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Still not healing and completed treatment in December.

lola5071
Posts: 16
Joined: Apr 2012

My husband completed his treatment for HPV+ tonsil concer w/spread to lymph nodes December 14th 2011. Treatment plan included removal of both tonsils, 7 weeks of radiation and 2 chemo sessions. He had a clean pet scan in April and was feeling pretty good. At the end of April his voice changed and throat was hurting. They put him in the hospital and said he had a lot of radiation junk and also a small bone. They removed everything and he felt great again until July.He woke up one morning and blood just started shooting our of his outh. Rushed him to er and they did emergency surgery. ENT believed he had necrosis - blood loss and bone death due to the strong radiation. This probably explained the episode in Aptil as well. They said he was not healing as quickly as he should be. So they recommended 30 HBOT sessions. Just finished them and had another procedure yesterday. The ENT took 3 biopsies and they all came back clean. He stated that he believes he is cancer free and is seeing some improvement in healing but not as much as would have hoped. So now he is sending him back for 20 more HBOT treatments. Question - has anyone had this kind of problem? We are coming up on a year and still dealing with the inside of his mouth not completely healed. If he isn't any better after these 20 treatments they are going to send him to University of Iowa City Hospital. He is now getting treatment in Des Moines at the John Stoddard cancer treatment center. I really like all of his doctors and his ENT studied at MD Anderson in Houston. Sorry for rambling - but has anyone heard of this before? It's a bummer - you are NED but still dealing with the other side affects.

longtermsurvivor's picture
longtermsurvivor
Posts: 1756
Joined: Mar 2010

is one of the complications we can have. It can have early onset, or present many years after radiation. A number of people here have dealt with this problem, which most commonly involves the jaw, but may involve a number ofmother sites in the area. I am sure some of those people will be along to discuss with you. In the meantime, it sounds like they are headed in the right direction with your husband. It can be quite a journey to solve this, involving hyperbaric treatments, and perhaps even more surgery to get this under control. But eventually, they will get this under control.

best to you

Pat

tuffenuff's picture
tuffenuff
Posts: 273
Joined: May 2012

one of my fellow tonsil friends just had her doc say she wasnt healing fast because she wasnt getting enough protein. might want to visit dietary intake with your doc. just a thought.

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

i had necrosis many many years post treatment, they gave me iv antibiotics and hbo. 6 months after the treatments i was finally starting to do better but it took probably a year to year and half to feel healed. I asked the doc. 9 months after the hbo treatments about having to do them. he said look at it this way, it's about risk and reward. you could have given it time and maybe you would have recovered with a strong maybe. but by doing the hbo you reduced the risk of failure and probably helped alot of the healing.

please keep in mind and probably has not been shared lately but everyone reacts to treatments the same way, we are all different. for me it took 8-10 months to be able to swallow without thinking about forcing a swallow while eating. recovery for everyone in the head & neck society is slow. i recently supported a friend who i would call the poster child for surviving treatments. 4 weeks post treatment he was eating most everything. 7 weeks post treatment back to work full time and doing volleyball refereeing at 9 weeks. i must say this at 2 weeks post treatment he was very upset he was not back 100%. so everyone struggles with recovery.

sad that you husband is on the long term recovery, prayers it continues to get better.

john

katenorwood
Posts: 1808
Joined: May 2012

Hello there !
My goodness you guys have been through some major tough times ! I have no experience with this...was hoping HBO could help my lungs but not used in US yet for this issue. I am so happy other's with experience chimmed in for you. I pray that even if your husbands recovery (healing) is slow...it continues to move forward and improve with each and every day ! Katie

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Starting in November of 2009, I first had a series of 80 dives to see if it would help with the rawness of my throat. I finished radiation in May of 2004. The dives did help somewhat so the doctor suggested 40 more. After going through these, I didn't see any more improvement so I stopped them. One year after the treatments, I ended up with necrosis of the left side of the mandible. I saw a surgeon and was given three options. One was to do nothing, two was to take out the bad portion of bone and not replace it with anything and three was to take a piece of my fibula (the non weight bearing bone in your leg) and graft it into my jaw. Now, after a failed bone graft, I am left with what was basically option two. I have a disfigured face with a portion of jaw missing. I was never told about debridement. If the doctors don't mention debridement, ask about it. I just wish I knew then what I know now.

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