One of my life's objectives was to not start a New Topic on this particular sub-forum of the OCF Forums, but like my other objective of never meeting an oncologist in his/her professional capacity, I have now officially failed at both!

I had a punch biopsy done under the tip of my tongue because it was getting very sensitive and swollen (my teeth were starting to leave grooves on tongue front), with some clear speech problems.

Came back with 'poorly differentiated SCC'.

I had a tumor removed from under right side of tongue in Fall 2005, after 15 years of white spots and biopsies with dysplasia and keratosis. Completed my XRT series in Jan 2006, so I'm two years, five months past that. Had a biopsy a year ago and only had mild dysplasia.

Had MRI two days ago and will have CT/PET done on Monday. Tuesday I will meet with Dr Hakenslash at UnivWash Cancer Center and Wednesday he will take case to Tumor Board (Combined UW with Fred Hutchinson CC in Seattle).

On Wednesday, I am headed to the dentist for a possible root canal, having just had one three weeks ago. For sure this is going to be a Schedule A tax year!

My ENT said that most likely I will have tip and underside of tongue removed and a 'free flap' procedure done using tissue from my forearm.

http://www.ncbi.nlm.nih.gov/pubmed/11735815

I am practicing speaking with tongue flat and using lips to enunciate and it works so I'll be keeping my cell phone <g>, although a 'G' is hard to do that way.

I am really building up quite a CD collection of CT and PET scans and now I have an MRI scan. Fascinating stuf! Wish I knew what I was looking at...

The good news is that I believe I've had my Lifetime Limit of radiation (XRT), so I won't have to do that again!

BTW, I highly recommend punch biopsies over the Cut 'N Stitch kind -- The procedure pain was a little higher, but it faded fast and healed quickly -- No irritating stitches or gaps in flesh to deal with. Two Thumbs Up!

Pete,

If another one of your life's goals was to face adversity with humor and good spirit, I'd have to say you met that one with high honors. Nobody likes reruns, so let's hope the treatment plan knocks this stuff out permanently for you.

Pete,

Sorry to rain on your parade but some here have said their RO's are finding ways to radiate us a second time. You might want to bring that topic up. If it's necessary, it may very well be useful.

They can also do cut and snip biopsies which are not sutured. It depends on the tumor type and location.

Your opening line was sad and funny at the same time!

David, I read the re-radiation threads before posting and felt that with XRT it was unlikely that I would have much margin left unless I was further along than this, metastasis-wise. I will certainly bring it up in consultation this week.

Suess and Gary, as one of my former colleagues as a Corporate Cubicle Convict used to say, "We don't get paid much, but we sure get a got of laughs!". The fun is where you find it and we do have choices -- It's much easier to laugh at it when it's you yerownself and not someone else.

Putting some background material together for Dr Hakenslash, I counted ten biopsies since 1991 on tongue lesions and tumors. Nine were sutured and one was punch; I'd have preferred punch on all <grinz>.

Pete, I can't say it's nice to see you post this way again. You have me wondering if maybe a punch biospsy isn't the same as a needle biopsy. I have had those as well as the cut and sew kind. LOL I prefer the needle. I want to wish you good luck and hope for the best for you.

The punch is like a needle, only bigger. It's essentially a tube with one end sharpened. Doc twirls it on tissue to cut it in, removes tool, grabs tissue cylinder with forceps, pulls and cuts. Sounds worse than it is -- Local anesthesia, of course.

Here's a photo of a set of various sizes from 1.5 to 8mm (Hmm, that one's a bullet hole of 31 Caliber!), mine was 3mm:

http://www.claflinequip.com/ProductDetail/zoom.asp?img=CESS-5911-00.jpg

Also, I think the needles come in much longer lengths, like for kidney biopsy.

There were many moments between my diagnosis and my surgery where I asked for a hole punch to do my own removal, lol. Somehow I resisted (and the folks at work hid all the hole punches) and let the doctor do it. I'm not sure what type of biopsy I had, my original ENT wasn't very informative, but he removed 4 plugs of my tongue and there was no needle or stitches involved. I'm thinking it might of been the punch type from what you describe. I'm with you..he numbed me and there was no pain to speak of...it's about the only thing about him that was right.

One thing I learned when Fulltiming in an RV, not really knowing where I would next see a Doc, is to keep (and carry) copies of all my lab work, biopsies and now scans (loaded into computer and on disk). Only thing I don't have is a specification of exactly what XRT treatment I had -- I need to go back and get that one!

