quick update

Thanks. I seem to go through phases when it comes to posting here. I try to keep up and check in at least a few times a week, but generally only reply if I feel like there's actually something I can help with (previous experience with therapies/side effects, how some of the therapies work, or support if it seems like they aren't getting much). I have been fortunate enough with my therapies that I often do not post updates for weeks or months because either there isn't anything to report, or because I'm waiting on some information I feel is important before throwing things out into the world (I'm a list maker and a bit of a control freak much of the time- I like to feel like I have all the information). I also try (when possible) to post the good news. So often I read through posts from people who have bad news or are recently diagnosed and scared. I very much remember having those fears and this forum can be a wonderful source of support, but I also think it's helpful to post good news now and then so that people can see that there are people who are beating the odds and doing at least ok.

I think it helps develop and keep a positive attitude, and I've found that a sense of humor is also very helpful, though when typing on a computer, a sense of humor (or at leasy my sense of humor) can be mis-interpreted or simply unapreciated. I therefore save my odd (and often a little dark) sense of humor for people who really know me well (family and close friends) and stick to sincerity for this forum. 

Given my history, I am thrilled whenever I get even a little break, but it does get hard to trust it as these breaks never seem to last very long. Really hoping that in 6 weeks things still look good and I still won't have to do another gamma knife- I already have 2 sets of dents in my forehead from the first 2 rounds. Plus, who has the time? It takes more than a day because they want me at the hospital at 6am, which means we have to drive the 3.5 hrs the afternoon/night before. Happily both times we've been done around noon or shortly after, but then there's still the 3.5 hr drive home and I basically sleep the whole day so each session takes at least a day and a half. During that time I really can't do anything- can't clean my house, can't do yard work, can't do anything related to my job (and have to take time off because they only do them Mon-Fri). I have excellent support at work and very much realize how lucky I am to have that, but I have also only been in my position for a few months and I haven't really earned any time off yet (especially after the surgery which ate up all 2 days I had earned up to that point). 

I realize (and have many people reminding me) that my health is more important than a few job duties, but I really like my job and as a relatively new hire I really wanted to do a good job (again, control freak) and each time I have to do something that takes me out of the office it sets me back and puts me behind, which makes me feel like I'm not fulfilling what I said I would do- something I have always hated. It really bothers me when, for whatever reason, I don't or can't follow through with something I said I would do, and I also really hate not being on time or early so delays in completing work duties really drive me nuts. Not to mention the no driving rules attached to a craniotomy (or even to gamma knife), which makes me dependant on others (mostly my husband) for getting anywhere as we live in an area without public transportation (there is downtown, but we are outside the radius that is served by the public transportation, way up on a hill). 

Anyway, another unneccessariy wordy respons when mostly I just wanted to say Thanks for the positive and supportive responses!

-Eva

Thanks. I seem to go through phases when it comes to posting here. I try to keep up and check in at least a few times a week, but generally only reply if I feel like there's actually something I can help with (previous experience with therapies/side effects, how some of the therapies work, or support if it seems like they aren't getting much). I have been fortunate enough with my therapies that I often do not post updates for weeks or months because either there isn't anything to report, or because I'm waiting on some information I feel is important before throwing things out into the world (I'm a list maker and a bit of a control freak much of the time- I like to feel like I have all the information). I also try (when possible) to post the good news. So often I read through posts from people who have bad news or are recently diagnosed and scared. I very much remember having those fears and this forum can be a wonderful source of support, but I also think it's helpful to post good news now and then so that people can see that there are people who are beating the odds and doing at least ok.

I think it helps develop and keep a positive attitude, and I've found that a sense of humor is also very helpful, though when typing on a computer, a sense of humor (or at leasy my sense of humor) can be mis-interpreted or simply unapreciated. I therefore save my odd (and often a little dark) sense of humor for people who really know me well (family and close friends) and stick to sincerity for this forum. 

