Lung mets for $2000, Alex...
Comments
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Ok, buddy, this is yet
Ok, buddy, this is yet another battle to be fought! BUT you won't be alone. The best thing you did for yourself yesterday, was come on this site and share with us, the folks who CARE about YOU!!
So keep us posted. It is not like it used to be, as you will learn about the latest treatments.
Still.. I feel for all you are going through so...
Sending you HEALING hugs, CALM and true Serenity.
Life changing, yes, but good things can happen out of such crap!
Jan
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"...good things can happen out of such crap!"Jan4you said:Ok, buddy, this is yet
Ok, buddy, this is yet another battle to be fought! BUT you won't be alone. The best thing you did for yourself yesterday, was come on this site and share with us, the folks who CARE about YOU!!
So keep us posted. It is not like it used to be, as you will learn about the latest treatments.
Still.. I feel for all you are going through so...
Sending you HEALING hugs, CALM and true Serenity.
Life changing, yes, but good things can happen out of such crap!
Jan
Best words I've read today! I think it may be my slogan of the day.
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Mind Games
I am sitting here and I am imagining you at your desk, and my chest feels tight and I can feel that anxiety and distraction. It's palpable.
Here is what I do. I don't have lots of meditation or mindful thinking experience, but was taught this in a time management class back in the 80's and it seems to work for me. it's a simplistic way of using breathing and stopping your thought process. I am told that a lot of the feeling of anxiety that is physical is due to taking shallow breaths. I have ended up in ambulance many years ago with an anxiety attack, the whole 'impending sense of doom thing' it was over really minor stuff, but really hot weather, a return to work after summer holidays (3 babies at home) and I just started shallow breathing.
It's basically unthinking about it for a scheduled period of time. My logic is I won't feel bad if I don't need to right now. i am a bit stubborn on that. I don't want a thing that is only a thought to make me suffer and take priority over important things that need doing that will make life easier (that job/money/food thing). Stop the infernal loop of worry, don't breath, worry, then don't breath, then catastrophise.
Just sit comfortably, try to clear your mind a little, breathe in for 6, hold for 5, out for 4. Or whatever is comfortable. Focus on the breath, do it for a a few minutes if you can. Work to maintain a neutral or blank image in your mind. Imagine yourself setting all your worries aside that you can do nothing about. I always imagine a list of things to work on later, the what if's, the what I don't knows, the when and wheres that are out of my control. I might even write them down in a list. I imagine them in a filing drawer, it is filled with a file of things I need to do later, that I have no ability or resource or knowledge to do anything about. I even put little bitty inconsequential things in there that I don't need to feel stressed about right now, things that if they don't get done this minute (because I have some major crap going down) will make little to no difference, the B and C items. Washing the car, maybe it is a social engagement I need to reschedule I don't feel up to but am feeling guilty about cancelling, all those little worries add up.
Then there is the big stuff. I imagine setting a follow up date and I imagine a time and place when I will next sit down and try and work on the problem. Like when I get some information from the Doctor and actually know something for sure. Or when it will be a good time to sit down with family to talk about it. It isn't perfect but it does go some way to helping me use my mind to get on with what I need to get on with, and not falling in a heap of shallow breathing and anxiety. If I find mysel starting to worry again, i just imagine that date and plan i set up, like I say to myself, 'Monday 2pm i am dealing with that'. I briefly remind myself that i have scheduled a time to deal with it and that I have it in hand. I am in control. I don't have to go back to the whole exercise. I remember instantly that I have it scheduled. Then I consciously bring myself back to what is in the A list, that I can do something about and do now. I think of it as not trying to solve a puzzle before I have all the clues and pieces, it will only be an exercise in frustration. I am putting it aside to work on later. Job done.
For the stuff I am actually working on in the A list, I try to give myself the gift of knocking off some of the low hanging fruit, the things I know how to do, can do quickly and completely (but maybe I don't like doing them... ) I set a time limit and imagine I am in a Nike add and 'just do it'. That way I can feel a sense of accomplishment even though it is small. I give myself a little mental high five. Then I work on a biggie. I used to be an IT project manager so I am kind of task orientated.
My Grandma was famous for saying 'worry is like a rocking chair, keeps you busy but takes you nowhere'. i have written that before on this board. It is trite but oh so true. Sometimes I do let myself hand wring, and have a little pity party, but it doesn't make me feel good, and I don't like tha, t so I obstinately refuse to do it very much. I am not advocating being in denial or not thinking about it all. Just trying to prioritise all the worrying to when it will be most effective. I do like efficiency.
