Oh my gosh... this is a total rollercoaster ride! Quick update, on Wed they tried to do it thru his mouth and the tube wouldn't fit down his throat because the tumor is closing in on both sides. Thursday, they attempted the PEG but couldn't do it because his colon and liver are in front of his stomach. So NOW, they want him to have it done with a surgeon in the OR to see if it can de done that way. Here's the kicker... can't see the darn doctor until NEXT Wednesday for a consult, with the surgery scheduled for NEXT Friday!!! All the while, he is having difficulty eating. Poor Guy! The radiologist and the surgeon are going back and forth with each other because the radiologist doesn't want treatment interupted, and the surgeon says, but he needs food. So that is why surgery on a friday, so he doesnt miss treatment. He will have to be in hospital for a few days. I know those of you who have been through all of this can understand and sympathize. I just want him to be able to have some nourishment at this point!!!

Thanks for always being here to answer my questions,listen to me vent, and to lift me up! LOVE this message board!

I did not have the Peg but my RO also was pretty adamant about not interrupting the rad schedule. I remember I was admitted to the hospital due to everything in my last week of rad and I was one sick weak puppy. They wheeled me into the rad room and nuked me anyway. I didn't miss one rad Tx my entire time and I was lucky as their IMRT machine did break down a few times, just not so it affected me. Brian knows more about this than I but I did read some articles discussing the trend towards more rad sooner in an effort to deliver the most killing juice as soon as possible. I believe studies may have indicated a better kill rate than the same rad dose over the traditional 7 weeks.

Is there just no way to get him to swallow anything on his own?

David,

Bill's RO quoted us 10-15% better cure rate with hyperfractionated rads...but also said that it is a pretty rough way to go and if you have to stop while receiving this due to too severe side effects, you have lost some of the "oomph." Bill opted for it...twice a day for 31.5 days (skipped three days the last week due to neutropenia and fever) but finished the total course. So, did it make a difference????...guess we won't know...all we will know is if it was successful or not.

Deb

What a mess. I hope your father has some kind of distraction.

I had the PEG put in by a surgeon. Tell your Dad it's just another thing to put up with but at least he will be able to "eat" and build up his strenght.

With prayers for an easy week until then.

Malka

[quote=Malka]What a mess. I hope your father has some kind of distraction.

I had the PEG put in by a surgeon. Tell your Dad it's just another thing to put up with but at least he will be able to "eat" and build up his strenght.

With prayers for an easy week until then.

Malka [/quote]

Thank you. It has been very hard on him. He is angry, frusrtated that he cannot eat, and just wants to get this going. I am sure you can relate. How are you doing with it? How long have you had it in? Any thing I should be aware of with it that I can share with my Mom? (I live 2 hours away from them.) Any and all information of expectations are appreciated.

Your poor father. Its a shame he is having such a rough time already. I had my PEG and port installed the end of July, a week before my treatments started, in the OR by a surgeon. From what I remember I was very sore, I was given alot of morphine for pain. I also stayed overnight in the hospital one night. The doctor had to loosen the PEG tube because it was too tight. Once its in its really no big deal anymore. One thing you might want to pick up is antibiotic cream. After a shower, I put some around the PEG tube on my stomach, I then cover it with a gauze pad. For the feedings, I use Two-Cal, its prescription liquid feeding nutrition. You or your mom might want to check with the doctor about a prescription for the feeding cans. Mine is covered by my insurance. I have it delivered along with the gauze pads and syringes. I also have a feeding machine they gave me (also thru insurance) that I use at night. Hopefully you have a medical supply/equipment place in your area who will do all the insurance work and deliver everything to your parents home. One more important thing to tell your dad, once he has the PEG no lifting anything heavy. That includes shoveling snow. Has your father tried ensure, boost or any of the carnation drinks? That will help him to keep his stength up.

I "received" the PEG while in the hospital for mandibulectomy and ND. I am not sure at what stage of hospitalization but it was sometime after surgery. I was due to have a swallow test and possibly have it removed about a month after surgery. That would have been the first week of August. However, we live in New Orleans and that is the week that the infamous Madam Katrina decided to pay a visit to our area.
Not all my meds were available in liquid form. It would be advisable to be prepared ahead of time for this possibility. Tell your Mom to check his meds. If any will need to be crushed she should buy a pill crusher/splitter combo and test the meds. The 1st one I got did not do too well so I got another. Also, ask nutritionist in the hospital what if any vitamins he should be on. Don't take "a good multi-vitamin" as an answer. I recently discovered that the one I had been taking for years had much more of some ingredients than I needed. Your pharmacist should be able to help with this as well.

Another suggestion from a practical side is to put an old towel on his lap when he pours stuff into the tube.

Let him know that he is not going through this alone. If it is possible get a laptop to him so he can communicate with others on the forum himself. It must be terribly frustrating for him to be so dependant on others.

