longest post ever. needs editing.

Well, just as I was afraid of. Luckily I was prepared. Dr. says they discussed all the immunotherapies, radiation, and clinical trials. They think the best is just watch and wait. Scan again in July.

Well, there you go. One of my what if's: I won't be sick this summer.

Here goes my months of research into one brief (maybe not) post. I am actually going to use statistics from one paper that looked at stage lll melanoma patients that had recurrences (cancer came back after initial treatment). They looked at patients at Sloan-Kettering Memorial Cancer Center for 12 years. Published in 2010. The data seems consistent to the other studies I've been looking at.

At stage IIIc (me), chances of this cancer not coming back in 5 years is 11%. In the unlucky 89%, over half see the disease again within a year. The other half almost all will see it within 2 years.

They estimate 5-year survival for someone who relapses at a stage IIIb to be 20% (that would be me, now as I was a IIIb and had a relapse). If you relapse at a stage IIIc, your 5 year survival shrinks to 11% (don't want that to be me, ever).

And we aren't going to do anything about it? Not really. I did have it removed, which could provide a cure (in 11%). I have already done the one treatment approved for my stage (interferon, 3 years ago). It is supposed to help about 10% of the patients who take it. I think it did it's job for me, as I should have seen this years before it came back. But yes, they do not think I should do any thing other than scans and 'close observation' for now. Melanoma is very resistant to traditional chemotherapy and radiation.

We do have some things, but not many, and they are so toxic, why not wait till we need them? Asks the Dr.s.

I have 2 major options to try if it returns. One is the biochemotherapy (an immunotherapy plus chemotherapy). It helps about 15% of those who take it, cures about 6%. You can tell you are a responder if you have tumors to watch. If you don't respond you get off it and try something else. It is a very hard and toxic treatment. If this helped in earlier stages I think that it would be something they did, but it's kind of like you are either a responder or not. Whether you respond now or later shouldn't matter. As my Dr. put it 'you don't want this stuff, it makes you sick as a dog, and you don't even know if it's helping.' There are a few places around the country who do this with stage III patients, but they are not the big, most respected cancer centers. And I totally see their point in not offering it to me now. But you know how I would just do anything that might help. If they were offering this as an option I would do it in a heartbeat. This is why I'm sort of glad they are not giving me options. I would choose to give up my perfect health right now (minus a limp) and puke in a hospital room for 5 days, come home to recover for a week and half, back to the hospital 4 more times. All for maybe nothing.

The Yervoy I blogged about would be the other drug. This is reporting to 'cure' 10% of the patients. Severe to fatal side effects in 12% of patients. They are studying this drug on stage III patients right now, so we will see what those results are. I don't qualify for that trial because I have been treated with interferon before. If I turn stage IV this would of course be tried, and then again, I either am a responder or I'm not. Scans would show if this is working, and if it does they can keep giving it to you, unlike biochemotherapy where if you fail you are done.

There is another drug on clinical trail, the BRAF inhibitors that are having great success (but they are having a hard time keeping long term responses). As I read on my type of melanoma (spizoid-type), it is unlikely that I have the mutation you need to have this be effective. This was a depressing discovery.

There are always new treatments through trials. In a year the vaccine I was hoping to get might be approved. They are thinking a combination of the new drugs might be the answer, so there are many things in the works.

I admire people who can look at this and say 'Don't look at statistics! Your not a statistic!' Shoot, I don't know how to ignore them! They have my full attention. I do believe I could be on the good side of the statistics. But there is that other side that is so much bigger. 'They' also say 'We could all get killed in a car accident today!' But you would never get in that car if you had a 20% chance of getting there alive. I think even 'you' would be paying attention to those statistics, if 80% of everyone who drove ended up pancakes. Pretty sure we would be walking.

People are startled by the way I talk about it. But that's the way I feel about it. I am so sorry, I don't know why God would give this kind of disease to someone who is so realistic. Who believes science (except physics). Who has seen good people die of bad diseases. Who's faith I guess is not perfect.

And yet somehow I am full of hope.

Hope is just a little different around here. It is evolving. Maybe into what it should be.

I hope that I am cured. I hope that this never comes back. I hope that I am done with this trial forever.

But that isn't enough. I have to hope that no matter what happens, God will take care of things. That in the end, everything will be okay, no matter what the outcome.

I have to add that to the things to hope for, because I will probably not live as long, or have as healthy of a life as I want. I hope not. I pray not. But I can't say I will not, because chances are....

*****

For months now I have not been able to enjoy a novel (until this week). I have been reading medical journals. I just don't have the attention span for anything else, even full-length movies. But I have loved my poetry books I can pull out when I need to get away from the computer screen.

Emily Dickinson I am really enjoying. One of me favorites (it even uses the word extremity):

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.