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Lung mets for $2000, Alex...

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Heard from my doc yesterday, and we finally know what my lung nodules are: metastasized RCC. Needless to say, emotions are running the gamut this morning, but I still have work that I have to get done today, which is not going to be easy. I see the oncologist tomorrow, and we'll review the treatment options, which she says there may be a few. Still processing all this. Not the news I was hoping for, but not unexpected either. I'm guessing there will be some medication side effects in my future, and that's OK, because that means I'm still here. What a crazy ride this is turning into...

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I'm so sorry for all you're going through.

You're in my thoughts and prayers

Foroygh

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I am so very sorry. I hope the treatment option selected will have minimum if any side effects. Keeping you in my thoughts.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

This is just so surreal right now. I'm sitting here at my desk, in my home office, trying to work. However, my mind is going a mile a minute about 'other things.' Really trying to get it back on track today. What a total head trip!

Cybball
Posts: 111
Joined: Nov 2017

Sorry for your news.  Very hard to focus when this is happening.  Stay strong and keep positive!!

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

You are facing this

but at least now you can start the attack

pray   You get lots of reassurance tomorrow

Will be thinking of you

Annie

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

...and maintain a sense of humor that helps me deal with stuff like this - "I'm Not Dead Yet" is the name of the Facebook group I set up for my friends who want to follow along. However, today I found myself sitting at my computer and uncharacteristically bawling my eyes out uncontrollably. The feeling is passing, as these feelings always do. I guess I'm a little raw right now. All part of the process, I suppose. I live with a wonderful woman who has been, and continues to be very supportive. What she's not, by nature, is overly demonstrative in how she shows it. And I hate asking for a hug and such. But you don't get what you want if you don't ask, I suppose. I'm grateful she's sticking by my side through all of this. If not getting hugs when I feel I need them is the biggest issue I end up facing in dealing with this, I'll take it all day.

stub1969's picture
stub1969
Posts: 914
Joined: Jul 2016

I'm sorry about this news.  Know that many of us here have our arms wrapped around you giving you that hug.  We feel your pain and will walk with you as much as you want our support.  Good luck tomorrow with your appointment.

Blessings

Stub

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

the hugs will come.  She is obviously processing this  as well

and I am sending you a million Billion  irish hugs from across the pond

Annie

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Sending you positive energy and nothing but love your way. Praying your new plan of attack will come with minimal side effects and the power to keep things at bay. 

Cin

 

MelBlessed's picture
MelBlessed
Posts: 71
Joined: Aug 2017

prayers and positive thoughts your way.

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

but do you have to many mets to have more wedge resections and get them out? Ive had multiple wedge resections and a lobe removed and have had good results so far anyways. Good luck.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

That's definitely one of the questions I have for the oncologist tomorrow. I do seem to remember them saying that the nodules on my left lung would be hard to get to surgically. They did wedge out two on my right side for the biopsy. But the left lung nodules were better positioned for the needle and bronchoscopic biopsies, neither of which was conclusive, hence the wedge biopsy. I have a feeling she's going to recommend some kind of oral med, like a sutent or votrient. I'll definitely ask about surgery. As much as lung surgery sucked, if that can get me clear, I will explore the possibility. Thanks for the suggestion.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

...for the kind words, support, and virtual hugs. I'm really glad I found this group and all of you!

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

I'm sorry to hear your bad news. I hope they can eradicate it with surgery.

If you ask really, really nicely I'll hug you...

What is that artwork you have as your pic?

Steve.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Thanks, Steve. The art is actually a tie died shirt I bought years ago. It's  seen me through many concerts, some Dead-related, some not,  and lasted a long time. 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

That's what I thought at my diagnosis... The Dead played in endless loop for awhile after leaving the Dr office and calmed me down. You alluded to knowing the answer before confirmation and probably started planning the next steps in your journey. Your not alone here and can have as many virtual hugs as mentioned above! Positive thoughts your way and good luck tomorrow.

 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Yeah, that's what I have them play when I'm having my MRIs. Definitely a calming influence. Hoping to get Dead & Co tickets for Boulder in July. I'm way overdue to see the boys. 

Mighty Frog's picture
Mighty Frog
Posts: 152
Joined: Jul 2017

It is very hard to accept this news..... very sorry to hear this. We all here for you! 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Accepting it wasn't that hard, really. Maybe it's because I was mentally prepared for the dx, even though hoping for something different. The hard part is staying focused on other things, like the job that pays my bills and gives me that great insurance to help me through this stuff. That continues to be my big challenge. Maybe this whole thing is helping make me ready for a change, I don't know. I do know I don't want to be unemployed or changing jobs while starting a new treatment. Anyway, back to working on focusing. Thanks for the good wishes.

Canadian Sandy's picture
Canadian Sandy
Posts: 713
Joined: Jul 2016

Sorry.....prayers being sent your way.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

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

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Best words I've read today! I think it may be my slogan of the day. 

Allochka's picture
Allochka
Posts: 958
Joined: Nov 2014

Unpleasant news, sorry to hear. You have all reasons to feel down and wanting a hug. But as you can see, there are people here with mets living full lives. YOU ARE NOT DEAD YET!

 

Hugs,

Alla

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

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. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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!

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

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..

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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.

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Must be spinning. Bless you

I would love to share your pain

stay strong

stay hopeful

stay well

 

much love 

Annie

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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.

 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

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!!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Hope Votrient will do the job and will be kind on you at the same time. Everyone's side effects are different so hoping for easy ones for you. All the best!

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

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.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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? 

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

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.

 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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!

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

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.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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.

jazzgirl's picture
jazzgirl
Posts: 203
Joined: Nov 2017

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.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

...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!

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

"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."

Both my primary oncologist and radation oncologist have assured me that there's lots of progress in the kidney cancer arena. The radiation oncologist even said he'd "bet his house" that there'll be another new treatment available when whatever I'm on stops working.  This was not the case several years ago.

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

I cannot begin to imagine the thoughts and feelings going through your mind right now. I pray for a good outcome with the meds, and little to no side effects. This group is great - we’ve all got different experiences along our journey and can learn so much from each other (or support someone). 

A member here recommended www.smartpatients.com to me. I recommend them to you if you are not already familiar with them. It’s a different type of support environment, but wonderful information from people who understand what you’re going through. Lots of discussion about meds too. 

Good luck! I look forward to reading your follow up success posts. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Thanks. My oncologist also recommened I check out that site, and I've seen it referenced here before. I appreciate your reminder, and I've just signed up to be on that site.

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