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#58389 05-29-2006 05:00 AM
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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


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#58390 05-29-2006 05:59 AM
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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.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#58391 05-29-2006 08:23 AM
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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


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#58392 05-29-2006 04:15 PM
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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?


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
#58393 05-29-2006 04:39 PM
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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.


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)
#58394 05-29-2006 04:51 PM
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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


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

:
#58395 05-30-2006 01:08 AM
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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 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)
#58396 05-30-2006 01:37 AM
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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.


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
#58397 05-30-2006 02:31 AM
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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.


Delia- Caregiver and fiancee to Charlie ,age 30,(SCC of Larnyx-Stage IV) chemotherapy and radiation- no surgery finished tx:4/7/06 SURVIVIOR!
#58398 05-30-2006 10:37 PM
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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.


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)
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