Dear All,

We have finally found out the reason for the severe neck pain that radiated into excruiating headaches. We saw the surgeon on the 6th and a CT scan showed that a large tumor was present at the same surgical site. (back of tongue down throat) We had noticed some swelling in the jaw area for the past 2 weeks but it has increased in size quite a bit in the last five days. We were treating the pain as a result of post-radiation and nerve pain due to lymph node removal, but we were wrong. Since we could not put in a nose feeding tube, it was decided by all to admit David into the hospital. We needed to get a PEG tube inserted (for nourishment) and get his severe pain under control. It's been 48 hours and the pain is still not completely gone. Morphine is not working. Two pain doctors have talked to him today and they are switching him to something stronger. If that doesn't work tonight, then they will try methodone???and if that doesn't work they will insert medicine through his spine.

The PEG was inserted yesterday and today he received A WHOLE CAN of 1.0 Nutren. (you have to wait 24 hours after a PEG insertion) Thank goodness that he is finally getting some food. If the nausea stays away, then they will increase the amount of cans and get some weight on him.

The tumor is already too large to remove and chemo will be given to attempt to shrink it down. Our Surgeon will contact our Oncologist on Monday to discuss and set up this next step.

In a way I am relieved that we are not going the surgery route. We will deal with that when we have to. In the meantime, I am grateful that we still have options. I am doing surprisingly well. I do fine if I don't look too far ahead, stay in the moment and take each day as it comes.

I hate to throw bad news into the forum. We remain optomistic and yet realistic of the battle ahead. This is David's fourth recurrence in one year. Each time he had clean margins. This disease has a habit of kicking you in the butt.

Chemo here we come! I will keep you posted.

Brenda (David' wife)

"Hope never waivers,
but holding the fear at bay
as it taps my shoulder
is an art form of repression."

Author Unknown. "Coping" Magazine

David and Brenda,
I pray that this will be your last time to deal with this cancer.
Minnie

Brenda, sad to learn that David has been facing recurrence for 4 times within a year. Your message gives me the feeling that you are a really supportive wife and your attitude towards your husband's recurrence is so positive that I am sure those who read your post can learn a lot. One thing that makes me feel uncomfortable is that David's cancer should be a stage one only when diagnosed but how comes it can recur so soon or frequently after treatment? Is there any misdiagnosis or any reasons behind? Just curious. Hope that the chemo can do its job this time and surgery is not necessary.

Karen.

When David was first diagnosed in January 2004, the lesion was small and therefore Stage l. However, the doctor did say that his tongue contained alot of dormant cancer cells. As I understand it, chemo only works on active cancer cells. Another small lesion showed up on the same side but at a different site. A little larger and it was considered Stage II. Radiation was recommended which was somewhat of a shock since we once again got clean margins. We are at an teaching Hosptial in Atlanta that has a huge cancer treatment center and their cancer team did the recommendation. It was determined to start radiation while the cancer was in an early stage.

The third recurrance started 6 weeks after the end of radiation in a new spot, in the back of tongue down the throat. It was a difficult spot to see and difficult to get to. Clean margins again. Less than one month later, David still hadn't come off the pain meds which can be normal for that surgery. The pain increased and now the swelling and here we are. Tumor.

I can't second guess the treatment at this point. I truly feel that we have been given excellent advice. We can always try to put the blame on someone else but it boils down to the fact that Squamous Cell carcinoma is a difficult disease to treat. The same protocol exists for much of the treatment and no new drugs have appeared on the horizon to help combat it. It still is surgery to remove, radiation and Chemo. We see of Breast Cancer researh, Parkinsons Research more now in the news and they seem to be getting closer to better and effective treatments for which I am grateful. But Oral Cancer is still a relatively unknown disease in comparison.

Sorry, I'm venting. Karen, I never did ask what stage David was in. I guess at this point, it wasn't that important. I will find out later.

Brenda

Dear Brenda

I am so sorry to see that you and David are facing more treatment. It seems that some malignancies are very much more aggressive than others.

You obviously have wonderful medical support - please let us know how David is progressing. You are in my thoughts.

Love and light from Helen

Dear Brenda; Please know that the unwavering support of strong spouse (like you are) is one of those amazing and un-catalogued medicines that promote victory, yes, even over cancer. Even if it is just day by day that you are able to muster your wonderful strength, it makes a world of difference. Like your David, I am blessed with such a spouse, and it has made life bloom like never before.
Thank you for your message of courage. I am a praying person, so you and David will be on my prayer list while you go through this challenge together.
Blessings to you both
Fran

I just left the hospital and it looks like the pain medicine is finally working. At this time, Methodone is our favorite med. (it does make the eyes wander abit in different directions at times.)

Thank you for your wonderful words of encouragement. We do have alot of Prayer Warriors praying for David at our church. I truly welcome your prayers.....especially from those who have walked the walk. Bless you all.

Brenda

PS. Does anyone else miss spellcheck when they write on this forum?

By the way Fran, I was born in Sarnia and raised in Orillia, Ontario. Married an American so that I would never have to watch another hockey game.

Brenda, I pray that He will provide comfort to both you and David. May David's fight be successful and with you backing him up, I know David's attitude will stay positive. God bless you both and may tomorrow be the beginning of complete recovery.