Given my history, I am thrilled whenever I get even a little break, but it does get hard to trust it as these breaks never seem to last very long. Really hoping that in 6 weeks things still look good and I still won't have to do another gamma knife- I already have 2 sets of dents in my forehead from the first 2 rounds. Plus, who has the time? It takes more than a day because they want me at the hospital at 6am, which means we have to drive the 3.5 hrs the afternoon/night before. Happily both times we've been done around noon or shortly after, but then there's still the 3.5 hr drive home and I basically sleep the whole day so each session takes at least a day and a half. During that time I really can't do anything- can't clean my house, can't do yard work, can't do anything related to my job (and have to take time off because they only do them Mon-Fri). I have excellent support at work and very much realize how lucky I am to have that, but I have also only been in my position for a few months and I haven't really earned any time off yet (especially after the surgery which ate up all 2 days I had earned up to that point). 

I realize (and have many people reminding me) that my health is more important than a few job duties, but I really like my job and as a relatively new hire I really wanted to do a good job (again, control freak) and each time I have to do something that takes me out of the office it sets me back and puts me behind, which makes me feel like I'm not fulfilling what I said I would do- something I have always hated. It really bothers me when, for whatever reason, I don't or can't follow through with something I said I would do, and I also really hate not being on time or early so delays in completing work duties really drive me nuts. Not to mention the no driving rules attached to a craniotomy (or even to gamma knife), which makes me dependant on others (mostly my husband) for getting anywhere as we live in an area without public transportation (there is downtown, but we are outside the radius that is served by the public transportation, way up on a hill). 

Anyway, another unneccessariy wordy respons when mostly I just wanted to say Thanks for the positive and supportive responses!

-Eva

Thanks. I seem to go through phases when it comes to posting here. I try to keep up and check in at least a few times a week, but generally only reply if I feel like there's actually something I can help with (previous experience with therapies/side effects, how some of the therapies work, or support if it seems like they aren't getting much). I have been fortunate enough with my therapies that I often do not post updates for weeks or months because either there isn't anything to report, or because I'm waiting on some information I feel is important before throwing things out into the world (I'm a list maker and a bit of a control freak much of the time- I like to feel like I have all the information). I also try (when possible) to post the good news. So often I read through posts from people who have bad news or are recently diagnosed and scared. I very much remember having those fears and this forum can be a wonderful source of support, but I also think it's helpful to post good news now and then so that people can see that there are people who are beating the odds and doing at least ok.

I think it helps develop and keep a positive attitude, and I've found that a sense of humor is also very helpful, though when typing on a computer, a sense of humor (or at leasy my sense of humor) can be mis-interpreted or simply unapreciated. I therefore save my odd (and often a little dark) sense of humor for people who really know me well (family and close friends) and stick to sincerity for this forum. 

Given my history, I am thrilled whenever I get even a little break, but it does get hard to trust it as these breaks never seem to last very long. Really hoping that in 6 weeks things still look good and I still won't have to do another gamma knife- I already have 2 sets of dents in my forehead from the first 2 rounds. Plus, who has the time? It takes more than a day because they want me at the hospital at 6am, which means we have to drive the 3.5 hrs the afternoon/night before. Happily both times we've been done around noon or shortly after, but then there's still the 3.5 hr drive home and I basically sleep the whole day so each session takes at least a day and a half. During that time I really can't do anything- can't clean my house, can't do yard work, can't do anything related to my job (and have to take time off because they only do them Mon-Fri). I have excellent support at work and very much realize how lucky I am to have that, but I have also only been in my position for a few months and I haven't really earned any time off yet (especially after the surgery which ate up all 2 days I had earned up to that point). 