Hope you get some relief and I too send lots of virtual hugs and empathy and a good dose of indignation that a big crappy something has happened to you.
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Great Suggestions, Kiwi, thank you!kiwi68 said:Mind Games
I am sitting here and I am imagining you at your desk, and my chest feels tight and I can feel that anxiety and distraction. It's palpable.
Here is what I do. I don't have lots of meditation or mindful thinking experience, but was taught this in a time management class back in the 80's and it seems to work for me. it's a simplistic way of using breathing and stopping your thought process. I am told that a lot of the feeling of anxiety that is physical is due to taking shallow breaths. I have ended up in ambulance many years ago with an anxiety attack, the whole 'impending sense of doom thing' it was over really minor stuff, but really hot weather, a return to work after summer holidays (3 babies at home) and I just started shallow breathing.
It's basically unthinking about it for a scheduled period of time. My logic is I won't feel bad if I don't need to right now. i am a bit stubborn on that. I don't want a thing that is only a thought to make me suffer and take priority over important things that need doing that will make life easier (that job/money/food thing). Stop the infernal loop of worry, don't breath, worry, then don't breath, then catastrophise.
Just sit comfortably, try to clear your mind a little, breathe in for 6, hold for 5, out for 4. Or whatever is comfortable. Focus on the breath, do it for a a few minutes if you can. Work to maintain a neutral or blank image in your mind. Imagine yourself setting all your worries aside that you can do nothing about. I always imagine a list of things to work on later, the what if's, the what I don't knows, the when and wheres that are out of my control. I might even write them down in a list. I imagine them in a filing drawer, it is filled with a file of things I need to do later, that I have no ability or resource or knowledge to do anything about. I even put little bitty inconsequential things in there that I don't need to feel stressed about right now, things that if they don't get done this minute (because I have some major crap going down) will make little to no difference, the B and C items. Washing the car, maybe it is a social engagement I need to reschedule I don't feel up to but am feeling guilty about cancelling, all those little worries add up.
Then there is the big stuff. I imagine setting a follow up date and I imagine a time and place when I will next sit down and try and work on the problem. Like when I get some information from the Doctor and actually know something for sure. Or when it will be a good time to sit down with family to talk about it. It isn't perfect but it does go some way to helping me use my mind to get on with what I need to get on with, and not falling in a heap of shallow breathing and anxiety. If I find mysel starting to worry again, i just imagine that date and plan i set up, like I say to myself, 'Monday 2pm i am dealing with that'. I briefly remind myself that i have scheduled a time to deal with it and that I have it in hand. I am in control. I don't have to go back to the whole exercise. I remember instantly that I have it scheduled. Then I consciously bring myself back to what is in the A list, that I can do something about and do now. I think of it as not trying to solve a puzzle before I have all the clues and pieces, it will only be an exercise in frustration. I am putting it aside to work on later. Job done.
For the stuff I am actually working on in the A list, I try to give myself the gift of knocking off some of the low hanging fruit, the things I know how to do, can do quickly and completely (but maybe I don't like doing them... ) I set a time limit and imagine I am in a Nike add and 'just do it'. That way I can feel a sense of accomplishment even though it is small. I give myself a little mental high five. Then I work on a biggie. I used to be an IT project manager so I am kind of task orientated.
My Grandma was famous for saying 'worry is like a rocking chair, keeps you busy but takes you nowhere'. i have written that before on this board. It is trite but oh so true. Sometimes I do let myself hand wring, and have a little pity party, but it doesn't make me feel good, and I don't like tha, t so I obstinately refuse to do it very much. I am not advocating being in denial or not thinking about it all. Just trying to prioritise all the worrying to when it will be most effective. I do like efficiency.
Hope you get some relief and I too send lots of virtual hugs and empathy and a good dose of indignation that a big crappy something has happened to you.
It's funny, I used to be a stage hypnotist. I know this stuff. But when it comes to me, it's like I forget everything. Those are some great reminders, and I'll work to incoroporate what I can. I appreciate the suport!
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And it's Votrient for the win
Looks like I'll be starting Votrient next month. They said it takes a couple weeks before it will finally get to me, and I'm traveling for work next month. So I plan to start as soon as I return from my business trip, which will be about a month from now. The doctor said that with the size and growth rate, the extra week or two shouldn't do any harm.
