NicOz

Audrey,

I'm not sure I have any suggestion as to how to go about it. You are the only one who has any idea of where she is at. All I can say is I was diagnosed at stage 4 with an almost 3 year old. I elected to tell her I was sick and it "might" kill me (as I didn't want to have brain surgery) without her having some forewarning. She's now 6, and every now and then comes out with a doozy of a question that will take my breath away. She's been updated on every treatment and warned of side effects that Mummy may have. But I've always been careful to relate my responses to her cognitive ability. And she can sense if I'm not being totally honest with her, about my treatment- has been able to since around 4. Mine is cluey enough at six, so I can only guess how in tune she'd be with nuances and emotions at 13.

Can you get some counselling to help you with how to go about it? It's hard to do, for me, it was necessary for many reasons. Best wishes for the strength for the difficult task that lies ahead.

Nic

Audrey,

I'm not sure I have any suggestion as to how to go about it. You are the only one who has any idea of where she is at. All I can say is I was diagnosed at stage 4 with an almost 3 year old. I elected to tell her I was sick and it "might" kill me (as I didn't want to have brain surgery) without her having some forewarning. She's now 6, and every now and then comes out with a doozy of a question that will take my breath away. She's been updated on every treatment and warned of side effects that Mummy may have. But I've always been careful to relate my responses to her cognitive ability. And she can sense if I'm not being totally honest with her, about my treatment- has been able to since around 4. Mine is cluey enough at six, so I can only guess how in tune she'd be with nuances and emotions at 13.

Can you get some counselling to help you with how to go about it? It's hard to do, for me, it was necessary for many reasons. Best wishes for the strength for the difficult task that lies ahead.

Nic

It always seems to me, that I feel like I have a bit of control again, when a treatment plan is in place. Great news, Cristy! BRAF-i's can work wonders on the brain. (I had somewhere in the 50+ range, and it was extremely effective in hammering those little suckers! :D)

Go kick mel in the goolies!! Hard.

Nic

It always seems to me, that I feel like I have a bit of control again, when a treatment plan is in place. Great news, Cristy! BRAF-i's can work wonders on the brain. (I had somewhere in the 50+ range, and it was extremely effective in hammering those little suckers! :D)

Go kick mel in the goolies!! Hard.

Nic

I haven't shared too much with this board lately, other than the bare bones of treatment results. Today, I'm stepping out on a limb because I am- what I write is in no way a comparison but hopefully you'll see a bit of empathy in there for how you're feeling.

Emotional exhaustion- I hear you. I hear you so friggin' bad. I went on a trial, not with hopes of cure or even a long term response, but because I needed a break, to get back my energy levels. It doesn't look like it's even given me that. For the first 3.5 months of it, I was in excruciating pain with a side effect from the drug, and chronic pain wears you down. For the past 1.5 months, I've been noticing sub-q's popping up and I'm really pissed off that I didn't get that break I'd so desperately hoped for. Mel IS exhausting.

Today I'm getting on a flight to have my scans (MRI/CT) and anxiety? It's there. What if I have no options left for treatment? And is this the beginning of the end for my time with my girl? (Who has recently began lying in the playground at school, and being still, because she want to get some idea of how it will feel for Mummy when she dies… and just thinking about the times her and Mum have spend together. (Not so au fait with the "wanting to know how it will feel for Mum to be dead, but considerably heartened that she is already developing a coping mechanism if the unthinkable happens- just taking the time to lay and think about Mum, in order to remain close to her. Hard to deal with, for sure)  My point to telling you this, is to let you know that with help, either from us as parents, or from counsellors, they do adapt to their life, because it becomes their reality and their own personal "normal". Apart from this little oddity, she is otherwise the same as other kids- her teachers even said they tend to forget that she has all these things to deal with, because she is well adapted and does not manifest any outwardly noticeable displays. (They just thought she was playing a game when she started doing that, just like other kids do) Ultimately, though I often feel guilty for what she's had to endure for 3 years now, it is Not. My. Fault. Nor is it yours. We know who to blame.

I've never done an official "watch and wait", but I've done an very unoffficial one. Wait for the symptoms to appear, then get them cut out. I think even most NED patients are doing their own version of watch and wait… We all watch and wait for symptoms to appear, so don't feel alone- you aren't doing nothing- you're being vigilent.

