Pegi

Michele,
Today was rough. They did find a fissure and with chemo it will take a LONG time to heal. I finally got him home and settled in for the night hopefully. Right now he needs sleep and rest. They gave him enough meds to choke a horse. i HAVE A LOT OF READING TO DO TOMORROW!
Well the settled in did not work, He is back down in his chair and in pain. Will keep you posted.
Peg

Michele, 
Trip to ER had him admitted and resting comfortably last night for the fist time in months. They gave him morphine for pain. It was amazing to watch his face and body relax. He is scheduled for the surgery today and when I asked who  the surgeon was they named the Dr that cancelled all of his treatment. Lee and I both just started laughing. Seems she will take payment from hospital for services just will not take our insurance. Pretty bad when health care has come to this.
On top of everything else we go thru on this journey we do not need more BS handed to us on a plate. I have been bad also. I did not call his family to tell them anything about this. Before I left the hospital last night I fessed up to Lee. His reply was do not call them. And I am OK with that one. have to be back to hospital by 8 am. Still do not know when he is scheduled for procedure.
Any results on that MRI?
Hugs & prayers,
Peg

Peg a big hugs and prayers for you and Lee! Today.hopefully there will be no more pain after this surgery.I was able to imagine his face with no pain after reading your note and it was beautiful! Let me know how he is later OK?!  Doctors hmmm u know they never even called or returned calls on his results. I went myself to pick up his results on MRI .and what I could read he is clean!!! Monday was pets scan  and I hope they call on that.yes have Lee write a note that he said not to call family.that's what my husband did.; then they can't give u a harder time blame game. Well Peg its 2 minutes to 8 am prayers your way oxox.   Michele

Peg that is horrible especially because Lee is in such pain.its so easy for insurance co to take your money but when something like this its a crime.yes I would take him to er. So sorry you are going thru this. Sincerely Michele

Michele, like you I am now on this journey with my husband. We have hope but we are also realists. Right now I am grateful for everyday past 6 weeks. 2 rounds of chemo down and once the initial shock wears off you take one step at a time one day at a time. There are so may UNKNOWNS like waiting for test results. Thank God the hospital has a place where we can get results quicker than the dr's. Do I have days where I am overwhelmed? Oh heck yes! Am I worn out? YES! Did I stop by my primary care Dr to get a B12 shot? YES! And I feel much better after 3 days. We are in this fight together and we stand united in front of family even when they disagree with us. It is our path and our choice not theirs.
 
Peg

Megha,
I'm so very sorry to learn of your mother's affliction.  I helplessly watched my mother struggle with life threatening disease as she became elderly.  While not cancer, it was disabling and debilitating, and I was heartbroken watching her die. My memory recalled a young vibrant woman but reality was a woman who had life ending cardiopulmonary disease and who was fighting to take a next breath.  I have no suggestions for how one stops the death of a loved one.
I'm sure you are trying your best to ensure your mother is comfortable.  Is she in Hospice care?  My mother was enrolled in Hospice and she was vastly more comfortable before she passed.  
I wish there was something I could do, some help I could offer.
Stay the course.
Tom

Hi Megha,
Welcome here. I'm so sorry about your mom''s situation.  If she isn't already in hospice, I suggest you check it out. Hospice should be able to help her be more comfortable. My mom, like Tom G's, was in hospice at the end and it was a godsend. 
Bridget

Another voice for hospice here.  It's always sad to lose a parent, but to the extent we can spare them suffering, we will be honoring and caring for them.
Hugs and support to you and your mom,
Teri

Michele, My brother died from cancer caused by Agent Orange. PLEASE fight this all the way. DO NOT GIVE UP! They do not like to admit that it is actually killing people.
Hugs & Prayers,
Peg

Lexie,
Good news!  No chemo - better news!!!
Bridget,
Absolutely agree medicine is both an art and science.  While First and Second Line treatment may be cookbook (National Standard of Care), Third Line and beyond is dependent on the intuition of the oncologist.  So sensing the artistic qualities of an oncologist may be an important thing to do.  How it is done is beyond me.  I was just lucky to have a medical artist as my oncologist.
Ladies - stay the course.
Tom

