There's no official recommendation on this. It's always good to get up and move around every couple of hours whether someone is flying or driving.
Good lick with your consultation. I'm confident it will be a thoughtful one.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Debra, I like your attitude. As blueskies mentioned above, I don't like to chime in if I have nothing new or of value to add, however this time I could not help but butt into this conversation to tell you that you are truly an inspiration on this tough and lonely journey.
Just wanted send a big Good luck your way, were all here for you, a long the way, there, on your way back or when your home.
hugs your way
Re blood clots, yes, I still advise regular movement on car trips. Lack of movement is a risk factor for clots.
Re bbq in the triangle, Allen and Son.
I'd like to follow Dr. West's footsteps and wish you very very good "lick" - - I mean LUCK!!! Please keep us posted, dear friend.
Best of luck, Debra, and let us know how you liked the BBQ! Relax and let DIL drive :-)
Good luck Debra with the trip and the second opinion.
And best wishes to Dr Weiss and his fiancee for their wedding day! (are we allowed to know approximately when that is going to be? I say "approximately" because otherwise we would all - obviously - invite ourselves ....)
Approximately a week and a half from now, followed by what sounds like a fabulous two-week honeymoon in French Polynesia. He is apologetic about not being around here much lately (though understandably) and intends to reconnect with GRACE far more after his return.
Dr. Weiss made mention of a 5 week timeline but I don't remember when or where (I looked). But I think it's early Sept. Maybe next week!
Trip to Duke Cancer Center update...not for the faint of heart...
Dr. D' Amico said, "Do the surgery (pneumonectomy most likely) or die of lung cancer...about 2 years."
I appreciated his bluntness! BUT WAIT...there's good news! (always :lol: ) He can do a minimally invasive procedure that will result in an incision that will be smaller than my VATS incision from my prior segmentectomy. And he feels that I will have very good QOL afterward. He wants an updated scan and will probably repeat the ventilation perfusion scan. No date set yet. He did not say anything specific, but he appeared to be in disagreement with how things have been managed to date... just didn't look happy when I answered questions about my prior treatment history, and kept glancing at his companion (a fellow).
But, what's done is done and now we work on the logistics, one of the hardest parts... how do I manage a surgery that will be done 3 states away from my home and family? We'll get it done. And I will keep my Grace family posted.
With love and so so much respect,
Debra, thanks for the update. Happy for you that you seem to have found a better option. Questions: is this surgery offered with curative intent? It would be helpful to know if the doctor's disagreement was on chemo rad as my understanding is that chemo rad is the preferred treatment for stage 3b in comparison to chemo alone or TKI inhibitor. It would be educational to have some discussions on this subject.
Faint of heart, pleeease. I'll need more info. :-? Sometimes the more difficult things get the more goofy I get. I suspect you will respect that.
Did you ask the what if question about his partner being in your position? Is the tiny incision surgery for intent to cure? Or will it improve qol or what?
Of course answer or not at your leisure and as you contemplate.
Well, that was a pretty rough thing to hear...However, it's good to know that it can be done with as little damage as possible. When will the surgery take place and how long will you be staying at the hospital? I hope some relative or friend of yours can accompany you where this will be taking place to offer some support after the surgery..
Good luck with everything Debra. I'll be thinking of you,
The surgery would be done with curative intent.
The surgeon here in Jacksonville, a cardithoracic surgeon who also does transplants, would be doing a posteriolateral muscle sparing thoracotomy, using an intercostal muscle flap to reinforce the bronchial stump. In other words, if I've done my homework, instead of cutting through some of the large muscle structures, they retract it back out of the way. They also use a piece of muscle, which they attach over the bronchial stump where the lung was removed. This reinforces the stump and helps avoid bleeding and fistula, which are two of the complications that can occur post op. These types of complications would possibly result in the surgeon having to go back in to make repairs. The incision starts at the backbone, follows the ribs around and ends somewhere between nipple and sternum. Very big. And a very large area of the body is exposed during the procedure, which I imagine increases the risk of infection.
