| | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) |  "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Anita
I'm sorry to hear that Clark is having ongoing problems. The whole process is difficult enough without any additional dramas.
I haven't had any experience with the crunchy sensations but I did have to deal with a small area on my suture line that had an ongoing weeping discharge. I was treated for an infection and kept on different antibiotics for about 4 months . As it turned out, it was one of the small metal plates under my skin supporting and shaping my new jaw bone that had to be unscrewed and removed. Once that plate was removed, the area then healed within a few days and I have had no problems with that since.
I would definitely contact your PS. If Clark has the metal plates, it might be one of them causing the discharge.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Anita...wish I saw this thread sooner. I went to HUP also and have since changed to Fox Chase Cancer Center. I'm happy that the surgery didn't last as long as expected..that is good. Does your husband have another appointment soon so they make sure everything is ok? I just hated the parking there...I ended up following people to their cars...lol
Good luck and hope to see update soon:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Where did you park Suzanne that you were so scared? I park in the Penn Tower Garage. They also have valet parking at the front door of the hospital which used to only cost a few bucks more. I haven't used it in 12 years so it may be lots more now.
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I wasn't scared at all...just no where to park...the only way I could find a space was to follow someone:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | I spoke to the PS today and since Clark does not have a fever or chills, this is not an emergency. We're going in on Wed. to get a culture and then some more antibiotics.
So tonight Clark is having some homemade chili (very mild) that I pureed. He said that he hardly has any taste. Is this from the pain meds? Before this last surgery, he had gotten about 80% of his taste back after radiation. This surgery did not involve his tongue so I am puzzled by this. Will he get his sense of taste back when he's off the percoset?
RE: parking--I also park at Penn Tower and now that the Perelman Center is open we can park there as well. I can always find a spot if I go to the top deck (Penn Tower) where most people don't want to be exposed to the elements.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I park on the Lobby Garage level and there are almost always spots. The parking in the Perelman Center is a nightmare so I park at Penn Tower even when going to the Perelman Center. The maddening part of Penn Tower is if you are on a level that hs no parking, the only way to get up to another level is to go all the way back down to the bottom and start again. Who the H designs these things?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I totally agree about Penn Tower....I don't go to Penn anymore so I don't have to worry about that. But that parking garage is crazy!!! You can only go up...madness
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | We went to the PS yesterday and he did a small procedure to re-route the drainage by putting in a small rubber drain and some additional sutures. No need for more antibiotics. I can remove the drain on Sunday. Then we see him again on Thursday.
As for parking--we opted for the valet at Perlman. That was the fastest appointment we have EVER had at HUP. We were in and out in half an hour so the parking was easy and didn't burn a hole in my pocket. That new building is so beautiful! They have a nice coffee stand there, too.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Anita. Glad the appointment went well. Continued prayers headed your way. Hugs
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | WOW!!!! A half hour at HUP?! That is good.
Glad to hear things went well...keep us posted.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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