New New Plan - 1245433

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double trouble
New New Plan - 1245433

Hi friends. Just a quick update. I had a platelet infusion and an EBUS yesterday. I'm hoping the report will be in when I return to the surgeon on Friday. I'll post details when I know more. (So glad I didn't just jump up into the barber's chair for that haircut.)

Much love to all,
Debra

catdander
Reply To: New New Plan

Me too.
:-|

gn21
Reply To: New New Plan

Hang in there Debra and keep us posted

Gail

certain spring
Reply To: New New Plan

Goodness Debra, I am slow to catch up and had not realised all these surgical possibilities were in play. Hope your appointment tomorrow goes well.

double trouble
Reply To: New New Plan

The EBUS was diagnostic. If the pretracheal node that was positive prior to chemorad is positive now, surgery is off the table. If that's the case, I'm hoping they got enough tissue for mutation analysis, since my Kras positive status is based upon tissue from the left lung. I know it's a long shot, but the process on the right side could possibly be different. They sampled a couple of other nodes as well. Gail, I love that you're still planning holidays.

Much love to all,
Debra

laya d.
Reply To: New New Plan

Good luck, my dear. . .I anxiously am awaiting a further update!

xoxo,
Laya

Jazz
Reply To: New New Plan

Funny, the remark about the haircut. Will have to remember that one! Best of luck on the mutation testing. I vote we all plan more holidays!

Jazz

fortmyr
Reply To: New New Plan

Good luck Debra.

Myriam xxx

Dr West
Reply To: New New Plan

Good luck with that. We'll be looking for answers soon. One trend I'm seeing is some real momentum on KRAS-positive NSCLC (partly from the MEK inhibitor selumetinib, but from other angles too).

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

mikem
Reply To: New New Plan

Keeping my thoughts with you Debra. Take Care, mikem

double trouble
Reply To: New New Plan

I just got confirmation that my case has been evaluated by Dr. Thomas D'Amico at Duke University. I don't know what the recommendation is yet. This has all been handled by the local lung cancer advocate I mentioned earlier, who boxed up and sent all of my records and scan disk to Duke last week.

I'm hoping I hear from them before my follow up with the local surgeon on Friday, after a full round of Pulmonary Function Testing. My pathology came back on the EBUS: Hilar node positive (heterogenous), Pretracheal node negative (homogenous), and Subcarinal non-diagnostic (heterogenous) not enough tissue.
My oncologist didn't know how much the pretracheal node might affect the decision about my candidacy for surgery, and suggested they might want to try again for more tissue.

Question for the doctors:
Does the fact that the Pretracheal node is heterogenous mean that it is likely also positive for malignancy?

Debra

Dr West
Reply To: New New Plan

It's suggestive but anything but conclusive in that regard.

Dr. D'Amico is very, very good, so I'm confident you'll get a good, thoughtful perspective.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

double trouble
Reply To: New New Plan

I actually meant subcarinal node. And I read about a procedure that could be done by Interventional Radiology that can be used to sample that node. (CT guided extrapleural biopsy). Would that procedure possibly yield more subcarinal tissue than EBUS? Is there increased risk of bleeding with that procedure?

Thank you Dr. West for all of your comments thus far. I'm very excited that Dr. D'Amico is involved. I'm very lucky indeed.

With much love and admiration,
Debra

Dr West
Reply To: New New Plan

I don't think that the IR procedure would yield more tissue than an EBUS. Re: bleeding risk, that's a little beyond my realm. I think you'd need to ask the docs involved what they think. Probably not a significant difference.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: New New Plan

HI Debra:

Thank you for the update. . .and please know that I think about you EVERYDAY. . .

Looking forward to your further updates (xoxo),
Laya

dr. weiss
Reply To: New New Plan

Like Dr. West, I'll defer to interventionalists on optimal biopsy strategy.

I agree that selumitinib has promise for kRAS mutated NSCLC. Selumitinib is a MEK inhibitor. I also think that there is promise for HSP90 inhibition for kRAS mutated NSCLC. Dr. West recently wrote a great post that commented on both of these: http://cancergrace.org/lung/tag/hsp90/

double trouble
Reply To: New New Plan

Hi doctors, and thank you both for your responses.

You both mentioned Selumitinib (MEK inhibitor) and Dr. Weiss also mentioned Heat Shock Protien 90 as promising therapies for kRAS mutant patients.

