Pete,
I have a friend with BOT and he just finished 35 IMRT a month ago and 6 Carbo treatments with 8 more to go. He too has an enlarged prostate and takes Flomax. He went to the urologist for problems he was experiencing. His PSA was 5.0. They're thinking prostatis and put him on an antibiotic for 25 days. Did you have this problem during treatment?

Andie

[quote=Andie]Pete,
I have a friend with BOT and he just finished 35 IMRT a month ago and 6 Carbo treatments with 8 more to go. He too has an enlarged prostate and takes Flomax. He went to the urologist for problems he was experiencing. His PSA was 5.0. They're thinking prostatis and put him on an antibiotic for 25 days. Did you have this problem during treatment?

Andie [/quote]

Over the last couple of years I have had PSA readings that were high and others that were borderline -- I was putting off that problem before I got some other things out of the way and of course the new cancer went to the head of the list. I have noticed a correlation between high readings and the presence of the tongue cancer, with the readings dropping back to borderline when the first cancer was removed. Unlikely from my sample population of one that it is meaningful, but we shall see.

As part of my personal records, I have charted my PSAs and the deviations from the gradual age line is clear for both cancer occurrences (And here's hoping I don't have a third point to chart!!.

Problem in the hospital is that when one gets to the main floor, the Urine Police want to see that yellow water flow -- This time around, they had some kind of ultra-sound device where they could also measure how much was actually in my bladder and that backed up my story -- I was processing it all properly until it came time to fill the urinal -- After a few days, it was easier to get more flow.

I'm going to talk this over with the urologist in near future.

Went in today for the Barium swallowing study -- It looks good except I seem to have degraded the cough reflex that makes one cough if any food or liquid makes it down the airway as far as the vocal cords -- We could see that on the test (they are doing some kind of X-ray video of the process of me trying to swallow some nasty barium concoctions, with the thick ones being really hard move around).

I can now start taking small sips of drinks and liquid foods (broth, etc), but need to get in habit of coughing every couple of swallows and when finished until (if?) reflex is back. Healing is coming along nicely, and the lymphedema massage is working to reduce the fluid swelling.

I remain pessimistic about loosening up the neck scar tissue, however. That area is solid, between this recent surgery and the previous radiation, and is pulling my head further forward, although my neck-turning abilities have improved greatly.

I had a PM asking some pertinent questions, so I thought I'd also provide the answers here.

What I did for sleeping was put a thick cushion and then my pillows between my head-shoulders and the wall, then another pillow under my knees, so I slept mostly in an upright position which helped drain stuf. I've now graduated to mostly sleeping on my side as usual, with a pillow between my knees to help back problems.

Dealing with the trach, just a hole, but as long as it was open, it was difficult to talk. The best bandage was what the nurse practitioner made, rolling up a square of gauze and then pressure-taping it down -- If I remembered to press my finger on it, I could talk -- Had to change that one several times a day until the stoma (hole) started to close.

Nurse practitioner also gave me a couple of Aqua-Guards, a clear plastic with tape around the edges to cover the stoma while taking shower -- Turns out one only needs to take in several spoonsful of water to drown! Showering was difficult because there are bandages on the trach stoma, PEG stoma, and wrist to deal with -- Least trouble was the 'cheeze grater' gizmo on my thigh. The in-hospital and follow-on care from the Univ of Washington Medical Center (Otolarengology Group) has been super.

Also, talk to your follow-on crew (in my case a very knowledgeable nurse practitioner) about a food pump to go with the PEG if your husband has difficulty maintaining the higher rates of can-draining.

With my previous radiation-PEG, the tube was large enough to accommodate gravity feeding and my gut could handle it -- Now the tube is smaller and must be pumped, about four-five syringe loads per can and that turned out to be too fast.

I acquired a used Kangaroo pump and some feeder bags from EBay and Craig's list , but was still having problems with the food (I use the term loosely, of course!) going in and passing through me rather rapidly, depleteing me of water and minerals in the process. I consulted with the dietician at the food supply house (Option Care, a recent acquisition of Walgreens, and tied to Nestle-Carnation) and she recommended that I set the delivery on the pump to 100 ml/hr -- I had been using 300 ml/hr, which was still much slower than my previous PEG's gravity feed or the current PEG in manual mode.

In retrospect, I should have just had my follow-on crew arrange for a pump, but I was kind of curious about it all and I'll put it in my taxes for this year, so I'll at least recover some of the cost -- I even got a roll-around stand for the pump and bags.

Time for math -- A can of food is 250 ml, so manual or gravity doing a can in 15 minutes is roughly 1,000 ml/hr. Problem is that I should be getting 2,000 or more calories per day, and at about 300 cal/250ml can, that means I need to transfer 1,667 ml of food -- At 100 ml/hr, that's almost ***17 hours***.

David has been touting Nestle-Carnation VHC for some time now because it packs about 560? cal/can, which would cut down the PEG time considerably (2000 cal/560 ca is only four cans). Dietician sadly reported that VHC is classed as a drinkable OTC and not Medicare-reimbursable.

However, the dietician came up with another Nestle calorically dense product called Nutren 2.0, which has 500 cal/250ml can; three cans per day exceeds the RDI for the 20 key vitamins. Four x 250 ml/can /100 ml/hour is now only ten hours, a great improvement over 17! Also, the Nutren 2.0 is drinkable (some of the others intended purely for PEG, like Novartis and Osmolite, aren't exactly tasty.

The dietician told me that extra food is not returnable, being classed as a pharmecutical -- Any thing left over can be donated, like to a Food Bank.

http://www.nestle.ca/en/products/brands/Nutren/2.0.htm

I've also been gradually increasing my delivery rate and am up to 150 ml/hr, so that lowers my PEG time to less than seven hours. In fact, as I type this, I am ingesting a can of Nutren 2.0, plus I can even sleep with the pump going, although it does beep when the bag is empty.

Some folks may be leery of using a used pump, but even the medical supply places are likely furnish a used one -- The pumping is done be external pressure on one of the bag tubes, so the food never enters the pump -- It doesn't get dirty and doesn't need to be cleaned. The bag, with tubes, connectors and cut-off valve are called a 'pump set' and should be changed daily -- New sets come with the food from the medical supply house.

Pete:

The feeding pump sure is a life saver. There are many brands of formula out there. I use 2 cal by Ross which is 475 calories per can. That is available thru prescription. If you have problems with upset stomach, try adding water to your formula. It can make a huge difference, can also add some benefiber to it.
Best of luck with your recovery.

Pete,

Since there are people in my H & N cancer program that do not get their 'food' paid for by insurance, many patients bring their leftover cans and the nurses create their own food bank. That's what I plan on doing with mine when the time comes.

- Margaret

Also, your posts are excellent and informative. Thank you!