| Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | I was wondering if anyone else had come across the issue of their trachea site not healing.
I am 5 months post my second round of radiation. I have had radiation to the right neck in 2009, then a recurrence and radiation to left neck and brachytherapy to my tongue. Trach came out March 1.
The site would scab over, but never heal underneath. It got larger when the scab would fall off.
My radiation oncologist has me on Pentoxifylline since mid June. My surgeon gave me Silvadine which just aggravated it.
I went to the local hospital's wound healing center and now I have been using Aquacell and Allevyn Adhesive bandages.
Since the area is now constantly moist with the bandages over the past 2 weeks, the hole has opened up again the size of a BB. But there is no drainage, foul odor, skin is nice and pink, can see tiny blood vessels.
I left a msg for the rad onc to call me but haven't heard back since Monday, will call again tomorrow.
I had tongue and base of tongue cancer. I had a clean PET and CT scan mid June.
I know the area can be very hard to heal, but now with it opening back up, it tells me my trachea must never have healed shut.
Of course I am getting very anxious and fear the worst.
Has anyone been through this or have any advice?
Thank you so much!
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I definitely thing the double dose of radiation then possible infection is what's causing you not to heal properly. It sounds like you are getting there slowly. But as always keep pushing until they find something that works. Hugs you've been through a lot.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2012 Posts: 47 | Hi Cindy, can one of your doctors stitch it up if necessary? I know they did that with my mom. Hang in there!
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I had a trach for 6 months and it healed right up. It's talk to Dr time for you and be blunt about it. He should do something to close it.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I hope things improved by this time? Prior radistion cancause delay, complications in healing after surgery, as does not enough nutrients. Has anyone mentined HBO treatments?
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Thanks everyone.
Still not healing, trying collagen and see ENT Dr.in Philly on the 19th after my MRI next week.
I take a good multi-vitamin, extra E and also supplement with Clinical Ensure and add whey protein to my Cream of Wheat so I am trying to keep up with nutrients
Yes, I think I am going to need some surgical intervention. I wish they could stitch it, but wonder how it will hold together. I hope I won't need a graft.
HBO scares me because that was the culprit that made it grow back more severe the third time.
I will post the answers I get from the ENT so maybe I can help others.
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Well, I had a biopsy before going back in for suggested HBO treatments and it came back invasive cancer.
I had a clear MRI 2 weeks ago, but getting a PET on Thursday and results Friday.
I hope this hasn't spread to my trachea, larynx or lungs. Otherwise I will probably need a flap and graft.
I'm not ready for this.
This is my 4th time around.
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | God bless I am so sorry to hear... It's in the throat tissue? Or neck tissue? Hopefully it hasn't spread he has Ben caught early. Take care
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Cindy, I am saying a prayer for you. I've been through this three times myself and it seems it gets harder each time. Please don't despair. You have some wonderful doctors at great facilities and hopefully you have caught it early enough to limit the amount of treatment you will need moving forward. Please update us when you feel you can with a little more information about what they have discovered as in where it is and what size they think it is and such. I think you are in the right place for good advice and please feel free to just vent if you want to. I want to vent for you. I HATE this disease.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2012 Posts: 47 | Cindy, ugh, I hate reading this. Hopefully it has been caught early.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
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