How can this really be happening?

The surgeon told us that all the tumors cropping up on Scott's neck are indicative of what is probably going on beneath the surface. He will not operate again; more would just crop up and Scott would be put through more pain and have worse defects. He sent us to the chemo guy we had when first arriving at UVa, and we were really not prepared for the "we've done all we can do for you" speech yesterday, although we knew things have gotten very serious.

He pointed out that Scott had radiation to the same area that is now erupting with cancer; the cancer grew in spite of it.

Scott has had the known chemo drugs that work against head and neck cancer: cisplatin, 5-Fu, and docetaxil together and then methatrexate alone. They all failed.

Scott has had a total of three surgeries. Yet, the cancer persists.

I asked about going elsewhere, trying other types of therapies, getting in clinical trials; he said, basically, that's a shot in the dark. The cancer is advancing so fast that we should be considering Scott's quality of life. Experimental meds may make him weaker and sicker without affecting the cancer. So, he nudged toward "you gave it your best shot" but we couldn't hear of it. We asked about anything that might be effective at at least slowing the growth of the cancer, and he named three things (can't remember them now; Scott has them written down somewhere). One he was excluded from taking because of neuropathy (I think..whatever that is)and the another is a pill form of 5-FU (fluroeurocil) that Scott could take for 14 days, have a 7 day break, then determine if the meds are shrinking the tumors before deciding to proceed with more of that drug---or try another drug which I can't recall right now. In any case, he said these drugs would only have a 10-20% chance of slowing the cancer growth. I hate numbers, and was surprised he threw those out there. He was trying to be as delicately honest as possible, but man, that was a hard one to sit through. I sat and cried and asked questions and Scott wrote questions on his note pad and consoled ME.

I just cannot believe this is happening. I can see the tumors on Scott's neck/jaw increasing in number daily. This is happening too damn fast. We nearly begged for the 5-FU pill and got those filled before going to a hotel for the night; we drove home today.

I'm just so pissed off, so disappointed, and so hurt. I have not had enough time with this man. He is the love of my life and I only just found him...we've been married only 1 1/2 years. Now I'm supposed to watch this cancer slowly eat him alive??!!!! He is a teacher, for God's sake, he is loved by so many, he has taught me so much about life, he is the father my girls always wanted and needed, I have laughed more since knowing this man than in my whole life before him. He is so joyful and before the surgery, had the best laugh you could ever imagine hearing--the infectious kind that makes you laugh only because he's laughing. He could sing like Tom Waits or like Elton John. He can play Bach or Chopin like nobody's business. He studied at Harvard while YoYo Ma was there. Mary Hart was his student teacher in 11th grade in Sioux Falls. He was an only child but had a good upbringing, and he has always loved kids and wanted a family. When he found me and my girls it was such a blessing and we finally felt that we had our family completed. I had never known such an interesting, vivacious person before. We needed him as much as he needed us because previously we had each had lonely, difficult marriages.

I just found him, and now I'm supposed to watch him die.

It's just not right.

We have to decide if and when to go somewhere else to seek advice. In the meantime, he started the chemo pills today and we are hoping, still, for a miracle. He is so full of life and joy...I can't believe there is nothing to save him.

Christine

Christine,

I have been following your story with my heart in my throat. Your latest post touches me that much more. I am so sorry that you and Scott must go through this. You both have my best wishes.

-Brett

Christine,

I am so sorry. It tore me up to read your post. I don't have much to offer, but I will list a couple things for your consideration. A combination of Irinotecan and Docetaxol seemed to slow the growth of Heather's tumors. Although, to be honest, it seemed to work better on the spinal tumor than the ones in her head and neck. Might be worth considering, though.

I would suggest you pursue the clinical trial idea. Check with another doctor, call Johns Hopkins, MD Anderson, Memorial Sloan-Kettering......or ask your doctor to call. There are links on OCF for websites that list the clinical trials, so you can see what's available right now.

You can also call the drug companies directly, but I didn't have much luck when I tried that. I think the doctors are better able to get through to the right people. If Scott doesn't qualify for any of the trials, sometimes the companies will make the drugs available on a "compassionate need basis". That's not the term they use, though. I can't remember exactly what they call it, but it's when they agree to provide the drug to people who have exhausted all other options.

As a last resort, I suggest that Scott consider taking turmeric/curcumin. Again, there is a link here at OCF to a study that was done at MD Anderson. This is obviously a long shot, but there is a possibility (albeit small) that it might slow the tumor growth.

