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Daisy, just one more stage IV with mets to nodes person checking in here. That was four years ago and I am just finished with a head to toe check and there is nothing at all wrong with me. Many, many people go through the rigors of treatment and return to a happy life. More than you will hear from on this forum by a large factor. Always keep that in mind. You and your husband, too, can join that group. There will always be someone here to answer your questions, or just encourage you when you need it. In other words, we've got your back!

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I agree with Minnie. This guy needs to rethink his approach to patients, and more so the successes that we are seeing in the field these days. You have not posted back as to where you are being treated and what kind of institution it is.... but MDACC is one of the best in the world, and has resources that are not available in may other places. Time is of the essence, so you have to PUSH for things to get started as soon as possible. Don't accept delays while this cancer is growing. Doctor's schedules should not be a determining factor to you. Get another doctor or another facility if you run into scheduling problems with someone.


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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Daisy,we just got home today from John's 2nd surgery and our ongoing battle against this damnable disease. Remember, "it aint over till it's over" Being the caregiver and a wife gives you the right to panic attacks, anxiety attacks, fits of depression-whatever. Being a wife and caregiver also DEMANDS that you will be one tough cookie from now on and fight like hell for your hubby. There are alot of people here who will prop you up, teach you things you need to know and just "be here" for you. Read the advice above again- it's good. Stay with us and let us help. 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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Daisy,

I know things are coming fast and I am sorry for your news and the shock of it all. I am interested, too, in where you are in Texas. Even in Dallas, there is a good comprehensive cancer center, probably the next National Comprehensive Cancer Network member. MD Anderson in Houston will also do a teleconference with other doctors for an expedited second opinion.

Eileen's advice to take someone along on appointments is great advice. Your first doctor may have painted a bleak picture by a handful of words and it only makes it more difficult to think through and process all the doctors are saying when you are feeling like you were just kicked in the gut, as you describe it.

Arm yourself with all the information you can to help make the best decision possible. Find the team that you have the most confidence in and keep moving forward.

Best wishes,

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Daisy42 Offline OP
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Thank you for all the wonderful advice. I was concerned about the scheduling issue until we went to the oncologist's office this afternoon. He's the one who stepped in and got it scheduled for tomorrow morning. Apparently there was an issue with the insurance company and he knew how to make it happen. He made it clear that he wants to move asap, and also that he understands that telling somebody they get to wait another week to find out the answers we needed yesterday, just won't do. The fact that he seems to care about our plight made me feel better.

In answer to the question regarding the facility, it is the UT Southwestern Moncrief Cancer Center. They are involved with clinical trials and research, and their facility seems to include the major treatment avenues I have seen discussed here, IMRT, TomoTherapy and PET/CT Imaging. The oncologist, and I won't mention names as I understand that is a no-no, completed with a fellowship in Radiation Oncology at the University of Texas M.D. Anderson Cancer Center. They seem to staff a large number of cancer specialists from various fields, and from what I understand the conference where our case will be presented tomorrow afternoon will include a number of these specialists who aren't even our doctors yet.

If anyone has any comments about this facility I certainly welcome any input.

I'm sorry to go on so long, but we did go through a pretty big ordeal tonight. He suddenly decided for a while this evening, that he didn't want to go through any more. I know that may not make sense to most people, but, he has always been a man who has had an intense fear of needles and frankly hates doctors. I know, nobody really likes them, but he has a true aversion. It took a lot of what he called me really being an ugly word, to get him to commit to going through with the next few steps. He asks why should he go through this when he believes in the long run it will get him anyway. I tried to explain to him what I have seen here, that there are many people who have faced what he is facing and have come out the other side, looking forward to 5, 10 or more years of wonderful life. I threw every punch I knew tonight, but for a while I was afraid he wasn't going to budge. I even approached the subject that he might consider speaking to the counselor at the center and that was met with a very strong NO and that I was never to mention that again. I know based on some of things I've read here, that other caregivers have faced this type of response. But it is hard to fight his logic - it's his life and if he doesn't want to go through the pain - who is to tell him any different. I told him I was - and maybe it seems selfish, but I told him I thought he owed it to us, to me, to at least try - he knows he's not just my husband - but my best friend. I turned it around on him and said if it was me what would you do - of course, he says that's different. If he gives up, he dies, but if he gives up - I don't die - I have to live with it and I am not willing to do that.

Perhaps if some of you from the other side, could give your insight into what helped you decide to fight, decide to endure the pain and go on, it will help me know what to do or say to help him. He's only just begun, and based on the big picture, I know he hasn't been through a miniscule piece of the entire picture, so I know that tonight won't be the last of these battles. I found myself angry with him tonight, mad that he would even consider not fighting. Don't get me wrong, if the worst case scenario should come to be, I do understand his wishes to not pursue avenues that would only make the time he has left miserable. But I'm not willing to go there yet - until they can all tell me it's over - I refuse to give up - I just have to find a way to get him to refuse to give up.