The surgeon in Durham, a dedicated thoracic cancer surgeon who doesn't do hearts, transplants etc., but dedicates his time to these procedures, would be able to dissect and remove the entire lung (inside a plastic bag to avoid "seeding" of cancer cells) through this small incision. I don't know the details about how his approach differs from the VATS I had on the left, but I will have a chance to ask many more questions before we do this. I had read about this way of performing pneumonectomy but never thought it might be possible for my case and situation.
The treatment decision that there is a question about is why did my rad. onc. stop my radiation? He dictated this in his notes:
"She has been on a treatment break for nearly 2 weeks and her counts still have not recovered. She is still severely neutropenic with grade 4 neutropenia. I cannot risk continuing therapy and lowering her blood counts further and additionally, given the very long break, the biological effect of the radiation has diminished."
continued from last post...
The Duke doctor wondered why, after the cisplatin was discontinued, neupogen was not used to get my count back up. I recall my onc. saying it couldn't be used with radiation. The Duke doc said continuing radiation would not have further lowered any of my blood counts, so why the long treatment break and the discontinuation of rad is the question. The only answer I can give to why the rad was not completed is I don't know. But yes, in my understanding it is the standard of care for IIIb.
The Duke doc said if we were to try to finish with the other 30 or so gy now it would not be strong enough, and that to start over and do the full 60 now would potentially cause enough damage to make the surgery impossible, therefore we go straight to surgery. But he did say that if anything shows up elsewhere after surgery that rad to a new area would still be an option.
I hope that covered all of the questions, and that I have it all right. If not, hopefully one of our doctors will chime in. Sorry about the length of the post.
I'm glad you had a thorough discussion, and you were clearly remarkably knowledgeable and well prepared to participate and digest so much. While I agree that Dr. D'Amico's current assessment that "surgery is the remaining curative option...period" is very likely correct, I am wary about looking back in hindsight and judging your management up to now too harshly. Whether it would have been done the exact same way somewhere else or not, I believe you know that your situation was and is quite unique and complex... I truly think that many experts would develop very different plans for you, with even more variability in management as your blood counts remained at such a low level. I do agree that radiation wouldn't have likely dropped the counts much more (though radiation that includes significant bone (and marrow) would only slow recovery of counts and can lead to lower blood counts on its own) and that it's ideal to minimize radiation treatment breaks... but I also think that it's always easier for us to second guess after the fact. There was nothing straightforward about your situation.
Everyone here will be pulling for you.
Debra, that sounds really great that you can have the surgery with so little invasion. I do remember reading that discription before. I'm so glad you are getting the opportunity to receive such expert care. My only regret that I evidently can't get rid of completely is that I didn't insist D have his surgery done at UAB.
Thank you so much for giving us the extra info.
You're right Dr. West about not being harsh, and I think it's probable that Dr. D' Amico was just trying to understand the reasoning behind discontinuing the rad. based upon what I could tell him as a layperson and patient. He never actually said anything derogatory about my current team.
I think my oncologist has been right on to date. And the fact that Dr. D' Amico can do this particular procedure does not mean that I think the Jacksonville surgeon is not very good, only that he has expertise in different procedures. Dr. D' Amico probably wouldn't be the best choice of surgeon for a heart transplant either.
So, same dilemma, different (less frightening) procedure. I'm still worried about maintaining my independence post op. and about how well I will do with part of a lung. But I've made the decision that if we can work it all out logistically, I'm pretty sure right now that I'm going to do it. I just need to go for it and accept the outcome. I think. To be continued...
