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DrBee

Looking for hope and community

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Its hard enough dealing with personally, but trying read each specific individual situation is overwhelming. It was mentioned about a "notebook". In 2016 it didnt take long before the Drs started saying "No, I havent heard/seen that and it is something I NEED!" You have to be orchestrator of barrels of monkeys in a chinese fire drill. When someone drops the ball you had better learn to dribble QUICK!

Now If they aint got it, it is handed to them on the spot. Office Depot sells 3 ring zippered binders,- containing calendar (history) calendar (future). Folder or cover (1) "Urgent Pending," and (2) "Pending". CT & Pet Scan DVDs with the written reports. NEVER LET YOUR ONLY COPY GO! be sure it is returned. Be sure each DVD contains a viewer. A calling card holder. Medical power of attorney*, list of meds. allergies, etc.

Accessories- YES! a composition notebook, Post It Notes, Highlighter (available in colors), extra pens, Flag tabs, clear page protectors, extra file folders, letter and legal enevolpes. As well as copys of reports, 6 Drs=6 copies.

Experience is, that worrying about what is missing will gnaw at you just about as bad as the cancer. Keep your self from going Postal and/or crazy!

You will be amazed if and when you have an unrelated procedure, and the comforting calm you will feel having all of your info at your fingertips.

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13 hours ago, Susan Cornett said:

Bethany,

My journey for staging is a little wonky.  Trip to ER showed mass in my lung.  I had a biopsy via bronchoscopy that was negative for cancer, but pulmonologist said the mass had to be removed.  I had surgery, cancer was found, and I was initially diagnosed as stage III.  Before treatment was started, Super Doc ordered scans to look for other spots.  A spot was found on my thyroid and, after I finished chemo, it was biopsied and then I had a thyroidectomy.  Turns out my lung cancer had metasticized to my thyroid AND I had a separate thyroid cancer nodule.  After all of this, Super Doc revised my initial diagnosis to stage IV.  

It's a lot to take in quickly.  If no one has already told you, don't google the statistics.  They are outdated and do not take your husband's age and overall health into consideration.  They do not reflect new treatments over the last 2-3 years.  My other tip is that you purchase a notebook.  Write down questions and concerns and take the notebook with you to appointments.  For the first year, I pulled out that notebook every time I saw the doc.  Seems like all of my questions came to mind after I had treatment or saw him.

There are so many issues with lung cancer, but the biggest is the late diagnosis for so many of us.  There are a lack of symptoms, or in my case, symptoms which look like something else such as asthma.  Lung cancer bites!

 

Wow, Susan! I can only imagine what that roller coaster must've been like (actually I can imagine it all too well).  Hey, you have cancer. Oh, whoops, you don't. Oh hey, not only do you have cancer but it has spread further than we thought. Blimey. The more I learn about the disease, the more in awe I am of how well-adjusted the stalwarts on this forum are. You guys are freaking super heroes. (Also, I want to import your SuperDoc!)

Thank you for all the excellent advice.  

Of COURSE I googled the stats, freaked myself the F out, then took a deep breath and started disaggregating. (Yay for all those quantitative methods classes I had to get through in grad school.) You are the first one to remind me that they don't take into account all the advances made recently. For some reason this makes me feel loads better. 

I am fortunate (?!) that we just went through breast cancer with my bff. She is a widow so our other bestie and I were her main care coordinators. So, I've got the google calendar and stuff set up, plus the running Questions document, physician profiles, scans, and a bunch of other stuff in a shared google file.  I trust that more than a paper notebook -- I do everything electronically. Excel spreadsheets make me super happy. Ubernerd at your service. 

Man, the late diagnoses are the worst! I just had a pal tell me (un)helpfully about two different folks he knew who went in for other complaints, were diagnosed with LC, and were dead within weeks. Really, he could have kept that stuff to himself right now (especially cos he didn't know anything about the type of LC that they were). :) But I also realise those kinds of diagnoses are all too familiar. 

If you don't mind me asking , what kind of LC do you have, and what treatment regimen are you currently on? 

Thank you for your wisdom and generosity with your experience, Susan. You are amazing! 

With gratitude, 

Bethany

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9 hours ago, Johnny5 said:

Its hard enough dealing with personally, but trying read each specific individual situation is overwhelming. It was mentioned about a "notebook". In 2016 it didnt take long before the Drs started saying "No, I havent heard/seen that and it is something I NEED!" You have to be orchestrator of barrels of monkeys in a chinese fire drill. When someone drops the ball you had better learn to dribble QUICK!

