Radiation without feeding tube

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stevenpepe said:

Thank you all for the

Thank you all for the informative comments. Spoke with my chemo doc, as well, and he did not recommend the tube, either. Swallowing is the main issue and he assured me the nursing staff will help me through it with therapy/medications. For now, I will take their advice and see how bad it's truly going to be. This is something I am NOT looking forward to!

Feeding Tube or not?

Hi Steven

I assume you hav estarted your treatments by now? I am still recovering from a very similar experience to your, so I thought I'd post a comment. I did not use a feeding tube either and I still have mixed feelings about it. I think a truly helpful staff might make the difference. I had a real problem with mucosa (sores) in my mouth and throat. Possibly more than most people, according to my doctors, so it became extremely difficult to swallow towards the end of the treatment. I acurtally missed the last two of the 30 treatments because I became very afraid that I would nto be able to swallow at all. Indeed, from the start of the 5th week of treatment and for several weeks after, it was everything I could do to drink three ice cream shakes each day. I did get through, but it was very rough. However, my oncology staff was no help or support at all. They acted like they had never done this before and had no help or suggestions for gettting through the difficulties other than to say "Your poor thing!" If you have a team that will support you when things get really tough, then you will probably get through okay. Also, you may not have as many sores as I had. In my case, if I had it to do again, I would have the tube put in at around the end of the third week, but keep drinking and swallowing as much as possible.

bebo12249

I asked for a feeding tube

I asked for a feeding tube prior to rad/chemo due to my weight - 170. The Med onc said she didn't use them unless needed; she didn't place them prior to treatment. I lost about 15 pounds during treatment and am glad that I didn't get one.

Kenny-

i had no tube, prepare for the worst

I had no tube and I'm in my 30s. Mine was a different, nasophrangael cancer, but mouth sores were the worst. I lost 20 lbs (I'm a thin guy, my BMI went to underweight). At times through the entire treatment, I really did wish I had a tube. I recalled it took me 20 minutes looking at a cup of water to swallow it. I didn't want my Ensures, but family forced me to. Are you going through this alone without support? If so, I recommend a tube. There's no way I'd be motivated to eat anything if it wasn't from the constant pestering of family members that I needed nutrition.

Fast forward, having no feeding tube has caused my recovery to go a lot quicker. I see improvement (baby improvements) on a weekly basis. Slowly omving from liquid meals, to semi-liquid, semi-solid, solid, spicy, etc. I'm 7 months out from radiation, and 3 months out from my last chemo. I can eat anything again as long as I drink a lot of water. 

Looking back, I don't know what I would have preferred, no point second guessing for now. But I made it through you and will do the same regardless of the choices you make on your tube! Family pestering is important! Good luck!

Drivingdaisy

I have a Feeding Tube

Hi Steven,   I am going on 4 wks Post-treatment and still have my PEG.  Mine was put in at the 3 wk point due to not being able to eat or drink anything, not even water.  Mouth sores were horrible.  Though I originally fought having one, for me I am glad the Doctors pushed me to get one.  Though I have lost quite a bit of weight, probably would have lost even more without it.  One thing I did through-out treatment was to swallow and stretch my mouth/jaw muscles constantly to keep them strong.  This past week I have been able to graduate off the tube totally and drink all my shakes.  I have also added different foods.  Cream soups, cottage cheese, yogurt, pudding, even had 1/2 of a beer today as I watched The Prekness.  I see my Doctors in 1 1/2 weeks.  If I keep doing well and making progress, I will ask to have it removed.

Josephwc

Starting my 5the week of radiation and no tube ( knock on wood)

The end of my second week was by far the most challenging so far. The pain was severe in the back of my throat so I found drinking water and lots of sleep was what got me through. The pain has started again this weekend and my intake has definitely reduced. I didn't eat much from Wednesday evening until now and I vomited my meds and blood this morning. I have been drinking lots of ensure in milk to help.  I am from Maryland but I live in India and my doctor has prescribed two new meds (addcure to deal with radiation burns and buffered sorbitol to increase saliva) both are made here in India. Everything tastes horrible and I'm finding it harder and harder to eat but I'm trying. I had a free flap reconstruction, radical disection of my nodes on the left side to deal with my tongue cancer. No metastasis was found so I am keeping my hopes up that this radiation is the last of this whole ordeal. I teach so my profession is definitely a worry. So far I have used the addcure cream on my neck plus Solarcaine. My neck is so itchy and painful at the moment. 

osmotar

No Tube

Hi Steven 

I did 7 1/2 weeks , everyday of rads with no tube ; my rad doc said if I didn't loose more than 2-3 lbs a week he wouldn't put one in...i drank plenty of fluids, ate whether I could taste food or not,mostly not , added boost and ensure , I really didn't have swallowing or mouth issues . I'm just about 6 months shy of being out of treatment 5 years Stage4A SCC of the right tonsil...good luck and blessings.

Linda 

LiseA

Linda, that's amazing. 

Linda, that's amazing. 

kdot2003

Kenny- said:

i had no tube, prepare for the worst

I had no tube and I'm in my 30s. Mine was a different, nasophrangael cancer, but mouth sores were the worst. I lost 20 lbs (I'm a thin guy, my BMI went to underweight). At times through the entire treatment, I really did wish I had a tube. I recalled it took me 20 minutes looking at a cup of water to swallow it. I didn't want my Ensures, but family forced me to. Are you going through this alone without support? If so, I recommend a tube. There's no way I'd be motivated to eat anything if it wasn't from the constant pestering of family members that I needed nutrition.

Fast forward, having no feeding tube has caused my recovery to go a lot quicker. I see improvement (baby improvements) on a weekly basis. Slowly omving from liquid meals, to semi-liquid, semi-solid, solid, spicy, etc. I'm 7 months out from radiation, and 3 months out from my last chemo. I can eat anything again as long as I drink a lot of water. 

Looking back, I don't know what I would have preferred, no point second guessing for now. But I made it through you and will do the same regardless of the choices you make on your tube! Family pestering is important! Good luck!

Hi Kenny, 

Hi Kenny, 

Wow I remember that too.  Looking at a glass of water for 20 min trying to get up the nerve? Courage? willpower? to drink a sip.  That was something else.....

Karen