I don't post much here. I do come and read and feel not alone. I have been diagnosed with a 5th occurrence. It is on the base of my tongue on the right side, above the midline. I have been getting care from Dr T. at Johns Hopkins in Baltimore. He is referring me to University of PA to talk to a doctor about Robotic surgery and then to New York to talk to a Dr Urken (spelling?) to discuss an open procedure. They tell me my options are very very limited, i cannot have anymore radiation and they are warning me of "quality of life issues". I have had radiation and chemo twice (2004 and 2010). And they say they cannot cure me of this cancer, it is going to keep coming back. And i have to be prepared that this may be my last surgery. I know what they are saying. I refuse to give up (they are not saying there is no hope), this thing will not beat me. I am scared from my toes to the top of my head. anyone out there been through this? love and hope to all of you.

Heya, well I was wondering if I was alone in my recurrence journey. I just it my third recurrence in May and have gottent three opinions from my local team, the University of Washington and MD Anderson in Houston. All of them said the same thing.,,,,,,,,,,,

We don't know why this is happenning, we don't know how to stop it from coming back and we have limited treatment tons left. I started with a tumor on the left side oral tongue and had surgery, chemo, radiation and erbutux with lymph involvement in my left neck. The second time I had surgery and chemo and erbutux. This time I cought it early and they were able to get clear margins and there is no lymph involvement this time.

They discussed me getting radiation and chemo again but didn't think that it was in my best interest this time to minimize long term effects and QOL issues. I'm not HPV and was not a smoker, drinker or chewer. I haven't been around any dangerous environments that I know of.

We have been trying to look at each occurrence to see if there are any similarities and have found one potential common occurrence. I don't know if it is the cause but it's all I can figure out right now. Each tumor has shown up shortly after a having gotten ill and then having something cause a lesion on my tongue.

I don't know what else to think, the only things I can change are my diet (which I have done) and adding supplements that have shown some promise with OC like green tea extract, turmeric, olive leaf, and a bunch of antioxidants. There must be some genetic reasons for this to keep coming back but none of my cancer teams have a clue as to why and without something preventative, it's coming back.

Im so sorry you are sick again!!!! Ive been thru OC 3 times. First one was rads and chemo last 2 were surgeries. The 3rd round was the biggy and also the most involved. I know how you feel about the recurrences but I have not been told they cant fix me. I cant imagine what fear being told that makes you feel, it must be horrible!

I can only say going to the countries top cancer centers is the best thing you can do. Im in PA and know several members who have gone to the Philadelphia CCC. Ive only heard good things from them. Wishing you all the very best with everything you are facing!

Welcome... 5 is a lot - I think changing drs and hospitals is what you need, someone with a fresh perspective and string surgical skills. It seems almost as though it's chronic. Have you tried adjusting your diet?

FunnyGirl,

I�m so sorry your facing yet another recurrence. I�m a member of the recurrence club also although my surgeries weren�t as extensive as yours. Don�t give up and definitely go for the additional opinions.

I�ve heard many good things about the U of PA � great hospital and doctors. A friend of mine was treated by Dr. Urken (not sure of spelling either, but believe it is the same doctor you are talking about). She is a 10+ year survivor, was either stage 3 or 4, and is doing great today. I�m sure she would be willing to talk to you if you want � just send me a PM with your contact info and I�ll forward it on to her.

Wishing you the very best. I�ll keep you in my thoughts and prayers!

I'm so sorry, Funnygirl.

Life is so unfair. I just don't understand it. I hope that you can get a timely, fresh perspective that offers some hope. We all need hope. I wish this for you!

Is the cancer still localized to the BOT? I'm assuming that they checked you for distant mets?

Please lean on us when you feel the need. Please keep us posted as you are able. I'll be keeping you in my thoughts.

xoxo,
Kerri

Well this ducks! I have had two occurances and that was two too many. I too had 2 rounds of my radiation but I have told my R.O. That if it came back again I was keeping athird round as a possibility. He didn't say it was out of the question so perhaps that is worth talking about? Can't hurt anyway to talk to some rad people. There are advancements every day. Hugs. Keep posting.

Donna

Definitely get more opinions, what one dr thinks is impossible is a challenge to another dr. Some are by the book, but what you are looking for is someone willing to think outside the box. Don't give up... Hugs!

Good Morning Friends,

Update. I am not going to the Univ of PA, Dr Weinstein can't see me until the end of july. My doctor at Johns Hopkins doesn't want me to wait. I have an appointment with Dr Urken in NY (Beth Israel) on July12 at 7:00 pm (yes PM).

I was originally going to Univ of PA to look into Robotic surgery. My doctor didn't really think i would be a candidate because of my trismus.

The cancer has remained at the BOT on the right side. they said it's small 1 centimeter. They said the problem is the location. It has not spread anywhere else. The PET scan didn't light up anywhere else. And i have gotten a CT and MRI.

I am not ready to give up. I feel great and i am undefeated with 4 wins so far! I intend this to be win #5. I told Dr Tufano, just watch and be amazed!

I have not made many dietary changes actually other than what the truisms forces me to change. I would be interested in what you guys have changed or taken.