I realize (and have many people reminding me) that my health is more important than a few job duties, but I really like my job and as a relatively new hire I really wanted to do a good job (again, control freak) and each time I have to do something that takes me out of the office it sets me back and puts me behind, which makes me feel like I'm not fulfilling what I said I would do- something I have always hated. It really bothers me when, for whatever reason, I don't or can't follow through with something I said I would do, and I also really hate not being on time or early so delays in completing work duties really drive me nuts. Not to mention the no driving rules attached to a craniotomy (or even to gamma knife), which makes me dependant on others (mostly my husband) for getting anywhere as we live in an area without public transportation (there is downtown, but we are outside the radius that is served by the public transportation, way up on a hill). 

Anyway, another unneccessariy wordy respons when mostly I just wanted to say Thanks for the positive and supportive responses!

-Eva

I started on PD-1 in early June, so about 3 months. I have had a total of 6 doses with no noticable side effects as far as loss of energy, changes in appetite, etc. When I started I had a rather large tumor burden that included over 30 subcutaneous masses and a large number of internal masses, some of which were quite large. I was a bit lucky in that most of them were in lymph nodes, not in organs, but I had some scary ones too- one around my aorta, and some around my kidneys that were causing a huge amount of back pain. After the first dose I had one of the masses under my left arm (where I still have lymph nodes) that had been growing some after failing the BRAF/MEK combo, (that tumor was the red flag that the meds were failing) blew up to about 3 times its size and was very red and painful. So much so that I could not put my arm down by my side and had to walk around with my hand on my hip and sleep with a large pillow between my left arm and the rest of my body to try and avoid any pressure. The swelling and pain lasted for about 5 days, then the mass started to reduce and within a week was smaller than its original size. To my knowledge, that's the only mass that did that. Keep in mind that before starting PD-1 I'd had IL-2, Ipi, and the BRAF/MEK, so I was quite skeptical that the PD-1 was doing anything as I had had a similar experience on the Ipi where a couple of tumors got really big, then reduced, but all the while other masses were popping up and growing without reducing. Technically this reaction was within a year of starting Ipi, so perhaps it was a sort of "leftover" Ipi reaction, which is part of why I was so skeptical that it might be the PD-1 and none of my other tumors did that (that I could tell). 

So in short, I don't know why that one decided to blow up after the PD-1 started, but I do know that I've had no real (or reportable, or anything else) side effects from the PD-1 and after the first 4 doses  scans of my body showed that all of my tumors had shrunk by at least half, if they were even still visible at all. My brain has been a bit of a different story, but that began well before the PD-1 and the current working theory is that the PD-1/my immune system is finding its way in there to work as well. We'll see what the MRI in 6 weeks shows, but for now I'm pretty happy about how things have been going. 

While I was on the Expanded Acess Program (before FDA approval) the nurses who were administering the PD-1 explained that no one they had given the drug to had reported any side effects, they don't premedicate with anything (unlike some of the other therapies where they give you steroids or anti-histamines, or even just fluids) and once the drug is ready to go it only takes about a half an hour to get the infusion (then a few more min to flush the lines/port and remove the catheter if you don't have a port). It's honestly the easiest therapy I've done to date.

Best of luck and wishing you great success

-Eva

I started on PD-1 in early June, so about 3 months. I have had a total of 6 doses with no noticable side effects as far as loss of energy, changes in appetite, etc. When I started I had a rather large tumor burden that included over 30 subcutaneous masses and a large number of internal masses, some of which were quite large. I was a bit lucky in that most of them were in lymph nodes, not in organs, but I had some scary ones too- one around my aorta, and some around my kidneys that were causing a huge amount of back pain. After the first dose I had one of the masses under my left arm (where I still have lymph nodes) that had been growing some after failing the BRAF/MEK combo, (that tumor was the red flag that the meds were failing) blew up to about 3 times its size and was very red and painful. So much so that I could not put my arm down by my side and had to walk around with my hand on my hip and sleep with a large pillow between my left arm and the rest of my body to try and avoid any pressure. The swelling and pain lasted for about 5 days, then the mass started to reduce and within a week was smaller than its original size. To my knowledge, that's the only mass that did that. Keep in mind that before starting PD-1 I'd had IL-2, Ipi, and the BRAF/MEK, so I was quite skeptical that the PD-1 was doing anything as I had had a similar experience on the Ipi where a couple of tumors got really big, then reduced, but all the while other masses were popping up and growing without reducing. Technically this reaction was within a year of starting Ipi, so perhaps it was a sort of "leftover" Ipi reaction, which is part of why I was so skeptical that it might be the PD-1 and none of my other tumors did that (that I could tell). 

