Has anyone on this board survived a 4th recurrence? Im so scared that this is it for my Mom. And Im home by myself today so Im just festering and thinking the worst and crying while trying to clean because shes coming to spend the night tonight. We have to wake up super early to go to DUKECCC. We have an appointment with the chief of staff.
SHes so tired, shes in so much pain. Shes developed some cough. Is it possible to overcome this? It just feels like we're slowly being tortured

Anything is possible! I'll be praying for you and your mom, I can't even imagine how you two must be feeling.

There are many on here (Christineb for one) that have had multiple recurrances and are still in the fight. In Christine's case there were literally no "breaks" between recurrances.

As I've said on these forums many many times (and many agree with me) that the caregiver's role is the hardest job on the planet. With that being said, make sure you are taking care of yourself as well as your mom.

Best wishes, my heart goes out to you and your mom.

Eric

Carol L is another who has faced multiple recurrences and is still here.

Thank you guys. We're headed out in the morning. Shes in a lot of pain tonight...Im hoping they just admit her and keep her there. Managing her pain with percocet isnt working

Ive had OC 3x in 3 years. I have had the all clear between each episode. I was Stage I the first 2 times and Stage IV last year. Thanks to my OCF friends around the world praying for me, Im still here. I may look a bit different and have tons of after effects, but Im leading a happy life. It can be done!

Ask the docs for the fentanyl patch. Its much stronger than percocet and lasts for 72hrs. Then they can give something else for days when she has breakthru pain. Nobody should have to hurt, it doesnt help anything only makes things worse.

Please add a signature line so its easier to respond to your questions. Its located under the My Stuff tab, then profile and write in the box on the bottom.

Well they just sent us the hell home. said theres nothing they can do. to set up hospice. im at a total loss

I'm so sorry. What exactly did they say about your mom?

he said she had dermal metastasis

he didnt offer any alternatives either. he just basically said youre fucked and youre gonna die. we couldnt even cry. i think his resident didnt even fully agree with him.

christine - im not sure what to put in my signature. everyone has all these codes and im not sure how to sum up what we've been through in abbreviations

Dont worry about being too technical. Im not that great with the codes even after hanging around for a few years. Write whatever you feel is pertinent.

Honey, I hope this helps.
My husband has survived three recurrances.
His initial diagnosis was August of 2002 with stage III tonsillar cancer.
Two weeks shy of his 5 year mark, he was diagnosed with base of tongue, stage IV.
In 2009, it showed back up, stage IV.
Three mths later, another stage IV recurrance in 09.
He is working, cancer free, and giving us all the grief he used too!
Don't let anything get in the way. Especially the odds. They don't mean a damn thing!!!!!
My prayers are with you,
Mandy

Emily,

2nd opinions = prudence. Make sure you are getting the best medical advice available before making any decisions...Dr's, contrary to their own beliefs, are not God's even though they have the complex. Get a 2nd or 3rd.

Emily, I agree with Eric, 2 opinion, don't give up without a fight!!

thank you all for the support. it has really helped..especially this morning. we aren't giving up.
the more i think about that 'chief of staff' the more heated i get. he was such an ASS. no sympathy. my mom even aplogized to him saying 'i know this is a hard part of your job' and he just shrugged and said 'well i do it everyday'. he made us feel like it was our fault we're in this predicament because we didnt go to Duke first.
i told him i didnt mean to be disrespectful but lots of people see Dr's like him and hear 'theres nothing i can do' and then they go on to another hospital and are treated and cured. he said 'well youre welcome to visit another hospital in houston or hopkins but i know those guys. theyll agree with me.' he was in and out of the office in 5 minutes. we just left crying with heavy hearts feeling like it was over.

as soon as i got home i tried to make an appointment with MD Anderson. yesterday was a difficult day to do with it being Friday. they lady said if i didnt hear back from her yesterday, shed call me Monday. i guess we'll be flying out there as soon as possible.

thank you again for your positive thoughts. i really need it. i just turned 25 years old..i just got married in november. we were going to start a family but i dont even want to without my mother here to share the experience with me.

coley, that sounds an awful lot like us! what hospital was he treated at?

I wonder if Duke's Chief of Staff is my MO's brother.

Every time they switched me to a different CCC treatment facility they changed out half my doctors and the MO I got at the Tomo Center had zero bedside manners.

At times a real Doctor "Death", although he didn't come right out and "personalize" it (like his "Duke" brother did!). Nevertheless early on, seeing him was down right depressing; but he was a brilliant old fart and I managed to adapt!

Fortunately the rest of the staff more than made up for his shortcomings.

Now-a-days I rather miss the old fart, remember him fondly, and was surprise to learn he always "peer" ranks among San Diego county's top 10 MO's.