You are on quite a ride. I hope whatever you decide it works out to your advantage. I just wanted to mention that I had a very similar experience at my second opinion with the doctor looking at their staff etc over the previous choices that had been made. They weren't happy with them and made it fairly obvious. I do believe that things could have been handled better and was really miffed but as time wore on I realized that the experience of my previous oncologist is what played into my earlier treatment and of course we count on a doctor's experience to get us through. And my early treatment was very standard for the diagnosis and now I look at it as a contibutor to my current state of NED. The new place would have approached it quite differently from the beginning but at least for now it has all gone well. Sometimes things just aren't straight forward no matter how bad we want them to be. Take care and I hope that you are able to choose your treatment with confidence in your decision. We are all here to back you up. --mikem
I am thinking about you and wishing you the best as always! Once the decision is made you go for it, believe in it and never look back! I hope you can work out all the logistics and keep us posted(I know you will).
Love and hugs,
Thanks Lisa. And Mike, I always look for your input. Thanks for always following my journey. If I were NED I don't know if I would be able to stay immersed in this world of cancer. It takes so much fortitude. I might be inclined to stay as far away as possible from any reminders of it.
So, I had been thinking on my way home from Durham that I knew exactly the procedure that Dr. D' Amico was talking about... Single Port VATS Pneumonectomy has been coming up in my searches for some time, in particular the work being done in Coruña, Spain by Dr. Diego Gonzalez-Rivas. I am pretty sure this is what he is offering. I will be confirming that as I acquire more information moving forward. It's pretty fascinating, and to have an opportunity to have the procedure is quite unexpected. It looks to me like something that will become the standard of care in the future (about a decade away if I'm understanding correctly) and requires further development of specialized surgical instruments and such. Would be curious to hear Dr. Farivar's input.
So, I will be curious also to know if this is indeed the procedure and how long Dr. D 'Amico has been doing this and how many, etc. but it appears that it comes rather naturally to any surgeon already proficient in VATS. Wow. I'm humbled.
Funny you should mention that about being NED and staying away. As I'm sure you noticed I don't participate as much. I do checkin constantly though. GRACE has been a bit of an addiction for me. But you are right sometimes it is difficult, but I also know that change could be right around the corner this early on so it makes sense to me to continue coming here, and I will keep doing so, if for no other reason than to follow those I have always followed. I do feel a family connection even if i'm not participating much.
You procedure does sound fascinating. I am going to look it up since I had the full thoracotamy(sp.?) to have my lung removed. I might get jealous of your 'easy' one . --mikem 8-O (Not sure what that smiley means but it seemed appropriate lol)
Just wanted to pass on my own well wishes. If you need any restaurant suggestions in the Durham area, I'm sure own esteemed oncologist and foodie can recommend some good ones! Post surgery, you may want something in the form of a milk shake and you can do no better than the ones from Cook Out! I've never seen so many flavors.
Best wishes for a successful operation that leads to many years ahead,
Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL
I am in awe of how you have been seeking and getting information for the best care for your situation going forward.
You have become your own best advocate and know more than any person should have to know about this disease.
Good for you, I do not come on the site very much these days but I do watch your progress and am on your cheering team.
May God bless you and help you to make your decision and if you choose to go through the surgery, to bring you through this surgery in good form. My prayers will be with you and I will be looking for your updates that I fully expect to be good news.
Dr. Walko... I'm a foodie too! My taste buds are a little (post cisplatin) weakened, but thanks for the tip! I saw Cook Outs everywhere. We really wanted to go to Allen and Son for BBQ too, but never had time to work it in. I will have to get my caregiver to sneak some in to the hospital while I'm there, though I will be up and out as quickly as possible. We might seek you out for more recommendations while we're there.
Lembird! How are you? It's been a long time my sister. I'm only informed because I'm fascinated with all things medical. I started working at a hospital years ago to participate in a pay as you train operating room tech job, but they discontinued the program before I could get in. I did work in both an major OR and an outpatient OR, and they used to let me watch surgeries after my shift if I stayed quiet and out of the way and didn't faint! I loved it, and should have pursued it, but life as a divorced mom took me in another direction. When I've recovered from surgery, perhaps I will go back to school. So good to hear from you.