So in short, I don't know why that one decided to blow up after the PD-1 started, but I do know that I've had no real (or reportable, or anything else) side effects from the PD-1 and after the first 4 doses  scans of my body showed that all of my tumors had shrunk by at least half, if they were even still visible at all. My brain has been a bit of a different story, but that began well before the PD-1 and the current working theory is that the PD-1/my immune system is finding its way in there to work as well. We'll see what the MRI in 6 weeks shows, but for now I'm pretty happy about how things have been going. 

While I was on the Expanded Acess Program (before FDA approval) the nurses who were administering the PD-1 explained that no one they had given the drug to had reported any side effects, they don't premedicate with anything (unlike some of the other therapies where they give you steroids or anti-histamines, or even just fluids) and once the drug is ready to go it only takes about a half an hour to get the infusion (then a few more min to flush the lines/port and remove the catheter if you don't have a port). It's honestly the easiest therapy I've done to date.

Best of luck and wishing you great success

-Eva

I started on PD-1 in early June, so about 3 months. I have had a total of 6 doses with no noticable side effects as far as loss of energy, changes in appetite, etc. When I started I had a rather large tumor burden that included over 30 subcutaneous masses and a large number of internal masses, some of which were quite large. I was a bit lucky in that most of them were in lymph nodes, not in organs, but I had some scary ones too- one around my aorta, and some around my kidneys that were causing a huge amount of back pain. After the first dose I had one of the masses under my left arm (where I still have lymph nodes) that had been growing some after failing the BRAF/MEK combo, (that tumor was the red flag that the meds were failing) blew up to about 3 times its size and was very red and painful. So much so that I could not put my arm down by my side and had to walk around with my hand on my hip and sleep with a large pillow between my left arm and the rest of my body to try and avoid any pressure. The swelling and pain lasted for about 5 days, then the mass started to reduce and within a week was smaller than its original size. To my knowledge, that's the only mass that did that. Keep in mind that before starting PD-1 I'd had IL-2, Ipi, and the BRAF/MEK, so I was quite skeptical that the PD-1 was doing anything as I had had a similar experience on the Ipi where a couple of tumors got really big, then reduced, but all the while other masses were popping up and growing without reducing. Technically this reaction was within a year of starting Ipi, so perhaps it was a sort of "leftover" Ipi reaction, which is part of why I was so skeptical that it might be the PD-1 and none of my other tumors did that (that I could tell). 

So in short, I don't know why that one decided to blow up after the PD-1 started, but I do know that I've had no real (or reportable, or anything else) side effects from the PD-1 and after the first 4 doses  scans of my body showed that all of my tumors had shrunk by at least half, if they were even still visible at all. My brain has been a bit of a different story, but that began well before the PD-1 and the current working theory is that the PD-1/my immune system is finding its way in there to work as well. We'll see what the MRI in 6 weeks shows, but for now I'm pretty happy about how things have been going. 

While I was on the Expanded Acess Program (before FDA approval) the nurses who were administering the PD-1 explained that no one they had given the drug to had reported any side effects, they don't premedicate with anything (unlike some of the other therapies where they give you steroids or anti-histamines, or even just fluids) and once the drug is ready to go it only takes about a half an hour to get the infusion (then a few more min to flush the lines/port and remove the catheter if you don't have a port). It's honestly the easiest therapy I've done to date.

Best of luck and wishing you great success

-Eva