Wednesday, November 27, 2013
IPI it is
After a very anxious week, here we are. With IPI dripping in my veins. My kidney is functioning at about 50%, so it looks like we will keep it in there. For now. I am not entirely sure how I feel about all this, but taking action right this very second feels a hundred times better than having no idea what is around the corner. At least I can plan on being sick. And plan on an amazing response. :)
Tuesday, November 12, 2013
the waiting game
Yesterday we pushed back the IPI infusion to the 27th. The tumor board discussed the case. There was only minimal growth in the kidney area, but it has an
"invasion
component" that makes it necessary to treat. It used to be sitting just
on top of the kidneys, but is now reaching it's little fingers into
it. One concern with tumors
there is the possibility of the cancer throwing some tumor emboli out
into the body (like blood clots but made of tumors?). Never heard of
that! Didn't need another way to die of cancer to keep me up at night,
did I?
So they want to see if surgery would indeed be a possibility. They need to see how well that kidney is functioning in order to make that determination. If the kidney is not working, they may want to take it out. If it is working, the surgery would compromise it's function, and we aren't really interested in that. I really think it's still working (going with my gut here) and that we will end up doing the IPI and not the surgery, but I don't mind having all the facts before we make that decision.
If the kidney is not functioning, we would do a PET scan and see where the other cancer is (if there is any other cancer, they didn't report the status of my other little tumors) to see if it all could be surgically resected. If all the cancer could come out with the knife, that would be pretty exciting. Going from 100+ tumors to NED (no evidence of disease, the gold standard) would be incredible.
The previous decision to go with IPI before the TIL (Seattle) trial came down to the numbers, really. We took out the money factor, and the side-effects factor, and it still looked like IPI had the better chance at a response. The attractive thing about the TIL trial is the possibility for getting a complete response (all my cancer gone). It will be hard if I never get a chance at that, and just possibly the stars lined up for that treatment, I may never know. But I would hate even more to not give IPI a chance again, after what my doctor called an "unprecedented response" with my one infusion.
I wish these treatments were studied enough to have a clear outline of what you do first, what you do next, what you save for last. We don't have that with melanoma as the drugs are so new and the data so scarce.
Blah, blah, blah. This blog has turned into boring medical blah. It's the only thing right now in my small world that is blah and yet that's all I write about. Huh. I will work on that.
So they want to see if surgery would indeed be a possibility. They need to see how well that kidney is functioning in order to make that determination. If the kidney is not working, they may want to take it out. If it is working, the surgery would compromise it's function, and we aren't really interested in that. I really think it's still working (going with my gut here) and that we will end up doing the IPI and not the surgery, but I don't mind having all the facts before we make that decision.
If the kidney is not functioning, we would do a PET scan and see where the other cancer is (if there is any other cancer, they didn't report the status of my other little tumors) to see if it all could be surgically resected. If all the cancer could come out with the knife, that would be pretty exciting. Going from 100+ tumors to NED (no evidence of disease, the gold standard) would be incredible.
The previous decision to go with IPI before the TIL (Seattle) trial came down to the numbers, really. We took out the money factor, and the side-effects factor, and it still looked like IPI had the better chance at a response. The attractive thing about the TIL trial is the possibility for getting a complete response (all my cancer gone). It will be hard if I never get a chance at that, and just possibly the stars lined up for that treatment, I may never know. But I would hate even more to not give IPI a chance again, after what my doctor called an "unprecedented response" with my one infusion.
I wish these treatments were studied enough to have a clear outline of what you do first, what you do next, what you save for last. We don't have that with melanoma as the drugs are so new and the data so scarce.
Blah, blah, blah. This blog has turned into boring medical blah. It's the only thing right now in my small world that is blah and yet that's all I write about. Huh. I will work on that.
Friday, November 1, 2013
a plan!
Things are looking...good? It's all relative, right? The cancer is really only growing in the right kidney area. There are multiple tumors there, and they are actually smaller than they were when we started PD-1, but they are invading the pole of the kidney. So we need to take some action. This is the spot they radiated in January of this year and the place that was causing pain when I started the PD-1 in May.
We have a date to start IPI again, November 13th. The doctor will take my case to the tumor board on Thursday and see if the surgeons think it's operable. But most likely we are going to see if that miracle IPI will work it's magic again.
Josh and I think this is a great plan. We wish I didn't have cancer at all, but I have a ton less of it after this last surgery, and the PD-1 seems to have kept things in other places pretty stable. We are feeling really very lucky.