There's so much to take in. Going through all the options and their respective side effects. There was a clinical trial available, but I think it would take too much out of me, and I can't afford the lost work time. Plus, the side effect array was quite 'impressive,' so to speak. As much as I'm not looking forward to the side effects of Votrient, I'm grateful it's not as bad as chemo, and that I have a chance to actually live for more than a few years if this stuff works. So much to process, and so much possibility ahead.
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Your head
Must be spinning. Bless you
I would love to share your pain
stay strong
stay hopeful
stay well
much love
Annie
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Well teaching you to suck eggs!ImNotDeadYet said:Great Suggestions, Kiwi, thank you!
It's funny, I used to be a stage hypnotist. I know this stuff. But when it comes to me, it's like I forget everything. Those are some great reminders, and I'll work to incoroporate what I can. I appreciate the suport!
We had a famiy business - wedding receptions - back in the 60's and 70's when I was a kid we had a hypnotist - tall - dark hair - constant cigarette in his mouth with a long ash. His name was Alan. He would hynotise the guests occassionally but usually was an MC (his day job was a cliical hypnotist). Lots of the waitresses wouldn't look him in the eye, they were terrified he would make then start clucking like a chicken. Ha. He was old school terrible jokes, I remember he would always ask the bride whie she was there in her white dress 'what do virgins eat for breakfast'... and she would stand there giggling and blushin and saying 'I don't know'. Cringe..
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It was a side gig for mekiwi68 said:Well teaching you to suck eggs!
We had a famiy business - wedding receptions - back in the 60's and 70's when I was a kid we had a hypnotist - tall - dark hair - constant cigarette in his mouth with a long ash. His name was Alan. He would hynotise the guests occassionally but usually was an MC (his day job was a cliical hypnotist). Lots of the waitresses wouldn't look him in the eye, they were terrified he would make then start clucking like a chicken. Ha. He was old school terrible jokes, I remember he would always ask the bride whie she was there in her white dress 'what do virgins eat for breakfast'... and she would stand there giggling and blushin and saying 'I don't know'. Cringe..
I primarily did it back in college in the mid to late 80s. It was part of how I worked my way through cramming four years of study into six and a half. I have one friend who I've hypnotized a few times, and she's an easy subject, who won't look me straight in the eyes, even today, 30 years later. It was definitely fun for a while. I think my favorite bits from my old act included giving them onions and telling them that they had apples, and laying someone between two chairs, supported only by their neck and ankles. Fun times indeed.
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Yup, definitely spinning a bitWehavenotimeatall said:Your head
Must be spinning. Bless you
I would love to share your pain
stay strong
stay hopeful
stay well
much love
Annie
It's really hard to quantify what I'm feeling right now. I'm elated that there are meds that can prolong my life with good quality, and hopefully, tolerable side effects. On the other hand, the notion of my mortality is really kicking in. I don't think it did so much when I had my kidney removed a year ago. I think I still lived like I did as a young man - oblivious to the fact that I'm not immortal. I wasn't doing crazy things; I just didn't have that deep, life-perspective-changing experience. I think now at almost 53 years old, knowing that if the meds don't work I won't live to see retirement, it's becoming more real, and it's making me think more, and more deeply, about things.
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Hi. I am so very sorry to
Hi. I am so very sorry to hear about your situation. Glad you are fighting the negative thoughts. I hope you don't give up even before you get started. You can do this. Even if it is one second at a time. Here's hoping the med works wonders for you my friend!!
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Hope Votient works for you
I had a good, three year run on Votrient. Others on this forum have/had success with it as well. You'll be in good company.
Best regards.
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Thanks! Definitely encouragingrhominator said:Hope Votient works for you
I had a good, three year run on Votrient. Others on this forum have/had success with it as well. You'll be in good company.
Best regards.
I appreciate your sharing that. What happened after it stopped working? Did you find another med that works? Did the cancer recur, or were you able to keep it at bay some other way?
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Switched from Votrient to OpdivoImNotDeadYet said:Thanks! Definitely encouraging
I appreciate your sharing that. What happened after it stopped working? Did you find another med that works? Did the cancer recur, or were you able to keep it at bay some other way?
My profile/bio has the high level details. In summary, while on Votrient and after being NED for awhile, I developed a number of mets in soft-tissues. We concluded that Votrient wasn't working for me anymore.
Since then, I've been on Opdivo. On this treatment plan the soft-tissue mets have decreased, but some new bone mets on my spine popped up. Those have been treated with radiation.
I get scanned again next week. No worries here.
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You've had quite the experience!rhominator said:Switched from Votrient to Opdivo
My profile/bio has the high level details. In summary, while on Votrient and after being NED for awhile, I developed a number of mets in soft-tissues. We concluded that Votrient wasn't working for me anymore.