I put all my lab work on two sheets, starting about 17 years ago, so I can hand a copy to any Doc and he/she has it all!

Thanks Pete, now I know the difference. I think i'll go for the 22 caliber size. J/K

Just got back from conference with Dr Haakenslash, accompanied by friend's wife to be a second set of ears, take notes and also ask questions, which she did excellently.

Besides impressive credentials, the Doc has an excellent manner and thoroughly explained his recommended procedures which he will present to tumor board tomorrow.

Good news to me is the scans indicate I have cancer (Hmm, having cancer is good news? Yes, sorta...) only in tip of tongue (what's left of it...) in one-half of the forward two-thirds of my tongue (That 2/3 is aka the 'mobile' tongue) with no spread to lymph system or jaw.

I asked about possibility of more radiation and he said no; all it would do in my case is leave me with a shriveled, useless, tongue and probably not eradicate the cancer. He sees surgery as only option for me.

Plan is to remove that whole area, leaving the nerve center and the muscle, create a tongue bulk to aid in swallowing and talking and remove the lymph nodes under my jaw (not needed as such and are 'tumor cell repositories').

Then he will take a portion of skin and tissue from my left (non-dominant) wrist, along with blood vessels up my forearm a bit. This will all be sutured to the now-missing area of my tongue, with the blood vessels connected to the missing lymph node areas by microsurgery (eight stitches per 2mm vessel; total procedure will involve about 100 stitches).

Finally, he will take tissue from outside area of thigh to replace skin harvested from wrist (Robbing Peter to pay Peter...).

The procedure, which he does two to three times weekly, will take eight to ten hours, followed by a day in ICU, and then six to eight more days in hospital, with some speech therapy and swallowing therapy at some point. Nasal gastric tube for feeding, plus wrist/hand in splint for a week.

In tough cases with a lot of swelling, a PEG might be required, plus a tracheotomy, but neither is likely in my case because the surgery is to the front.

Surgery is scheduled for two weeks from today. That's it as I remember it so far.

On Edit: Since there is hair on that part of my wrist, it will survive the grafting. Friend's wife and I simultaneously asked about having to shave tongue! Doc pointed to electrolysis machine and said he will later use that.

Hang tough Pete. I'm sure it will be tough but I'm sure you will get through this. I firmly believe that for some people being empowered with knowledge like this helps us through the battle and it sounds like you are one that needs to know as much as possible.

Wow, long surgery but it sounds like you have a good doctor who does it often enough that you're in very good hands. I agree that for most people it helps to know excatly what will happen in detail ahead of time and I have to say that with every surgery I have had (and between the oral cancer, breast cancer, and esophageal strictures there have been about 8 of them done by 4 different surgeons in the past 3.5 years) the surgeons have been really good about taking time to go over exactly what they will do.

Try to put this out of your mind in the time you have ebfore the surgery and spend some time relaxing with loved ones if you can. At least that's what I think I would try to do. Of course, if you can't put it out of your mind, you can come here and vent, ask questions, etc.

Nelie

Hi Pete,

My husband had surgery at UW in April 2007 for tonsillar/base of tongue SCC with the same forearm reconstruction you will be having. It was certainly a very long day for him, and the eight days in the hospital seemed to last forever. But now 13 months out from surgery you really would never know that they split his chin in half and carved out huge portions of his mouth, as well as doing a left neck dissection. The scars have healed beautifully. If you are interested, you can check out the blog I kept during his hospital stay, as it has more details and may help you get a little sense of how things may go for you (realizing, of course, that everyone's course is unique). www.wickedsorethroat.blogspot.com
Like most blogs, it has the newest entries at the top, so it is best to check the archives for the earliest entries from March and read it from the bottom up so you get the info chronologically.

You seem to have a wonderful upbeat attitude, and that is sure to help you through the times ahead. If you have any specific questions you think I may be able to answer, please feel free to send me a PM.

Good luck with it all.
-Tricia

One more thing - yes, my husband still has wrist hair growing in his mouth. It makes for a bizarre party trick.

Tricia, I have two questions.

BTW, Dr Haakenslash is actually Dr F; for some reason I don't like to use real names (And Dr H is better than calling him Dr Fubar) My ex-wife (an RN) didn't get it at first but enjoyed the name when she did; I borrowed it from a guy on another group.

