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, 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

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.

What about the blood clots..Normal?

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

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)

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

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. Amy

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, 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

Kerry, A low grade fever can be normal after all the stuff his body has been through. I was told if it gets above 100.5 you should call someone right away, though, because of the compromised immune system from the chemo.

Tom's experience with the PEG and gauze pads is the same as mine. I keep the skin around my PEG cleaned well and let the damn thing drain as it sees fit (which means I have gotten icky stuff on several shirts but it washes out). When I did gauze pads all the time I had two problems. First, as Tom said, the stuff would stick to the guaze and kind of form this hard crust that made things worse. Second, I needed surgical tape of some sort to hold on the gauze pads and even the stuff that isn't supposed to irritate your skin started to irritate my skin (I have really sensitive skin) and I started to have raw patches where the adhesive from the tape took skin off with it.

So like Tom, I usually do not wear gauze pads (the only exception is when I am wearing a noce blouse that I don't want to get PEG drainage goop on) and just keep the site clean by washing it well and using disinfectant towlettes. Works for me (also it helps that I no longer have a compromised immune system thought my WBC is still on the very low end of normal).

Nelie

My experience with the PEG is similar to Tom and Nellie's, I didn't keep it covered with gauze. I never had an infection and kept it tucked in the waistband of my pants. It became part of me and didn't slow me down a bit.

Re the Nystatin -- the instructions with the solution Barry got at the Johns Hopkins pharmacy was to swish and swallow -- I guess they know what they're talking about (one would hope, anyway!).

Though Barry never used his PEG, he did have one and he used tape and a gauze pad to keep it folded up and covered as we had this horror of one of our dogs (who are just the right height) jumping up on him, catching it with their paws and and pulling it out . Of course that never happened but it did just "fall out" one day in the last week of treatment. (The little balloon deflated, a bad batch of tubes...)

The MO nurse gave us some pads, which looked like alcohol swabs (come in a little packet) but which are made by Smith & Nephew and are used by people who have ostomy apparatuses. You swab the area where the tape is to go and it helps it stick but also -- more importantly -- allows it to be removed with far less irritation. I also changed the area to be taped every day or so, and the gauze pad every day.

Gail

ACTUALLY STEPHENS TUBE SITE JUST HAD AN ABCESS BUMP NEXT TO IT. NEVER ANY GOO COMING OUT THAT WOULD REQUIRE GAUZE. I CLEAN AROUND HUS TUBE SITE WITH A Q TIP AND HYDROGEN PEROXIDE EVERY SO OFTEN. HIS ENT SAID GAUZE WASN'T NECESSARY. LET THE AIR GET TO IT.
OBVIOUSLY SWISH AND SWALLOW MUST MEAN THAT THE SWISH PART HELPS AND THE SWALLOW OR IT WOULD BE A SWISH AND SPIT. SO HIND SIGHT MY RO MUST BE RIGHT, JUST INGESTING IT MUST DO SOMETHING, ALTHOUGH SWISHING AND SWALLOWIMG WOULD GIVE OPTIMAL RESULTS.
ON A DIFFERENT NOTE, HAS ANYONE HAD AN ABNORMAL EKG POST TX. COULD THIS BE DUE TO RADIATION? THEY DIDN'T FIND FLUID BUT SAID IT WAS NOT NORMAL FOR A 47 YEAR OLD MAN... WE WERE IN THE ER TODAY AND THEY TOLD US THAT STEPHENS EKG DIDNT LOOK NORMAL...ANYONE ANYTHING ABOUT THIS?

Diflucan (or any of the ...azole family of drugs)is more effective than Nystatin. I hold the record at UCSFCCC for how much and how long I took Diflucan. I constantly battled thrush for several months anyway. I did some research and discovered that some AIDS patients get as much as 800 mg of Diflucan a day! The recommended "maintenance" dose for cancer patients is 50 mg/day I was taking 200mg/day. In comparison, when women have a yeast infection, they will typically be given a single 100 mg tablet and it's over with.

Diflucan, if taken over a long time and high dose rate, can suppress the white cell count.

They tried me on the Nystatin orange flavored swish & spit and that stuff was horrible. It gave me great pleasure pouring that crap down the toilet when the thrush days were over with.

I don't remember ever having an EKG ever during the whole treatment process. They would just check BP and temp (and they still do).

There certainly could be contraindications and interactions with different meds and other physiological issues stemming from body chemistry changes. I would get a consult with your MO.