Since then, I've been on Opdivo. On this treatment plan the soft-tissue mets have decreased, but some new bone mets on my spine popped up. Those have been treated with radiation.
I get scanned again next week. No worries here.
I just looked at your profile; thanks for the information. From reading, it looks like the Opdivo is working with regard to the lung mets. And you seem confident that the radiation will continue to help with the bone mets. That's definitely encouraging.
I think it's really starting to all hit me now. For some reason, it didn't hit me as much when I had my first dx and kidney removed one year ago (tomorrow). Perhaps it all happened so fast, I didn't have time to really process. I had my surgery, went through recovery, and then it was back to my old routine. This time it feels different. Maybe it was actually discussing real prognosis possibilities that was the tipping point; I don't know. But I do know that reading stories like yours gives me hope that I just might be around long enough that I don't need to cash in my retirement just yet.
I hope your scans next week are excellent!
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Been where you are (maybe)ImNotDeadYet said:You've had quite the experience!
I just looked at your profile; thanks for the information. From reading, it looks like the Opdivo is working with regard to the lung mets. And you seem confident that the radiation will continue to help with the bone mets. That's definitely encouraging.
I think it's really starting to all hit me now. For some reason, it didn't hit me as much when I had my first dx and kidney removed one year ago (tomorrow). Perhaps it all happened so fast, I didn't have time to really process. I had my surgery, went through recovery, and then it was back to my old routine. This time it feels different. Maybe it was actually discussing real prognosis possibilities that was the tipping point; I don't know. But I do know that reading stories like yours gives me hope that I just might be around long enough that I don't need to cash in my retirement just yet.
I hope your scans next week are excellent!
I was semi-retired when this all happened. We got my affairs in order shortly after the stage IV diagnosis. Then we settled into the new routine. And then, a couple of years later, NASA offered me a job! Now I'm working and traveling. I often forget I have cancer (if that's possible). All by God's good grace.
I think I've been where you are right now. 'Had similar thoughts at that time.
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More hugs -
The difficulty focusing and the "bawling my eyes out uncontrollably" are both so familiar. Thanks to Kiwi for the reminder about breathing.
Deadhead, ask that wonderful woman for that hug. Often. Besides not being demonstrative, she just may not know what you need and how to provide it. She may be glad to find there's something so simple she can do that can provide you such comfort. Ask her.
This is such a rich statement of yours: "So much to process, and so much possibility ahead." You may have meant it in a different way than I am reading it, but I find it comforting somehow.
"Good things can happen out of such crap" - I think we all need that posted in our home - needlepoint, calligraphied, painted, tie-died, whatever.
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It was a "years" thingrhominator said:Been where you are (maybe)
I was semi-retired when this all happened. We got my affairs in order shortly after the stage IV diagnosis. Then we settled into the new routine. And then, a couple of years later, NASA offered me a job! Now I'm working and traveling. I often forget I have cancer (if that's possible). All by God's good grace.
I think I've been where you are right now. 'Had similar thoughts at that time.
I thiink what really hit me was when we talked prognosis. She said "Years, not months," which is great. Upon further discussion, I asked what "years" means; is it two, five, 10?" She said probably not 10, at least based on where we are today. *Whomp* However, she did say that could change as new things come out. That's why posts and comments like yours, Fox's, and anyone's who's been living with this a while are so important. It really does give hope that things can be better than they might appear originally.
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I do ask indeed...jazzgirl said:More hugs -
The difficulty focusing and the "bawling my eyes out uncontrollably" are both so familiar. Thanks to Kiwi for the reminder about breathing.
Deadhead, ask that wonderful woman for that hug. Often. Besides not being demonstrative, she just may not know what you need and how to provide it. She may be glad to find there's something so simple she can do that can provide you such comfort. Ask her.
This is such a rich statement of yours: "So much to process, and so much possibility ahead." You may have meant it in a different way than I am reading it, but I find it comforting somehow.
"Good things can happen out of such crap" - I think we all need that posted in our home - needlepoint, calligraphied, painted, tie-died, whatever.
...too important to just let it go and simmer. It's like sales: you don't get the order if you don't ask.
And yes, I did mean that statemnt optimistically, at least for the most part. In general, I'm quite positive about this. I do have my moments of down, like when I was first processing this dx. And I'm sure there will be more. But, I think I'm keeping it more positive than negative overall.
Thanks for the great reminders!
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