So Emily, move on to MDA and don't let a doctor "Death" here and there detour you.

Youre so right. Ive let my mom read some of these replies. Its comforting. Maybe it was a sign we weren't supposed to go to Duke so god shoved something up that mans butt before he walked in to talk to us.

This morning she got dressed and headed out to a friends bridal shower. Shes still gone! I know shell be exhausted when she gets back but Im glad shes still living her life. Does this look like a lady thats ready to lay down and accept hospice?! I love her so much
[img]http://sphotos.ak.fbcdn.net/hphotos...534038816_333501052_653856_5355401_n.jpg[/img]

Emily, your mother is beautiful She is so lucky to have such a loving daughter.

Wow, she looks great!

thank you. she was very weak eyed this evening. they almost looked foggy. and shes developed a cough. im trying to be optimistic but in my heart i feel its not right. im still going to exhaust every avenue before this damn thing is over

Emily, you remind me of my daughter. She is 27 and just getting started in her adult life. I remember when I was in the heat of my 3 surgery's to remove the primary tumor and even though I couldn't and didn't feel like company or visiting she would come at least once or twice a week and just sit with me... She didn't expect anything, she just wanted to be with me and it meant so much to me to have her with me. Your mom is so lucky to have you there for her. At the time, I couldn't figure why she wanted to come and I almost felt like I had to entertain her or talk, but she just sat and held my hand and we would just watch tv or she would clean up a little for me. But what a blessing. So I just want to thank you for being there for your mom. And to let you know how much it means to her.

Lucky for us, I just live one town over. Her house is only 20 minutes away. I teach Kindergarten at a charter school and we are out on our summer break (6 weeks). Needless to say, I plan to be here at her house for a while. My husband is so good to us - hes been here right along with me, making the extra commute to work..going to Dr. appointments with us. She told me last night as I lay in her bed with her to go back home this weekend..that I needed to feel some normalcy. But to me, this is my 'norm' now. I couldnt imagine being at home - Id only be thinking of her anyway and worrying how she is doing.
At the same time it is bittersweet because I feel like I can see every little change in her. Sometimes I think it's better and sometimes it's something getting worse. It's maddening

Hi emily
I was intrigued by the diagnosis of dermal metasteses so i did some research and came up with this article.it would seem as though the prognosis may be poor,but there are some options.
[quote] In most cases, cutaneous involvement is the result of a direct extension of extranodal carcinoma into the dermis and the dermal lymphatics. This is not an uncommon finding in patients who do not respond to comprehensive treatments. However, metastases to the skin from a primary tumor in the visceral upper aerodigestive tract are quite rare, occurring in fewer than 2% of all visceral carcinomas. The scalp is the most common site of metastasis, but because examination of the scalp can be difficult, many of these lesions are diagnosed late. They usually present as multiple, firm, painless nodules. The presence of dermal metastases signals a poor prognosis because the lymphatic distribution in the skin is poorly understood. Wide local excision is often combined with adjuvant radiotherapy (i.e., external-beam or implant therapy) in an effort to eradicate tumor spread or palliate symptoms.

Suggested reading

Marioni G, Doro D, Marino F, et al. Skin and eye: Uncommon sites of distant metastasis from tongue base squamous cell carcinoma. Acta Otolaryngol 2003;123:1110-

O'Donnell M, Whitaker D. Clinical evaluation of tumors of the skin. In: Thawley SE, Panje WR, Batsakis JG, Lindberg RD, eds. Comprehensive Management of Head and Neck Tumors. Vol. 2. Philadelphia: W.B. Saunders, 1999:1222-43.

From the Head and Neck Cancer Center, Cedars-Sinai Medical Center, Los Angeles, and the Department of Otolaryngology, Charles R. Drew University of Medicine and Science, Los Angeles [/quote]

yes i know what it is. he made sure to clarify by telling us to set up hospice asap. i guess we're just hoping by seeing a different doctor this week we'll get some more hopeful news

the dr at duke told us he could do surgery but theres only have a 20% survival rate - assuming she really does have dermal metastases. our thoughts were, "AND?!" if there is an option for surgery to remove this we are gonna take it. someone has had to of survived for there to be the 20%

Hi Emily,

Try to be positive, I've had 3 seperate OC cancers (5 if you count my lymph nodes seperately) and last time around I was initially told my bilateral lymph node tumours (6 in total) were inoperable. After going to the tumour board they decided that a combination of surgery (to reduce the size of the tumours together with radiation & chemo to both sides of my neck may offer me a slim chance - about 10%). Because they re-radiated areas that had already received maximum greys they were reluctant to do this and I had to sign numerous disclaimers.

While I have some significant side effects I have beaten the odds so far. I was told without treatment I would not have seen last Christmas! Although I am going through some tough personal times I am grateful for every extra day!

