#33764 01-20-2005 08:26 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | Ken,
WOw. That is fantastic..So happy to hear that...But my mom has this awful infection with oozing out of her chin continuously and is just not improving at all..And now with the cancer possibly back, I dont know if that would help. What do you think? I know you are not a doctor..but I value your opinion since you have been through this way more than her docs regarding this... Thanks..oh..and I appreciate your kind wishes and words....GOd Bless you! Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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#33765 01-20-2005 08:32 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | Ken,
WHat exactly is the HBO treatment? I am sorry, but I am suggesting to my family and I hate to say, I dont know much about it. :-( Thanks Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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#33766 01-21-2005 05:57 AM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | There are many bits of information about hyperbaric oxygen treatment in the main body of the web site. You can use the search engine on the site and just type those key words in, and you will get a list of all the pages that have it on them. I just did that and here is the link that the search engine gave me back.... There are over 600 pages of information on the main body of the OCF web site. When you have a question, sometimes the immediate answer is no further away than the search button.... http://search.atomz.com/search/?sp-...&imageField.x=25&imageField.y=16 Also remember that the message board has its own separate search engine. That will look through all the previous posts for you for your search terms. We have had many very knowledgable posters here over the last 4 years that have left us valuable insights form their personal experiences. Besides the factual information that you get from the main site, the search of the messages will also give you the personal viewpoints that fill in the blanks about what it is like to undergo some particular proceedure
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. | | |
#33767 01-21-2005 12:47 PM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Jan 2005 Posts: 94 | Stephany,
I had an open wound on my jawline for over a year. My skin was so damaged by the radiation that it just gave up. After several courses of antibiotics, the plastic surgeon on my team decided to patch the hole and replace some of the thin skin with a forearm flap. As is usual, he left a drain to let excess fluids escape after the surgery. The drain hole wouldn't heal, so I hadn't gained any ground.
After HBO treatments, I had a very minor 1-hour surgery to clean out the wound and close it up. It healed. HBO worked for me. I don't know if it would help your mom.
You asked about the treatment, and Brian pointed you to the many good articles on the OCF site. Let me just add that I traveled to the HBO center every day for 40 days. After changing into scrubs, I sat in a steel tank for 2 hours with up to 3 other patients and an HBO technician. I played cards, read books, and chatted with my companions.
Once in the tank, I put on a light weight "helmet." The technicians increased the pressure I the tank to about 2.5 times normal atmospheric pressure. Then, they pumped pure oxygen into the helmet.
There were only a couple of side effects. I got nearsignted gradually and it has taken a couple months to get back to normal. And, I felt a little tired after the treatments.
There you have it. I hope this helps.
Ken
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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#33768 01-21-2005 01:19 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Stephanie, I also had HBO treatment in April of last year. I had 30 "dives" and it was so I could have a bad tooth extracted as safely as possible. It worked as I had no issues with the extraction. My treatment was different then Kens, I was in a singular chamber for one person only. It's a round, long, pure glass capsule that you lie in. Nothing is allowed in there with you, no jewelry, nothing at all but your eyeglasses. There are televisions mounted on the walls outside the chambers and the sound is piped into the chamber. All in all, it was a positive experience for me. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#33769 01-21-2005 05:58 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | Minnie I am so glad to hear that it helped you. Unfortunately my mom cant do HBO treatments because her tumor is likely back. But thank you for the information...and Ihope you are doing well God Bless Stephanie
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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#33770 01-22-2005 04:02 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Stephanie, I'm so sorry that her tumor is back. My biggest worry if I have a reoccurance is not how I will feel but how my older girl's will feel. I think they will spend all their time looking for a miracle for me and then feel like they couldn't "save" me. I am guessing that you are spending every spare moment you have trying to find a miracle for your mother, you are just not willing to give up, which is understandable. If I could offer you advice it would be to first, get her some pain management, she doesn't need to be in pain. Second, keep looking for answers and hope but look in the correct places, which would be at the large cancer centers with the top doctors. Nowhere on the internet are you going to find a cure for your mom. You will find people that will take your money and give you false hope but whatever course your mothers cancer is going to take is going to happen. As a mother, it would break my heart to see my daughters desperately trying to save me. I hope that if that time comes, that they will just spend their time with me, making me smile and laugh as they have since they entered my life. If there is anything I can do for you and your family please just ask. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#33771 01-22-2005 06:57 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | Minnie,
I am so touched by your message to me. Wow~ you sound like such am amazing mother and person. You are so right. I am spending a lot of time because I feel that is what I need to do. I dont want to give up. But, the good news is that my mom is going to Pain Management Center on Monday. So that is good. I try to spend time with her but she is always tired and does not feel well and does not want to do much. But my twin sister and I keep on trying. We do visit her and spend time with her. The hardest thing is watching my mother suffer. I hate it. I do want to do all I can. But you are right about those centers, etc. taking your money. We arent going to do that.
REgarding you, my mom had a weired recurrence. I hope and pray you never have a recurrance. So many people in here have NOT had recurrances. I am sure you will be fine. My mom had the same surgery as you. The jaw removed and replaced with her leg bone. She had a couple other surgeries before that and then she did the radiation which ended about 10 months ago or so. How are you doing and feeling? I know how hard it must be on you and your family and i will keep you all in my prayers. Are you feeling better and able to eat? i hope so. Minnie, I cant thank you enough for your messages. You really nailed exactly how I am feeling and how desparately i am trying to help. she has the top docs here in LA and we are meeting wtih them at the end of the month and can ask questions then. Please dont worry about you getting a recurrance. You probably wont. My mom had a tough road ahead of her. God Bless you Minnie Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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#33772 01-23-2005 05:37 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Stephany,
Sorry to hear of your Mom's reoccurance. As Gary mentioned you may want to look into hospice care now so it's all lined up and ready when needed. There is no reason your mom should be in pain. This is a basic right of the patient to have her pain managed. Please take comfort in knowing many members of this forum are pulling for your Mom. She is lucky to have you as her caregiver. Your love for her is very apparant in your posting's. Hoping for that miricle for her.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#33773 01-23-2005 07:22 AM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | Daniel
Thank you so much. The word "hospice" Scares me at this point. I think it is a little early for that. Thank you so much for your kind words. My dad and twin also love her very much but we are all so annoyed with this disease and the fact that my mom has fought for over two years "for nothing". But she still functions somewhat at this point. But, she is going to the pain management center tomorrow. That I am happy about. Thanks somuch Daniel Hope you are doing ok. THanks for your prayers and I will put you and your family in my prayers. Thank you so much Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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