Kery, that reminds me of the day we went to our "family Doc" to get him to check out a low grade fever John had. This was about a month post rad. treatments and I asked if he should do some blookwork. Dr. J's answer was that any tests would have screwed up results for months after treatment. It was a "damned if you do and damned if you don't" kind of answer. I've found that I just have to keep watching John, asking questions about how he feels and go with my gut instinct about getting him to a Doctor. Not a fun position to be in, but it comes with the territory. It is really tough when you are dealing with someone who simply does NOT want to see another Doctor and just wants to be left alone. I know you feel lke you are walking a very shaky tightrope. Hang in there. Amy

Amy,
I am shocked at your doctors response. Mine were adamant about bloodwork done pre, during and post Tx and I still have to get full bloodwork done 3 1/2 years later every 6 months. They did trend analysis on the numbers. I have hep C also so maybe that makes a difference. In addition to the regular stuff, CBC, etc., they were always checking ALT and STOG levels. I also get a semiannual TSH test.

I forgot to mention that they did listen to my heart with a stethoscope every visit (the MO anyway) so maybe the ER docs heard something that made them do an EKG becuase that wouldn't be a standard ER test. Why was he in the ER?

This is the hardest time, post Tx, he will have a lot of problems with coughing, choking and hacking up stuff. Pnuemonia is a very real possibility (especially since the immune system is trashed and also because it is easy to aspirate something into the lungs) and that's why you need to monitor temperature very closely. I took mine in the morning and at night every day.

Gary.

I took him to the ER because he has had an up and down fever for a week now with a new sounding chesty cough, sudden vomiting and extreme fatigue. I wanted a chest xray done because he had aspiration pneumonia once before. The chest xray was clear . They just put him on the EKG machine when they took him in. I dont know why, they had never done it before. They found no fluid but said without a baseline EKG they couldn't compare it to anything. He said some radiation damage can occur(stephens field was quit low treating nodes with XRT) They sent us home with no answerrs.
My biggest concern is still the fact that 3 weeks post TX Stephen sleeps all day all night. I cant force him up. He has to want to. He also talks to NO_ONE unless he has to answer questions or ask me for pain meds. He still does nothing for himself. I give him all his meds via peg four times a day and run the feeding pump and monitor his nutrition and give him hydration. Is this normal? Should he be doing for himself a little at this point? The fact that he can't even get out of bed makes me think he wouldn't be capable of it. He is on an antidepressant also.

Hi Kerry,
I can understand all of your concerns and I will let you know that you are definatley not alone.
Charlies PEG tube always has a small amount of red stuff- the medical oncologist said that this was gases getting out of his stomach. So now I just tell Charlie that he is farting thru his stomach.
Charlie is almost 2 months post tx and he still sleeps the majority of the day. When he was 3 weeks post- he made a fort in the bedroom and didnt get up for days (not even to shower- which is so unlike him- he tried to shower everyday during treatment). The RO said that he just needed time to heal and to push him in small ways- to get the paper, to brush his teeth, to fix a small meal by himself, but this was a normal part of healing. "I took your Charlie to Hell and now he needs to find his way home" those were his words. He also had a fever from the middle of his tx to even now (he will run int the hight 99's. When his fever reached over 100, the medical oncologist ordered a chest x-ray and blood work immediatly- all of which were clear, but the doctor still put him on antibiotics 3 times a day to ensure any infection would be healed- are they giving anything to Stephen?
I also do everything for Charlie, as he doesnt even know the name of one of his meds (I tease him about this), but he has started to flush himself and take out the Kangaroo pump if I am still asleep. I am a little fearful of the days where independance is his own- I will need to go from caretaker, back to just "almost wife" and hope that I can give him back his independance without trying to baby him. But I also dont have children and at 26, this was my first try at taking care of another person whom I love more that myself.
I know Charlie cries alot, because he is scared and for the first time in his life he feels what love is soposto feel like.
Sleeping may be part of coping with this fear. It will get better, with time and love. What do the doctors say about this?
Has he been eating at all thru the mouth? Charlie was eating vanilla pudding, but at 3 weeks post- the RO said this was very uncommon. He got a touch of mucutious back- I think I was feeding him too much because he woke up nausous an throwing up every day for the past few weeks. So I slowed down the Kangaroo pump yesterday and he seems ok today.
Hang in there! And I will pray that things will soon have a sunny side for you and Stephen.

Kerry,
if I understand this, they put him on a patient monitor? This a little different from a EKG. The things that you describe were daily events for me. It can be very frightening to watch this and to answer your question, yes it is normal. I didn't talk to anyone at that phase -I had no voice and it hurt too much. I had this thick stringly mucous that was like bubble gum. My temperature was always running around 99-100 degrees, which is typical as well. Once again, if it goes over 100.5 then you need to call the doctor. Another tip for you, if he needs hydration, try to arrange to have it done in infusion (at the chemo center). It's much faster than going to the ER. And no, he is not capable of taking care of himself right now, but in few weeks, he may start to turn around - be patient.