If she has a 20% chance go for it! I am proof that the odds can be beaten!

Wishing you and your Mom all the best!

Sue

sue, thank you so much for sharing that. we needed to hear something like that his morning. we have an appointment in a couple of hours to see what her dr thinks. i hope he doesnt give up on us

Anxious to hear from you re this am appt. You are in my thoughts and prayers.

Hi Dodie! We actually had a somewhat positive appointment this morning - I guess as positive as can be. Needless to say her Dr couldnt believe the manner in which we were treated at Duke. He absolutely didnt believe it was dermal mastatases. He says the tumor is in the right mandible and jaw line..same place it always seems to come back at. He said this surgery will cause her face to be very disfigured - practically losing half of her beautiful face. We are prepared for that. I just want her to live.
He felt confident in doing the procedure himself but was totally onboard for us going to Houston and he set us up with all of our records and faxed everything over.

He also sent us to an oncologist that we LOVED. She finally got on the pain patch (only 25 mcg right now so its not doing much) morphine and something for the shooting pain in her nerves - I cant remember the name of it. As of now none of it seems to be working although she went from 9am to 4pm with NO PAIN MEDICINE. Shes exhausted and cant go to sleep. Hopefully the stuff will kick in soon.

Anyway I am much more hopeful today and excited about going to Houston. Thank you for thinking of us!!

Thank goodness you just didn't sit there and accept what that Doctor told you.

The picture of your Mom is beautiful and she surely raised a beautiful daughter!

Emily I am so glad that you have some hopefull information, and more resources to look at. I will keep your mom and you in my prayers. It makes you wonder how some doctors can even be in practice. Especially when a few weeks could have such an impact on life and death. It just really makes me angry that a physician could be so wrong and so beligerant and have 0 reprocussions for his misdiagnosis and attitude. I just can't believe it. Sorry I will quit ranting.

I thought Id call the hospital and see if I could report him but, seeing as he's the chief of staff it's probably all politics and it would be pushed under the rug. What Id really like to do is write a letter to the News and Observer here (newspaper). But really, I have too much on my plate right now and need to concentrate my energy on positive things. I just feel for his patients that may not have family and receive the same news and go home and accept that 'this is it', as he would say.

Thank you again for all the positive support..its helped me get through an awful week

Emily,

I've been following the story of your mom and I'm glad you got a better report today. Don't give up hope and I'm glad you are seeking other opinions. I recently had a recurrence and sought 3 opinions, and they varied greatly (and so did the doctor's bedside manners).

I'll keep you and your mother in my prayers!

Hi Emily,

I'm glad that your Mom is now being offered a treatment option and that the odds actually sound better than what they were when given by Duke. The Doctors can also work wonders with Plastic Surgery and prosthetics so the surgery may not be as disfiguring as you'd imagine. Hang in there and stay positive! Sounds hard to do in the circumstances but it is amazing how much better you feel when you have hope.

Keep us updated, there are alot of people sending positive thoughts your way!

Sue

Oh Emily, I just read your post abot the great appointments you have had. How could I have missed those? Excellent news about the surgery!!!! Im so happy you found OCF and took the advice to get other opinions.

The surgery you are talking about is similar to what I went thru last August. My lower jaw was removed. It was not an easy time at all. At times I wished I had never done it. Now my face and neck are disfigured and people stare. Now that Ive told you the worst of it....I am so happy its behind me. Sure I dont like looking funny, but I love being alive Im almost back to 100% and recently went back to work part time. My ENT has finally gone to seeing me weekly or every other week to every 6 weeks. Some days, I completely forget that I look different so that tells me Ive finally adjusted to my new normal lifestyle.

Your mom needs to push the peg feedings and build up her strength. I found this stuff at walmart, it is 11 oz and has 20g of protein along with alot of other important daily requirements. Ive just run out of it so forget the name but its packaging is purple and silver. They have several good high protein liquid formulas there. Ive added it to my prescription formula along with a can of Carnation VHC. By adding an extra can of formula, it will help build her up in preparation for the surgery.

There have been several other OCF members who have undergone this same operation recently. Maybe they will give you some info too.

Please feel free to ask me any questions.

You all are so sweet. I look forward to checking back here in the mornings
Im also very glad I came here and took everyones advice to find the best care available - I always contemplated going to Houston but you all gave me the extra push. The ass from Duke basically told us we were in the situation we're in now because we didn't come see him first!! - another heartless thing that came out of his mouth.

