at the RO appointment today, she discovered that he has developed thrush. gave him meds for that and increased his fentynol patch to 75. im not sure if that was enough of an increase. he went from 25 to 50 last week and it didnt touch the pain...24 hours and we shall see.

at the MO today...he has been seeing him every 2 weeks thru radiation, today he said he wanted to see him every week again. is this normal??? should i be concerned?? he wants him to come in everyday for hydration too.
he told him he was going to keep the PEG in for approx 6 months after treatment and at that time as long as he put on some weight and was eating more than 70% orally--he would remove it.

only 11 more IMRT to go and 2 more chemos...the end is soooo close!!!
he is in terrible shape, feels horrible but sees that end stretch. if he could get out of bed, he would be dancing around and doing a jig!!!!!!

Maybe they are worried that he doesn't get enough nourishment into his system? They will keep a close watch on that

his blood pressure and body temp have been running low too, so they want to check his vitals each day.

i just got a pump last week so he can be nourished during the night. up until then, i know he wasnt getting enough nourishment. i would work during the day and nourish him at night. most of the time he wouldnt even get out of bed all day and it took me hours to get enough calories in him.

They can only increase Fentanyl at 25 mcg at a time. It he is taking too many breakthrough meds to compensate they will use a "titration formula" to adjust his Fentanyl dosage. Fentanyl is safe if used as directed. Be very careful about reading all of the precautions and warnings for its use. NEVER use a torn patch. It can cause a fatal overdose. Fentanyl is the most powerful synthetic narcotic known to man. It is 100X stronger than pure Heroin.

It is also important to describe his pain threahold in numbers between 1-10 with 10 being unbearable pain, to your doctors. It should be managed to a 3 or 4 worst case.

The sysmptoms you describe are relatively typical. Most of us had the same issues. My body temperature is still lower than it was pre Tx and I am 7 years post Tx. Narcotics also lower blood presuure, especially if his Fentanyl is being supplemented with Morhpine, which also acts as a vasodialator. This is why heart attack patients are given mnorphine.

Getting enough calories is always an issue - even with a PEG. Keep a log of his daily caloric intake. Make sure that he gets enough water as well since constipation is a major issue when taking Fentanyl. Staying hydrated is very important and critical to protect the kidneys from damage when getting Cisplatin.

Thrush sucks too and can cause a lot of burning throat pain. It can also be fatal if not managed quickly, if if goes systemic. I had numerous bouts with it and was on a maintenance dose of Diflucan for many months.

thanks gary.
i didnt realize fentynol was so powerful. with the 75 fentynol...he puts his pain at a 4.

i pump prune juice into his peg to help with the constipation. he wont drink alot of water, but will drink apple juice. i will pour 3 water bottles (51 oz) into his feeding back and pump that thru him. i do struggle each day to get it all in him.

he is on the diflucan as well.

9 more after today!! it will be fantastic to post tomorrow with single digits remaining!

My temp is always about 96. My vitals seem to hold theis own.

EzJim, Have you had your thyroid tested? Low body temp is a symptom of hypothyroid and running a consistent temp of just 96 is very low!

So glad you and Andy are in the single figures soon. That light at the end of the tunnel is getting bigger. Reading your posts it brings back so many memories. We got through it and so will you both.

So glad the apple juice is working. Steve couldn't stand water during treatment and the only way to get it into him was via the pump and peg. But apple juice, never a problem. Steve's blood pressure was also low during treatment but it's ok now.

Hang in there girl, it's nearly over. Only 9 more to go and then you can start to move into recovery for both of you. It will take some time, especially for Andy but eventually things will get better.

My BP has been that way since my first Abddominal Aortic Aneurysm repair. It goes with the territory . I wonder how low it will go when they do the lower half of the aneurysm the Dr was afraid to do on the lower part of it. He said he might have killed me if he had finshed the complete surgery. I gues i have a mess down there. Gotta take BP meds and watch it doesn't blow.

This is a 1 in a million shot for a reoccurnce of an aneuyrsm. I hear that too much the last few years. I wish I would get something common one time.