I know you probably don't want to hear this, but you do need to discuss end-of-life and quality-of-life issues with Scott. If you don't, I'm afraid you will regret it later.

It's funny the things that come to mind when faced with life threatening situations. You mentioned Scott's laugh. Heather had a laugh like that. Just hearing her laugh made me want to laugh too. It was such a bubbly, happy laugh.

I wish I had something more concrete to offer. I'll keep my fingers crossed for that miracle.

Rainbows & hugs,
Rosie

Christine,

I have sent you a private email. If you don't receive it please let me know.

God bless you both,
Dinah

Yes, Dinah, I got your email and replied. Thank you.

Also thank you, Brett and Rosie, for your kind words. Scott and I did discuss end-of-life and quality-of-life issues this morning. We had not really gotten into it before because we still had so much hope that surgery would be more successful. Now we know we must prepare for the hard stuff even though it is a task neither of us wants to take on.

We are researching other treatment options, including clinical trials (even though our doctor did not think it would do much good to "take a shot in the dark"). In the meantime, the chemo pill my husband is taking is called Xeloda (which the body converts to fluroeurocil, 5-FU). It has apparently shown good results with stubborn breast cancer, so the thought is that although my husband had the IV infusion of 5-Fu previously, this pill version will do something differently with his recurrence as it has done with breast cancer patients.

If that med fails, then our only other option at UVa would be to try Iressa (which I've already heard makes some people pretty sick). We are not sure if we want to try a second chemo pill that has only a 10-20% chance of doing ANYTHING. That may be the point where we would want to start a clinical trial. I just can't see doing nothing. That means certain death sooner rather than later.

My husband is not giving up. He is being so strong and has such a good attitude...it has to be helping. He has a lot of kick in him yet.

Christine

Christine,
My heart goes out to you and to Scott. You are in my prayers. We are almost to the end of an 8 week chemo/rad treatment and it's been so hard. And yet it seems harder to wait and see what the tests show as Dan has a very aggressive cancer that could not all be gotton to during surgery.

It's so hard for all of us. Dan and I have been married for 28 years this June, and hearing your story makes me so glad for all the years we have had together. It's not been easy, but we made it this far and we thought this would be our time when kids are finally making their own lives. Sure never expected this...Dan is 48 and I am 46. Things like this you never expect especially not at this age, although some here are even much younger.

Take care and keep us posted!
Debbie

Debbie,

Yes, I know it is never easy no matter what the circumstances. I am 38 and Scott just turned 49. We had to tell my daughters today about the news, and my youngest cried and said, "But why will he die? I'm just 15 and our new family is so strong. He has to make it because we love each other!"

I wish it were that simple.

Christine,

If you are looking at clinical trials, you will notice that quite a few of them are conventional chemo with an investigational drug combo. The investigational gives the conventional an extra kick.

There is even one right now that is xeloda with an investigational drug combo.

Any questions you have my email.
Dinah

Christine,

I am so sorry to hear about your husband and I hope the chemo pills work. There is still hope.

I have a question for everyone. I have discussed clinical trials with my mother who has gum and jaw cancer and she doesnt want to do that because you dont know if you are getting the medicine or not. Is that true with clinical trials? If that is true, that is too scary to even consider, isnt it?

Thanks
Stephanie

Stephanie,

There are others on here who are "experts" at this, but I'll give you my two cents. From the research I did on my own, I discovered that "Phase I trial" means it's the first time humans get the drugs (and all participating in the study get them). This is to figure out dosage and side effects, etc. In "Phase II," I still believe all people in the study get the drugs, but maybe to varying degrees so that docs can "tweak" treatment to control side-effects, benefits, etc., that were discovered in Phase I. In "Phase III," however, this is usually where things get complicated. People in these trials are split into groups; some get standard chemo treatment, some get the experimental drug, so may get a placebo. All of this is for comparison of treatments. Most (or all?) of these Phase III trials are "blind," meaning no one knows who is getting what (to not influence the findings) until the study is over. Beyond Phase III, I believe it is a matter of getting the drug to more of the general population after FDA approval (or tentative approval). If I am incorrect about any of this, I'm sure others on here will correct me. :rolleyes:

As I was looking for clinical trials last week, I decided I wanted a Phase II for my husband, but I have seen posts on here where folks are considering Phase III and worry about being in the "placebo" group. Brian is apt to tell these folks to take the chance because having a chance at a drug that might help is better than having no chance at all. Makes sense to me, but I can see why you would be concerned that "luck of the draw" would leave your mom out of getting the drug.