Dear Brenda; Already a small victory! Good for you.It is super to know that the pain has met its match..googly eyes notwithstanding.
May I share with you a phrase of inspiration I received from a great Christian friend? "Do the next thing". It actually comes from Henri Nouwen, but has roots right back to Saxon England. When there is so much we can't do because of mental, physical and spiritual limitations...there is always that somewhat reachable goal of just doing the NEXT thing.
So, may you and David have the strength to do the "next thing", and may each small journey have its own special blessing.
Yes, I agree about spell-check. I feel like such a goof sometimes after posting...most of the contributors here seem like the forgiving type tho.
Blessings,
Fran

Dear Brenda & David,

After reading your original posting about a fourth reoccurance it hit home. I waited to respond as I am not sure what to say. So Here goes from the heart.

At the start of my treatment after I had my surgery I was really down. My wife and caregiver Marcee told me what she used in times of extreame stress, "This to Shall Pass" I pray this is true in your case! It truly is a roller coaster ride on your emotions. It is and continues for me. All the support I received from this forum helped a great deal. I hope it helps both of you to.

Your strength as a wife and primary caregiver jumps off your posting's. David is one lucky man to have you.
I am praying for both you, David and your family.
No one should have to endure four reoccurance's.
This is one bastard of a diaease!!!
I know many members of this forum are thinking of you both. Please keep us posted on how David is doing.

Danny Boy

P.S. i mis the sppppell checck moree thaan anyonee!!!

Brenda & David,

This disease keeps everyone guessing -- I was diagnosed with a stage I tumor 18 months ago and have had no recurrences and you guys have had 4 to deal with. I will pray for you both. And yes I miss spell check.

Barb

Brenda and Dave,
I too read your post earlier today and was too upset respond. Your earlier posts about Dave's severe pain had me think it might again be another reoccurence, but I assumed the Drs would be on top of it was. After all your complaints of pain, how they missed something large enough that is now unoperable mystifies me.

I truly hope his next treatment plan is a success and this disease can finally be arrested. Please try to keep your positive spirit and do not give up hope. We are all sending positive energy and prayers your way. Let's beat this thing!!!!

Take care,
Eileen

Brenda,

I am truly sorry to hear of the newly diagnosed challenges facing you and your beloved husband, David. I am thankful that the medical team has the pain somewhat under control now. David is so fortunate to have you by his side and I speak for all of us that had our "stronger half" with us through this journey.

You are so right about the so little that is known about fighting this horrible cancer. Many more people have lost the battle with oral cancer than cervical cancer and prostrate cancer, for example, but we hear so much more and so the results of so much more research for both of these. As I pray for God to provide comfort and peace to you and David, to wrap His healing arms around both of you right now, to provide His wisdom and guidance to David's medical team to provide the best possible treatment plan, I will also pray for His wisdom and guidance to find more weapons to battle oral cancer.

With love,

Ed

Dear Brenda and David
Like Eileen I was also too upset to answer your post at first reading.
It`s just not fair! Childish I know but it`s how I feel. I know that as caregivers we are not experiencing the physical pain, but God it hurts.
My Mantra was an Emmerson quote.
" What lies behind us and what lies before us are tiny matters compared to what lies within us. "
Hang in there guys, lots of positive vibes coming your way.

Love
Marica

Nice quote Marcica!! Live for today!!

Danny Boy

I like that quote, too, thanks Marcia. Yesterday I had my yearly mammo and chest x-ray. Technician asked why I was having the chest x-ray, told her of the oral cancer. She was really taken back, and asked if I smoked or chewed (tobacco I assume), anyway, to make a long story short, there were all kinds of brochures for breast cancer and other types of cancer, NOTHING for oral cancer. I will drop off one of our informative packets and hope they display it!

Brenda and David
MY PRAYERS ARE WITH YOU BOTH.

Dear Brenda,

I am so sorry to hear the news about David. I pray that in his case, the "fourth time will be the charm". I just hate this awful disease! I like you am the caregiver/wife to my husband Ron, who just completed radiation treatments on his throat about a month and a half ago. So we have just started the "watchful waiting" and it scares the heck out of me. I'm so afraid the same thing is going to happen to Ron that's happening to David. I really admire your strength and courage, people like you help me to be stronger for this fight we are in the midst of. I remember reading one time, "God will either lighten your load or strengthen your back". You obviously have a strong back right now, here's praying for a lighter load real soon!!!

Shelley

Hello SHelley. We are neighbors. My mom is in Agoura Hills, the one suffering with this terrible disease. Sorry Brenda for what you are going through. I too am dealing with this as my mom has now suffered her THIRD recurrance. And now, they are telling her that nothing can be done. SHe has the cancer in her jaw bone. Had 3 surgeries and 6 weeks of daily radiation to hear that she has the tumor likely back in her jaw bone. They are saying nothing can be done. Does anyone know of anything, homeopathic or otherwise? I do not want to give up this battle. She is 65 years old and lost over 70 pounds or so. She cant eat or speak. She is continuous pain and takes the liquid morphine. The odd thing is that she had this weird infection that kept oozing out of her chin and her lips. Has nayone heard of this?

God Bless you all and you are all in my prayers.
Stephany