My husband has tongue and neck cancer. He has been through 9 weeks of radiation therapy and 3 rounds of in-hospital chemo since the end of January. After finally completing these processes, he has now had a CT scan and biopsy. The ENT surgeon tells us there is no option of surgery as the cancer surrounds his carotid artery and the surgery would be too dangerous. Of course, we are devastated as this means there is nothing that can be done at this point! I have an appointment at University of FL with an ENT there to get a second opinion. Has anyone ever experienced this and do you have other suggestions? We were so hopeful that the aggressive approach of chemo and radiation first would be successful and now to have our hopes dashed. My husband has done so well to cope wtih all of the problems, PEG tubes, Mediport, weight loss, pain, etc. He suffers the most from the ear pain and there seems to be no relief for that. Our ENT is not very responsive to talking -- following the biopsy, he was in such a hurry and I basically had to tell him that he had just given my husband a death sentence and I thought he could spend a MOMENT to discuss it with us. That stopped him, finally, and he stayed the length of time we needed. There are still so many unanswered questions though and I don't feel he will give us any positive feedback. So, I'm turning to all of you for suggestions and comments. It appears, from the biopsy/ct scans, that the cancer surrounds 2/3 of the back of my husband's throat and the back 1/3 of his tongue. Since radiation/chemo, he is speakingbetter and does not have much throat pain; more the ear. I have asked the ENT if there is something to be done for that and he only suggests pain medicines. These do not help -- they take his mind off of it but do not decrease the pain as it is the nerve signal, not actual addressable pain. I have asked about a pain management approach such as I had for my neck some years ago with a cervical epidural and the ENT has no suggestions. This is my next call, to a pain management specialist. Any comments or suggestions will be welcome. We have had such a wonderful oncologist and radiologist and now to find that the surgeon is not responsive is disheartening to say the least. Thank you.

You should seek another opinion. Ask your ENT to provide some names. My surgeon expected that I would want to seek a second opinion. I ended up at MD Anderson.

I thought a radical neck dissection took all organs from the neck, maybe it's just the jugular vein they can take and not the carotid. My dad has total blockage on one side of his neck so it seems you can get by on one artery.

Good for you telling the surgeon to spend more time with you.

I had a pain management team to help with pain from my free flap from my thigh. That was the worst pain I had ever had. They gave me a pain patch that I could also use Hydrocodone with. Durgesic patch is what it's called. It really did normalize the pain for me.

Have they positively said that the radiation and chemo have decreased the tumor size? When is your next scan. How were the lymph nodes? In my experience I would also ask for a chest CT.

Lynn

I got a second opinion for UF at Shands and they were wonderful in explaining and giving me in one day after seeing many doctors my options. I choose my treatment in tampa by mu house but luckily they both gave me the same opinion and I was condisdering UF because they were so good.

Millie,

Click on "Introduce Yourself" in the main menu and go down the topics about 2/3 of the way to a post from "traceemail" that has the title "My mom" her mothers surgeon was in Florida and several other doctors told them the tumor was inoperable and she found a surgeon in Florida that was able to remove all the cancer with clear margins even though it was attached to major veins in the neck. Her post gives lots of information that I think you can use.

I hope this helps. I have read practically all the posts on this site and when I saw yours it reminded me of her situation.

I will be keeping your family in my prayers. Don't give up, get more opinions....but do it quickly.

Danie

Thank you all so much. This gives me some hope. In reading so many of the posts here, I see such a large volume of success stories and just can't imagine that there would be absolutely nothing to be done. I talked to the oncologist yesterday, who has formed a close bond with my husband and he is working on an appt at UF for next week for us. Thank you, Lynn for the information on the patch -- I'll contact the pain management doctors here today and see if we can't move on some relief for him. The oncologist and ENT both seem to think Oxycontin is the only thing that may releive the pain but my husband refuses to go with that strong a narcotic as he wants his mind as clear as possible. He is getting by with Aleve and Percoset (in small doses) but still has the constant pain in the ear. Again, thank you all so much. Danie, I'll go right away to the Introduce Yourself area and read the post there. It just makes my day to have some positive support right now. Bless you all.