We have a date to start IPI again, November 13th. The doctor will take my case to the tumor board on Thursday and see if the surgeons think it's operable. But most likely we are going to see if that miracle IPI will work it's magic again.
Josh and I think this is a great plan. We wish I didn't have cancer at all, but I have a ton less of it after this last surgery, and the PD-1 seems to have kept things in other places pretty stable. We are feeling really very lucky.
Thursday, October 31, 2013
happy halloween
We made it though the crazy holiday! I didn't have to do anything for costumes this year, we all just found something that would work.
James couldn't dress up for school. And I wasn't around tonight-I was dressed up like a cancer patient to have my CT scan and brain MRI done.
 |
| Oh, Sam. |
 | ||
| Luke got a kick out of people who didn't know him saying, "You're Luke!!" The force is strong with this one. |
 |
| Josh won the office costume contest with the old Ken doll trick. |
James couldn't dress up for school. And I wasn't around tonight-I was dressed up like a cancer patient to have my CT scan and brain MRI done.
Doesn't get much scarier than that! Results tomorrow afternoon.
 |
| MRI photo. Boo!!! |
Friday, October 25, 2013
great debate
I haven't learned much from the Seattle team this week. They told me I would be starting either the first week of November (the one after Halloween), or the last week of November. I'm guessing those dates are due to Dr. availability. As we haven't gotten an answer from the insurance company yet (it is pending a Dr. review), it would most likely be the end of November.
Of course, that is if I decide to go on with the trial.
This trial would be a great opportunity. I don't know if I will ever qualify again, so this might be the time to do it. It has a response rate of around 50%. I have read that 25% will see all their tumors disappear. It is a rough treatment, and I'm trying not to let that factor into the equation. Being sick is not a negative for me. The sicker the better. I have developed a strange craving for nausea and fevers. I associate those feelings with shrinking tumors, and I miss them so very much (but wait till they are actually happening, then I'm sure to change my story). This trial is one of the most advanced and individual ways of treating cancer. It uses my own tumor attacking T-cells (which have proved pretty amazing in the past). It is a one time treatment. I thought I would only be in the hospital for 2 weeks, but it looks like 3-4 would be the more normal range. However, none of this come-every-other-week nonsense. Once I've finished the hospital stay in Seattle it is likely we can do most of the follow up in Utah at the Hunstman Center.
So why do I hesitate? This is, after all, my dream trial because it is so extreme.
These are my thoughts. The trial boasts 50% response rates. When a person who has initially responded to IPI (this is the drug I did when it went to my brain) tries IPI again after progressing (they call it reinduction) they think there is a 60% chance you would respond again (although the numbers on a complete response are not as high as the trial). And with my response, don't ya think my chances are higher than that? And now, with the PD-1 in me, possibly those two could work together to do something even more drastic (trial combining the two drugs put the response rate at 60%). So why in the world would I just not do IPI again?
The only problem with doing IPI again is risking the side-effects. And actually, I am not as worried about the colitis, as not being able to qualify for things down the line because of it (remember the only reason I got onto the PD-1 trial is because they were studying if people like me with major toxicities (side effects) to IPI would have any side effects to the PD-1). The biggest thing at stake is not being able to get onto the TIL trial in Seattle after doing IPI (even though they will freeze my cells for treatment down the road). If I had colitis again they would require a normal colonoscopy (which mine after IPI was not normal, even on steroids).
So why don't I just do the trial first? There are two drawbacks (maybe three if the insurance isn't on board, although I am not factoring money into the equation as per Josh). I am worried about killing off my immune system, because it has worked so well in the past (the first part of the trial is lymphodepletion where they kill off your immune system in something similar to being prepared for a bone marrow transplant). I realize it has not worked completely well, and I still have melanoma so the immune system hasn't figured it out completely, but still. I can shrink tumors in days. Days!! Do I just need a dose of IPI every year to keep me stable?? If the TIL trial didn't work, would the new immune system work as effectivley when we did IPI again? This is a question my doctor can't really answer (there have been so few people who have done this, there are a lot of unknowns). They just don't have data.
The other concern I have is the long term effects from the TIL trial. There doesn't seem to be anything major, and after communicating with some of the responders of this trial, they do not complain at all (when something obliterates your disease how can you have anything bad to say about it?). But their white counts remain low years later, and some have complained of mild fatigue (Valerie are you reading? What say you?). Also, then if your counts are low you would have a hard time getting onto trials (trials are a melanoma stage IV patient's hope). Yes, these are not big prices to pay, but what if I didn't have to pay them? What if IPI would do what it did once and keep me pretty stable for another year?