I had also meant to say that Drs. D'Amico and Harpole, also at Duke, are superlative surgeons who I believe are also at the forefront of minimally invasive surgery techniques like VATS. They were among the first to publish their growing experience with it, so I do think it is very likely that they have exceptional experience with this, and that it isn't a shortcoming of the Jacksonville-based surgeon that he would use a different approach (I suspect Dr. D'Amico would also suggest he's not the right man for transplant surgery).
Oh Debra, I am sorry that you(and everyone else here)have to be so immersed in the cancer world! As you say, it does take a lot out of you! I would love to see you NED and be able to stay away, except to come and say hi!
I like to stay updated on everyone here but it is difficult to offer anything other than my support. GRACE will always be special to me and I will remain a part of it for many reasons. The best being JimC of course! He has helped me get to such a good place in my life:)
My best wishes to you and everyone here dealing with this awful disease!
Love and hugs to you always,
Oh yeah! Do the :-D :-D :-D HAPPY DANCE!!! :-D :-D :-D
Debra, I am SO HAPPY about this news. It has been a long, difficult spell in the GRACE community the last several months,
I am hoping that this will mark an upswing in positive trends -- including (most unselfishly for me ;- )
This sounds GREAT!
PS: As someone who worries about the "logistics' of traveling to other cities for treatment (Memphis for an anti PD1 trial) , I always come down to "what would I not do" and "what would I not spend" (A $300 plane ticket? "A $100 a nite hotel room?) for even 4 months of NED? Or "no progression"?
Be sure to check out the various cancer support organizations that may have reduced cost housing options available for you and your personal support network. There are LOTS of them. And your clinical trial/second opinion team ca work with their on staff social worker to identify them. They can provide a really lovely opportunity for "stress free" (all right, a different metric is likely necessary here) time with your children/grandchildren (beds made, meals prepared, pool availability, etc. etc.).
I am right there with you Debra. Carpe diem!
Checking the earlier posts...
As excellent as hospital food has gotten (in DC anyway), there is always DELIVERY of fabulous local specialties and I'll be the nurses will be happy to help!
We are all very happy for Debra. This is like an escape route from a dark tunnel. Well, her case is "special". But what can we all do to check our individual unique case to ensure not anyone of us miss any window of escape that may be there but not have been uncovered?
Whoo Hooo, Ms. Debra - - I like the plan. And the surgery you've described is the exact surgery my Mom underwent with her pneumo. Her surgical scar basically runs from beneath her armpit to about 2.3 inches into her breast tissue. They bagged and took her lung just as you described it. And, yes. . .the muscle flap procedure helps stabilize the main bronchial stump and mitigates against fistulas.
Please please please do keep us posted. . .and BEST OF LUCK TO YOU!!!
I firmly believe that the course that has opened up for me is the result of believing in a higher power. I won't get all religious here, but in spite of the fact that I have studied relentlessly and have empowered myself with information, the fact that a lung cancer advocate (her name is Bridget) came into my life and got me the opportunity to go to Duke had nothing to do with my efforts to educate myself. It was just a pure blessing. So to answer your question...
"But what can we all do to check our individual unique case to ensure not anyone of us miss any window of escape that may be there but not have been uncovered?"
my humble answer can only be this. Believe. I believe things will go the way they are supposed to, and each day I try to remember to ask, "what am I supposed to do today?"
Much love and respect,
Hi Debra, thanks a lot for sharing your story and your thought on my question. Wishing you all the best.
Debra's case is one in which her cancer hasn't shown evidence of distant spread, but local therapy options have become extremely limited. I think it's especially valuable to seek a second opinion when someone has potentially curable disease that doesn't have a straightforward management strategy. On the other hand, there aren't likely to be overlooked great options in the setting of metastatic disease (except perhaps for the identification of a novel molecular target that might be known to an expert but not to a more general oncologist). I do think that a second opinion can still be very helpful in metastatic disease, such as to prioritize existing options, though those insights aren't going to be the difference between cure or not.