Once more. Danie, I read the post and this gives me much hope! Sounds like the patient there had been given about the same options as Rusty (my husband). He has been depressed about all of this, as is certainly understandable (I have been, too) and has been somewhat resistant to the "keep looking for an answer" that I keep pressing. I have printed out these posts and will show them to him tonight, they should certainly give him the optimistic feeling I have gotten from them! We have been lucky that the oncologist is so very willing to take time and is so empathetic; you have to respect these physicians for the hard work they do. Thank you all again and I will check back in with I have more info. If anyone knows particularly who at UF Shands is the "BEST", I would appreciate the information.

Millie

Millie, first off, oxycontin in small doses never affected Frank mentally except for making him happier. last year we were faced with tumor close to carotid, doc said if we can`t do surgery, he`d be dead in a couple months. He had the surgery, and they handled it by tying his carotid artery off below the tumor. Understand, they need to do tests to see that the other carotid provides enough blood flow to the brain..............i`d get a second opinion........Dee

Second opinion is in the works, Dee, thanks. I'll keep in mind the oxycontin issue. Unfortunately, my husband's partner in his band died of an overdose of this 2 years ago so I think that is his main objection to pain medications in general, oxycontin in particular. Of course, he abused the drug but it still creates a big rejection factor for Rusty. After discussing with others, I have decided to go ahead and fill the prescription and, if needed, he'll probably change his mind about it. Thank you, though, for responding and easing my concerns.

Millie,

I am sorry for all you are having to deal with right now. I am glad you have already had so many good responses to your questions. I am hoping and praying God sends you exactly where you need to go for Rusty.

Ed

Hey Millie,
Sounds like your hubby and mine have a lot in common. Dan started with tongue cancer, surgery, mod. neck dissections. Nodes taken were negative, so no radiation. Never had anyone even suggest it. Too bad I wasn't familiar with this board at that time. 4 months later Dan has a neck tumor, radical neck dissection on Christmas eve. The oral surgeon (who by the way was also cut and dry and not extremely helpful since the beginning) couldn't get all the tumor as it was around carotid and jugular. He also said no surgery options, so we were referred to U of MD and a great oncology team with a tumor board. They did 8 weeks chemo/rad and things are good so far. Did your husband have a radical neck dissection for his chemo/rad treatments? Dan's oral surgeon didn't know the extent of the tumor until he did the radical neck dissection.

Also, Dan was having extreme facial pain from the tumor before treatments began and they prescribed Neurontinfor Dan which he still takes and it helps him. It doesn't make him foggy, either. He has been on the Duragesic Patch since treatments began...started at 25 mg. and ended up at 100 mg....has moved down to 50 mg. at this point. Intermittently, he also used Hydrocodone. He would sleep a lot during those last weeks of chemo/rad, but he needed to as it was max rad. and took so much out of him. The patch has helped Dan a lot and he doesn't sleep at all or very little during the day now even though he still wears the patch and still uses Neurontin. I also read the post about the mom who had surgery...Dan and I were a little disappointed that we had been told there were no more surgery options available after they had done the radical neck dissection.
Hope this helps and my prayers are with you!
Debbie

Thanks, Debbie. Rusty has had no surgery so far. He had 45 days radiation and three in-hospital 5 day stays for chemo. The problem now is the ENT stating, after the CT scan and biopsy following rad chem that there are no surgical options. I did ask the Oncologist about the Neurontin and he has prescribed it -- will pick up today and maybe this will help more. We are headed to Shands in Gainesville for a Monday appt and hope to have better options from that visit. Thank you all and I will check in next week with a report (and probably many more questions!) Bless you all with happiness and continued health. Millie

Millie,

I wish there was something I could do to pep you up a bit. I can't dance, I can't sing anymore, I don't tell very good jokes...I just hope you have a g-r-r-r-r-r-e-a-t day today! I am sending love and kind thoughts your way and I hope Monday finds a miracle waiting for you and Rusty. You are both in my prayers daily.