As for the "not being grateful for the here and now", I can assure you that I don't feel grateful for the here and now every day, simply because I'm alive, and the expectation that I possibly should be, is bunkum. I may love every day I get to be with my daughter, but there are a lot of things through the course of the day that I'm not grateful for. It's just the price I pay for the thing that matters most- Georgia. not something I have to be grateful for. My personal take on that it's more of a "well, it could be worse". That's what gets me through. I try very hard not to  make mel the centre of my thoughts every day, and if I'm not feeling symptomatic, I manage that- though usually by the skin of my teeth. And it's only pure anger that get's me there- just a refusal to let a crappy disease ruin my time on this earth.

It's a rollercoaster that none of us should have to be on. But it's there and we're strapped in for the ride. But it's a strange rollercoaster in that some things are outside our contol, yet some thing aren't. The things that are outside my control are usually the "down ward" sweep, so sometimes I have to make a concentrated effort to make it a more level, or even upward direction. And that takes some energy… but it gets hard when the energy is depleted from dealing with the downward directions. I find I have to make a concerted effort to move mel off to the side, except when it forces me to deal with it.

I'm sorry the only experience I can draw from is a perspective like this, but I've only ever been stage 4 and in active treatment. My response is intended to just let you know that you aren't alone in your fears and feeling, and not to downplay or suggest a game of "one-upmanship". Fear and feelings aren't quantitative- Fears and feelings are valid and there isn't a yardstick to measure it with.

Maybe some meditation/yoga or something like that will assist you to get your energy levels back up? But emotional energy can be a tough one to get back to where one needs them to be- even with all the good intentions in the world of the person with the problem.

Hoping you feel more on top of things soon!

I haven't shared too much with this board lately, other than the bare bones of treatment results. Today, I'm stepping out on a limb because I am- what I write is in no way a comparison but hopefully you'll see a bit of empathy in there for how you're feeling.

Emotional exhaustion- I hear you. I hear you so friggin' bad. I went on a trial, not with hopes of cure or even a long term response, but because I needed a break, to get back my energy levels. It doesn't look like it's even given me that. For the first 3.5 months of it, I was in excruciating pain with a side effect from the drug, and chronic pain wears you down. For the past 1.5 months, I've been noticing sub-q's popping up and I'm really pissed off that I didn't get that break I'd so desperately hoped for. Mel IS exhausting.

Today I'm getting on a flight to have my scans (MRI/CT) and anxiety? It's there. What if I have no options left for treatment? And is this the beginning of the end for my time with my girl? (Who has recently began lying in the playground at school, and being still, because she want to get some idea of how it will feel for Mummy when she dies… and just thinking about the times her and Mum have spend together. (Not so au fait with the "wanting to know how it will feel for Mum to be dead, but considerably heartened that she is already developing a coping mechanism if the unthinkable happens- just taking the time to lay and think about Mum, in order to remain close to her. Hard to deal with, for sure)  My point to telling you this, is to let you know that with help, either from us as parents, or from counsellors, they do adapt to their life, because it becomes their reality and their own personal "normal". Apart from this little oddity, she is otherwise the same as other kids- her teachers even said they tend to forget that she has all these things to deal with, because she is well adapted and does not manifest any outwardly noticeable displays. (They just thought she was playing a game when she started doing that, just like other kids do) Ultimately, though I often feel guilty for what she's had to endure for 3 years now, it is Not. My. Fault. Nor is it yours. We know who to blame.

I've never done an official "watch and wait", but I've done an very unoffficial one. Wait for the symptoms to appear, then get them cut out. I think even most NED patients are doing their own version of watch and wait… We all watch and wait for symptoms to appear, so don't feel alone- you aren't doing nothing- you're being vigilent.

As for the "not being grateful for the here and now", I can assure you that I don't feel grateful for the here and now every day, simply because I'm alive, and the expectation that I possibly should be, is bunkum. I may love every day I get to be with my daughter, but there are a lot of things through the course of the day that I'm not grateful for. It's just the price I pay for the thing that matters most- Georgia. not something I have to be grateful for. My personal take on that it's more of a "well, it could be worse". That's what gets me through. I try very hard not to  make mel the centre of my thoughts every day, and if I'm not feeling symptomatic, I manage that- though usually by the skin of my teeth. And it's only pure anger that get's me there- just a refusal to let a crappy disease ruin my time on this earth.

