| Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Yes Alpaca my mom is very sick .
I'm thinking it may be something to do with her swallowing. She is complaining of swelling in the back of her tongue and throat. When she tries to swallow she kinda throws her head to the side to get it to go down. Maybe its something going on with the pharynx or larynx area. I just don't know. The wound is below her chin. It is not a hole that is open clear through her jaw. My daughter looked with a lite and cannot see through and through. What ever I happening I believe its in the passage that leads to the stomach. Its not all of what she swallows but just a little is coming through the wrong way and landing on the wound dressing. But I can assure you I will have some answers in the morning. What ever is happening it has to be addressed.
Thank you so much for your help Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | When you have the doctor in the room, shuffle towards the door and say you need some questions addressed. There is no excuse in leaving you dangling like that. Can you email the nurse? I used to do that to keep the dialogue going.
It sounds like there is a fissure or some kind of hole from the floor of the mouth surgery. That would explain the drink leaching out. What Alpaca is saying makes a lot of sense.
I am really sorry for what your mother and you have had to endure. It sounds horrific.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | It definitely sounds like a fissure. You may not be able to see through the hole but tissue swells and usually this makes it look like there is no hole where there might be a small opening that enlarges at the weight of the liquid or just drips through. I agree with everyone here you need clarification. HBO sounds good and I know you know the risks. Fissures are very hard to heal unfortunately and worse they are open to infection. Hopefully they will get things sorted out for you and you will get answers.
hugs
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: 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 | As far as I understand, HBO is not for patients who currently have cancer. Its to be used for healing. Cancer loves oxygen and HBO would make the cancer grow even more. Its not a good plan at all!!!! BE CAREFUL!!!! HBO (main OCF pages) 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thank you all for the advise
I was reading about HBO and cancer and its not good. I just don't know what else can be done to heal this wound. Its getting bigger and its very deep. I explained to my mom this morning that its very risky. I'm sure the oncologist will not advise her to do the HBO. I guess the doctors will have a meeting to discuss some kind of a plan.
Thanks Heidi
Last edited by sweetpe1; 03-10-2015 10:24 AM.
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I think this is a Fistula, which is just a tract from one site to another . In your Mums case it goes from somewhere in her neck to the outside skin. But fistulas can be anywhere. Personally, I would not be doing HBO while she still has active cancer. Do discuss this with her oncologist before embarking on this course of action. Thinking of you both, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm sorry for the continued troubles. Besides being ulcerative, a fistula, it sounds like it's possibly from a Fungating wound (cancer). Here is a link which may help with some info, possible treatment. http://www.macmillan.org.uk/informa...other-side-effects/fungating-wounds.html
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | From what I know of cancer - there are two kinds.. the kind that thrives in a hypoxic environment (lack of O2) and those that don't. I know HBO has it's risks. Ideally push for a team meeting where everyone including a wound specialist will have their say. Hugs and best of luck
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: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I've seen reports that say HBOT doesn't cause or promote cancer, but it has been suggested previously that it's possible through angiogenesis. Even still, my current doctors waited until I was clear of cancer by scan, after 6 months, to do HBOT treatments. On another note, I also had HBOT several years ago, 3 months after radiation, no scan yet then, and had a recurrence a month later, coincidently or not. There have been other studies with HBOT with chemo, which showed some treatment promise when added, but maybe not so with radiation, so there may be contradictions with this, and others, for this type of treatment, so as suggested, see what the doctors say.
Good luck with everything.
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: Feb 2014 Posts: 24 "OCF Canuck" Member | "OCF Canuck" Member Joined: Feb 2014 Posts: 24 | Sweetpe My husband is on the same track as your mom. December we were told the cancer is back in the cheek and in the lymph nodes in his chest. they said he is terminal. They said no more treatment just chemo which is palliative. My husband did not want any more treatment and since we have 5 year old daughter ... he said he would rather travel and enjoy life. We went to disney at the end of December and it was awesome. We got back early january and he started chemo in February. Carbo?taxel. The first round was difficult and he lost 10lbs. The second treatment happened a few weeks ago and it was better. We get the results of the scan on Wednesday.
But he has this open wound on his face. It started late january like a pimpel that popped and kept oozing fluid. The hole got bigger and bigger and there is a lot of tunneling. We kept showing doctors and they said its the cancer ... nothing can be done. Then about on March 10 the home care nurse came and said its infected and that we had to go to emergency right away. He is now on IV antibiotics and he is misrable. He is stressed that the wound wont get better and just wants to give up and Die.
its so stressful being a caregiver and seeing your loved one go through so much. Any advise that you can provide will help because I know we are travelling the same path. zahra
Caregiver to Husband Hubby Age 43 Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014 T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site. 37 nodes removed. 3 at level 1 malignant.
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