It's good you have some clarification, even though it's not very clear . It sounds like you're doing a  good job informing yourself and making decisions about your treatment. I've been in that position, though not with my lung cancer, which was 1A. On my breast cancer, I was offered long term estrogen surpressing medication. (Who knew we still have estrogen after menopause--it's produced by fat, and I am well equipped with that.) These aromatase inhibitors were becoming the standard treatment at that time, but after seeing the stats about how much they reduced risk of recurrence and reading a lot about side effects, I decided to forgo them. On my cervical cancer, which was aggressive, stage 3 and a rare type,  one oncologist on the tumor board recommended additioal chemo, more treatment than my oncologist recommended. I got a second opinion, by a doctor who had some clinical experience with this type of rare cancer (there are no studies of it) and opted to "throw the book at it" and my onco agreed to do the additional treatment. 
So, now I'm NED on both those cancers. I don't regret my decisions at all and am grateful for oncologists who respected what I chose to do. I'm a firm believer in science, and I also think that medicine involves some art and intuition both on the part of the doctors and   the patients and can help guide informed decisionmaking.  
Best of luck with you in your path forward,
Bridget

So I met with my VERY young oncologist yesterday.  Nice guy, like his taste in socks.  He started off doing the "lung cancer for the utterly uninformed" routine--I cut him off and told him what I do know, what surgeon and I had discussed, etc., and he switched gears and started talking to me as someone who understands the basics.  
The tumor board hashed out the dispute between pathologists and surgeon, and pathologists carried the day.  Oncologist understands surgeon's position but his recommendations have to be guided by what pathologists determine.  Bottom line, tumor is classed as T2a, and cancer is staged as 1b.  He tells me that, interestingly, stage 1b is the one stage at which it's really anyone's call whether chemo is appropriate or not.  With stage 1a, chemo is NEVER recommended, as it actually has a negative impact on outcome.  With stage 2 or above, chemo is the standard recommendation.  But with 1b, apparently the evidence is equivocal, and there is some indication chemo might improve the outcome in 2-3 percent of cases.  He said if I chose chemo, it would be four rounds of Cisplatin/Alimta.  He went through the possible side effects, and asked what I thought.  I said, well, I know my surgeon was advising against chemo, and as much as I'm willing to do whatever is necessary, I'd just as soon skip the chemo if that's a reasonable option.  He  immediately assured me that he was totally fine with that--he thought it was a perfectly reasonable and sound decision.
I asked about what kind of scans they would be doing for surveillance, and he said they were more "intense" than the ones used for screening--more detailed.  So my first scan/followup with him will be in four months (late Nov/early Dec).  I mentioned what my surgeon had said about followups with him, and he said, "Well, you COULD follow up with either one of us, but if there were to be a recurrence, I'm the one who would be handling your treatment," so guess I will stick with him.  
Oh, and I did ask about genetic mutations, etc., and he said none of that has any relevance unless it is stage 3 or greater.  
So overall I feel good about the game plan for now.  If a recurrence happens, it happens and I will deal with it accordingly, not beating myself up for not doing the chemo (which wouldn't guarantee a nonrecurrence, anyway).
Yesterday was a good day.  I had the day off because my birthday was Thursday (I switched days off to get Friday instead), and I also got good news about some expensive repairs I have to have done to my house (won't be QUITE as expensive as I'd feared), met some friends for lunch in Philadelphia, met with oncologist, and then drove up to the Stone Pony for a concert, surviving one song in the pit before deciding my post-surgical body was probably better off further back (punk bands, gotta love 'em).  I've started going to yoga class and walking on the other days.  This experience has driven home how important it is to stay healthy, so I'm trying to put that momentum to work!

Peg I have no info yet on MRI I called 3 × today. That's the VA for ya. We start round 2 the 16th  17 18th with radiation I think. He gets pets can this Monday. I wish u the best on the following week and if I don't hear from you I will understand.  I will be thinking of you both and praying .