I do have sad news to pass along regarding my husband. I did also discover this week that Scott is not eligible for clinical trials or further treatment (other than the chemo pill he's currently on, Xeloda, which doesn't seem to be doing a thing to slow down the tumor growths on his face, but it's early yet...).

It's a long story, but to give the short version, when there is metastasis to the skin with tonsil cancer, the outlook is very grim because there is no controlling the cancer from infiltrating the carotid artery (which happens to be just beneath the area of my husband's recent tumor outbreak). I will spare you the gorey details about events that will take place when this happens, but I found out the hard way that although my husband does not yet have distant metastasis, things will most likely turn for the worse sooner rather than later.

This little fact was not revealed to me in my conversation with our doctors. When I asked them why there was nothing more they could do for him, they used the line "all standard treatments we've tried have failed." But I couldn't help thinking that the cancer is not yet in his brain, lungs, kidneys, liver, etc. so why give up? The carotid artery involvement makes all the difference. This particular condition is rare, and I have only uncovered two articles online about it; if anyone is interested in them I'll send you the web links.

This is a very difficult and sad time for us. We are trying to make the most of each day. We don't know if we have one hour, one month, or more. He's still ambulatory so at least for now we can enjoy a brief stroll down our street now that weather here in southwest VA has temporarily warmed up.

Christine

Stephany,

There is some excellent information on this site about clinical trials. Go to the site map or do a search. There is also a site called clinicaltrials.gov that lists approved clinical trials around the country.

I stand ready to be corrected on the following:
I don't think anyone gets placebos in Phase 1 clinical trials. I can't say I have paid a lot of attention to Phase 2 & 3 of trials, but everyone I know and everything I have heard is Phase 1 everyone receives treatment with the investigational drug.
There are some trials where maybe people receive different doses of the drug or a different protocol for administration (timing such as weekly, daily, etc.)
Also if the first scans the drug is not working the patient is taken off. (at least with the trials and doctors I'm familiar with)

As I suggested please use the search and read up on factual information instead of just my limited knowledge.

Take care. Best to your Mom.
Dinah

Dinah, you are right about the importance of looking at the info provided where you have indicated.

I do want to clarify that my comment about feeling most comfortable with Phase II trials is due to personal preference on the part of myself and my husband: Our reasoning is based on our understanding that in Phase I everybody gets the drugs, but they have only previously been tested on animals so safety is an issue. This sounds a little risky to me, but that's just my opinion. Phase III didn't appeal to my husband because he WANTED to get the meds and not take a chance on getting the placebo. So, Phase II sounded like the "best bet" for us--you get the drugs and one round of testing has been completed already--presumably this is in everybody's favor. That's simply our opinion based on the research we did on our own. No person has communicated to us any experience that specifically was "for" or "against" any particular phase.

But, since we cannot participate, we'll never know one way or the other.

For everyone who is in a clinical trial, no matter what phase, that beats having no options.

Christine

Hi Christine,
I am so sorry to hear of Scott's battle. It is really all of our battle since Scott is one of us.

From what I have read about cancer and its etiology is that the cancer cells are programmed to seek out blood supplies, particularly arteries.

I truly believe that it is much harder to be a caregiver than a patient (I have worn both hats having been my fathers primary caregiver while he was in hospice care while dying from non-Hodgkins lymphoma). My wife still struggles with issues from my cancer.

I am putting your and Scott's name into my churches prayer group and I will be praying for you daily.

Today our pastor gave a message about "worry" and said one thing that really touched me (and I frequently struggle with this myself): "To worry about tomorrow is to rob today of it's joy"

Thank you, Gary. Those are wise words.
We have been trying to abide by that sentiment each day but sometimes it is a struggle. We are so thankful that the time we've had together, although short, has been (and still is) filled with love and joy.

Christine

Christine. My heart just breaks for you and your family, I wish we could all just give you a big hug.
May your God be with you.
Marica

I asked the dreaded question of the doctors today. How long?

"Maybe two months."

Christine,

My heart goes out to you, Scott and the girls. Words cannot say how much your story has touched me and my family. You are all in my prayers and have been over the past couple months.

There is a reason why we meet people in our lives and it is apparent that Scott needs you in his life as much as you need him.

I will continue to pray for you all....

