All over the news today: the first drug in like 15 years to get FDA approval for treatment of late stage melanoma. Does this mean something for me? I am finding out. It may only be approved for stage 4 patients.
http://www.nytimes.com/2011/03/26/business/26drug.html
Exciting day in the melanoma world!
Friday, March 25, 2011
Thursday, March 24, 2011
try
You might just want to tune in next month to see what I really end up doing. It's changing all the time. The decision has been hard. I have made it, and then something comes up to make me think again.
I've had all this fight and no direction.
No decision is a great one at this point. I had to come to terms with what I'm dealing with here: late stage melanoma. It is what it is, and no one is going to tell me they have a great treatment. I just need something. I am going to give the vaccine a try.
And it's not because it's the easy way out. I'm telling them, "Amputate the dang leg! Pump into my veins the hardest chemo you have! Burn the entire body with radiation! Everything, and all at the same time!" None of this really works though. Different cancers respond to different treatments. Melanoma is not usually cured with any of these things (even amputation, trust me, if it worked they would do it). Some of those things can help, but the things that are working are immunological drugs. Finding a way to get the immune system to kill the cancer.
I should mention, melanoma is very curable if you surgically remove it before it invades other parts of your body. Once it metastasizes, it gets tricky. I'm not in the really tricky category (stage IV). Thank goodness!
This trial injects a modified herpes virus directly into your tumor every two weeks. They use an ultrasound to see where to put it and if it's responding. It replicates in only the cancer cells, killing them and sending off an immune response throughout your body to kill other cancer that may be lingering, or even other tumors far away from the one they are injecting. It's a good idea, but will it work?
The last trial was a Phase II and only had 50 patients enrolled. The results were good. Great for some people. I liked this article, http://oncolyticvirus.wordpress.com/2010/09/16/will-biovex-cure-melanoma-with-its-oncovex-oncolytic-virus/ which shows its response rates compared to the 'gold standard' proleukin which is part of biochemotherapy. There is a low response rate to biochemotherapy, but some people are complete responders (according to this article 6%) which means it gets rid of all the disease. For those complete responders they live a median of 5 years. So response rate is low, but is very effective in some people. They are claiming Ovcovex has a higher response rate, and a higher complete response rate.
The Oncovex website is: http://www.biovex.com/oncovex.html The results look promising for sure. I am a bit of a skeptic.
There are some things I don't like about the trial. The control arm for one. It's a drug that has been studied in patients who have had their tumors removed. It was found to lengthen time of relapse, not change overall survival. It has not been tested in people with active disease. There is a 1/3 chance I get randomized on this arm and if so I think we go back to surgery. We will know early next week.
This is what the 2 melanoma specialists have said they think is best. They say as soon as we see it's not working or we are uncomfortable with what is happening we drop off and take it out. But what if it works? This could be great.
And so? We inject.
And then? We wait. We pray. We hope. We take nothing for granted. We praise God for all he gives. We celebrate every sunrise. We give reverence to each sunset. We concoct green drinks. We eat salads full of veggies. We don't look back.
And then....we rip those tumors out if they don't respond. And we try something else.
And that is how we do it.
Maybe.
I've had all this fight and no direction.
No decision is a great one at this point. I had to come to terms with what I'm dealing with here: late stage melanoma. It is what it is, and no one is going to tell me they have a great treatment. I just need something. I am going to give the vaccine a try.
And it's not because it's the easy way out. I'm telling them, "Amputate the dang leg! Pump into my veins the hardest chemo you have! Burn the entire body with radiation! Everything, and all at the same time!" None of this really works though. Different cancers respond to different treatments. Melanoma is not usually cured with any of these things (even amputation, trust me, if it worked they would do it). Some of those things can help, but the things that are working are immunological drugs. Finding a way to get the immune system to kill the cancer.
I should mention, melanoma is very curable if you surgically remove it before it invades other parts of your body. Once it metastasizes, it gets tricky. I'm not in the really tricky category (stage IV). Thank goodness!
This trial injects a modified herpes virus directly into your tumor every two weeks. They use an ultrasound to see where to put it and if it's responding. It replicates in only the cancer cells, killing them and sending off an immune response throughout your body to kill other cancer that may be lingering, or even other tumors far away from the one they are injecting. It's a good idea, but will it work?