Hi Pegi, I just saw your post of July 27 and I wonder whether what your husband needs is physical and occupational therapy in addition to palliative care. If you haven't worked with PTs and OTs before, you might be surprised how many things they can help with: finding ways for a person to get around more easily and safely in their home, getting mobility and adaptive equipment to make things easier, teaching caregivers how best to assist someone without hurting themselves, etc. Is your husband on Medicare? I think Medicare will pay for this. You may need to shop around some. When my mother broke her hip, the PT who came out was helpful and really good but the OT was not so great. I did get from the OT an equipment catalog so I could look through it to see what might be helpful.
Just an idea I had. I wish you all the best. 
Bridget

Karen,
Sorry about your posting difficulty. No tutorial that I know of but it is a good idea and I'll send it up the chain. 
Don't worry about where you post (in discussion boards), we'll find you. There is a gray (I'm color blind so anything not black is gray) tab called unread content that most of us check to find the new posts.  Indeed, that is how I found yours. 
Sophisticated, yes in a comprehensive and caring prospective but not high-browsed sophisticated. Any lung cancer survivor or care giver gets automatic entry and attention. All have a tough row to hoe and all are equally valued and important. 
Take a look at Lung Cancer 101 on the Lungevity.org website. That is the most comprehensive presentation on lung cancer I've seen but is easily understood even by this medical phraseology challenged civil engineer. 
Stay the course. 
Tom

Hi, there,
I'm a big believer in e-cigarettes in preference to smoking.  They are the ONLY things that have kept me off cigarettes for the past year and a half (over a year before cancer diagnosis).  I've told my doctors about my vaping and they list me as a "former" smoker.  I'm convinced that my lung function is far better now (just had lobectomy last week) than it would have been had I not switched.  Depending on where you purchase the e-liquids, the ingredients are the same (except for the nicotine) as that used in inhaler-type devices and in the "fog machines" used at concerts.  I noticed a huge improvement in my breathing/lung function since switching.  
That said, once I was diagnosed I researched a bit more carefully, and though there is universal agreement that nicotine isn't itself carcinogenic, there is theory/speculation that nicotine MIGHT provide a more hospitable environment for cancer cells once they have become cancer cells.  IOW, it might encourage growth.  Given that, I am in the process of tapering down to zero nicotine.  I've gone, in the past three weeks, from 1.8 percent e-liquid (equivalent to a very light nicotine cigarette--without all the harmful products of combustion) to .6 percent.  I should be down to zero in a couple more weeks.
So I would encourage your mom to discuss it with her doctor, and maybe suggest she research it for herself.  If she absolutely would be smoking if e-cigarettes were not available (and let's face it, the stress of a cancer diagnosis is exactly when it's hardest to quit a deeply ingrained nervous habit), then I'm not sure it's your place to tell her doctor.  Best to express your concern but keep the dialogue open.
Teri
 

Peg won't know about MRI for a couple days.oh I hope Lee gets fixed that is so painful then have to go through another round of chemo. I pray that it is doing its job and shrinks everything. Yes all these appointment wear your then when u don't have one your ( I) to tired to do anything else.  Good luck at primary hope he does something before chemo. Thinking of you....

Hang in there, you two--your husbands are lucky to have you.  Make sure you keep taking good care of yourselves!
Teri

Michele, Any news on the MRI yet? We have had a week of Dr visits and of course FAMILY. Lees rectal fissure is really screaming now. Had a visit to oncologist yesterday and his 1st ?? was why are you in a wheelchair. I busted out laughing. He does not get the butt problem causes his pain level to fly from a 3 to a 9 in seconds. And walking sets it off. Then he says we need to get this problem taken care of...... YOU THINK! 
We meet with our primary care Dr. tomorrow. He will push for fixing the problem. Round 3 next week for chemo. Then they will wait 7 days to do a CT scan to see if it is shrinking or moving. i look at our schedule for the past month and just cringe and people wonder why I really would like a few QUIET days. And the coming schedule is not much better. And yes I am tired BUT I keep putting one foot in front of the other. The main concern is Lee and making sure he is as comfortable as he can get.
 