Well, as scary as it is, we're all set to go to Duke for a (2 port) VATS pneumonectomy on September 29th. Some wonderful people and great organizations have come together for me to make this a financial possibility and I am humbled by the opportunity to be operated on by such a great surgeon.
I don't know if I will be posting during the post-op period, but I'm a Grace addict, so I'm sure I'll have my laptop with me and be online and posting as soon as possible after surgery.
I've never been frightened to sign the consents and breathe in the anesthesia before, having trust in the physicians and other health team members, and trust in my ability to bounce back physically. But this time I'm just pure scared. Of possible complications, and of how this will impact quality of life.
To my pneumonectomy heroes, Mikem and Laya's mom, I gotta say thank you for the inspiration and it's knowing your stories that gives me courage to bite the bullet and go for the cure.
I love you all, Gracers!
Dear Debra, good luck with the procedure! I'll be eagerly awaiting news in October, hoping that NED is just around the corner.
Sending you lots of good luck wishes from Jersey to you!
You have every right to be scared, surgery is scary any kind, but how your cards all fell into place and how the team all made it happen for you and being at a great place,your going to be just fine Debra!!
Were all routing for you and can't wait to hear from you!
Most recent CT findings: Hilar node continues to grow (1.8 x 1.8 to 2.4 x 2.0) and increase in SUV (9.5 to 10). I coughed up a BB sized blood clot, along with blood streaked mucous so bronchoscopy is ordered for tomorrow to try and determine the cause.
A new ill defined opacity, 1.5 x 2.0 has shown up in the posterior right upper lobe, abutting the pleura. Pneumonitis or neoplasm.
We don't know if this new finding will affect Dr. D'Amico's decision on the surgery. The reports are being sent to Duke, so we'll just have to wait and see.
Mutation testing negative for ALK positive for Kras, EGFR results not received yet but they're usually mutually exclusive.
So, there it is. Wish me luck on my bronch tomorrow. Like having your lungs roto-rootered. I hate them! I'll post tomorrow with the results and to whine about my sore throat.
Debra, I'm sorry about these new developments. I hope the broncoscopy goes well tomorrow and, most importantly, that the results are negative!
Just want to say I am pulling for you. I really hope this doesn't affect your surgery chances. Whine all you want about the roto rooter. Those things are just not fun. --mikem
I'll be with you in spirit, me and the spirit of the river
Fingers and toes crossed, Miss Debra, that the bronch goes smoothly and the answers provide relief rather than further anxiety.
I suppose I should ask this question under the correct sub-topic but is it Medicare that covers all the different places you go for treatment, or is it private insurance? Sorry if that's personal, you don't have to answer here. I'm starting to become entangled and you've been so methodical, you seem like a great one to ask :)
Best of luck tomorrow,
My best wishes for a relatively comfortable procedure and good results.You will be in my thoughts tomorrow.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Deb, so sorry to hear of this new bump in the road. Hoping that's all it is a little bump and everything can proceed as planned. Keeping you in my thoughts and prayers. Take care, Judy
I want to send my best wishes for all to go well tomorrow! I will be thinking of you and waiting to hear how you are doing:)
Love and (((hugs))),
Good luck with your bronch. We'll look forward to learning more.
Best of Luck, My Debra! And, please keep us posted. . .
Lots of Luck your way...Your ears will be ringing today with all the thoughts your way!
Hi all. The bronchoscopy went really well. He didn't see any sign of tumor invasion. I don't even have a sore throat but I did just sleep for 4 hours. I feel great, nothing like the last one, which was a biopsy and was done when I was already sick. That one was rough. This was a breeze! Thanks for all of your encouragement.
So now we wait to see if the new area seen on the CT is going to affect the surgery plans. It could just be inflammation, and the whole lung is going anyway, so I will be surprised if he cancels it. I'll keep ya'll posted.
Just wanted to wish you best of luck with surgery and all good wishes for successful treatment
Love to all