Now If they aint got it, it is handed to them on the spot. Office Depot sells 3 ring zippered binders,- containing calendar (history) calendar (future). Folder or cover (1) "Urgent Pending," and (2) "Pending". CT & Pet Scan DVDs with the written reports. NEVER LET YOUR ONLY COPY GO! be sure it is returned. Be sure each DVD contains a viewer. A calling card holder. Medical power of attorney*, list of meds. allergies, etc.

Accessories- YES! a composition notebook, Post It Notes, Highlighter (available in colors), extra pens, Flag tabs, clear page protectors, extra file folders, letter and legal enevolpes. As well as copys of reports, 6 Drs=6 copies.

Experience is, that worrying about what is missing will gnaw at you just about as bad as the cancer. Keep your self from going Postal and/or crazy!

You will be amazed if and when you have an unrelated procedure, and the comforting calm you will feel having all of your info at your fingertips.

Hi Johnny5! Thank you for reaching out and for your wise words. Definitely agree - I am glad I like researching things, because this is probably the most important project, personally, I've ever taken on. 

I totally agree about the importance of organization! I am fortunate (?!) that we just went through breast cancer with my bff. She is a widow so our other bestie and I were her main care coordinators. So, I've got the google calendar and stuff set up, plus the running Questions document, physician profiles, scans, and a bunch of other stuff in a shared google file.  I trust that more than a paper notebook -- I do everything electronically. Excel spreadsheets make me super happy. Ubernerd at your service. My honey loves hard copy stuff, however, so I've also organized a binder for him with tabs approximating those you mention. (I'm a professor so fortunately had a lot of supplies at the ready.)

Thank you again for the amazing advice, Johnny5!

 

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Bethany, my cancer is stage IV adenocarcinoma - the most common NSCLC.  I finished my second line treatment last summer for a recurrence and am not currently in treatment but that will change in a matter of days.  I have yet another recurrence so here we go for round 3.

I understand your Excel excitement - I work for an actuarial firm (although I'm not an actuary) so even some documents that would make more sense in Word are done in Excel. 

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Bethany

I can so relate to having someone tell you stories about people being diagnosed with lung cancer then being dead just weeks later. Have had that happen also. You stand there in shock (or I did) thinking, "And exactly why was it you thought that would be helpful to me?" They are just clueless. And I'm here to tell you I was diagnosed at stage IV and am still here 1 year and 7 months later. Track record not as good as Tom's, but I'm working on it. 

Judy M. 

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DrBee, my mother being diagnosed with lung cancer since March 2018, we did 4 chemo then did the first Keytrua PD1 treatment last Friday.

We all working on it, be strong, your husband need your support. We are here to support you and each other...

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I'm not sure if I'm navigating this site correctly but I know I'm looking for Hope. I was diagnosed with Adenocarcinoma stage 4 in November 2017 -  lungs, liver, brain an bones. I had whole brain an localize radiation . Late December I started on Tarceva. It's been a physical and emotional roller coaster. I try to keep my mind from going too far forward but it's difficult. My nature is to problem solve. And this one I can't!!

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Yes. I'm a problem solver also. But this disease and some other things happening in my family have shown me all over again how powerless I am. Glad God is in control of this because I'm certainly not. I just keep saying the Serenity prayer and trying to change the things I can. Which are becoming fewer and fewer all the time. 

Judy M. 

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17 hours ago, Susan Cornett said:

Bethany, my cancer is stage IV adenocarcinoma - the most common NSCLC.  I finished my second line treatment last summer for a recurrence and am not currently in treatment but that will change in a matter of days.  I have yet another recurrence so here we go for round 3.

I understand your Excel excitement - I work for an actuarial firm (although I'm not an actuary) so even some documents that would make more sense in Word are done in Excel. 

Susan: I was just reading about your most current battle in the other Forum. Sending you many shrinking vibes, and envisioning soon visiting Florida vicariously through you! :-) it sounds as though you generally respond really well to these treatments so I look forward to following your progress with anticipation of another positive outcome. Is this treatment now considered third line since it's your third round? Is it a different kind of treatment than you've had before? I'll have to go back on the other forum and see if I missed these elements of your journey.

Also, excellent to see so many extremely well organized folks on this site! Clearly I I'm  not the only one for whom research and data are great comforts <3.

Hugs, 

Bethany

 

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16 hours ago, Judy M. said:

Bethany

I can so relate to having someone tell you stories about people being diagnosed with lung cancer then being dead just weeks later. Have had that happen also. You stand there in shock (or I did) thinking, "And exactly why was it you thought that would be helpful to me?" They are just clueless. And I'm here to tell you I was diagnosed at stage IV and am still here 1 year and 7 months later. Track record not as good as Tom's, but I'm working on it. 

Judy M. 