I forgot to ask if the would have a biopsy done while-we-wait to be sure before moving on with the detailed procedures. I guess the assumption is that enough stuf is being taken out that they are sure the will get it all (and the MR/CT/PET scans support that).

I live alone (on Bainbridge), and as a typical guy, I prefer to mend in peace rather than having people in and out -- Considering that I likely won't have a chin split or throat-cutting, and all the work will be at front, so less swelling in rear, likely I won't need a tracheotomy, can I expect to care for myself after discharge and being taken home? Lots of folks are poised to take care of me, but I know from previous experiences that I am more comfortable hiding under the bed or something like that.

David, our Doc also worked at the Moffitt.

Tricia,

I could have gone a long time before I read about the wrist hair thing but as they say, thanks for sharing...LOL

Pete,

All the best next week.

Rob J.

Pete,

What was your Moffitt docs name?

David, it's Dr Neal Futran, but I didn't see him at Moffitt, he just mentioned that he had worked there. Don't know when, and haven't seen it in the bios I read, but he told me that.

http://uwnews.org/uweek/uweekarticle.asp?articleID=42071

OK, I just thought I would have run into him.

He's been out here on the Left Coast for a while so he was probably at Moffitt before the time you started meeting surgeons, oncologists and the Phaser Folks...

On top of having problems with me, I am also having problems with computer.

Have made it through the various recycling procedures and recuperating at home after 13 days in hospital. Needed to have tracheotomy, so that hole is still open and the area is tender -- We want it to close, so I can't just stick a cork in it. Also another PEG tube so they wouldn't be sending me home with naso-gastric tube. Feels strange to have PEG feel like Old Home Week!

Have followup with doc's office tomorrow; tongue is still swollen in lower jaw and blocking throat quite effectively, so PEG will be with me for a while. Wrist looks a small shark had a go at it but is healing quite nicely, along with thigh graft harvest site and lymph gland vascular splices -- Looks like I had my throat slit before being tossed overboard to the sharks!

Daughter leaving tomorrow and son got here today, but I am handling all the cleanup, dressing changes, etc., by my self so they are just backup and good company.

Pete:

Hope you heal quickly and this can be a distant memory soon.

Christine

I like your descriptions Pete. You sure have a good way of stating things. Luv that attitude. You ghad me smiling as I read the post. Have great day and enjoy your sen when he gets there. Jim

Hi Pete,
Sounds like things are progressing well for you post-op. I'm glad to know you have had your daughter and now son there to keep you company.

Most of all I'm glad to know you are out of the hospital and now it's just a matter of time as healing takes place! Too bad you ended up with the trach after all, but I'm happy to know you didn't need to go home with it. My husband Mike enjoyed thinking up adventurous stories to explain his many scars, and it sounds like your shark tale will do the trick.

I hope you are having a chance to enjoy our recent beautiful weather as you get back on your feet (you know how important it is to walk as much as you can). I was on the Seattle ferry yesterday and it was a magnificent trip with sailboats in the background, the sun making the water really glisten, and Mt. Baker and Mt. Rainier both looming majestically - a perfect Pacific Northwest day. Take care and please keep us posted on your progress.

-Tricia

mom calls the scar on her leg from where the docs took the bone to re-build her jaw "the sharj bite." She has actually convinced quite a few people who didn't know the details of her disease that it was a hammerhead.

Slight digression to a sea story: In a former life, I was on a trip to the Florida Keys with a bunch of guys, boats and coolers of beer.

Drifting along behind my drifting Boston Whaler 16' Montauk, I spotted a couple of small (4') nurse sharks dozing under a coral head, so I called to the guy currently resting on the deck to hop in to see them. He replies that he's now nice and comfortable and would I be so kind as to bring one up so he could see it. Sure, sez I, but the first one slithered away and I told him that -- "So get the other one, sez he" -- OK, sez I and next thing he knows, he's sharing the boat with a shark flopping around on the deck, flashing its teeth.

He starts to hurriedly jump the railing and I hollered "Don't come in the water -- The first one is still here and it's P***ED!! The look on his face as he contemplated which way to move was priceless!!

The swelling of my new "made from recycled materials" tongue is not expected to go down for four-six weeks, so I received a second PEG tube (In-hospital feeding was with pumps and a nasogastric tube, which was nowhere near as uncomfortable as I had been led to believe).

