| Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Pete
I understand the stressed part. My swelling in the neck was going down pretty well until about 3 weeks ago. It seems that if I do anything - housecleaning or the trip to the dentist yesterday and having to hold my jaws open so long - it swells again and gets very sore. Today has been particularly uncomfortable at times.
I wonder if some of the swelling is permanent.
Hope that the therapy keeps helping your leg.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | The PMV speaking valve looks like something I should look in to!
Thanks!
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | pete It is really a fascinating device and it's origin was an engineer who has to use a ventilator for life and was tired of not being able to speak. I was amazed on the difference it made with speech being insantly improved. It goes on with a simple twist and comes off for sleeping. they only last for two months. The opening shot of those super cute babies on the link in my prior post and the one in the middle with the bright blue valve really tickled my fancy. Hope you didn:t mind that i renamed the link in your honor. Plus the caption: "just one of the boys " with its implied message that despite the problems caused by cancer, we can overcome them resonated with me also. The hospital qve me one but i only used it for three days before they pulled the trach. On drawback is that mucous that used to ooze out of the trach tube now goes to your mouth but if you can spit, it;s better than having to suction the trach hole, I realy hope it works for you
Last edited by Charm2017; 03-05-2009 03:36 AM. Reason: spelling
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Went to see nurse this week and she's happy with progress in my mouth; did a little silver nitrate work with some loose parts of the failed flap to smooth it all out, but generally granulation is covering it all.
Also did some SN work around my PEG where I'm having granulation and wants me to see PEG installer to have the rest removed.
Will see Dr Haakenslash in a few weeks and expect he will do SN and maybe scissors work to remove some of the granulation that's right up against my teeth. Still brushing with green foam on stick because toothbrush causes a lot of bleeding.
Setting up appointments with speech pathologist at Virginia Mason in Seattle -- I have choices of drive or walk-on with ferry and then drive,walk or take bus from there. Unfortunately no SP here on the island.
Here are the latest weights, in ounces, for the Quack Pack:
____________2/6/09__3/18/09 RatPhooey_____9.2_____11.0 RatHuey______11.2_____13.1 RatDewey_____14.6_____15.4
They are not bonding to me yet, the way an "only" rat would, but that's OK because they have each other for company and aren't lonely when I'm not there. They do want me to interact with them, coming to the corner of their cage closest to me when I'm in the room. I've started playing "Get the Rat!" with them, where you chase them around the cage with your fingers, tickling their bellies and tapping them on the rear ends to make them scoot -- They like it and quickly come back for more.
But when I pick them up and put them on my shoulder, all they do is try to get down and back to cage, rather than ride like a Pasha on an elephant's back.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Went for a four-month post-surgery checkup CT scan on Friday -- One of the Cutthroat residents looked at it and pronounced it to look good, except my airway is still very tight (but it feels looser than before) -- Again, I asked for, and received, a copy of the scan for my referring Doc, so they didn't charge me for it. After a short consult with Dr Haakenslash, the Cutthroat did some more silver nitrate cauterizing in my mouth to remove the excess granulation, esp next to my teeth -- That stuf tastes nasty, and even though he cleaned most of it out, I still had to do some more removal with tweezers at home to get the dead stuf out -- I should have borrowed the long, sure-grip tweezers and snips for the home work (If we do it again, I will) -- Next visit in a month. Of course all this work bled a bit and I must be swallowing some of it because the slime in my airway was tinged with it, but much less so today -- All this activity is producing a lot more slime than usual, so I'm doing a lot of 'mopping' around my trach with paper towel bits. Had some tissue granulation cleaned up last week around my PEG and the Doc mentioned that if it became a long-term problem, we could try a Low Profile PEG -- Based on another posting, I found the Mic-Key (Mickey Mouse??) low-profile PEG, which comes in various sizes up to 24FR!! Costs more than my current PEG likely did, but might be worth a try! http://www.totalhomemedical.com/kiclbalowprg.html Here's a YouTube of a Mic-Key being changed and you can also see the tube that comes with it to attach for feeding (Christine, note the shut-off clamp that comes with the attachment; also note that Anthony takes his food at 300 ml/hr on the 'Roo pump). http://www.youtube.com/watch?v=Mn4e...next=1&playnext_from=PL&index=25
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Pete
Happy to hear good news on your check up and the PEG info is interesting. 300 ml/hr is a lot compared to my 166 ml/hr. One step at a time though.
Those weight gains are impressive and I am encouraged. I managed to gain a pound this week. But I can take dairy again so things will get better soon. How are my friends in the pack doing?? Maybe you have a link to the games??
Patty
Last edited by Good1; 04-26-2009 06:17 PM.
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I just weighed the Quack Pack again and here are the results: ____________2/6/09__3/18/09_4/26/09 RatPhooey_____9.2_____11.0___11.7 RatHuey______11.2_____13.1___14.7 RatDewey_____14.6_____15.4___16.6 Dewey's over the one-pound mark! Lately, Huey and Dewey have been diving up my sleeves as soon as I put my hands in the top of the cage, then squirming up and down until they get tired of it -- Luckily, they are in the bottom of the sleeves, because their little claws are *very* sharp. Also, they are all letting me pick them up much more easily now. I've tried them on my Nutren 2.0 and they seem to like it... But that's the stuf that's drinkable, esp with some NesQuik added to it. When my daughter was here, we bought a nice loaf of unsliced bread at Wally and I cut a hole in one end of it -- Over a period of time, they managed to eat it until it was a shell -- She got a photo of Phooey poking his head out the end -- I tried to post that one here but was unsuccessful, so maybe this link will work: http://www.flickr.com/photos/77835134@N00/3353420037/ Here's one of all three; Huey is at top, then Phooey and Dewey at bottom -- As you can see, they like to sleep in a pile: http://www.flickr.com/photos/77835134@N00/3353419939/in/photostream/
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Pete,
How big do they get?
My cats would love to meet them?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I don't know -- The one male I had previously got pretty darn big and was very gentle -- He also had no instinctive fear of cats and when introduced, the cat would generally shy off because he wasn't acting like prey! Cats are often wisely afraid of the unknown...
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Great pictures Pete and thanks for sharing. They look very soft when they are all three in their pile. I can't get over how much they are growing. I wish I could put on weight that fast. Do they get longer and wider as they gain weight? At one point would they just get bigger around?
I really like the loaf of bread. I bet they were very entertained by it.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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