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#57771 01-20-2006 04:45 PM
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JAM Offline OP
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I don't even know how to start this. Got the phone report late today that John has more[new?] cancer at approximately the same site as the other. I got the report from our Otolaryngologist's nurse, which I thought was inappropriate, but he was out of town. I absorbed about 1\2 of what she said. But here is what I remember right now. He wants to do more surgery, which will include a jaw resection and replacement with bone from somewhere else, remove more lymph nodes and remove more of his tongue, put a peg in again and a trach, and then start chemo. WHAT questions should I be asking this time? How can I prepare John for this surgery? [the last time around he didn't want to know anything, but I have printed a zillion pages from here for him to read over the last 8 months and he has read every one and asks for more] I need to know something about resections, trachs and more about chemo before we start this round. I am counting on you all for help and info here. You have kept me going thus far and that has helped me keep John going. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Oh Amy, My heart goes out to John and you. Such difficult news after the fight you've already fought. I agree that the nurse should not have been the one to tell you this and I think you should say something to the otolaryngologist. He may be a doctor that has a hard time delivering realy difficult news and if so you should be having a direct conversation about that now.

I know very little about this compared to a lot fo people here but I have thought a bit about what I'd want to know about available procedures if I got the bad news that I had a recurrence and I can tell you what I'd want to know VERY clearly before starting anything:

1. what sort of complications and quality of life issues can occur and are likely to occur as a result of this procedure? What is the likelihood of each occuring?

and I'd want to know, to weigh against the risks:

2. What is the likelihood that each of these procedures will get rid of the cancer? Send the cancer into remission (and if so for roughly how long)? Keep the cancer from growing as fast (and for roughly how lojng?)

also I'd want to be sure I knew about what other alternatives there were to the recommended treatment and the dooctor's eprceptions of the risks and benefits of those alternatives.

Finally, if I ever have to deal with what you're dealing with, I would want to go to a CCC (either Sloan or Dana Farber) for treatment--the local folks here, great though they are, are not doing the latest clinical trials and are not among the top specialists in the nation. At this point, you need all the firepower you can get against this disease.

I will be holding you both in my thoughts--and the rest of your family as well. I hope other people ehre can give you more concrete suggestions and encouragement.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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My prayer for you is peace of mind... When cancer recurs we are prone to panic, especially the insensitive way you got the news. Wait till the doctor gets back and sit down with he/she and discuss the options calmly. If you are not satisfied with his/her answers or demeanor, FIND YOU A NEW DOCTOR.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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JAM Offline OP
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Someone please talk to me about what to expect to while John has a trach in [supposedly for a couple of weeks} Will he be able to talk? And please give me some input on this jaw resection and replacement surgery, will I be able to care for him at home without a visiting nurse? We know about pegs and lymph nodes - been there,done that. Thanks, Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Amy,Wish I could help answer any of those questions. I have to say I'm quite surprised you havent' gotten more responses to your initial post about this. I'm wondering if you'd get more responses if you posted this under "Medications, Treatments, Procedures". Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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I am sorry that you are back in this situation again. I am sure you will be able to care for him at home. We only have 4 peopel that I know for sure on the board that have had a trach and I urge them to post to you since I have little practical information to offer you myself. I have met with many people who have had the grafts and reconstructive mandibular work done, and none have felt that it was horrible as it seemed when it ws explained to them. Their results at the end are truley amazining. But of course the primary considerations are the complete elimination of the disease. Please post after your meeting iwth the doctors as to what they are recommending, and I will do my best to research what they are recommending for you. You are in the thoughts of all of us here, as your many posts have made you family.... and we all share your concern.

Minnie - If you catch this thread, please give her a call to talk about the bone grafts, you know the ropes on this.


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.
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Amy
No John will not be able to talk with the trach in place so you need a whipe board, (much beter than bits of paper) and download free text to speech software, www.readplease.com
He may not need it for to long I had mine for a week, once they are happy that all the swelling has stopped they will remove it
I'm sure you will cope fine
Like Brian I hope Minnie picks this thread up, she was a great help to me over the trach, and I'm sure she will fill you in over the surgery..
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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Amy
Have mailed Minnie and I'm sure she will get back to you, her surgery was the same as they are planning for John
Tell John the tracie doesn't hurt, they have to suction it when it gets a bit clogged thats just a bit uncomfortable. When they remove it they just leave it to heal, so then you have to remember to put pressure on the dressing when you talk or you blow it open again and healing takes a bit longer, (yep once I could talk I was away, and I would forget, but it healed fine)
Ask away anything you think of Amy..
We are all here for you
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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I sent this email directly to Amy and John but decided to post it here also in case anyone else ever needs the info. Let's all send some energy their way and make sure we're here for them.
Amy, if you send me your phone number we can talk.

Hi Amy,
Please know that I have thought of you and John many times an hour this weekend. All of us on this site dread the thought of a recurrence and here you and John are having to deal with what we most dread. I will be praying long and often for both of you.

