| | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I spoke with Marieka's mother yesterday, who reports that Marieka is doing remarkably well...that her lips, while injured in the long procedure, are recovering and becoming less numb, and that her smile is not crooked, as she had feared it might be. She is eating some soft food and talking with her surgical obturator. That plate will come out soon, and it will be replaced by an intermediate one. The adjustments required in this process are difficult, especially with the amount of tissue she had removed, but I feel that, with her attitude, she will work through it ok.
I'll let Marieka fill you in on whatever specifics she chooses to share, but her mother expressed appreciation for the support of her friends here. Please keep her in your prayers. There are challenges ahead, but at least she will not have to have chemo or radiation. Her tumor was an ameloblastoma.....not a good thing to have and very destructive, but not malignant. I have no idea whether radiation is even used with these or not.
I'll keep you posted.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | August, I want to thank you for the update on Marieka.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Dear All,
I have received several emails from Marieka, and while she had hoped to be able to post herself....and still might...she has given me permission to post this update.
She has received some bad news: The pathology report on the bone removed (upper jaw and palate) came back showing that the surgical margins are not clear, and she will return to surgery on Monday....day after tomorrow.....just two weeks after her first surgery. My heart goes out to her. Of course she is not healed yet from the first surgery.
She has two little sons.....7 and 3 or 4...and she is heartsick at the prospect of leaving them again for another round of surgery and recovery.
Please keep her in your thoughts and prayers. At least this time she knows what to expect....sometimes that's a blessing, and sometimes it's a curse, of course.
Her tumor is an ameloblastoma, a non-malignant (non-metastacizing) but diffiicult-to-treat tumor. She has lost much of her maxilla and now will lose a bit more.
I pray for a better report on this go-'round!
Marieka, if you're reading, please know that many here have been following your progress and praying for your good recovery. We thought we had it licked, but we'll do it again! Don't despair. It's going to be ok this time!! They just didn't quite get it all. Next week, you can begin your real recovery!!
XOX--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Colleen:
Thank you for updating. Its been a little while since any update, I was wondering if Marieka is ok. Wishing her the easiest and fastest recovery possible. Its so hard being sick when you have little ones. But that can also give you strength to bounce back for them. She will be in my prayers that the surgery goes smoothly and its the last one.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Marieka and her family are in my prayers. KNowing what to expect may be both a blessing and a curse in this case, but at least she knows her own strength and that she has a lot of support around her and I hope that gets her through this unexpected setback (and that this si realy the last of it). Thanks for keeping everyone updated Colleen!
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"
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Marieka,
Sorry to hear of this latest setback. Hope your surgery will go well and you will be on the road to recovery soon.
Please know you are in my thoughts and prayers.
Hugs,
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | 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 | Marieka,
here's hoping they get clear margins real fast.
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.
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