I REALLY hate permanent damage. This lymphedema in my arm is enough to remind of that. I went into the therapist with it 10% bigger than my other arm. After a week and a half of therapy, and wrapping, and massages, and and the big pain the daily compression is, we got it down to 4%. I should be thrilled, but it will take daily care and lots of caution to keep it down. And it spread to my fingers last week, which just seems cruel. I use those for everything! Why my right arm? Wasn't my leg enough?
I wish my decision was easy. This is confusing, right? I am trying really hard not to take into account money, my love of extreme discomfort, the luxury of being treated at home, and even the long term consequences (as they aren't that bad). I simply want to do what would have the best chance at working. And no one knows what it is.
I am waiting for something to feel right. And I suppose after the insurance company has made it's decision, and we scan and see what the cancer is doing, that feeling will come. Either way I have some pretty exciting options. I am so ready to fight again. Too much down time. Things are way too easy. October is the best month of all to be a stay at home mom, and I have enjoyed every minute of cancer distraction it has offered me.
Of course, that is if I decide to go on with the trial.
This trial would be a great opportunity. I don't know if I will ever qualify again, so this might be the time to do it. It has a response rate of around 50%. I have read that 25% will see all their tumors disappear. It is a rough treatment, and I'm trying not to let that factor into the equation. Being sick is not a negative for me. The sicker the better. I have developed a strange craving for nausea and fevers. I associate those feelings with shrinking tumors, and I miss them so very much (but wait till they are actually happening, then I'm sure to change my story). This trial is one of the most advanced and individual ways of treating cancer. It uses my own tumor attacking T-cells (which have proved pretty amazing in the past). It is a one time treatment. I thought I would only be in the hospital for 2 weeks, but it looks like 3-4 would be the more normal range. However, none of this come-every-other-week nonsense. Once I've finished the hospital stay in Seattle it is likely we can do most of the follow up in Utah at the Hunstman Center.
So why do I hesitate? This is, after all, my dream trial because it is so extreme.
These are my thoughts. The trial boasts 50% response rates. When a person who has initially responded to IPI (this is the drug I did when it went to my brain) tries IPI again after progressing (they call it reinduction) they think there is a 60% chance you would respond again (although the numbers on a complete response are not as high as the trial). And with my response, don't ya think my chances are higher than that? And now, with the PD-1 in me, possibly those two could work together to do something even more drastic (trial combining the two drugs put the response rate at 60%). So why in the world would I just not do IPI again?
The only problem with doing IPI again is risking the side-effects. And actually, I am not as worried about the colitis, as not being able to qualify for things down the line because of it (remember the only reason I got onto the PD-1 trial is because they were studying if people like me with major toxicities (side effects) to IPI would have any side effects to the PD-1). The biggest thing at stake is not being able to get onto the TIL trial in Seattle after doing IPI (even though they will freeze my cells for treatment down the road). If I had colitis again they would require a normal colonoscopy (which mine after IPI was not normal, even on steroids).
So why don't I just do the trial first? There are two drawbacks (maybe three if the insurance isn't on board, although I am not factoring money into the equation as per Josh). I am worried about killing off my immune system, because it has worked so well in the past (the first part of the trial is lymphodepletion where they kill off your immune system in something similar to being prepared for a bone marrow transplant). I realize it has not worked completely well, and I still have melanoma so the immune system hasn't figured it out completely, but still. I can shrink tumors in days. Days!! Do I just need a dose of IPI every year to keep me stable?? If the TIL trial didn't work, would the new immune system work as effectivley when we did IPI again? This is a question my doctor can't really answer (there have been so few people who have done this, there are a lot of unknowns). They just don't have data.
The other concern I have is the long term effects from the TIL trial. There doesn't seem to be anything major, and after communicating with some of the responders of this trial, they do not complain at all (when something obliterates your disease how can you have anything bad to say about it?). But their white counts remain low years later, and some have complained of mild fatigue (Valerie are you reading? What say you?). Also, then if your counts are low you would have a hard time getting onto trials (trials are a melanoma stage IV patient's hope). Yes, these are not big prices to pay, but what if I didn't have to pay them? What if IPI would do what it did once and keep me pretty stable for another year?