Now, let's move on to the treatment that he needs to save his life. And it IS life saving treatment, as I am a testimony to! It is an easier treatment then the ordeal of radiation but it is no walk in the park. My surgery took 16 or so hours and I was kept sedated for a few days afterwards as it's very important to keep the head in one position, I believe it's beneficial to the body accepting the new bone. My left lower jaw, gums and teeth were removed from my ear to around the curve of my jaw. The jaw was reconstructed with the small bone from my left leg, along with some arteries, etc. I had a trach in for 5 days then it was removed. When I woke up the first thing I remember was the pain in my leg. I had NO pain in my face, head or neck area, although I looked as though I had been in a battle. I had severe swelling in my jaw, chin and neck area, remarkably little swelling in the rest of my face. My family told me that I was very swollen in other parts of my face the first few days after surgery. My looks had quite an effect on my family, so be prepared for it. Also, they will most likely have John's hands restrained while he is sedated, as it's normal to want to pull out the trach. My husband was furious when he saw my hands restrained and ordered them removed. In my drug induced state, I immediately pulled the trach out. He's so stubborn that he wouldn't let them put the restraints back on and he sat there all night, holding my hands and arms, he's such a great guy.
With the trach I couldn't talk until the second day I was awake, when they put in the type of trach that you can speak with. Until then, I wrote notes to my family. Again, my only source of pain was my leg and the bed sores that had developed while I was sedated. I turned out to be very prone to bed sores, hopefully John won't be as fragile as I was in that department. I was on a morphine pump that managed the pain but I still had severe pain in my leg. It was discovered on the third day of my being awake that the cast had been applied far to tight and had caused deep decubitus on the top of my foot and on my heel. Once the cast was off, the pain eased a bit but my leg was still very painful for a few weeks afterwards and it took months for the decubitus on the top of my foot to heal, and the large opening on my heel just healed up over the past two months. Healing in that area is compromised as some of the blood supply was taken along with the bone. I developed an infection in the incision the day I went home from the hospital, lucky me. Cleared up fast though.
I will warn you now that the most frightening part to me wasn't all the staples in my face, not the foot and a half long incision on my leg, not the drainage tubes hanging from my face and neck. It was the trach, it terrified me and kept me in quite a state the first few days. I felt like I couldn't breath well and it's pretty scary when it clogs with phlem. I can assure you that I was breathing fine, they would prove it to me with my 99%-100% oxygen saturation rates, but I still felt like I couldn't breath well. When they took the trach out it didn't hurt, was just very scary. But I was so darn happy to have it out I got past the fear, believe me. There is a hole left where the trach canula was and it isn't pretty to look at. It shrinks to a slit in a short amount of time but it takes at least 3 weeks to heal. I struggled with the trach hole healing up as the dressing you have to keep on is uncomfortable and the tape used to keep it in place irritated the skin on my neck miserably. But, it was minor compared to everything else. After the trach is removed, John needs to remember to put his two fingers over the hole when he talks, as it will promote quicker healing. The less air that goes through that opening, the quicker it will heal. I went through a spell of being very scared to go to sleep the first few days after they removed the trach. For some reason, I was afraid I wouldn't wake up, not sure why! My husband would hold my hand until I fell asleep, but I didn't sleep for more then an hour at a time for the first few days after trach removal.
If they use the bone from Johns leg he won't be able to walk for about 3-4 weeks. I used a walker or crutches, then went to a walking boot. Make sure the PT at the hospital comes to give some lessons on using crutches and a walker, it helped me alot.
Removal of the drainage tubes isn't comfortable but it's not horribly painful either, make sure you know when they are coming so he can have some pain meds an hour or so ahead of time.
The doctors will continuously ask John to "make a fish face" or try to whistle. They are testing for the condition of the nerves at the corner of his mouth. Mine were toast so I will never whistle again and will forever have a lopsided pucker, but I don't care. It's easy to adapt and adjust to and I don't notice it much any longer. I have no feeling in that half of my chin, that half of my lower lip, and most of the way down my neck. As I said, I barely notice it anymore.
My stay in the hospital wasn't fun as my care wasn't very good, stay on top of Johns nurses about his pain meds after they take away the morphine pump. My husband ended up staying with me every night and my mom or daughters during the day while he worked. I had a swallowing test done on about the 10th day and I swallowed just fine so started with some apple juice and puddings. Remember now, I had not had any radiation treatments at this time. It may be more difficult for John where eating is concerned. Three weeks after my surgery I was eating as well as I had before my surgery. Radiation is what affected my eating, not the surgery in anyway. The surgery also did not affect my speech. I do have some pretty intense stiffness right under my jawline on the affected side but I'm very used to it now. I also find that I prefer to sleep laying on the unaffected side.
My leg now is healthy but weaker then my other leg. I can't stand on that one leg and balance and I can't jump on it, it's not strong enough. But, I walk fine and can lightly run if needed. I've had some episodes of my leg being very painful after a day of extreme physical exertion but it had to be pretty stressful on my leg. A few extra strength tylenon takes care of it.
I tried to answer any questions you might have, but I'm sure there are hundreds more. Just send them to me and I'll get right back to you.
I wish you didn't have to deal with this and that I could take all the pain and fear away. But, that's not possible, so the very least I can offer you is the comfort that though this surgery is a challenge, it is doable and much easier to manage then radiation. At least in my experience it is.
Take care and let me know what else I can do for you.
Love,
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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Amy,

Ask about a valve that goes on the end of the trach so your husband can talk. When I had my trach, my ENT kept downsizing it every few days. After the first week, he gave me a valve for the end of it so that I could talk. As soon as that happened, I threw my wipe board out.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
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