It's a rollercoaster that none of us should have to be on. But it's there and we're strapped in for the ride. But it's a strange rollercoaster in that some things are outside our contol, yet some thing aren't. The things that are outside my control are usually the "down ward" sweep, so sometimes I have to make a concentrated effort to make it a more level, or even upward direction. And that takes some energy… but it gets hard when the energy is depleted from dealing with the downward directions. I find I have to make a concerted effort to move mel off to the side, except when it forces me to deal with it.

I'm sorry the only experience I can draw from is a perspective like this, but I've only ever been stage 4 and in active treatment. My response is intended to just let you know that you aren't alone in your fears and feeling, and not to downplay or suggest a game of "one-upmanship". Fear and feelings aren't quantitative- Fears and feelings are valid and there isn't a yardstick to measure it with.

Maybe some meditation/yoga or something like that will assist you to get your energy levels back up? But emotional energy can be a tough one to get back to where one needs them to be- even with all the good intentions in the world of the person with the problem.

Hoping you feel more on top of things soon!

FUn…indeed!!! (Who'd not want to be a part of all the excitement?!?!??) 😛

Jerry, your comment made me laugh, and made me think of a Monty Python skit:

My response is not meant in an inflammatory way, in fact I'm laughing as I type some of this, but I really want some of this to be heard re: BRAFV600E.

Monty Python skit with "You lucky, lucky %@$!@^*!" is in the forefront of my mind while I type this, in order to address a common misconception. (And Lisa, it's not aimed directly at you- I've heard it several times)

Considering it means a "greatly elevated B-Raf kinase activity and constitutive activation of MAPK/ERK downstream…” (For example B-RafV600E exhibits elevated kinase activity that has been estimated to be 50–100-fold more potent than wild-type B-Raf", I’m not altogether sure that “lucky” is a word I’d use. In fact, it’s not a word I associate with melanoma at all)

Maybe (just maybe) WITHOUT that mutation, I’d not have developed 50+ brain mets, and a mass on my adrenal, numerous sub-q’s throughout my body and 3 liver mets, in the space of 2 months which required me to start on a BRAF-i in the first place? (Which, might I add, I am coming off in 2 weeks due to progression, after a mere 3 months effectiveness? Did I forsee that? No- I’d hoped for 6-9 months. But I’m not looking back or questioning my choice of drug. For others it works longer, just not for me. C'est la vie.)

After a while, most people work out that it’s just hopping from stepping stone to stepping stone, and hoping researchers stay a few steps ahead of us. Never look back! You do what you do because you use the best information you have available at the time. (Even with limited choices, we still choose whether to gamble or not to do anything)

I’ve chosen Yervoy as my next gamble. (It was my first choice years ago, but I was ineligible for it, and every other trial that interested me, for various reasons) So several stepping stones later, I end up where I wanted to be originally. A few months here, and a few months there have added up to over 3 years (a veritable lifetime compared to some others) with my daughter… and still Yervoy has no guarantee of success. But I’ll finally be able to have a shot at it. Maybe it’ll work. Maybe it won’t. But it’s the best decision I can make for the moment, and I’m going with it- and I won’t look back. A seer, I’m not. A risk:benefit analyser I am.

Nic 😀

FUn…indeed!!! (Who'd not want to be a part of all the excitement?!?!??) 😛

Jerry, your comment made me laugh, and made me think of a Monty Python skit:

My response is not meant in an inflammatory way, in fact I'm laughing as I type some of this, but I really want some of this to be heard re: BRAFV600E.

Monty Python skit with "You lucky, lucky %@$!@^*!" is in the forefront of my mind while I type this, in order to address a common misconception. (And Lisa, it's not aimed directly at you- I've heard it several times)

Considering it means a "greatly elevated B-Raf kinase activity and constitutive activation of MAPK/ERK downstream…” (For example B-RafV600E exhibits elevated kinase activity that has been estimated to be 50–100-fold more potent than wild-type B-Raf", I’m not altogether sure that “lucky” is a word I’d use. In fact, it’s not a word I associate with melanoma at all)

Maybe (just maybe) WITHOUT that mutation, I’d not have developed 50+ brain mets, and a mass on my adrenal, numerous sub-q’s throughout my body and 3 liver mets, in the space of 2 months which required me to start on a BRAF-i in the first place? (Which, might I add, I am coming off in 2 weeks due to progression, after a mere 3 months effectiveness? Did I forsee that? No- I’d hoped for 6-9 months. But I’m not looking back or questioning my choice of drug. For others it works longer, just not for me. C'est la vie.)