The last trial was a Phase II and only had 50 patients enrolled. The results were good. Great for some people. I liked this article, http://oncolyticvirus.wordpress.com/2010/09/16/will-biovex-cure-melanoma-with-its-oncovex-oncolytic-virus/ which shows its response rates compared to the 'gold standard' proleukin which is part of biochemotherapy. There is a low response rate to biochemotherapy, but some people are complete responders (according to this article 6%) which means it gets rid of all the disease. For those complete responders they live a median of 5 years. So response rate is low, but is very effective in some people. They are claiming Ovcovex has a higher response rate, and a higher complete response rate.
The Oncovex website is: http://www.biovex.com/oncovex.html The results look promising for sure. I am a bit of a skeptic.
There are some things I don't like about the trial. The control arm for one. It's a drug that has been studied in patients who have had their tumors removed. It was found to lengthen time of relapse, not change overall survival. It has not been tested in people with active disease. There is a 1/3 chance I get randomized on this arm and if so I think we go back to surgery. We will know early next week.
This is what the 2 melanoma specialists have said they think is best. They say as soon as we see it's not working or we are uncomfortable with what is happening we drop off and take it out. But what if it works? This could be great.
And so? We inject.
And then? We wait. We pray. We hope. We take nothing for granted. We praise God for all he gives. We celebrate every sunrise. We give reverence to each sunset. We concoct green drinks. We eat salads full of veggies. We don't look back.
And then....we rip those tumors out if they don't respond. And we try something else.
And that is how we do it.
Maybe.
Monday, March 21, 2011
PET
Good news! The nodes did not show cancer on the PET scan done this morning. There is just the growing cancer in the thigh area (the two tumors). I am on the surgery schedule for Friday. So excited I won't have to do the groin dissection surgery that I did last time. It was such a long recovery.
The Dr. still wants me to consider the vaccine trial. I have till Wednesday to decide for sure. Dr. says standard of care at this point is surgical excision or clinical trial. I am trying to tell him I have higher standards. It's not working.
So, camp decision again. This is so confusing.
Kind of funny that I am giddy about two tumors! Perspective, I guess.
The Dr. still wants me to consider the vaccine trial. I have till Wednesday to decide for sure. Dr. says standard of care at this point is surgical excision or clinical trial. I am trying to tell him I have higher standards. It's not working.
So, camp decision again. This is so confusing.
Kind of funny that I am giddy about two tumors! Perspective, I guess.
Friday, March 18, 2011
and again, changes
We couldn't do the PET scan today because it takes 24 hours to get the radioactive whatever they inject for the scans. Not too dissappointed, as I think we wouldn't be doing surgery until Tuesday at this point anyway. Still, the sooner the better.
But I don't have time to throw a pity party for myself. The waiting game is just something I have to get used to. I can choose how to deal with it.
I feel great right now. I have a whole weekend with nothing scheduled. The sun is out. Good enough.
But I don't have time to throw a pity party for myself. The waiting game is just something I have to get used to. I can choose how to deal with it.
I feel great right now. I have a whole weekend with nothing scheduled. The sun is out. Good enough.
Thursday, March 17, 2011
game changer
Ultrasound today showed another tumor above the original. Also possible involvement in a couple lymph nodes in the groin. Holy cow, can I please have a day without bad news?
Surgery if off and PET scan is being scheduled for tomorrow. If it is just in those nodes we may be doing the same treatment. If it is not cancer, but inflammation in the nodes, we go back to original plan. We need to scan and make sure it is no where else.
I took it like a champ today. Go Alisa!!!
Surgery if off and PET scan is being scheduled for tomorrow. If it is just in those nodes we may be doing the same treatment. If it is not cancer, but inflammation in the nodes, we go back to original plan. We need to scan and make sure it is no where else.
I took it like a champ today. Go Alisa!!!
Wednesday, March 16, 2011
just kidding
Changed my mind.
I felt so good about my decision this morning. Took my time getting the kids ready. Breakfast, homework, chores, hairdos. Thinking how great it was I could try something for this cancer that would not take me away from home.
Met with the trial nurse after I got them off to school. Got all the details about the vaccine. Really didn't like some of them. So I called and scheduled surgery for Friday. Ultra sound to get the exact spot (although I can now feel it with my fingers) tomorrow. Trial is off. I don't know exactly what we are going to do after that. But it's a start. I know there is really no great option right now.
