Wednesday, April 20, 2011

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.


  1. Thanks for the info and the thoughts. My hopes line up with yours.

  2. I agree with jill. and I love the poem. I have hope with you.

  3. Alisa, my heart breaks for you but know that there are many praying for you and your family...even total strangers.;-) I loved your post. Statistics are important and hard to ignore but continue in hope too. Believe in the possiblities of God. He will surprise you with the blessings he has in store for you and I know from my own experiences that he will lead you to the next best thing even that best thing seems impossibly out of reach. It's not out of His reach...that's a statistic that comes with a 100% guarantee. Faith and hope grows line upon line just as everything else does so don't worry that your faith isn't perfect neither is mine but it's perfect enough! I hope you can be happily distracted today and full of peace! Kathy

  4. I just want to cry- I am glad you are honest in your feelings, you have such GREAT faith and you add SO much of that to my daily life- HOPE has been a way for me the past 20 months since losing my brother, I continue to HOPE with you and we continue to Pray for YOU and YOUR FAMILY.
    You are such a blessing, I am sorry and don't edit your feelings, it's good for everyone to read how you really are feeling. Hugs to you always. your an inspiration even if you don't want to be.

  5. oh wow you are sooo amazing, inspiring and love reading that you are "real" and tell it like it is!!!! HOPE is the best cure for anything

  6. I love your honesty, Alisa. I think I'd feel the same way if I was in your situation.

  7. It is just as hard to not listen to 'them' as it is to not pay attention to statistics! 'They' will never understand, but thanks for trying to help all of us see a little into your world. Thanks for the openness!

  8. Love the post. Love the poem. And I feel the hope, without it things would be so dark.

  9. I love that poem, too! When I was in Women's Chorus at BYU, one of our songs was that poem set to music. I am so inspired by your hope, and it seems like you've found such a good balance between science and faith. You are in our prayers every day.

  10. Hope, faith and love are the greatest gifts and you have them all. We hope with you! Jeri

  11. Thanks for the update. I have hope, and I was secretly hoping the doctors would advise the wait and see approach. I don't want you to go through unnecessary and possibly fruitless pains of treatments that they don't have much faith in. But at the same time, I can totally understand you having ants in your pants over waiting, and wondering what the wait will bring.

    Thanks for sharing your thoughts. I'm optimistic. I think you are going to have the best summer ever.

    I remain your most faithful cheerleader, who can't do the splits or an eagle. But, I can yell really loud and be a spaz anytime you want, girl. xo

  12. I am just glad to know you and live by a strong Person like you. I would not have the out look on life you do. So thank you for being so strong and for letting this ward pray for your family and being a part of your life. Your so strong and you will be blested and live a long life and see those boys grow up and have a family of there own.
    Thanks for sharing we Love you

  13. Thanks for the post, Alisa. I resent the physics comment, but love the poem. Let's wait and watch and pray.

  14. I'm glad you have this blog going so I can know what's going on with you in Alisa words. You're great! We're praying for ya!

  15. Wait, Watch, Pray, and in the meantime Live, Laugh, Love! You're amazing Alisa!

  16. I love the post. Love the info, love the author.

  17. You are getting a little too smart in all of your medical journal reading. But I do appreciate the detailed explanation.

    Thank goodness for some poetry to offer and strengthen hope. Thanks for sharing it.

    Glad you got to go to church on Easter Sunday.