| Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Thanks for the insight, and setting expectations on the time things need to heal. I never thought oral surgery and trismus would be such a major detraction from my quality of life. Frankly, I'm much less worried about the actual cancer at this point! I'm glad to hear HBO was effective. Do you think it's OK t do HBO while my radiation sessions are still going. I could use some mouth healing.
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Can you explain in more detail on what sort of bone fragments and how they were breaking through the jaw? Are these bone fragments jutting out from the inside roof or floor of your mouth? And how did HBO actually improve this?
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | 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 | In regards to doing HBOT during treatment, it is my experience that with active cancer it is not done, and had to wait two years myself to finally complete my treatments (numerous recurrences), and have a clear scan, even after 3 months, had to wait until six months after radiation, which was around my second clear scan, for them to agree do my extractions with HBOT. There are some that say HBOT can increase risk of cancer spread, through angiogenesis, and some studies say it doesn't. It may have been a coincidence, but 2 months after HBOT in 2011 I had a recurrence. Maybe if the benefit outweighs the risk it may done or if the doctors think it doesn't matter.
All my doctors were involved, in agreement, with the extractions, HBOT process...two RO's, ENT, MO, OS. HBOT doctor required insurance approval, a letter from my ENT, OS prescription, a physical, chest x-ray, medication for high BP.
I hope the helps, and ask your doctors. You may get a different answer.
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: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Thanks for all the helpful detail on HBOT. Will proceed with caution.
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | Christine, I saw your post in another thread that maintaining adequate nutritional levels is very important, somewhere like 2,500 to 4,000 calories. I find this very hard to do, and my wife is excellent at finding dense nutrition sources.
I'm exclusively on a feeding tube now so do you know if there are recipes for preparations that are such high calorie density?
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | 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 | Yes, I agree with Paul. This is precisely why we did not proceed with HBO. We were told that it could accelerate the growth of any cancer cells. Something you definitely do not want to do while still undergoing treatment to eradicate the cancer . 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | My mother has a spot under her chin where a sergical biopsy was done and it will not completly heal. I mentioned HBO to her Oncologist and he said "You have to be careful with that because it can feed the cancer cells along with the good cells".
We definitely don't want to do that.
Last edited by sweetpe1; 12-03-2014 04:04 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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | How sad that something so potentially useful like HBO can feed the cancer. I thought of that when I went to a talk given by a dietitian yesterday.She said that taking high doses of vitamins can also reduce survival. It seems counter-intuitive.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | OK, just finished Week #3 today and everything has gone fairly well so far. Even managed to add 2 lbs.!
Throat does feel raspy and dry. Even swallowing plain water feels rough.
Tongue pain due to lacerations and sores from oral surgery has finally improved.
Second bag of cisplatin coming up next Tuesday, Day # 22 (yeck!). Hope this is my last one, there's a chnace not needing a third one.
Bracing myself for the really rough times coming up. Wish me luck!
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
| | | | Joined: Oct 2014 Posts: 14 Member | OP Member Joined: Oct 2014 Posts: 14 | OK, done with Week #4. So far still hanging in, no big radiation side effects yet. Some roughness in the throat. Had 2nd bag of cisplatin chemo, given me some mild nausea. Just a couple of times dry retching, no vomiting, more noticeable effects are a lot of hiccuping.
QOL
_________________________________________________________ Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat. Stage IVa Trismus, neglected dental health Age: 64, smoker aged 16-32 yr. Diagnosed: 01/2014 (personally suspected well before that) Self-treat (Cancell + mushrooms): 2/2014 Mexican clinic (Alternative): 6/2014 Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
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