Judy, thank you for making me both smile and laugh. Everyone of you who is still here months and years out from diagnosis is a personal hero of mine, now.

And oh my goodness. People are so well-meaning but so clueless, as you say. I definitely saw this when my best friend was going through breast cancer treatment 2 years ago, but it is definitely hitting me even harder now. The particular friend who did this lives in London and I literally want to start making up stories to tell him about the high number of people getting hit by double decker buses or something :-).

  I look forward to seeing you celebrate matching Tom's record in 13 years or so... Except by then he'll be a 28-year survivor or something :-)

❤️ Bethany 

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10 hours ago, LOVEMAMA said:

DrBee, my mother being diagnosed with lung cancer since March 2018, we did 4 chemo then did the first Keytrua PD1 treatment last Friday.

We all working on it, be strong, your husband need your support. We are here to support you and each other...

Lovemama, I've exhausted my number of likes for the day, but just wanted to thank you from the bottom of my heart for your kind words. Sending much peace and strength to you and your mom. ❤️

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7 hours ago, Christina Martz said:

I'm not sure if I'm navigating this site correctly but I know I'm looking for Hope. I was diagnosed with Adenocarcinoma stage 4 in November 2017 -  lungs, liver, brain an bones. I had whole brain an localize radiation . Late December I started on Tarceva. It's been a physical and emotional roller coaster. I try to keep my mind from going too far forward but it's difficult. My nature is to problem solve. And this one I can't!!

Hi Christina, I think I've  exhausted my allotment of 'likes' for today, but just wanted to say that the one thing I seem to have learned in the short time I've been here is that problem solving is an incredibly important tool and a definite aid on this journey. It seems to me that this is a powerfully supportive community of profound the wise and compassionate people, and I've already found so much hope here, even when I've been at my most panicky.  I feel sure that you will as well... in fact as a 10-month survivor you already have succeeded and are my hero.  Please keep us posted on your journey.

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5 hours ago, Judy M. said:

Yes. I'm a problem solver also. But this disease and some other things happening in my family have shown me all over again how powerless I am. Glad God is in control of this because I'm certainly not. I just keep saying the Serenity prayer and trying to change the things I can. Which are becoming fewer and fewer all the time. 

Judy M. 

 Judy, I've exhausted my allotment of "likes" for the day,  but I just wanted to say that I love that prayer, even though I don't think of myself as very religious. It's an excellent mantra!

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Hi Friends, got a LOT to report today! I need to make DH some dinner as we are both exhausted, but will post full report asap. In the meantime, basically MRI clear, PET clear in terms of spread to other organs, but because of a lymph node that lit up above the collarbone and some others on the pectoral muscle, we're classed as stage IV.  It seems to be a pretty aggressive tumor so chemo starts next week. We are excited to get underway!

In the meantime, I know some of our longterm survivors here were Stage III (like Tom and Donna) when diagnosed. Would love to hear if there are any longterm survivors that were diagnosed at IV, and also if they have ever been declared NED. (I am sure some of you have told me you were diagnosed at this stage and I am just having swiss cheese brain today). Our oncologist, who I really liked, suggested we will basically be in treatment til it stops working, then try something else.  Starting with chemo (carbo and alimta) plus keytruda every three weeks. Apparently DH's PDL1 test (don't even know how that works yet - still researching cos we JUST got home) indicated he had a 99% chance of responding to Keytruda. (On the other hand, apparently Veristrat indicated he had only a 10% chance of responding to the chemos for which it tests sensitivity...but those aren't the ones we're starting anyway, so kinda confused on that.) Don't worry, I'll research all the PDL1 and Veristrat stuff myself; in meantime just trying to refresh my memory on how many Stage IV folks we've got here. I know dear Susan is one. 

I was a bit troubled that he said he didn't see radiation or surgery as potentially "curative" in our situation,  and might be considered for palliative reasons only. I was so surprised because so many folks seem to have had success with cyberknife, traditional radiation, and surgeries here. 

More on the other side of some ravioli. Much love to this whole community. Two diff docs commented today on how thoroughly I'd done my research - and you all know I'm just getting started! 

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Hi DrBee,

I was diagnosed as Stage IV.  I had my lower left lobe removed in Sept 2017, and my upper right lobe removed in Oct 2017 (thoracotomy). I had chemo after that and have CT Scans every three months. My last scan (6/2018) was NED...

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15 minutes ago, Roz said:

Hi DrBee,

I was diagnosed as Stage IV.  I had my lower left lobe removed in Sept 2017, and my upper right lobe removed in Oct 2017 (thoracotomy). I had chemo after that and have CT Scans every three months. My last scan (6/2018) was NED...

YESSS ROZ!!!!! GO GO GO!!!!!

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