But this one I feel good about. If you haven't noticed, I might have some negative thoughts that creep up every now and then. For some reason having a tumor in my leg does not help. The creepy thing stares at me from inside, planning her next move with a wicked laugh. I'm seriously hearing voices from inside my leg.
And I'm talking back. "Game on Cancer."
p.s.
My moods are changing every hour, so posts here are not an accurate picture of my day. I was thinking today I need to see a motivational speaker after every depressing Dr. appointment. That is probably called counseling. And there are those voices...
But usually (like right now) I'm thinking I'm just fine. Just happy. Just like I'm supposed to feel. Just like it used to be. I feel like me sometimes. Just enough to get me through.
I felt so good about my decision this morning. Took my time getting the kids ready. Breakfast, homework, chores, hairdos. Thinking how great it was I could try something for this cancer that would not take me away from home.
Met with the trial nurse after I got them off to school. Got all the details about the vaccine. Really didn't like some of them. So I called and scheduled surgery for Friday. Ultra sound to get the exact spot (although I can now feel it with my fingers) tomorrow. Trial is off. I don't know exactly what we are going to do after that. But it's a start. I know there is really no great option right now.
But this one I feel good about. If you haven't noticed, I might have some negative thoughts that creep up every now and then. For some reason having a tumor in my leg does not help. The creepy thing stares at me from inside, planning her next move with a wicked laugh. I'm seriously hearing voices from inside my leg.
And I'm talking back. "Game on Cancer."
p.s.
My moods are changing every hour, so posts here are not an accurate picture of my day. I was thinking today I need to see a motivational speaker after every depressing Dr. appointment. That is probably called counseling. And there are those voices...
But usually (like right now) I'm thinking I'm just fine. Just happy. Just like I'm supposed to feel. Just like it used to be. I feel like me sometimes. Just enough to get me through.
Tuesday, March 15, 2011
tmi
The Dr. today, the melanoma specialist of Utah, agrees with the first surgeon: Try the vaccine injections first.
I can't help but think, Really? This is it? This is the best you can give me? A trial? Am I down to that? Is this as good as anything you got?
I don't know what I wanted to hear, honestly. I think I wanted someone to say "I see this all the time, this is exactly what we do for it, and this is the kind of response we have for it, and you are going to be okay." I never hear that. Not like they are saying I am terminal, but they just make it sound so serious. Dang it!
He said the chemo to the leg (ili) would not work because my tumor is too high up on the thigh. He said that might have been an option if I just had the first metastasis (on the knee) to deal with. So we rule that out. That is okay, I've never been 100% sure on that one.
Biochemo he says would be better with more disease to measure it by. It is a very toxic treatment for a little response rate (which is what everything has at this point I guess). But in some people it provides a durable cure. So that is for sure an option down the road. I thought now too, but maybe I should try something easier.
The vaccine is promising in a small percentage of cases. And that is the case for all my options. And that is why I'm a case right now. It makes sense to these guys to try something that is easier on the body, because I could be one of those great responders. If it works on the tumor it is likely providing a systemic response that is working on any other cancer cells that may be in the body. They inject the tumor (guided by ultrasound) every 2 weeks and see if it's shrinking. Scans every 3 months. Take it out if its not responding or growing too fast.
"How long do we just wait to see if it's working?" "I don't know, what if you saw that tumor shrink within a couple treatments?"
I'm not sure I'm in a frame of mind to decide what is best. This is what the specialists think is best. I need to trust them and go for it. I am filling out the paper work tomorrow and will make sure that is the right decision before we start (hopefully the end of next week). But living with a tumor? That is going to hard.
Why is this stressing me out? A wrong decision could mean pain. Not for me, but for everyone I love. The more they love me, the more they get hurt. Think about hurting your husband, parents, kids, siblings, all your friends. The weight so heavy. I know no one would blame me for anything but they watch me suffer and I watch them suffer. All of them.
That hurts to even write it, but that is what I feel like.
In response to the "how bad is this" question I asked the Dr. today: "I can't give you exact numbers. I can tell you if we did nothing at all you would die of melanoma. I can't tell you if that would be in three months or three years." I'm not even including the most depressing quote.