Quite different from my first PEG -- The new one was not installed using an endoscopic tool, but with local anesthetic and X-ray -- The new one is much smaller in diameter (inside the body) than the old one was, which means I have to use the plunger on the syringe to force each syringe-ful of "food" through the PEG -- With the old one, I could just sit upright in front of TV or window and let gravity do the work.

My energy levels are going up and down, so I'll tackle this by pieces. It's strange to be writing for a more experienced set of readers on this forum than the first-time-around folks in the other areas here.

Got to UW Med Center early in morning and they got me ready. Some of my worst surgery recollections are being parked on a gurney in a cold hallway, partially sedated and slowly freezing -- Surprise! They've decided that warm patients do better than frost-bitten ones, so I get this pneumatic blanket inflated by heated air -- That's progress!!

When I wake up, if it can be called that, it is evening and it's been a long day for the Docs, eight to ten hours.

The recovery rooms are dimly lit with both lighting and with the spill of numbers of computer monitors for each patient, with various and sundry alarm noises as they come on and are either ignored or dealt with, depending on the severity. There's got to be a better way to do that -- The alarms become background noise to the staff and an incredible annoyance to those of us trapped in the beds -- I am very strongly reminded of some of the scenes from Apocalypse Now -- Now I'll have to re-read Heart of Darkness.

Tubes hanging out all over me, NG Tube for feeding, which seems to be jammed -- Doc is called back in and readjusts it after checking X-ray -- They don't want this one to be accidentally pulled out, so there are three sutures through my septum to secure it, so now I am tensed whenever anyone gets near it because a slight pull evokes sharp feelings!! Still being a bit under the anesthetic weather, I am now confusing the sutures with the traditional burial at sea ritual of taking the last stitch through the canvas and septum in case the poor dead sailor isn't quite dead yet -- I keep checking that I am wrapped in blankets, not canvas.

Apparently, they had to do the tracheotomy because there are is a tube connected below my Adam's Apple and Darth Vader noises are coming from there.

Drains are attached to the incisions made to remove the lymph nodes, plus another drain from under the massive splint and bandages on my wrist. These all have mild suction on them to increase drainage and folks come in to examine the results and log them.

My mouth is full with this 'new' tongue and my lower teeth look like deck cleats at a busy marina with all sorts of suture lines tied off.

The final tube is my urinal catheter, which apparently has a small balloon on the end so draining my bladder is automatic.

The skin harvest site on my thigh, where they took skin to cover the forearm harvest, has a metallic patch over it (which turns out to have been stapled in place). At some point, when they were moving me between recovery and ICU, someone tried to yank the sheet straight but it was tangled in the patch -- Hard to communicate with trach stuf in place, but apparently I was successful, using a whole lot of body language and Darth Vader noises!

Pete:

Your post really made me think. You described in such detail how it feels to be a patient. Im wishing you the fastest recovery possible.

Christine

The skin graft patch they used on my thigh is interesting -- It's metallic on top, kind of a cheese-grater with super fine holes in it, covering several layers of dressings. At the same time as they removed the metal staples from from the incision where they stripped out a vein or two for the radial forearm free flap, they also removed the staples for the patch. After that, as the edges dried and broke loose from the site below, I was instructed to just snap or cut them off -- It's all gone now, just a red patch on my thigh.

I once knew a lady who rode elephants for Ringling and her thighs were covered by tattoos except on spot about this big where she had a tattoo removed because it was about a former husband who had encouraged her to try cocaine. BTW, in about 2003, elephant-riding ladies made about $1K/wk.

Having been one of those kids who had to be constantly reminded by Mom to 'stop picking at those scabs', I see a kindred soul in the inventor of this graft patch -- Pick away to one's delight -- Especially useful when more or less tied down to hospital bed with not much to do.

I believe these cheese-grater patches have their primary use as covers for areas where skin has been burnt off.

One of the most negative factors I ran into during the surgical recovery period was the danged alarms on the hardware hooked up to me. One machine was simultaneously monitoring my O2 levels and my pulse rate -- I would just be drifting off to sleep and the alarm would go off, snapping me wide awake.