After a while, most people work out that it’s just hopping from stepping stone to stepping stone, and hoping researchers stay a few steps ahead of us. Never look back! You do what you do because you use the best information you have available at the time. (Even with limited choices, we still choose whether to gamble or not to do anything)

I’ve chosen Yervoy as my next gamble. (It was my first choice years ago, but I was ineligible for it, and every other trial that interested me, for various reasons) So several stepping stones later, I end up where I wanted to be originally. A few months here, and a few months there have added up to over 3 years (a veritable lifetime compared to some others) with my daughter… and still Yervoy has no guarantee of success. But I’ll finally be able to have a shot at it. Maybe it’ll work. Maybe it won’t. But it’s the best decision I can make for the moment, and I’m going with it- and I won’t look back. A seer, I’m not. A risk:benefit analyser I am.

Nic 😀

WARNING- The is post contains the word "Funeral". Read at your own risk.

*Sigh*… how it all harkens back to mortality and morbidity! (Being a sarcratic brain-tumour infested soul) I'd like to point out that the breeder can indeed guarantee 70% chirpiness per litter. Is that 'positively' enough?

"happy-chops" (the name of my precious hypocrat) is also extremely uselful. He has a great ear for music and warbles along with songs he likes… so I've recruited him to help with organising with the music choice for my funeral. (Am I allowed to use that word, or is it too distressing?)

WARNING- The is post contains the word "Funeral". Read at your own risk.

*Sigh*… how it all harkens back to mortality and morbidity! (Being a sarcratic brain-tumour infested soul) I'd like to point out that the breeder can indeed guarantee 70% chirpiness per litter. Is that 'positively' enough?

"happy-chops" (the name of my precious hypocrat) is also extremely uselful. He has a great ear for music and warbles along with songs he likes… so I've recruited him to help with organising with the music choice for my funeral. (Am I allowed to use that word, or is it too distressing?)

They are fun, indeed. I got one a couple of weeks ago. Very low mainetenance, but so large that I had to install a larger bath and purchase more towels. And he's got quite the aristocrat nature which keeps me entertained- the perfect pet! (If only he didn't crawl all over me at night, when I'm sleeping… He forgets that I bruise easily!) Knowing they're infamous for their morbid personalities, I requested a chirpy one. You should get one- I'll email you the addy of the "breeder" I purchased him from 😀

They are fun, indeed. I got one a couple of weeks ago. Very low mainetenance, but so large that I had to install a larger bath and purchase more towels. And he's got quite the aristocrat nature which keeps me entertained- the perfect pet! (If only he didn't crawl all over me at night, when I'm sleeping… He forgets that I bruise easily!) Knowing they're infamous for their morbid personalities, I requested a chirpy one. You should get one- I'll email you the addy of the "breeder" I purchased him from 😀

Yes, and the first part of your post concerns your "being aware of me" and having "read my story". Do you really that that equates to knowing me, in any way?  No, it doesn't. So let's use this ignorance of who I am, in order to hint at an intolerance of/or lack of being in active "battle" (*I have melanoma- I'm not in the bloody army!*)  is what has drove me to comment… After all it's such good fodder to set the scene for another attack which is based on a totally flawed and fabricated (supposed) thought process I have… because you know me so well. You've read my story. Obviously that means you think you can read my thoughts. What a gift! Such an exception skill 🙂

I don't rate the validity of anyone's post, and I don't give a rodent's behind as to whether their disease is active or not. But once again, twist what I say into what YOU believe to be true in order to score points. It's say it's clever, but it's also predictable of you.  

So I posted my comments about being scared under a veil of sarcasm? Wasn't it you that said "You can't expect everyone to fall in line with the small, self-selected group's sanctioned method of coping and demand that all patients be the same"? It's a fair call, but it doesn't seem to apply for everyone, does it?

Just because I don't look at death as an abstract "One day this could kill me", but in a "different (perhaps more imminent) way" doesn't mean I rate validity of someone's fear or pain as being less important. And just because I choose not to post about mine, doesn't mean they don't exist. So don't bother thinking you "know" me in any way, shape or form. Your response to me illustrates how ****ing little you DO know about me.

So carry having fun with your inaccurate assumptions about me- damn, they make for good reading 🙂