Again, thanks for letting me bend your ear. Hopefully as time goes on, these epistles won't be so long. There just seems to be so much, so fast.


CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
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Daisy,
Believe me - I feel your fear. I had a very abrupt ENT actually get mad at me for not coming in sooner and that I should get my affairs in order because I had a highly advanced cancer and probably wouldn't survive 6 months. I then commenced to pass out in his liitle throne ENT chair. It was quite a scene - my wife was with me - the whole office stopped while they went running around looking for ammonia capsules. It was quite a shock initially, but then the survival mode kicked in, I joined OCF and lived on the internet for weeks gathering as much information as I could.

I send him a Christmas card every year just to remind him that he isn't always right.

To address your last paragraph; first, there is not enough diagnostic information yet to throw in the towel. The lung node could be scar tissue from a previous pnuemonia.

Pain can be managed and is a basic patient right. Since you are at a cancer center they will take care of that.

Not that any of this is a picnic but from my own experience I have had three years of life that I wouldn't have had otherwise and I look forward to many more.

I hated doctors, needles and all that stuff (I still do in fact)- I refused a PEG, getting my teeth pulled and I still survived - he just needs to get over the shock. From Hollywood and and various other sources it is all too easy to assume that cancer is an automatic death sentence but it is not and there are many, many survivors in the US today. My quality of life now is richer and better than it ever was before the cancer adventure.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Daisy,

I believe everyone has a right to chose their own course of action when they're facing cancer, even if it's not what I would do. That said, it makes me crazy to hear stories of people giving up before they even know enough about what the fight would be like. So I can just imagine what you must be feeling right now.

Lots of people have a very negative image of radiation and chemo. I know I did. Even though it was a grueling treatment for me, it was not anywhere near as bad as my worst fears about it made it out to be. And it was really from coming here that I realized that was probably true. I was an earlier stage and didn't have anyone give me such a grim prognosis as the first doctor you went to (and I agree with everyone else here that he was way out of line in how he presented things), I had the opposite problem which was I at first didn't see why I should go through such a grueling treatment when I ahd a decent prognosis anyway. It was really putting the treatment in perspective--yes, it was nasty but overall it was do-able and I had a lot of support--that gave me the courage to fight as hard as possible. As well as realizing that I would be at more peace afterwards knowing I'd done everything I could (which you might want to ask your husband about as he is weighing all this--how peaceful will he *really* feel if this disease does take his life if he didn't even TRY?).

I hope this helps and that maybe some of the other caregivers who post regularly here can come along soon and give you some support too.

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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Daisy, dear, guess what I found out? There's not a word or length limit on this forum! I'll repeat to you what a compassionate poster said to me--don't worry about thinking you're writing too much. That's what this forum is for! This is the safest place I know (besides prayer!) to say what you need to say and ask for help...or not. Venting is necessary to relieve the stress of this unthinkable situation, so go ahead, honey, and make no apologies!

Meanwhile, your attitude is great! I think what you told your husband is exactly what you needed to say. You have a balanced perspective on the end-of-life issues but it's too early in the process for him not to know he's not fighting it alone. If he were in his eighties or nineties with already compromised health, then he might be allowed to not consider pursuing the treatment measures, but only after he found out the extent of the disease and treatment options. As it is, you're right to let him know his life is worth fighting for. You're shaping up to be each other's heroes in this whether you asked to be or not. The selfishness would come if you weren't honest with him about how important he is to you.

This is my third trip. It's not squamous cell so it's behaved very differently. But I can remember thinking during the recovery of my first surgery almost seven years ago (when my boys were 2 and 3 and I was 32) that I wished I were dead instead of going through this. Eventually I was treated for chronic depression. I also remember hearing about someone whose surgery was to be "worse" than my first one and I thought to myself "I wouldn't want to live through that." Well this latest surgery in November was far more extensive than that one and here I am.

You asked what made those of us on the other side want to fight. Well, I'm not on the other side quite yet. I finished my fourth of thirty-three radiation treatments today. I will possibly never regain the ability to eat. I used to be a public speaker and singer, and unless by some miracle they can close my palate, and do some other anatomy alterations I won't sing again. But I've already had three speaking engagements and people just have to listen more carefully. I have alot of fight in me (which is another way of saying I've always been a stubborn, mule-headed little gem) and I'm at peace with where I am in this process. I have much to be thankful for. Why? Among other reasons, I have an incredible support system in my family and church. They did what you're doing. They loved me and wouldn't think of letting me quit. They stayed with me and took care of me and told me all the time what a good job I was doing of getting well. They allowed me to have bad days and reassured and encouraged me constantly. Love heals. And the more of it, the better. Isolation can be dangerous. But I knew every minute that I had too much to live for not to fight to stay alive. You're right that it won't be the last time you have this battle so gear yourself up for respectful, compassionate repetition.

And know you can count on us to be a help and a sounding board for you any time.

