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