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#58379 05-26-2006 01:52 PM
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Hi everyone,

I took Stephen in to see the NP at Dana Farber cause he woke up gagging up 2-3 inch blood clots Never has coughed up anything but mucous that was tinged with blood...
I then saw some dark blood in his tube contents. The NP thought it was alittle worrisomebut not enough to run a scan. She figured it was some tissue that dislodged and the blood in the tube was some he had swallowed.
We then got home to find a possiblke infection at the tube site. He had also told theNP that he was having pain and tenderness in his stomach. I just took his temp. and it is 100 degrees. I had told the NP I thought it was an infection because the edges of the tube site were hard and raised , like an infection around a cut geys but she didn't think that having seen him this afternoon. I asked her to give us an antibiotic over the phone just in case and its the long weekend but she wouldnt. Now I have to bring him to the ER in the morning Does anyone know anything about the tube site infections amd what causes them.
I'm assuming the blood clots and the infection are independent of each other. Does anyone have any ideas. Are two inch blood clots out of the blue,3 weeks post tx,normal?

Help...Kerry(its just when I thought things would settle down a bit..I wasn't even hoping for good...)


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
#58380 05-26-2006 02:55 PM
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Kerry, my question to you is "Does Stephen keep a gauze pad between his tube and his skin?" That is a must according to John's surgeon. The fever indicates an infection somewhere so you are right to take him in and have someone check this out. Insist that someone very knowledgable checks him over. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#58381 05-26-2006 03:23 PM
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Ditto Amy's advice. I washed the site, then put a clean gauze square, appropriately cut, on every single morning. And yes, go back to the ER and stay until you get some attention. When I was done with treatment and ready to have some fun, I was felled as though with an axe, by a nasty infection (not from PEG site.) Do NOT let this get a foothold.

#58382 05-26-2006 04:14 PM
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What about the blood clots..Normal?


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
#58383 05-26-2006 04:21 PM
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Also, his thrush is back. I heard if theres an infection in your body sometimes the tube site gets infected because the body cant fight keeping the open wound clean while fighting off something else. Makes sense. Also, can thrush, which is at the very back of his tongue cause the gagging up blood clots?
Full of questions tonight...Thanks guys


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
#58384 05-26-2006 07:42 PM
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Hacking up blood clots, as disgusting as it seems, is fairly normal after radiation and chemo. I hacked up dead tissue for about a month post Tx. It takes a while for the sores and burns to heal. If his temperature goes up to 100.5 degrees or higher you should get him to an ER stat. If you have to go to the ER tell them immediately that he has a compromised immune system and unless they're dealing with a heart attack or something, they should expedite you through. I didn't have a PEG tube and often had elevated temperatures up to 100 degrees.

The yeast infections in the mouth (thrush) occur because a. lack of saliva and chemistry imbalance because of it and b. compromised immune system. It's unlikely that it's causing the problem you describe but thrush is dangerous in a compromised immune system and must be aggressively treated. It can be fatal if it goes systemic. I was on a maintenance dose of Diflucan for months.

Other opportunistic infections can occur as well so you must be very careful to keep the PEG site clean at all times. Don't shave with a razor, etc. Nicks and cuts can produce nasty infections. Wash your hands constantly with soap and water. The foaming (surfactant) action of the soap dislodges the bacteria and is as effective as anti-bacterial soap. Clean the skin around the PEG tube as directed by your doctor. It'll take months for the immune system to recover so you must be on your guard at all times.

We also disinfected the kitchen and bathroom as an additional precaution and I didn't do out in public for months. For disinfecting we used a 10 to 1 bleach solution as recommended by the CDC - (1 part bleach to 10 parts water)


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58385 05-28-2006 09:35 AM
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Diflucan was a regular part of my meds-diet for nearly nine months after tx. The thrush was nasty and really hard to get rid of.

I too hacked up impressive globs of bloody goop for severl weeks. Turns out it was scabs and dead tissue from the radio burns. Nasty lookin stuff, but it sure felt good to get it out of there.

Peg infections are pretty common. As you point out, the site is essentially an open wound prevented from healing completely. Mine got lots of nasty crud around it. I finally realized that much of the irritation was CAUSED by the stupid gauze pads. They would absorb the wounds healing fluids, harden and then irritate the skin. I got on a low dose of antibiotic and stayed on it for several months.

I stopped putting the gauze around the tube and was surprised at how quickly it began to heal. Its kind of messy, because the wound 'weeps' but allowing those fluids to drain away from the site really helped me. I ruined quite a few t-shirts, but my peg site was sure happier. I blasted the site with a spray disinfectant lightly, a couple of times per day, and threw away the tshirts after a few dozen washings. The disinfectant handy-wipes were always convenient too. My counsel is dump the gauze and change t-shirts often. Be strong, Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#58386 05-28-2006 02:52 PM
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Tom, I am laughing out loud [and scratching my head] as a result of your post above. John hated using the gauze pads between his skin and the peg. He went to 3 post op visits to his surgeon without one, and his Doc threw a fit! Said he absolutely HAD to keep a clean pad between his skin and the peg. Whenever John came in without one, athe Doc. would go get one and put it on him. Just goes to show-different strokes for different folks. smile Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#58387 05-28-2006 03:13 PM
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Thanks guys..
One more question - Stephen had to go off the diflucan a couple of months ago because of eleveted liver levels so the RO put him on Nystatin. Stephen could not tolerate the swish and swallow so the RO told him putting it thru the tube would work also, that it was not just topical. Then we go to our MO for a follow-up and he tells us to stop the Nystatin, we are wasting our time puttin it thru the tube - it only works topically. So I stopped and the thrush was back two days later. Not to be vulgar but,it smells like he swallowed a dead animal. Not to mention it triples his throat pain.
So the NP checked it out and said the Nystatin does work via peg tube and put him back on it. Does anyone here know what the correct answer is? It is not the first time I've seen our RO and MO give us completely different answers...a little scary.
Also while I'm here his fever goes from normal then to 99 and was at 99.9 last night and then it goes back to normal. And he sounds like he has a new cough that sounds like it is in his chest. And he said he felt it was also. Pneumonia? Shouild I call or am I jumping the gun? He's on an antibiotic for the tube site infection, would this take care of the pneumonia?
Thanks again...


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
#58388 05-28-2006 03:25 PM
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Kerry, as to the differing info from different Docs- sometimes it is like being on a rollercoaster and wanting to Yell "Get us off this thing". His temp. is something that needs to be watched carefully- maybe take it every 4 hours [but don't wake him up at night unless you have to] Our Docs have told us that 100 is the magic number to trigger concern. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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