I am not sleeping really well these days, and i have a headache that won't go away. food seems to have less flavor then it usually does. I need to lose about 25 lbs, so i am not wasting away.

I will say my family has been wonderful. I share a house with my sister and mother and they are great support. And i have relatives in California who have been great as well. In fact one of my Uncle's is flying out for the surgery and staying with me in New York. I feel loved!

I welcome any responses. love and hope to us all.
Gina

Gina, Im so glad to hear you have a good solid plan with reputable doctors and cancer centers.

As far as weight loss and your diet goes, the goal for cancer treatments of all kinds is zero weight loss. You will need those could extra pounds as most of us have lost weight with even surgical procedures. Your body burns up calories at an amazing pace trying to fight the cancer and also with the recovery. Many of us, myself included have used a high protein whey powder added to our liquids. This helps with healing. Calories should be high, 2500 minimum and water should be 48oz a day. These numbers sound high but with your body fighting cancer it really is not. When I was recovering from radiation many days I would take in 7000 calories and I did not gain an ounce. I also struggle with trismus too so I know its not easy. I drank chocolate peanut butter milkshakes with carnation instant breakfast powder added for extra balanced nutrition. Try for a well balanced diet which is high in protein. Nutrition really does play a huge factor in your recovery.

Best wishes!!!!

Gina, Dr Urken was my surgeon. He is the best in the world! I'm not just saying that. Sleep well knowing you are about to meet the man who will give you your life back in the best way possible. Be prepared to not be seen until 10PM. Seriously. Bring some snacks with you and a good book. You will be waiting. Dr Urken spends as much time a patient needs, and ALWAYS is late on patient day. In addition to being probably the world's expert in head and neck surgery, he is a stellar human being. He will give you his cell, will respond to messages, and I don't think the guy ever sleeps. He is saving lives. And, he will save yours. On July 12th, you will be filled with hope!

Wow Eva,
thanks so much. I did hear good things from my doctor at Johns Hopkins, but nothing like this. Honestly I have been struggling with keeping up my optimism, some days i am ok. Other days i am not sure i have the strength. I guess its the same for all of us. I am going to let my support circle of family and friends know what you said. I am sure it will help them as well.

love and hope to us all..

Gina

I have asked Dr Urken on several occasions about who he would recommend in different parts of the country for what he does...he is always hard-pressed to give me an answer because he feels there is no one who has the skills and experience he has. He trains surgeons around the world. He developed the surgery itself. He is young enough to still have his dexterity, but old enough to have more experience than anyone else.
I wish docs out there would be able to say, "I can do this surgery but I know someone better for you." Each surgeon has a specialty these days, and if they don't, they just can't be as good as someone who does. I'm glad your surgeon finally said it!

One foot in front if the other - you will get through this try not to lose hope it truly effects you're healing and potential to heal, recover and bea his. Eva- you're fantastic... It's so awesome to know Gina will be in amazing hands... Expecting great news after your appointment. Hugs!

My doctor got his training from Dr Urken, said he was the best of the best and had always promised to send me to the best place and doctor for me. My doctor is a very good surgeon, i have always felt secure placing my life in his hands. He said he needed to get me out the this atmosphere to a better place (I had a bad meeting with a doctor at hopkins).

Cheryl you correct of course, losing hope will effect my healing. You guys have been great. I feel good.

Gina

Eva, thanks for responding to Gina. I knew you really liked your surgeon, but didn't know about his background. I certainly hope I don't need anymore surgeries in the future, but if I do I will consider Dr. Urken.

Gina, I'm glad you are going to see the best of the best! Let us know what he recommends! Keep the positive thinking and hope -- it does help!

thanks Susan and Eva and everyone else who replied. i will go to sleep tonight having more hope and not feeling so alone. As much as my family and friends love and support me, they can't know what it is like. thanks again.

love and hope to us all
Gina

i wish Ron was more into looking at other docs and second opinions but he said he is done...I told him I am NOT but Doc says it is his choice...

hello suez,
i can understand ron saying he is done with other docs and second opinions. just don't give up on him. he may change his mind. It is his choice, you can't make him to go other doctors. I know you wish you could, If i were in your position I would. My best friend died of AIDS about 5 years ago and i felt he had sorta given up on doctors and opinions the last two years of his life. I couldn't do anything about it, but support him. When i could push him and talk to him i would, but if he didn't want to hear it i backed off. I just loved him and supported him.

Gina

Funnygirl,

I just got a claer scan from the University of Pittsburgh where I went for a third round of radiation after a recurance. I had the University of Michiga, MD Anderson and Sloan Kettering look at my condition and they all said surgery was not an option and I had too much previous readiation to consider more. They all said I could get chemo to slow things down but I was looking at a terminal condition.

The University of Pittsburgh has a trial they have been running for 4 years using cyberknife radiation w/Erbitux. Given the alternativs I went with Pitt. I had four sessions of Chemo and five of cyberknife over two an a half weeks.

The Doctor running the program over there is Dr. Robert Ferris. You can find him on the UPMC website. Have your doctor send Dr. Ferris your records and he will let you know if you qualify for the trial. It worked for me.

Hope this helps.