As I understand it, neither of these have reached the point of being available in Phase III Trials yet, correct?

Debra

Dr West
Reply To: New New Plan

I think that's true. They're both in phase II trials, and I believe phase III trials are in development for patients with lung cancer, though I don't know of any actual phase III trials with them that are running now.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

double trouble
Reply To: New New Plan

I saw my oncologist today, at my request. We had the longest, most productive talk that we've had to date. He really understands my reluctance to agree to surgery, and said that some patients would be willing to risk everything for the hope of a cure, but that if it were him, he might react similarly. He said that they are willing to offer the option of surgery, but that they are "not enthusiastic" about that choice. So many things could go wrong.

The surgeon said this...
"The multimodality's conclusion was that surgery may possibly be extensive--the worse scenario is a right pneumonectomy with a possible small amount of gain."

The oncologist agreed that another brain scan would not be out of order, so we are scheduled for that next week, and he knew who Dr. D' Amico is, and really welcomes his input (my trip and appointment are at the end of the month).

He is not worried about the delay, in fact said it was an opportunity for the cancer to "declare itself" in terms of progression, so maybe the delay is a good thing. We will repeat PET/CT after my second opinion appointment and then I will need to make my final decision. He speculated at around 18 months to 2 years without surgery and assured me there are many options to explore. He also confirmed that I have a good understanding of what is going on and that no, I'm not exaggerating the situation in my head. And he gave me a great big hug... a first. It was nice.

I keep thinking about Stephanie (ts) and how she wrestled with the decision to stop treatment. Absolutely numbing.

Thanks and much love to all of you,
Debra

fortmyr
Reply To: New New Plan

Dear Debra, those are tough choices indeed. You're so courageous and positive, your attitude is really inspiring.

Much love,

Myriam

Dr West
Reply To: New New Plan

Your angst about the situation just shows you have a good understanding. I think you understand the principle of the cancer "declaring itself", but in case you or others reading don't, here's a post about this core principle in cancer management:

http://cancergrace.org/cancer-101/2012/03/17/the-principle-of-letting-th...

I know you and others around you are making thoughtful decisions. Whatever you decide will be a very good, well-informed choice.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: New New Plan

I am holding your hand all the way, Miss Debra.

xoxo,
Laya

catdander
Reply To: New New Plan

I'm there in spirit. You'll make the right decision.
Janine

double trouble
Reply To: New New Plan

Myriam, thank you, though I don't feel very courageous at all. :(

Dr. West, I thank you and this site for my understanding. Without GRACE I would be so confused. Thank you for putting up with me. I'm comfortable with the waiting. I presented with bilateral multifocal disease, technically could have been called a Stage IV, but was given the benefit of the doubt. As you predicted, this has been an indolent process, so I feel that I'm already defying statistics at 2 years.

You also warned me about the concept of playing "Whack-a-Mole" and that explanation is why I am so insistent now that we use every available resource to try and confirm (to the best of our current ability) whether this process is truly confined to the one hilar node. I understand the very real possibility, even probability, of this popping up somewhere else after surgery, which is what makes the decision so hard.

“These are the moles that make molehills, and in the game, they pop up quickly from holes as a challenge of someone's reflexes to hit them quickly, before they pop back down. No actual moles are harmed in the game...

Interestingly, the entry notes that we aren't the first people to describe the challenge of staying ahead of a rapidly evolving problem as playing a game of whack-a-mole:

"The connotation of "Whac-a-mole" or "Whack-a-mole" in colloquial usage is that of a repetitious and futile task: each time the attacker is "whacked" or kicked off a service, he only pops up again from another direction."

-Dr. West”

http://cancergrace.org/lung/2009/02/13/molecular-heterogen-pennell/

Thanks Laya and Janine for always being there. All of my GRACE family is so appreciated, and your positive energy is palpable.
Much love,
Debra

Jazz
Reply To: New New Plan

Debra,
You are courageous no matter what decision you make! Both are fraught with the sort of unthinkable consequences that advanced cancer brings. However, 18 months to 2 years leaves you a good amount of wiggle room should you decide to wait. And not being stage IV maybe confers a bit of psychological reassurance, in spite of the restrictions you have as regards treatment. You're approaching this decision in the best possible way and setting a great example for everyone in this position. So thank you for sharing your thought process with us, as our hero Stephanie also did.