Deb,

I was treated in the summer of 06 and was not told nor given the option of hyper rad Txs as you referred to them. I'm glad because I would have probably opted for them not realizing what I would have gone thru as I had a rough enough time the "normal" gruesome way.

Ihave a 1952 Shelby bike david. And a 1985 sears lady's free spirit tha has been ridden 3 times. LOL some nut was gonna scrap it fo gas money. I gave him a $5 for it and he left happy. Maybe someday we can go riding. LOL I have to rebuild the shelby but I do have ev erything but the seat. Yep, I'm a collector of anything old. I think they call it senility. LOL

Larrysdaughter,, I can't express how bad I feel for your Dad with all the unknowns he has going. I can understand his wanting to get it started and over with. I wish you both nothing but the best.

You can get Very High Calorie Carnation instant breakfast I know through prescription and also online. Also, I think Walgreens carries it. It kept me from losing too much weight. My jaw was partially removed and I was not allowed to even swallow water for over a month. The chocolate is the best flavor I thought.
Try one and see.
Good luck to you,
Debbie

[quote=ChristineB]

Your poor father. Its a shame he is having such a rough time already. I had my PEG and port installed the end of July, a week before my treatments started, in the OR by a surgeon. From what I remember I was very sore, I was given alot of morphine for pain. I also stayed overnight in the hospital one night. The doctor had to loosen the PEG tube because it was too tight. Once its in its really no big deal anymore. One thing you might want to pick up is antibiotic cream. After a shower, I put some around the PEG tube on my stomach, I then cover it with a gauze pad. For the feedings, I use Two-Cal, its prescription liquid feeding nutrition. You or your mom might want to check with the doctor about a prescription for the feeding cans. Mine is covered by my insurance. I have it delivered along with the gauze pads and syringes. I also have a feeding machine they gave me (also thru insurance) that I use at night. Hopefully you have a medical supply/equipment place in your area who will do all the insurance work and deliver everything to your parents home. One more important thing to tell your dad, once he has the PEG no lifting anything heavy. That includes shoveling snow. Has your father tried ensure, boost or any of the carnation drinks? That will help him to keep his stength up.
[/quote]

Thank you Christine for your personal experience. It realy helps. They have the cans, syringes, etc waiting at home ready to go. He has been trying Ensure, but says everything tastes horrible because of the radiation.

[quote=Malka] I "received" the PEG while in the hospital for mandibulectomy and ND. I am not sure at what stage of hospitalization but it was sometime after surgery. I was due to have a swallow test and possibly have it removed about a month after surgery. That would have been the first week of August. However, we live in New Orleans and that is the week that the infamous Madam Katrina decided to pay a visit to our area.
Not all my meds were available in liquid form. It would be advisable to be prepared ahead of time for this possibility. Tell your Mom to check his meds. If any will need to be crushed she should buy a pill crusher/splitter combo and test the meds. The 1st one I got did not do too well so I got another. Also, ask nutritionist in the hospital what if any vitamins he should be on. Don't take "a good multi-vitamin" as an answer. I recently discovered that the one I had been taking for years had much more of some ingredients than I needed. Your pharmacist should be able to help with this as well.

Another suggestion from a practical side is to put an old towel on his lap when he pours stuff into the tube.

Let him know that he is not going through this alone. If it is possible get a laptop to him so he can communicate with others on the forum himself. It must be terribly frustrating for him to be so dependant on others. [/quote]

Thank you for the tips, they will definetly come in handy! As for getting him on the computer, I am lucky if he reads what I send him. So at least by me coming here, I can gain knowledge and pass it along to both Mom and Dad. That's all I can do at this point.

[quote=EzJim] Larrysdaughter,, I can't express how bad I feel for your Dad with all the unknowns he has going. I can understand his wanting to get it started and over with. I wish you both nothing but the best. [/quote]

Thanks, Jim. And as always, my thoughts and prayers are with you!!!

[quote=davidcpa]I did not have the Peg but my RO also was pretty adamant about not interrupting the rad schedule. I remember I was admitted to the hospital due to everything in my last week of rad and I was one sick weak puppy. They wheeled me into the rad room and nuked me anyway. I didn't miss one rad Tx my entire time and I was lucky as their IMRT machine did break down a few times, just not so it affected me. Brian knows more about this than I but I did read some articles discussing the trend towards more rad sooner in an effort to deliver the most killing juice as soon as possible. I believe studies may have indicated a better kill rate than the same rad dose over the traditional 7 weeks.

Is there just no way to get him to swallow anything on his own? [/quote]

Thanks, David. He is TRYING to get stuff down... but it is so hard. He says everything tastes horrible. Its hard for him to swallow cuz the tumor is closing in on both sides of his throat.

While it's going on it seems as if it will never end, but the best part of going through what you and your father are going through is getting it behind you. Rollercoaster ride indeed... God bless you all. These things happen so quickly, you will be surprised. My heart goes out to both you and your father. You are in my prayers. I was adamant about not getting a PEG, but wound up with one anyway, and Thank God I did. Still have it, still use it because it's the only sustenance available.