Danielle

Hi Christine,
I'm so sorry for what you are going through and wish there was something I could do to help. Just know that you have the strenght for this. We are praying for you, Scott and your daughters.
Love,
Minnie

Oh Christine,

You have our love and our prayers to help you through this time. I am so sorry for what you are facing.
God Bless You all
Judy U

Christine, I really do not know what to say with the bad news. We have been corresponding through the private emails about our husbands and what sort of treatments they have had and I tried to share my experiences with you to help you feel better as well as myself. My heart goes out to you as I know how I would feel. I wish I could make it go away. Try to stay strong for your family as you have been in the past. Keep loving and caring people around you. I really do not know what to say but I am so sorry and you will be in my thoughts. Stay in touch as I know the people here are a great comfort.
Becky

Please know there are many members of the OCF family that are praying for both you and your husband. Try and remember the many good times you had. Memories can help you cope with what all of us will face one day. You are a loving caretaker, It comes through in your posting's.

Best Wishes, Dan

Thank you, Dan, and everyone else. I have really needed the support you have given me here. Scott always asks what all of you have to say about things; he really has taken comfort in knowing that I have found a place to vent my frustrations and fears and to also get helpful advice and information.

We are finishing up legal business and talking about his final wishes. Those have been hard conversations. Today we got Hospice set up and tomorrow we are seeing a lawyer about little things that need tweaking. That will be a huge relief. We just want to hang out and enjoy being together. My oldest daugher comes home for spring break and that means the four of us will get to spend a whole week together. I am so thankful for that.

I just hope whenever Scott's time is up that he goes peacefully. The whole business with carotid artery rupture is very scary. All of your prayers are certainly a comforting thought.

Christine

Hello Christine,

I hav been silently watching your postings and have felt helpless in assisting. I want to say I'm here if you need anything.

I also want to share some thing with you and Scott. When I was just diagnosed and really not sure I was going to survive (Even after 3 years of survival, I am not certain), I was bothered a great deal by the reality that I couldn't possibly relate all my feelings and thoughts to my children (or my wife for that matter) in a long lasting meaningful way. I settled my mind by deciding to video tape myself talking and sharing my thoughts with them on tape for them to watch after I was gone. I even thought it might be neat to make a tape for each birthday so that I could be there at least in that small way. I can't imagine a better way to be a part of their life and provide support in their grief as well. I hope this might help and I wish there were more I could do.

Take care

Hi Christine, I know we as outsiders cannot offer you any help at this stage. A statement which has always been in my mind ever since my diagnosis is that life is not measured by its length, but by its breadth and depth. I don't know how long I can live, just as how Mark feels even when we have survived a couple of years. I look back at what I did in the past and what I have now.I learn to count my blessings and feel grateful. This gives me much comfort when I am aware that I have a very caring husband, two lovable sons, have students who are now doctors, lawyers, professors..Many cancer patients have to fight their battle alone with a very difficult financial situation. It is indeed a great blessing to your husband having such a supportive and caring wife. No one knows when his life comes to an end and I am sure you are on the right track preparing what may come next.

Karen stage 4 tonsil cancer diagnosed in 9/01.

You know, the truly great thing I can say about this is that Scott and I have no regrets.

We have honestly crammed so much living into the time we've had together. We started dating in 2002, then bought a house and got married in 2003! (It was a few months later that he stopped smoking and a month after that that the cancer was discovered.)

Since our very first day, we've made the most of all of our time together. He wined me and dined me from day one. He courted me with love notes and we enjoyed going hiking and fly fishing as much as going to jazz concerts. Immediately we became a family, because my teenage daughters, who generally did not care to be around men (they have a noninterested father), absolutely loved Scott from the moment they met him. I was astounded. THEY started planning family game nights and I had to wait my turn to sit beside Scott! And he has taught us so much about life. It's incredible. Our whole relationship has felt so right from the start; I know with no doubts whatsoever that we were meant to be. I know a lot of people pooh pooh that kind of thing for sounding sappy, but I'm here to tell you that true and meaningful love does exist and is intended to prepare us for things to come.

We have never wondered why Scott came into our lives "just in time" to get cancer...my girls and I know that he needs us now more than at any other time in his life. Yes, it is unfair and I'm disappointed and still angry that we don't get more time together, but I also know that I would not want him going through this cancer alone or with someone who didn't care so much about him.

Thank you all for allowing me to share our story here. It means so much to me.

Christine