Christine - i do try to make her do 3 cans a day thru her PEG. as of now its the only way she can eat. since they did the biopsy june 5th her trismus has gotten worse. yesterday she only did 2 cans. Since she came home from the hospital in January, ive been ordering her Nutren 2.0, which I found online. Its 500 calories and 26 grams of fat, 20 grams of protein. She is really bad about only doing 2 a day. Yesterday I tried to get her to do one while we were at the dr office but she was in so much pain she said it would make her sick and she snapped at me for pushing her to do it.
Hopefully after getting settled with her new meds shell stay on top of it

I need to get her to read this forum. She doesnt realize how many others have gone through what she is facing. Christine I think she would benefit from talking with you or at least reading your blog since she is facingn the same surgery

Hi Emily. I'm so glad you had a better doctor's appointment. Your mom is so lucky to have you fighting for her. It kind of makes you wonder what happens when people are in this fight alone. Unfortunately reporting the doctor probably won't matter. They cover for each other. I lost my mom to pancreatic cancer two years ago. She had her pancreas removed 9 months before she died which instantly made her a diabetic. Her doctor that was in charge of her diabetes was a total a**hole. The month before she died her blood sugar was anywhere on any given day from 80 to 650. She had to be rushed to the ER more than one time. We were at our wits end trying to control it. We would call her doctor and never get phone calls back. We couldn't find another doctor for her because there are very few doctors in Delaware who deal with this and her cancer was all through her.

I'll never forget one phone call my sister made and INSISTED in talking to him. He got on the phone and told my sister "stop worrying about your mom's blood sugar numbers and let her eat what she wants, she's dying anyway". Nice huh? We reported him but I'm sure it went no where.

Hang in there! Hugs, Wanda

I sent you a message with my number. You or your mom can give me a call and we can chat.

[quote=EmilyE]I need to get her to read this forum. She doesnt realize how many others have gone through what she is facing. [/quote]If your mom doesn't want to get on the computer to come here, you could print out pages for her to read when she feels up to it.

That is a great idea Leslie! Emily I am hoping you can answer some questions for me, as a caregiver and family member. I find that I don't talk to my loved ones openly about how I feel and my fears of re-occurance and death etc. Am I protecting them from hurt or should I be more open and worry less about scaring them and making them worry more. Most of them have not done any research that I know of. I don't know if they want to talk about all this or not.

Wendy, how old are your children? Im no expert really..Im just dealing as its handed to us the best that I can.
You have to talk with them though. They probably want to but are unsure of where to start. Its like the big elephant in the room - someone has to speak up about it. It will make you feel better to talk with them. Theyre probably just as scared as you are.

My youngest is 14, the other 2 are 27 and 28, but it goes beyond my kids, my husband, my brothers, friends, parents. I guess I would like to be able to talk to them, but I am afraid I am being over dramatic. Or like my kids it might make the to scared to think about it. I just don't know I guess. I share a story that I read here by amyk it ws very sad,with my hubby and he just clams up and shakes his head. So my guess is it is to scary for him to think about. But it just makes me feel more alone, you know what I mean?

Emily, my Mom has gone through several recurrences in the last 5 years now and is doing well so far. She cannot have anything by mouth but has gotten used to her PEG. She's gained some weight and is now up to 112 lbs. Her biggest complaint is being short of breath but she has oxygen to supplement when needed. Each time I see her she looks like she's getting a little stronger. I'm saying prayers that she will be around for a good, long while but also know that God is in charge of that. Will be keeping your mother and your family in my prayers as well. Good luck with her future appointments and surgery. Take care.

Nancy T.

Hi Emily- Your Mom is really beautiful and strong. She looks ready to take this on. I so hope that they can get her in surgery soon so she can recover and get well again. I am so sorry you are having to deal with any of this! My thoughts and prayers are with you. What an amazing daughter your mom has. This is what real unconditional family love is all about.

yall, the lady at mdanderson called me this morning and they have her scheduled for the 29th. i kinda pushed her into trying to find something a little sooner so shes going to call me back. i guess its better than nothing but i was hoping to go a lot sooner

Well we're having a really bad day. Mom looks more frail with each day. The 29th seems like an eternity from now. It seems the fistula in her neck is opening up WIDE. Her neck is also 'leaking' from where the previous surgery was. What does this mean??? Im just sick on my stomach. I want someone to take her now. I cant even look at her without crying

Hopkins' head and neck cancer center has a second opinion program that does not require travel. Info here (scroll down to Medical Second Opinion Program): http://headneckcancer.hopkinskimmelcancercenter.org/index.cfm/cID/1573

Emily, if your mom's neck is really bad she may need to go to the ER. Or put in a call to her doctor. They always have someone on call who will give you advice. Maybe you could take a picture of it with your cell and send it to them so they could see whats going on.

looks liek you have to mail them all of the records and wait for a written response

christine, its not bad to where its gushing out..whatever substance it is releasing. its just scaring me because its draining. i knwo she has an infection from the hardware still in her mouth so maybe thats it? i dont know