| Joined: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Hi, I have just had an Inflammatory Miofibroblastic Sarcoma of the Pelvis removed. About 5 months ago, early April, ulcers began growing in my mouth. These ulcers worsened early June when I was diagnosed with Severe Mucositis. I was hospitalised and as a result of not being able to eat, I lost a lot of weight. Since June, I have followed a strict mouthcare regime. My radiotherapy was brought forward to mid June in the hope that it may clear up the mouth ulcers. Unfortunately this did not work and I ended up having a Naso Gastric tube inserted. My tumour has been successfully removed since but there is no sign of the ulcers abating. I am hoping someone may have a suggestion to help clear these up. I use several medicines to numb the mouth before eating, Xylocaine mixed with mylanta and a Cocaine mouthwash. I also use a bicarbonate soda mouthwash post eating. Is there anything else that may help clear them up? All the doctors say it is very rare as was the tumour but no one seems to know when they will go. 5 months of these is doing my head in. Thanks | | | | 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 | I'm confused. You had a cancerous tumor removed in your pelvis?
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: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Yes. It is a very rare cancer and one of the side effects of the cancer was Muciositis. It won't go away and I am after help to clear up the ulcers? | | | | Joined: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Hi, I have just had an Inflammatory Miofibroblastic Sarcoma of the Pelvis removed. About 5 months ago, early April, ulcers began growing in my mouth. These ulcers worsened early June when I was diagnosed with Severe Mucositis. I was hospitalised and as a result of not being able to eat, I lost a lot of weight. Since June, I have followed a strict mouthcare regime. My radiotherapy was brought forward to mid June in the hope that it may clear up the mouth ulcers. Unfortunately this did not work and I ended up having a Naso Gastric tube inserted. My tumour has been successfully removed since but there is no sign of the ulcers abating. I am hoping someone may have a suggestion to help clear these up. I use several medicines to numb the mouth before eating, Xylocaine mixed with mylanta and a Cocaine mouthwash. I also use a bicarbonate soda mouthwash post eating. Is there anything else that may help clear them up? All the doctors say it is very rare as was the tumour but no one seems to know when they will go. 5 months of these is doing my head in. Thanks P.s I posted this in another thread but I think it may have been the wrong one. Sorry if you have seen this twice. | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | H, so sorry to hear your struggle with this. I gargled with a glucosamine powder, I hineslty not sure how much it helped, but if your dr agrees it can't hurt to try. I also gargled with pure aloe vera. Again because my symptoms were not as severe as others, I'm not sure how much it helped, tho it seemed to. I have heard people swallow both, but I just could not bring myself to do that. Hope you find something to ease up your symptoms. Take care
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | 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 | I was going to reply to this same post somewhere else. Just for future reference, we are the same people, regardless of where or how many times you post.
Have you spoke with your pharmacist or researched your meds to determine if any medications could be interfering or causing the problems? For example, COX inhibitors could cause reactions like this. That would be things like Celebrex, Naproxin and even ibuprofen. Diet can also affect it. Thrush, too.
Are you sure the cancer caused this or did the treatment?
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: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Thank you so much for these two posts. I will definitely try the gargling. I have been told by my oncologist that this type of cancer causes an Inflamatory reaction to the mucosa linings around the body. As a result, my mouth is very bad. I really appreciate any ideas as it has been a couple of weeks since I had the tumour removed and I have had no improvement in any if the side effects if it. If I could just get the mucositis to abate, that would make so many things better. Cheers | | | | 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 | There is also a "Search" box and you can type mucositis and see many posts about various things people have tried. I hope you achieve success soon.
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 | My advice on the ulcerations.
Cleanliness. Whenever you eat whatever you eat. Immediately brush your teeth, and rinse with a solution of salt water / baking soda (a tablespoon of each) with a bottle of water. See if your dr. can prescribe cortaid, and apply it after this. It should hopefully clear up in a week or two. 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: Aug 2014 Posts: 23 Member | Member Joined: Aug 2014 Posts: 23 | My husband recently started using Neutrasal, a prescription supersaturated calcium phosphate rinse. There is also one called caphosol. He says it is helping.
Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a CT scan 7/23/14 Biopsy 8/7/14 PEG tube in 8/15/14, out 4/2015 35 rads, Cisplatin X 3 - finished 10/27/15 cancer free May 2018
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