Ed

Millie:I don't know what cancer center you're at, but I went to UMSylvester at Jackson Memorial which is recognized as one of the best in the country. My Doctor, Dr. Arnold, spent an extra 1.5 hours removing tissue from around my jugular and carotid arteries due to an unusually large muscle which was in the way. You might want to get a second opinion from him. His # is (305)243-4734 or speak with Lola Gelabert, his assistant. His only job is head and neck surgery. Regards, Kirk Georgia

Kirk...We have tried to make a policy of not giving out doctor's contact information publicly on the boards but rather encourage you to do this privately by email or private messaging through the board. I know that you are new and this is written anywhere, but sometimes the numbers posted create havoc for the doctors on the other end. I will leave this up for a day or so until you let me know that you have contacted Millie with the information.

Hi, all. Well, has been a while since I posted. We went to Gainesville for Rusty's second opinion. Got the the hotel the night before the appt and he started coughing blood. Three surgeries and three weeks in ICU later and he's stabilized and back home. Apparently, arteries in his throat damaged by radiation and chemo burst and caused the extreme blood loss. Long story but the short of it is he's ok. Has a trach now to allow the throat better opportunity to heal from effects of rad/chem. Will probably stay in place at least 2 months and then we'll see how the throat looks. The good news is the 2nd opinion was much more positive than the 1st. Apparently, the cancer is under control from rad/chm and he is not terminal, as the first dr stated. He will continue to be watched and treated and I and everyone else will continue to pray that the cancer stays at bay. So, as we all well know, prayers are answered! I spent many hours in Gainesville on a kneeler (think my knee prints are permanently imbedded on one) but they certainly were answered. Thanks to all who have replied. We did get the lidocaine patches and fentanyl patches and they really help his ear pain, helping him to stay off the pain medication better. Now, time will tell. Get that throat healed and put some weight back on him. This week, for the first time in months, he has been interested in leaving the house and seeing the outside world. This is a big step as it shows some of the depression is lifting. He, as all of you have, has been through so much. I just got off the phone with a close friend with esophagus (sp?) cancer and she is trudging through the weakness and sickness, too. My prayers are with each and every one of you. Millie

Millie,

It's great to hear that you have such good news, and that your husband is sensing some improvement. Sometimes it seems as though the recovery process is taking forever, but if he can gradually work some of the "normal" things back into his life, hopefully his spirits will continue to lift.

Hope you can get a bit of a breather also -- this is so hard for the caregivers as well.

Cathy

Millie
Thanks for sharing your news.. you have obviously had a rough ride.. but so pleased that you can see some light at the end of the tunnel..
prayers... love and hugs
Helen

Millie,

I am glad God found where you needed to go! I am so sorry things got so intense for you for a while there but glad things are looking a bit more promising than when you first went in search of your second opinion. May God continue to bless you!

Ed

Millie ..great news, is it not amazing what a couple of months and some great advice can do. Hang in, you have been a trooper during all this and remember, look after yourself too.
We caregivers can get burned out, exhausted and near to collapsing before we realise it.
May your God go with you.
Marica