Take Care,
 
Peg

Michele. I pray for a clean MRI. Stay on them to get the results. Thinking of you.
Peg 

Michele. I pray for a clean MRI. Stay on them to get the results. Thinking of you.
Peg 

Pegi,
I understand and know your husband appreciates all you do in caring for him.  So do we.
We don't have stairs in our home but my wife often had to carry me from bed to bathroom during my three days of nightmarish pain after each of my 18 chemo infusions.  So I know what you are going through.
Then you have to encounter someone pushing papers and agreements in your face on top of your already difficult burden.  I truly despise people and organizations who try to profit from cancer survivors and caregivers misfortune.  But sadly, it happens.  Misfortune be it a tornado or a lung cancer diagnosis always brings out the scam artists.  Good that you are consulting with your primary and hope better alternatives result.
Stay the course.
Tom 

Thank you Vivian for the "reminder" ..live life in the NOW !!  Things are good today, we are blessed !!  We won't worry about tomorrow.  The "shock" part has passed, now we are dealing with different treatments for my hubby.  He is responding very well and is in great spirits ! We know the writing is on the wall we just are choosing not to read the final words yet !!!  Thank you again, greatly appreciated !! Michelle

Judy,
On the different approaches between oncologists, consider the bias is to treat conventionally applying the accepted "standard of care."  When a new innovation or approach hits the medical community, there is often a resistance to embrace because it is counter to a standard of care.  And, this is a good thing in my view.  Doctors and patients want medical treatment results to be repeatable and predictable.  What works on one patient ought to work on another.  Thus the standard of care approach.
But, I've encountered doctors who are willing to consider alternatives and in my case, it was after the standard of care options failed to demonstrate results.  Then, the art of medicine -- what to do -- becomes more important than the science -- how to do it.
When I received my SBRT in 2007, I wondered why this technology couldn't be applied to address more than one tumor.  While stereotactic methods had be used successfully against brain mets, using these methods in a respirating lung was much more complicated.  The target tumor was in constant motion and so precise control was required.  The technology had to mature and thankfully I was fortunate it did just in time to treat my chemo-resistant tumor.  So, all of the enabling technology was about keeping the apparatus aimed at a moving target.  That solved, think of the complexity and the risk of employing this powerful radiation in two areas in close proximity.  Even if not concurrent, the radio oncologist needs to account for the amount of total radiation received, not from one stereotactic treatment, but two (recall SBRT is powerful, focused radiation that passes completely through the body). But trying to account for the total amount of powerful radiation, its application paths, and safety margins on one tumor is difficult; adding a second tumor in close proximity (5 to 6 inches between tumors) increases the level of difficulty exponentially.  As an engineer, I can appreciate the technical complexity and sense the risk involved.  So I understand the reluctance.  
Remember also, that professional disagreements and productive debate of the advantages and disadvantages are what results in advances in science, engineering and medicine. The pace appears slow, especially in today's world of software driven innovation.  But computer programmers have the advantage of testing-fixing-testing quickly and doing so in an environment that causes no harm (a program within a computer).  Proving a new recipe for concrete, inventing a new automobile breaking system, or extending stereotactic methods to multiple tumors takes a lot of time to test-fix-test to ensure repeatability and risk reduction. 
I've also found in life there are no guarantees, period.  I believe the quality of my life and its enjoyment are in my hands.  Living life well entails nothing more than a conscious decision on my part to do so. It took me a while to realize this but cancer provided me the opportunity.  
My book is only available through Amazon but the Kindle reader application can be installed on almost every type of computer, smartphone and tablet.  People have written telling me they've gone to their public library computer lab and read it for free.
Stay the course.
Tom

Sandra,
Not first hand experience but I know a lot of folks who had it including my daughter.  Her brain radiation was post surgery to remove a meningioma.  She had all the concerns you mentioned but there was no other way of dealing with her problem. She did experience side effects with a lack of energy being the most concerning. This resolved quickly after radiation was complete. 
Please try and relax a bit.  Radiation works and should address your brain mets.  You'll get through this.
Stay the course.
Tom