On one bad day, there was a lot of stuf going on on the floor and people would come it and holler at me to Keep Breathing. Sometimes it was just that (I would be trying to concentrate on doing something and hold my breath, which of course dropped the O2). After a lot of fussing around, it turns out that my pulse drops into bradycardia (low pulse) and if the alarm threshold isn't set low enough, the danged thing would go off just as I was dropping off. Problem was that for me, the usual 'safe' zone was waaay too high.

If I do surgery again, I will be sure to discuss this with the nurses and maybe put some kind of warning tag on myself. There really wasn't much space to be hanging tags this time around because the wrist harvest site was on one side, so the IV arrangement was on the other, with the NG tube in my nose and all the cutting on my neck. Maybe an ear tag?

Pete, that had to be nerve wracking as all get out. I never experienced anything like that but I can read your thoughts as you type. Good luck Pete and keep posting.

It has been a month since the free-flap surgery -- Amazing!

I got a lot of advice about post-op care at home by PM from trimatt -- It was good to have my adult children here to help; I did everything myself, of course, but it was nice to have backup just in case and easier to have someone drive me instead of driving myself.

Just got back from visit to the nurse practitioner -- She picked out a lot of sutures from my forearm and that is healing very well. The trach hole finally closed on the inside, so now just a band-aid there -- Need to get some cool ones.

One thing I forgot to mention about hospital stay was that they had a set of random auto-inflating cuffs on my lower legs to keep circulation going good while sitting/sleeping in the bed -- Good idea.

The whole hospital stay was made much better by the various nursing and support staff -- What a friendly bunch of folks EXCEPT when one wakes up from dozing and finds a Physical Torturist has entered the room -- I get that 'trapped in the dungeon' feeling, right down to the guy in the black mask with his box of 'tools'.

Some time back, I found plastic flies by the gross on EBay and ordered some, sharing with my son who is a special ed teacher in Chicago. Of course, I took some into the hospital and had some fun -- I would stick one up a nostril, as if it was crawling out, and when the next person came in, I would complain that I was having some very fierce itching -- Some of the reactions were priceless! One of the PT ladies even brought me a plastic spider (from the PT dungeon in the back rooms, I guess).

I still have some speech and swallowing therapy to go, but first the swelling of my tongue and throat has to go down -- Can be as long as eight weeks after the surgery. Having problem right now with several days of diarrhea -- Nurse said it might be lower bowel infection from messing around with all the anti-biotics or it might be that the food brand (Novartis at home; Jevity in hospital) and I don't get along. Have to bring specimen in for testing.

Talked to nurse practitioner about PEG tube size differences and she said that if I wanted, they could replace my current PEG with one with larger diameter tube.

I am thrilled to see that you are up and about and as eloquent as ever - tongue swelling or not. You are well on the way to full recovery and I know with a great attitude like yours that will be an easy task.

Donna

Hi Pete,
Sounds like you are doing very well!! Amazing that a month has already gone by since surgery. I'm hoping you continue to have a smooth and speedy recovery.

Best wishes,
Tricia

Gee Pete, with all you were going thru, I'm amazed at your ability to make any posts at all never mind such wonderfully descriptive ones. Did you ever think of writing a novel? I think you would be great - maybe a medical murder mystery? Hope you feel better soon.

Pete, I have been away from the board. So Sorry to hear you are walking down this road again. I have been reading here and it sounds like your doing really good. Happy to hear that.

I just wonder how many times you and I have passed each other in the hall ways...Ha ha... You take care Pete.. I will sends some best wishes your way.:)

Take care.. Diane

I thought of a couple of things that I should add, which are pertinent to any major surgery:

1. I was able to get some respite from the ICU alarm noises by asking for ear plugs -- they had them, but unfortunately they are the standard kind to block out loud noises, like construction machinery, chain saws, etc. and they let voice-range frequencies like alarm come through, albeit attenuated -- Be nice to find some 'Blocks it ALL' plugs.

2. They constantly hound you to pee enough so that they know your renal system is functioning properly -- Problem is that I have an enlarged prostate so peeing is a problem -- I felt like I should have brought in an excuse note from my prostate doc -- One more item to go on my ear tag next time I have surgery.

I am now taking a series of sessions with a physical therapist for Lymphedema massage to reduce the swelling in my neck, loosen my neck and loosen the scar tissue from the throat-slicing -- I could have used this after the radiation.

Have appointment in couple of weeks to take barium swallowing test -- Still on PEG, but occasionally taking reflexive swallow of water and one med that I don't want to run through the pill crusher.

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!