Ruth


Ruth E. Moran
dx minor salivary gland adenocarcinoma 4/99, resection 5/99;
rec 1 lymph 2 cm 7/03, mod. rad. neck resec. 7/03;
rec primary 10/05, resec, pec flap, PEG tube, IMRT 2&3/06, Osteonecrosis right mandible removed
1/08 metastatic lung cancer, 3/08 clinical trial MD Anderson
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Daisy - Your husband's comments about giving up make great sense to me. I was given a similarly bleak picture when diagnosed three years ago. There was no point in putting me or my family through a grueling treatment. Its expensive, it can be painful, and its frightening. Why not just hold my head up high, and stride bravely into the sunset. My time has come. Its noble. Its a quick solution. It made sense to me. I even considered driving my car into a bridge abutment. Nothing anyone said to me changed my view.

Then, I realized it was fear. The fact that I had the BIG C was overwhelming. I had watched my dad die slowly and painfully of cancer - rotting away by inches for months. Horrifying. Everyone who gets cancer dies. Right? That was my belief.

My oncologist listened to my very rational argument about NOT having treatment and just dying with my dignity intact - head held high. Then he proceeded to tell me what dying of this type of cancer would be like - nothing quick or noble about it. He suggested I would spend months on massive amounts of narcotics to ease the constant pain, too weak to take my own life, but aware enough to suffer. The man had my attention. Then he told me about treatment.

There wouldn't be any guarantees. Its not easy, but very manageable, and the "possibility" of a good outcome. The "take my cancer and die" choice had only ONE outcome possible. This treatment he described had TWO. I like options. The idea of "beating" the treatment and winning the war was a challenge. I like challenges. Might win, might lose - but it would be a glorious battle.

Your husband is a warrior. A brave and practical man. His fears and concerns are deserved. What he lacks is options. Put him in front of more competent docs. Get him to listen to them. He will come around and fight. There is nothing so satisfying as thumbing your nose at those doom and gloom docs. Get him in front of docs who really know this disease.

Get him in here with us. Have him email me. I'll talk to him. He is afraid and he should be. As that lifts a little, he will come back out and fight. We all did, and we are many. I'll send you a phone number where he can call me if you want. Email me. Don't worry about your warrior not fighting. He will. He can do this. You can do this. Let us help. Be strong. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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Daisy42 Offline OP
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Well, we got the news this afternoon. The nodule in his left lung is in fact cancer. The good news is that the PET scan did not find cancer in any new places we didn't know about. Now its down to finding out if the lung cancer is a metastasis from the tongue/lymph nodes or an unrelated cancer. The only problem is they said if the lung is also squamous cell, they probably won't be able to tell if that came from the tongue or is an unfortunate separate case of cancer. I don't know if that really makes any difference on treatment, other than if it is some type other than squamous in his lung it might be easier to treat.

We had some really good conversations this evening though and I feel a little bit more hope in regards to his will to fight. Maybe it will take a little background to help explain, but as I've said before, he has a true aversion to needles/hospitals. Show him a needle and it doesn't take much for him to pass out. He had a bad experience when they did the biopsy which was confirmed by his ENT this evening. Apparently when they pulled the tube and woke him up, something locked up and he couldn't breathe. He woke up with people screaming at him to breathe but he couldn't. Needless to say, they managed to get him breathing again but it really scared him. The other bad thing that happened was his doctor got tied up on an emergency case, so the wait for everything to start was much longer than it was supposed to be, so his anxiety really heightened.

Anyway, back to our breakthrough tonight. I found out that he's not really afraid so much of the side effects of the treatment. He's afraid of the things leading up to the treatment. They are going to have to do a needle biopsy of that nodule in his lung, he has to have his teeth pulled by the oral surgeon (they are really bad and it was something that he had been putting off before this happened.) In the conference today they mentioned the PEG tube and a port for the chemo. We've talked about the severe side effects from radiation and chemo - that's not his problem. It's the steps to get him there. I know that the needle biopsy is not done under general anesthesia, but it's going to take something stronger than the Valium they gave to him before the PET scan.

Frankly, he has told me - if he is going to go through with this, then they are going to have to give me something he can take before we leave home. I know patients have rights about pain control - but - is there something they can give him, or can I be insistent that they give him something for his anxiety? It's kind of ironic - he's been a peace officer for many years - shoot at him with a gun, do any number of things and he's not bothered - but mention the needle biopsy of his lung and he'll turn ten shades of green in nothing flat. I know that you folks know by experience, that these things he's worried about are not the biggies - but that's where he is right now and if I'm going to help him get through this, then I have to be able to assure him that we can insist that he be severely sedated for lack of a better word.

I am going to speak with the doctor about this on Monday, but if any of you have any experience/suggestions on what I should request, I'd appreciate your input.

Thanks again for your responses. They have been very helpful to me and to him. He hasn't been able to come here himself, but, he has been appreciative that I can answer some of his questions based on the words of those have been in his shoes.


CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
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