How do you choose what to do next when you know that all options will lead to pain, in some shape or form?
I went to CHOP today. Since being let go from the Millenium Phase II study, I've been off all medicine and treatment, waiting for my doctors to confer and come up with some new plans. In the meantime, I had a nice Christmas and enjoyed the temporary freedom - for "temporary" is what it is, and I've known that all along. It's amazing how quickly I can get used to not taking medicine, though.
So, now that the holidays are over, it's time to think about What Comes Next. What Comes Next is something that I'm not sure about yet. It is something that will be new and that will come with its own good points and bad points, and it is something that is a little bit scary for the sheer fact that it is unknown. I have multiple options, which is something I wasn't really expecting. The last time we talked with my doctors about new treatments, there were really only two: I could get on the trial and get medicine or I would have no medicine. The fact that there are multiple options is something to be glad about, but it also makes me nervous, because it means I now have to make a choice. The problem is that there are no GOOD options. Everything comes with some major drawbacks, so the task becomes choosing the lesser evil which is actually a greater good in disguise.
The options:
1) There are IV chemos I can go back and try again.
Pros: IV chemos help many people.
Cons: Almost too many to list, but I'll try: IV chemos have never helped me in any discernible way. They would drop my blood counts. I'd probably need lots of transfusions. I'd be very susceptible to illnesses of any kind. I'd be at great risk for infections, which would most likely land me in the ICU. I'd become nauseous. I would lose weight. It's IV, meaning I'd either have to stay overnight for up to a week at a time, or I'd have to come in every day and get an IV every day, or I'd have to come in every day and get a PIC line.
Option one is out.
2) There is a new drug being worked on by my doctor that has shown a lot of promise. In effect, it switches off cancer cells, especially ones that have a special marker. This is a very loose definition of this drug, but that's the gist of it.
Pros: It's very promising, especially with neuroblastoma. It has very mild side effects - no blood count drops, no chance of infections, no transfusions, no nausea.
Cons: They need to see if I have this special marker, but the only way to do this is by actually having a piece of the cancerous cells in my body. The way to get a piece of those cells is through a biopsy. There's no reason yet to put me through a dangerous biopsy yet. They might still have cells they can use from previous biopsies I have had, but at the moment they don't know where. Scary thought, yes? The main problem there is that they are looking at CHOP, but my largest biopsy was done at Sloan-Kettering, and they don't have such easy access there. But, my doctors are now looking.
Option two is out until further notice.
3) We continue with the Millenium drug. I know what you're thinking: what??? Didn't I just say I was off the study? This is what I was thinking too when Dr. M. told me that this was an option. But, she explained, there are ways around the study. First, they had to approach the company making the drug, and make sure that they would be willing to sell the drug without it being a part of a study. Many drug companies won't allow this. This has more to do with business and politics than anything else, which is one of the reasons I've always hated business and politics. I'm not going into it here. But, this company was willing to do it. The next step would be to approach the FDA and get it cleared there. There are many, many steps in that one step, but my doctors would take care of all of this. Another reason why we love them. Then, finally, I would continue the same medicine, but without being part of any kind of study. I would get a lower dosage so that I hopefully won't have such strong side effects as I did while I was on the study (haziness, mouth sores, blood count drops).
Pros: This seems like a good chemo. It's easy to take orally. If all goes according to plan, I shouldn't experience many side effects, and any side effects I do experience should be light and pass quickly.
Cons: When does anything ever happen according to plan?
Still, option three is a distinct possibility. If this chemo does not make it past the study phases, the company could choose to stop making it, and so this may be my only chance to get this medicine. There is no evidence that they will choose to stop making it yet, but because it is a possibility, it seems like a good idea to try an easy-ish chemo while it's available.
4) Do nothing.
Pros: Doing nothing...
Cons: ...except worrying.
Of course, this is always a possibility, but it is especially a possibility here because my cancer is so small now, and the MIBG continues to work inside of me. However, there's no telling how long it will still keep my cancer quiet, and in the past, whenever my cancer has stayed hidden for a while, it has always come back with a vengeance. There's a lot less cancer inside me than there's been in a very long time, but it's still there, and everyone knows that cancer can spread like wildfire.
As much as I'd like to say number 4 is a good option, it really isn't.
It looks like Option 3 is the dubious winner. Or is that me?
Hey Hope,
ReplyDeleteWhatever you do my prayers and thoughts are with you.