Hugs,

Jazz

certain spring
Reply To: New New Plan

I am late to this but wanted to add my support. Absorbing this kind of information is hard enough, let alone thinking rationally about it.
I am impressed that your doctors are being so honest and direct. That speaks of their respect for your intelligence and your character. Quite right too :)

catdander
Reply To: New New Plan

Debra, I saw your updated sig and wanted to wish you strength for tomorrow. I'll be there in spirit head to shoulder.
I expect an all clear on abnormalities, xoxo
Janine

double trouble
Reply To: New New Plan

Thank you Janine. I will get the results late Friday afternoon, and will post as soon as I get home. I'm totally asymptomatic, just covering every base as I weigh the risk/benefit of surgery.

I had to reschedule it to a later time so that I could get the "big" machine (the donut). I get too claustrophobic in the tube. The one time they scheduled me for the tube they had to stop the test, let me out, call for approval to medicate me, sit me in a corner to wait for the medication to take effect, then re-start the scan. I knew I would have a hard time but was surprised at how shaken up I got (literally shaking). Funny, things like elevators don't bother me, but that tube made me freak out! :-P

Thank you so much for noticing the date and sending your support. It means the world to me. My GRACE family is the best.
Debra

blue skies
Reply To: New New Plan

I am so glad t have dropped back in to GRACE and found Debra's update.

Debra, I feel like we are on similar paths and I understand the emotions that pervade just about every minute. When I last tuned in, there was a discussion thread about whether people like us describe themselves as living with cancer or battling cancer, or other variations on that theme. It made me realize that I feel and act both ways. Mostly, I live successfully with cancer. But, from time to time, I am BATTLING my cancer...and I am in that mode again right now.

You may recall that I had successful chemo/radiation that appeared to eliminate the primary tumor and only really active cancer. But a second follow up scan to confirm that showed that my cancer had decided to "declare itself." I now have several small mets in my pelvis, one in my cervical spine and one 1.7 cm met in my adrenal gland. When I expressed concern about treating the spinal mets so I could avoid waiting until I was trying to palliate excruciating pain, my doc ordered an MRI of the cervical met that caught 2 tiny mets on my brain. And another scan identified a third one higher up. As all of you know, this was devastating news for me.

My wonderful radiation oncologist said (kind of like the cancer "declaring itself" metaphor), think of these mets as the canaries that enabled us to catch this and take care of it early. My oncologist and Kaiser said the standard of care for patients with metastatic disease was whole brain radiation. But, having been an active reader of this website, I knew that cyberknife was also an option -- and the preferred approach of my outstanding radiological team.

I feel great. Taking Tarceva and working with NIH to get comprehensive molecular profile testing completed (at least I have an adrenal met to biopsy), and identify clinical trials. There is one at NIH and Dr Spigel has identified a promising trial at his center that I hope to join.

Fingers are crossed for you, Debra!

ssflxl
Reply To: New New Plan

dear Blue Skies

Where do you live? Are you a Kaiser member? If so, how did you get the molecular profile testing at NIH paid for by Kaiser??? Did they let you participate in Clinical trials out of state? I belong to Kaiser and I am starting to look into these things so I can be better prepared.

thanks

ssflxl

Jazz
Reply To: New New Plan

Debra-
Since I'm pretty mch continuously rallying the universe and god on the behalf of our entire GRACE family, please know I'm pulling for you tomorrow. Good luck good luck good luck, and hugs.

Blue skies,
I'm overwhelmed by what you just posted...

Jazz

Dr West
Reply To: New New Plan

Good luck, Debra.

And yes, Blue Skies, I'm very sorry to hear about your progression. I'm at least consoled by the knowledge that you have a plan and some great people, including the very excellent Dr. Spigel, in your corner.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: New New Plan

Fingers are crossed for both of you, Debra and blue skies. . .

Laya

double trouble
Reply To: New New Plan

Brain scan was clear. That's good to know.

Blueskies, I can't believe so many mets showed up all at once like that! I don't know what to say, You must have been so shocked. But you sound like you've bounced right back as usual and are coming up with a plan. I don't think we are alike at all. I've had a cakewalk compared to so many Gracers! My worst struggle has been the emotional toll. Just when you think you have a handle on things, POW! Here comes another surprise. You're all heroes in my eyes, and I couldn't have stumbled upon a better community. I love you all.
Debra

fortmyr
Reply To: New New Plan

Debra,

Hurrah for the clear brain scan!

Myriam xxx

laya d.
Reply To: New New Plan

YAHHHHOOOOOOOOO DEBRA!!!!! Thank you for the great news!