Hi, all. Haven't checked in for a while. Miracles do happen, though, I want everyone to know! Rusty has been steadily getting back to normal. The news is still good; he just needs to put his weight back on. He had the trach removed in early July and another good ct report. He immediately began eating orally (first time since January) and has been eating constantly ever since! Of course, he has problems with certain foods but has been very fortunate in not losing much of his sense of taste. His brother sent him 24 pints of gourmet ice cream and he ate 21 pints in 7 days ... hmmm. Going for PEG tube removal TODAY !! We have been so very fortunate throughout all of this and, of course, it's not over, but we are seeing some good changes. Rusty had a tough week last week as he took himself off of the duragesic patch "cold turkey". Was a tough week for him but he's through it now. Is down to medium-level doses of pain medication an is working with a pain mgt doctor on ear pain. Making slight progress there. The real miracle is that he's singing! I don't know if I mentioned it in earlier posts but he is a singer by trade so this was especially frightening to him, with the chance of losing his voice. He has been back to work over the past few weeks. Doesn't sing as many songs but is playing and singing about 1/3 as many. We had a huge welcome back party for him last Saturday and his fans and friends just made it so special. God looks after us all and has certainly been watching over us these past months. Thank you all for your support and I will check back in as time goes on. I keep a list of folks from these forums to pray for and hope that my prayers are answered each day. Mother Theresa once said (probably not the exact quote here ..) God only gives us what we can handle; I just wish He didn't trust me so much. Millie

Millie!
Such great news to hear!!! Please give Rusty a hug for me! I wish I could hear him sing! Hope you are eating some of that ice cream too! You have such inner strength and are such a support to Rusty -- God has certainly answered your prayers. Try to make it to Las Vegas for the reunion in September, it sounds like they are putting together a jam session. Bring the whole band and we'll all sing!!!! - Kris

Millie,

Thanks for sending along your terrific news! Getting back to eating and singing are great milestones. Congratulations to you and Rusty!

Cathy

Millie, what wonderful news. Its so nice to hear good news here as some of it is not so good. Its nice to balance it out some. You all will be in my prayers for health reasons and also that TS Bonnie doesn't drop too much rain. Hopefully, Hurricane Charley will miss you as well and you won't have a double wammy.

Hi Millie,

Thank you for the great progress report. Sounds like Rusty (and you) are getting back to "normal" or at least settling into the "new normal." I went back and read your initial post and it was so dismal as the prognosis was so dreary but here you are today posting such wonderful news with Rusty achieving such memorable milestones as eating and singing! May you continue to build on many more thankful memories to share with each other and those around you. Thanks again - you made my day!

Hugs, Nancy

Millie,

God is so awesome! Your story is so full of miracles. It is so wonderful to see where things are in your and Rusty's life compared to your trip to Gainesville. May He continue to shower you with blessings.

Ed

Oh Millie this is wonderful news !!! I am in tears here. Thank you our precious God for listening and answering our many many prayers of our brother Rusty. Oh how happy I am for the two of you . The song that comes to my mind is Oh happy day, God Bless, Miss Vicki

Hi, All. Has been quite a while since my last post. Being in Pensacola, we were dead in the line for Ivan the Terrible and this has added to our list of things to do! Our house survived and is livable but needs a new roof, etc but we lucked out there. Rusty had mod. rad. neck dissection on left side (not original cancer site) Oct 8 and is undergoing radiation to nasopharynx, which they found using PET scan and CT. Not good news but could be worse. He's still holding out. Is back to having trouble eating due to the tumor on one side, surgery on the other, and radiation above but is managing to hold his weight and hasn't started losing again (was still 40 pounds "down"). He's determined not to get the PEG tube again so is subsisting on lots of potato soups, milkshakes, etc. He's still singing on weekends with help from friends (voice gives out quickly, of course) but is basically keeping on keeping on. The original tumor site was still clear on Oct 8 -- that was an answer to a prayer. We have found an ENT here that we like and trust and who lays it all on the line, just what we needed. With all of the horrors of our Gainesville experience, I promised God that I would not beg for him to heal and save Rusty but that I would thank Him for every day he gets to feel normal. God has more than lived up to my prayer and Rusty has gotten better and better each day. His outlook is brighter, he's much less dependent on pain medications, and is still fighting the fight. I apologize that I haven't been on the board for such a while and hope this finds many of you improving and getting better each day. With all of the obstacles each cancer survivor faces, it is simply amazing at the endurance human beings can come up with when needed. Each of you have held my hand and held me up through some tough times and I greatly appreciate it and will keep each and every one of you in my prayers. Will try to write again sooner. Millie

