#44631 02-23-2005 04:53 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Sep 2004 Posts: 153 | After almost one month in Houston, my brother is coming home today. The plastic surgeon said his healing was going "exceptionally" well and the regular doctor said he looks great. He had a small bout with pnemonia and a staph infection in a drain tube. That has slowed his recovery and kept him hospitalized a week longer, but from what I've read these complications are not uncommon and we were lucky they weren't any worse than they were. He had not had any pain medicine since the second day after surgery and we were very excited, considering the pain level prior to surgery, but a couple of days ago it started hurting again and he is having headaches. I so hope the pain does not return to the intensity level it was. Does anyone have experience with this? Can we expect the pain to go away or just manage it and is it usually managable? I know it is still probably too soon to know in David's case. The doctor is encouraging him to get an internet hook up at his house so he can be in touch with others fighting this disease. I hope you will meet him on these pages soon. I hope you are all doing well and if there is ever anything I can do for any of you, please let me know. My sister has quite a prayer chain going and I would be happy to add your name and those of your loved ones. Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#44632 02-23-2005 09:50 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Tonya thanks for keeping us posted, I'm so pleased that David is coming home, he will benefit so much from having his family around him, and I know that you will rest easier.. Don't let the pain issue continue to long, pain meds are there to help, make sure the docs are up to speed on this for him.. Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#44633 02-23-2005 11:32 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Tonya, It is really great David is recupeating so well and able to come home. I don't like the sound of him NOW having pain and headaches after not having any problems after surgery. Make certain that the doctors address what might be causing this and follow up on it on a regular basis.
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
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#44634 02-23-2005 03:09 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Good news Tonya!
Headaches are pretty common including some rather strange effects like "sore scalp". Always let the doctors know about changes but expect them to say "this is normal" The pains usually get better with time and healing.
I hope your brother joins us when he is able.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#44635 02-23-2005 04:33 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Tonya, If I remember right your brother had a surgery similar to mine. I had very little pain after my surgery and none that came "later" on. My biggest source of pain was from the leg where they harvested the bone to rebuild my jaw. Please keep the doctors aware that he is experiencing new pain. So glad he is coming home, that in itself will give him a boost. I cried when I came home, it was so emotionally overwhelming 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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#44636 02-24-2005 05:20 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Sep 2004 Posts: 153 | Thanks. He goes back next week for a swallowing test and checkups. I will make sure he updates them on the pain. The are having him take a pain killer about 30 minutes prior to cleaning out the infected drain site and that medicine may be causing a headache. I'll check. Thanks so much, Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#44637 02-24-2005 06:15 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Minnie, This thread is very cool. You may not realize it yet but you have been able to forget your early months after your treatments. I've been here long enough to remember your slightly fearful posts asking about post treatment pain and if you should worry about it. remember? http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/12/t/000015.html#000000 and http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/12/t/000031.html#000000 and this one http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/12/t/000035.html#000002 lastly http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/12/t/000095.html#000004 I make this point to remind any newcomers that healing does happen. Lets not worry. Minnie, I rejoice in the fact that you have healed well and have been able to un-remember
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#44638 02-24-2005 08:13 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Please do encourage your brother to join this forum..it is a a lifeline and also a wonderful reality check. For instance, I just learned about my own scalp pain by reading this thread..another positive perspective gained! Of course we all hope to join Minnie in the Un-remeber Club. As far as I know people can just lurk and learn for a while until they feel comfortable posting. It is such a worthwhile thing. All the best to you and your dear brother...so fortunate to have a strong supporter like you. Cheers, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#44639 02-24-2005 08:38 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | The Non-Remember club.........that's a good one Mark. I wrote that post to quickly and should have elaborated more. Tonya, after my surgery I didn't have any pain other then my leg. The nerve to my neck and bottom jaw were severed so there wasn't anything to feel! I DID have aches and pains AFTER my radiation treatments which ended in July 2003. My surgery was April 16th 2003 and one month after surgery I did not start to experience headaches or an increase in pain. If anything, I felt better then I had the month before. My point was that it was a new pain, I should have been clearer though. It may be nothing, probably is. But I still suggest that you make sure the doctor knows about it. Mark, I wish I had you nearer to keep me straight.......I need to learn to take my time and put more thought into the posts! Now, if anyone wants to ask about AFTER radiation issues.............I am one of the queens. No forgetting on my part about that particular time in my life! Take care, 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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#44640 02-25-2005 05:36 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Sep 2004 Posts: 153 | Thanks for your posts. David's headaches weren't as bad yesterday. I am probably just trying to rush the healing process. He seems to be in good spirits although we are waiting for his speech keyboard to come in and he can't communicate as much as he would like right now. My aunt commented that the plastic surgeon should be very proud of himself, as it looked like you wouldn't even be able to see the scar. My brother said, "Scars don't bother me, I'm just happy to be here." Also, (kind of a funny in this crazy world of cancer) last night David showed us his leg scar. It's healing great. He wrote on his board that they forgot to shave his leg before taking the soft tissue graft and now he has hair growing on the floor of his mouth. He smiled and chuckled. I'm so grateful his spirits are up. They leave again Sunday to go back for tests, but for now he is just happy to be home.
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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