Laya

Jazz
Reply To: New New Plan

Woot! Woot!! How do you spell relief?

Jazz

blue skies
Reply To: New New Plan

Don't be fooled by the "battle" mode, Debra! You just don't see the deep dive of emotional despondence that preceeds it. I always feel better after I mourn the disappointment and move on. And, of course, there's the decadron which gives me great energy!

I was also feeling pretty low with so many of us on this site hitting such rough patches in the last month or two and so I am very happy to now return to my newly organized closet and take out my ...

Happy dance shoes!

I think that I will wear them ALL DAY LONG tomorrow in celebration of your excellent scan!

Dr West
Reply To: New New Plan

Great news!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: New New Plan

We knew that...but it doesn't change the overwhelming relief when we hear the news. And any reason for a happy dance is good by me.
With you,
Janine

double trouble
Reply To: New New Plan

Thanks everybody. I got my music on and my mojo workin'!

Hard to believe one little lymph node could be causing so much trouble!
Debra

judys
Reply To: New New Plan

Great news, Debra!

double trouble
Reply To: New New Plan

The following is not an update, but some thoughts.

Below is a quote from another thread by Dr. West that struck a nerve (in a good way)...

" the only thing that knowing about metastatic recurrence earlier vs. later provides is an opportunity to know (perhaps worry, perhaps prepare — perhaps both) and to start treatment associated with side effects before there are any symptoms to treat."

These pearls, which Dr. West so prolifically offers, have been my source of strength throughout my experience with cancer. This particular quote gives, if you will, second witness to the validity of my oncologist's tendency to withhold treatment, to watch and wait.

I am asymptomatic. My disease has demonstrated itself to be indolent. My oncologist does not want to "use up" opportunities that may produce welcome results later in the course of my disease. He will not put me through the challenges of treatment sooner than needed just because I have a hard time dealing with "doing nothing."

He's right, and Dr. West is the one who consistently puts that opinion in terms that make the whole thing make sense. It is hard doing nothing. And it is hard for friends and family to understand. But the trick is to not sit around waiting for the other shoe to drop, but instead get as much life in as possible during the times when you're not being challenged and saddled with side effects.

And this is also a great time to plan. Get your house in order when you feel good and your head is clear.

Anyway, thank you Dr. West, for making this whole experience make more sense. I don't think I would be doing very well right now if not for you and this site, and the great people who give their support.

With love and respect, always
Debra

catdander
Reply To: New New Plan

Oh Debra, You have put that so well, so right on the heart of this site.

There are enough people who change treatment plans and get second opinions because of what they learn on Grace to make the site worth while.

But

The understanding that gives us peace of mind is the soul of Grace.

blue skies
Reply To: New New Plan

Debra:

I try to make it my policy to not speak up when I have nothing new or of value to add, but I think you have captured one of the most important take aways from this site.

You go girl! I feel like I am in good company as I follow your lead and excellent example!

Dr West
Reply To: New New Plan

That was very kind of you. It's always nice to know you're making a difference and helping someone.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: New New Plan

Debra, just wanted to ask how it's all going and how you are feeling?

marisa93
Reply To: New New Plan

Debra,

I agree with blue skies, you have absolutely captured one of the most important take aways! Thinking of you always and sending best wishes.

Lisa

double trouble
Reply To: New New Plan

We're all packed and ready for the trip to North Carolina tomorrow to get a second surgical opinion from Dr. Thomas D' Amico. I'm very fortunate to have this opportunity.

In the past I have seen discussions about lung cancer and blood clots, and in particular there was a comment from Dr. Weiss recommending that patients with no history of clots should move about the cabin every hour or so when traveling by air.

I have no history of clots, and am not traveling by air, we're driving, but I was wondering if we need to make extra stops along the way to get out of the car and walk around a bit, or take any other precautions? I apologize if this is a silly question.

Debra

P.S. My DIL would drive the full 9 hours non-stop if it were up to her!
Off topic... who's got the best BB-Q in the research triangle area?

catdander
Reply To: New New Plan

Hi Debra, Good luck on your trip, I'll be thinking of you. You know there are no silly questions so let's see if we can conjure up Dr. Weiss one more time (at least) before the big day. :)
Janine

fortmyr
Reply To: New New Plan

Yes, good luck with the consult Debra. I'll be thinking of you. Enjoy the trip,

Myriam xxx

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