Hi, all -- just a check in and report -- hope everyone out there is doing ok. Rusty had mod radical neck dissection on the OTHER side of his neck in early October. A PET scan found cancer in his nasopharynx so he is currently undergoing yet more radiation for that. Otherwise, he is doing fine. The neck dis with the immediate radiation has made his eating ability drop to soups and ice cream again but he's not discouraged and is continuing to play with his band every weekend. The hurricane hit us hard and his normal place of employment was destroyed so they are traveling to New Orleans each weekend for work. He's not able to sing much as his voice gives out quickly but we are just so thankful that he can play and, once the radiation is done, again, he can sing again. God keeps blessing us with continued answers and help and we keep calling on him for those blessings. If there is a "good" thing about this cancer, it's that it brings us closer together and closer to God. Thank you all for your support. We have been fortunate in that one of Rusty's nurses during all of his chemo at the beginning of last year has become a good friend (he also plays guitar and sings), so Rusty has a built-in educated support group! George, the nurse, is a constant source of back up for the doctors and myself in providing empathy to Rusty. With some hitches along the way, we have finally found a full group of doctors who are all on the same page and who all are committed to helping Rusty down this road. You all help me -- you just don't know how much! I come to the site and just read some days and know how many people are going through what we are and know we're not alone. God bless you all and I hope everyone has a safe, healthy and happy holiday -- will check back soon! Millie

Millie,

I am glad to hear you are getting the answers you were looking for. It sounds like you have been blessed in so many ways, especially in your relationship with God. Call on Him and He will be with you through anything! Thanks for the update and I am wishing you and your family a very Merry Christmas!

Ed

Thank you Millie, And all good things to you as well!

Ok, I'm back yet again! Haven't had much time to post or read posts lately. Rusty finished radiation to nasopharynx around Christmas. Felt very good following that and continued to work until weekend before last. Two areas from neck dissection haven't healed and were worsening steadily. Returned to ENT and he said, "more cancer" -- did a biopsy (and we spent two miserable nights) and found it was just the break down of the wound like I had thought. Another prayer answered! However, since then, Rusty has had severe, debilitating headaches. Cannot seem to function each day and they are only worsening. Saw radiologist last Thursday and he says is probably mucous (sp?) from radiation to nasopharynx plus tension on head from other muscles compensating to hold his head up since neck dissection. Gave him muscle relaxers to help. They have done nothing and he has now resorted back to the duragesic patch. This, however, nauseates him terribly so he swaps back and forth -- either throw up or have a headache. Have another appt with ENT today and we'll see what progress can be made. Has anyone experienced this and, if so, any suggestions? We're at ours wits end: no sleep for almost 2 weeks, nausea, you all know the story. If no direct help today, I want to move to another opinion, yet again. Rusty has had a full year of misery with only a couple of weeks respite and certainly deserves some relief! Radiologist says no exercises, etc until neck has had a chance to heal from both dissection and radiation. Any advice/info would be greatly appreciated!
Mark: I look at your "biography" and know it's possible to beat this! You're almost 4 years out and still kicking! Please post some advice as you've certainly been there and have probably experienced some of the same issues.
Thanks all and I'll check back tomorrow. Millie

Millie,

Have you tried an NSAIDs? Any narcotic type pain relief for headaches will usually make it worse, assuming the headache is from tension or muscle issues. Anti-inflamatories usually help more. Bextra is great if you haven't tried it.

With the patch or any narcotic type pain medication, anti-nausea medicine should be taken with it. One of the key benefits of the patch is that once the body adjusts to it, much of the nausea and higher dose specific headaches you get with short acting meds do not occur with the patch. Alternating with the patch and without will usually make it less effective in terms of loopiness, nausea, etc.

Ed

Millie
Ask the Docs about amtripaline sp? an older antideppressant with an unusal side effect of relieving headaches, my Mom takes them, no oral caner but they work for her.
Sunshine.. love and hugs
Helen