I REALLY hate permanent damage. This lymphedema in my arm is enough to remind of that. I went into the therapist with it 10% bigger than my other arm. After a week and a half of therapy, and wrapping, and massages, and and the big pain the daily compression is, we got it down to 4%. I should be thrilled, but it will take daily care and lots of caution to keep it down. And it spread to my fingers last week, which just seems cruel. I use those for everything! Why my right arm? Wasn't my leg enough?
I wish my decision was easy. This is confusing, right? I am trying really hard not to take into account money, my love of extreme discomfort, the luxury of being treated at home, and even the long term consequences (as they aren't that bad). I simply want to do what would have the best chance at working. And no one knows what it is.
I am waiting for something to feel right. And I suppose after the insurance company has made it's decision, and we scan and see what the cancer is doing, that feeling will come. Either way I have some pretty exciting options. I am so ready to fight again. Too much down time. Things are way too easy. October is the best month of all to be a stay at home mom, and I have enjoyed every minute of cancer distraction it has offered me.
Friday, October 18, 2013
til harvest
The cells have grown enough.
I should have jumped for joy when they told me. But I knew they would grow (these are my amazing T cells we are talking about). And I knew when they confirmed this that I would be an anxious mess.
Because now I have a decision to make. I am torn between what I think are my best two options: Ipi here in Utah (the drug I did last June with amazing results and horrible side effects), or the TIL trial in Seattle. Luckily, I don't have to decide just yet. The Seattle doctor is trying to work with my insurance company to get the hospital stay approved (good luck with that!). This will give me some time to continue collecting information and maybe to find some peace.
This is going to be a very hard decision to make. It makes my heart race just thinking about it. I will try and write up the dilemma here in a bit.
I know I am very fortunate to have options. And honestly, they are both really good options. But which is best?....
I should have jumped for joy when they told me. But I knew they would grow (these are my amazing T cells we are talking about). And I knew when they confirmed this that I would be an anxious mess.
Because now I have a decision to make. I am torn between what I think are my best two options: Ipi here in Utah (the drug I did last June with amazing results and horrible side effects), or the TIL trial in Seattle. Luckily, I don't have to decide just yet. The Seattle doctor is trying to work with my insurance company to get the hospital stay approved (good luck with that!). This will give me some time to continue collecting information and maybe to find some peace.
This is going to be a very hard decision to make. It makes my heart race just thinking about it. I will try and write up the dilemma here in a bit.
I know I am very fortunate to have options. And honestly, they are both really good options. But which is best?....
Tuesday, October 8, 2013
stay at home mom
Three weeks at home!! I think that's a first since May. I have not wanted to go anywhere. Not even the grocery store.
And I feel great. The fatigue I had from the PD-1 seems to have disappeared. Tomorrow I have an appointment with the lympedema clinic to get a compression sleeve for my arm and hand so I can start exercising again (impossible lately with the large tumor, and then with the swelling once the tumor was gone).
For a couple of weeks things have felt quite normal. Making jam, volunteering at the school, organizing my house, soccer games, piano practice, church, friends, family dinners. Normal is wonderful. This break has been very good for my spirits.
Next week we should have a better idea if this Seattle trial will be an option. Even if it is, we will need to decide if that is the next step or if we want them to just freeze those cells for future use. I suppose we will be scanning soon to see what's happening. I don't have any more palpable tumors, so I can't really predict how that will go. I don't have any pain, so it can't be that bad.
Thank you all for your kindness and encouragement. I'm starting to believe the best way to learn these two virtues is to be the recipient of them. I should be an expert by now.
And I feel great. The fatigue I had from the PD-1 seems to have disappeared. Tomorrow I have an appointment with the lympedema clinic to get a compression sleeve for my arm and hand so I can start exercising again (impossible lately with the large tumor, and then with the swelling once the tumor was gone).
For a couple of weeks things have felt quite normal. Making jam, volunteering at the school, organizing my house, soccer games, piano practice, church, friends, family dinners. Normal is wonderful. This break has been very good for my spirits.
Next week we should have a better idea if this Seattle trial will be an option. Even if it is, we will need to decide if that is the next step or if we want them to just freeze those cells for future use. I suppose we will be scanning soon to see what's happening. I don't have any more palpable tumors, so I can't really predict how that will go. I don't have any pain, so it can't be that bad.
Thank you all for your kindness and encouragement. I'm starting to believe the best way to learn these two virtues is to be the recipient of them. I should be an expert by now.
Subscribe to:
Posts (Atom)