, not that bad. No need for transfusion till I'm down to 8+.

I want to try transitioning to ensure-like products like Kent, but I am lactose intolerant. I think Boost, Ensure, etc are made with dairy. Sigh. I don't think Soy milk has the same balanced content.

I'm still not sure how to get my picture on the blue left edge of these posts. Can anyone help me with this? Is there a FAQ page with this info?

Thanks,

Darren

Goalie

ian1511 said:

Thanks Kent and Hondo. I
Thanks Kent and Hondo. I remain very hopeful. My energy is much better now. At least I'm doing chores around the house and some weeding, although, I was seeing stars a couple of days ago after weeding. I was told I was at the nader of the Cisplatin. They did some labs and I was slightly anemic, hemoglobin down to 10+, not that bad. No need for transfusion till I'm down to 8+.

I want to try transitioning to ensure-like products like Kent, but I am lactose intolerant. I think Boost, Ensure, etc are made with dairy. Sigh. I don't think Soy milk has the same balanced content.

I'm still not sure how to get my picture on the blue left edge of these posts. Can anyone help me with this? Is there a FAQ page with this info?

Thanks,

Darren

Boosted
Just looked at the bottle of Boost Plus in my hand and the answer is yes and no. It says that it is Lactose Free but among the ingredients are milk protein concentrate and calcium caseinate. I leave the chemistry for my wife but it sounds like you need to know the details. (Other people have other objections to Boost and Ensure, etc on other grounds but I leave these objections to them.)

Stay with us on the list and let us help you make it. I am not six months out from treatment and feeling great. You will be too in the fall. Doug

ian1511

Goalie said:

Boosted
Just looked at the bottle of Boost Plus in my hand and the answer is yes and no. It says that it is Lactose Free but among the ingredients are milk protein concentrate and calcium caseinate. I leave the chemistry for my wife but it sounds like you need to know the details. (Other people have other objections to Boost and Ensure, etc on other grounds but I leave these objections to them.)

Stay with us on the list and let us help you make it. I am not six months out from treatment and feeling great. You will be too in the fall. Doug

Thanks Doug.
I definitely
Thanks Doug.

I definitely intend to stay here. It's funny, my acunpuncturist and I developed an immediate bond...because she is going through CA herself. It's a special club!

Are you eating anything else besides Boost or Ensure yet? Yes, I've looked at the labels of these drinks closely. I think lactose intolerance is just that, not having the enzyme to breakdown the lactose. So, I don't think that milk protein or calcium caseinate should cause an effect. I'll buy a bottle, if I can, and try some.

It will help me this weekend. I have a ticket to see the Adding Machine in Milwuakee, 1.5 hours away. I'm going to do a tube feeding before I leave and take an energy drink along. I'm going with a friend, so he can take over the driving anytime, I don't feel up to it. I need to get out of the house and enjoy some life again. Darren

ratface

ian1511 said:

Thanks Doug.
I definitely
Thanks Doug.

I definitely intend to stay here. It's funny, my acunpuncturist and I developed an immediate bond...because she is going through CA herself. It's a special club!

Are you eating anything else besides Boost or Ensure yet? Yes, I've looked at the labels of these drinks closely. I think lactose intolerance is just that, not having the enzyme to breakdown the lactose. So, I don't think that milk protein or calcium caseinate should cause an effect. I'll buy a bottle, if I can, and try some.

It will help me this weekend. I have a ticket to see the Adding Machine in Milwuakee, 1.5 hours away. I'm going to do a tube feeding before I leave and take an energy drink along. I'm going with a friend, so he can take over the driving anytime, I don't feel up to it. I need to get out of the house and enjoy some life again. Darren

Just drink the Jevity
Hi Darren

Just start drinking the jevity 1.2. They pretty much taste like milk and you already survive on them. I was on the 1.2 also. Start supplementing with what ever you can get down, oatmeal, cereAL, salad. The point is you will still be getting all your nutrition from the jevity and there is no pressure or hurry. You will begin to eat more foods and naturally will not take as many jevity's.