| Joined: Oct 2003 Posts: 25 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2003 Posts: 25 | I am almost 7 years out and life is good - almost normal!I had three teeth extracted 4 months ago and healing has been a problem. My doc has suggested hyperbaric oxygen treatment but dentist who spoke with oral surgeon who works with oral cancer patients says the treatment will not help and we should wait a longer period of time or consider treatment with pentoxyphylline. I am concerned with bone death possibility. Looking for any advice or anyone treated with pentoxyphylline?
SCC base of tongue,T1N1M0, Rad & Chemo, treatment ended 12/11/2003
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | I've never heard of Trental being used for this, but it is an interesting idea. Here is a link to the manufacturer's web site for some more info. Please keep us in the loop if your doctors decide to go this route, it is kind of an off label idea for the drug, but in theory might offer some benefits. If they do it and it works, we would all like to know since this is such a common issue. http://www.sanofi-aventis.us/live/us/en/index.jsp
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | This is very interesting. Spending time in a hyperbaric chamber is a major "pain". A plus is that Trental has been around for a long time. The use of the drug may need to be discontinued just before and after a procedure ? Please keep us updated on this. This is sort of old but still interesting http://www.ncbi.nlm.nih.gov/pubmed/1707692M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | My RO prescribed trental for me about 6 months after RT. He had me take it with vitamin E (800 IU twice daily). He said I had the worst reaction to RT he has seen with mouth ulcers, swelling and my healing time was off the charts. I also showed signs of ORN as my front teeth started to loosen. He had me on the trental/vitamin E treatment for about 1-1/2 years. Eventually my team of doctors convinced me to give HBOT a try, so I went for 45 treatments. I would say the trental did help me, but it was a slow process. The HBOT had a quicker impact, but spending a few hours per day in the HBO chamber is like Marcus said a �major pain�. I have not had any dental work, so I cannot give you any input from that perspective.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | 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 have experienced both and my jaw is dead on both sides. I am not letting them take the dead bone even tho it is harder each day to even take liquid food as well as some of my concoctions. If the jaw goes, I have to have 2 major surgeries at the same time and then feeding tube and trac for life. Think I'll just leave my stomache where it is and live life for a few more years.
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: Oct 2003 Posts: 25 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2003 Posts: 25 | Thanks for the responses. Had appointment with oral surgeon yesterday and he still feels that HBO treatment would help healing the extraction sites. He believes I could achieve 70% healing in 6 months vs. doing nothing with the hope of 20% healing in 6 months plus raising the risk of bone exposure.The work with Pentoxifylline is being done at University of Maryland. I am trying to get a consult with them on the issue. Understand the treatment is 800mg of Pentoxifylline and 1000IU of Vitamin E daily. I will keep everyone informed on what I learn. I am interested in hearing about HBO treatments? How bad are they?
SCC base of tongue,T1N1M0, Rad & Chemo, treatment ended 12/11/2003
| | | | 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 | Len, HBO is the easiest thing Ive done in all of my treatments. I ended up doing 125 of them which is unusually high. I still may end up doing 20 or 40 more later this year. You may need to get tubes in your ears to help with the pressure. Basically you lay in a big glass cylinder for about 2 hours and sleep or watch tv. 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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Christine, YOU may get to lie in a nice glass cylinder but the one they have at HUP looked like a giant oil tank left over from WW II and seated 8 people. You couldn't see out of it so if you are claustrophobic like I am, this is not going to be fun. I did not have HBO.
Len, Make certain you check out what the equipment looks like before you agree to this. They are not all the nice chamber that Christine got.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | 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 agree with Christine about what it's like. I had to have ear tubes put in but they didn't help and I only had a few treatments. But I could lay and watch TV in that tube , read or just listen to music. Good luck.
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I'm claustophobic and I had HBO treatments for 6 weeks in a chamber with 6 or 7 other patients. There was a nurse in attendance during every treatment. We were able to play scrabble or watch TV. I agree it was a drag having to go 5 days per week, but if it's going to assist with healing it's well worth it.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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