On the brighter side, let me tell you all the good things the Dr. had to say:
*"I've seen people come back that haven't had melanoma for 30 years."
*"Our goal is to cure you of melanoma so you are around to see your kids get married and all that."
*"I have seen some very dramatic responses with this trial."
*"There are a certain percentage of patients that have it come back in their extremities and it doesn't go anywhere. I've seen it a number of times."
In response to my statement "It sounds so hopeless." "It's not hopeless. One thing you have to remember about melanoma is it's so tied into the immune system that I have seen a number of times patients go into spontaneous remission just on their own. Their body recognizes it and kills it. It's a difficult situation, but not hopeless."
But when I try to get numbers out of him on any of this he will not tell. Maybe they don't matter. I could definitely be one of the some that he is talking about.
How am I today? I am not okay. I have to be strong around the kids. I have to be mom around the kids. I have to put on a birthday party and smile all night. But when they go to bed and it's me and Josh I just want to cry.
A fire truck might have even pulled up to the house today. Just that kind of day. Excited for tomorrow. And it feels so much like spring!
I can't help but think, Really? This is it? This is the best you can give me? A trial? Am I down to that? Is this as good as anything you got?
I don't know what I wanted to hear, honestly. I think I wanted someone to say "I see this all the time, this is exactly what we do for it, and this is the kind of response we have for it, and you are going to be okay." I never hear that. Not like they are saying I am terminal, but they just make it sound so serious. Dang it!
He said the chemo to the leg (ili) would not work because my tumor is too high up on the thigh. He said that might have been an option if I just had the first metastasis (on the knee) to deal with. So we rule that out. That is okay, I've never been 100% sure on that one.
Biochemo he says would be better with more disease to measure it by. It is a very toxic treatment for a little response rate (which is what everything has at this point I guess). But in some people it provides a durable cure. So that is for sure an option down the road. I thought now too, but maybe I should try something easier.
The vaccine is promising in a small percentage of cases. And that is the case for all my options. And that is why I'm a case right now. It makes sense to these guys to try something that is easier on the body, because I could be one of those great responders. If it works on the tumor it is likely providing a systemic response that is working on any other cancer cells that may be in the body. They inject the tumor (guided by ultrasound) every 2 weeks and see if it's shrinking. Scans every 3 months. Take it out if its not responding or growing too fast.
"How long do we just wait to see if it's working?" "I don't know, what if you saw that tumor shrink within a couple treatments?"
I'm not sure I'm in a frame of mind to decide what is best. This is what the specialists think is best. I need to trust them and go for it. I am filling out the paper work tomorrow and will make sure that is the right decision before we start (hopefully the end of next week). But living with a tumor? That is going to hard.
Why is this stressing me out? A wrong decision could mean pain. Not for me, but for everyone I love. The more they love me, the more they get hurt. Think about hurting your husband, parents, kids, siblings, all your friends. The weight so heavy. I know no one would blame me for anything but they watch me suffer and I watch them suffer. All of them.
That hurts to even write it, but that is what I feel like.
In response to the "how bad is this" question I asked the Dr. today: "I can't give you exact numbers. I can tell you if we did nothing at all you would die of melanoma. I can't tell you if that would be in three months or three years." I'm not even including the most depressing quote.
On the brighter side, let me tell you all the good things the Dr. had to say:
*"I've seen people come back that haven't had melanoma for 30 years."
*"Our goal is to cure you of melanoma so you are around to see your kids get married and all that."
*"I have seen some very dramatic responses with this trial."
*"There are a certain percentage of patients that have it come back in their extremities and it doesn't go anywhere. I've seen it a number of times."
In response to my statement "It sounds so hopeless." "It's not hopeless. One thing you have to remember about melanoma is it's so tied into the immune system that I have seen a number of times patients go into spontaneous remission just on their own. Their body recognizes it and kills it. It's a difficult situation, but not hopeless."
But when I try to get numbers out of him on any of this he will not tell. Maybe they don't matter. I could definitely be one of the some that he is talking about.
How am I today? I am not okay. I have to be strong around the kids. I have to be mom around the kids. I have to put on a birthday party and smile all night. But when they go to bed and it's me and Josh I just want to cry.
A fire truck might have even pulled up to the house today. Just that kind of day. Excited for tomorrow. And it feels so much like spring!
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