Bill

//////////// B : The " increased opacity within the right lower lung field " can appear on CXR as a result of various conditions such as infection, inflammation and fluid accumulation. Good luck. B

////////////// R : Can't hurt to try but IMO the Celebrex is most likely only providing a modest anti-inflammatory effect at tumor sites vs. actual tumor shrinkage. This anti-inflammatory effect would result in some apparent additional tumor shrinkage being visualized on scans ( vs. Tarceva alone ). The higher dosage requirement suggests this, as well. Good luck. B

//////////// Kelly : Oxycontin is a proprietary name for sustain-released oxycodone. Your mother must be taking both the sustain-released plus the immediate-release ( oxy IR ) for breakthrough pain with the sustained-release formulation labeled as Oxycontin and the immediate-release formulation labeled as oxycodone. If this is not the case, you need to clarify this with the prescribing doctor(s) in order to check for possible double dosing. Bill

/////////// Agree ... Alimta is much more toxic than initially promoted. IMO if anyone receiving Alimta were to develop severe and persistent fatigue with SOB I'd urge you to get a CXR ASAP in order to R/O fibrosing alveolitis. B

Laurie : Sounds typical. All of the schedule 2 opiates, in therapeutic doses, cause a wide variety of mental and physical adverse effects. One suggestion is if this becomes a big problem ask the prescribing doc to try another comparably dosed schedule 2 opiate. For instance, oxycodone or morphine. Even though they all have the potential to cause the same or similar adverse effects many patients who switch around discover that they tolerate one opiate better than the others. Bill

Amanda : My wife experienced a severe adverse reaction after receiving one round of Alimta. She was cheerful, active, walking, talking, cooking, etc. for the first two days following the tx. Then on the evening of the third day she experienced a sudden onset of extreme fatigue and extreme SOB. The cause was determined to be a diffuse alveolitis that was unresponsive to tx with massive doses of corticosteroids and ( prophylactic ) antibiotics. About 50% of the previously healthy tissue in her left lung was irreversibly damaged and appeared " whited-out " / opaque on CXR and CT scan. Previously healthy tissue remaining in her right lung was completely " whited-out ". I have no regrets about her receiving Alimta but had I known about the potential for this adverse reaction I would have asked the med onc to reserve Alimta for last chance salvage tx as there were still a couple of more established chemo tx drugs for NSCLC that hadn't been tried yet. In fact, the immediate tx plan at that time was to try Alimta and Taxotere in no particular order. At the last minute the med onc decided to go with Alimta first. Good luck. Bill

Betty, It sounds like you may have radiation recall. My sister-in-law Etsuko had spine radiation in addition to the same chemo drugs that you mention. My brother Bill ( Etsuko's husband ) tried Aquaphor but it did not help. Bill ended up preparing a Lidex based cream compound that he applied 3 times daily to the inflammed area that gave Etsuko some temporary relief. Hopefully your burn area will clear up but if its radiation recall the inflammed area may stay that way for a long time. The chemo drugs in your system will keep inflamming the radiated area. Etsuko's burn area never cleared up. Gemzar is one of the worst chemo drugs in causing radiation recall. Carol ESC 7/28/47 - 6/19/06

Adela, Thanks for the thought. I will tell Bill. He has always kept pretty much to himself and submerged himself in work up until Etsuko's cancer diagnosis when it all came to a screeching halt. He is a clinical pharmacist and eventually will return to work but he is in no hurry to step back into a medical setting after over 2 years of medical chaos and tragedy. Etsuko's down hill slide the last month of her life was heart breaking to all of us. Carol ESC 7/28/47 - 6/19/06

Pretty harsh and quick krecovery that you expect. My brother not only witnessed his beloved wife pass on June 19 but he signed the morphine drip directive that ended her life. A true double whammy that he must deal with. Carol

Several states are conducting pilot programs whereby unused drugs and medical supplies, that meet certain packaging requirements, can be donated and redispensed to indigent patients. In some cases the program specifically targets cancer patients ( see KY & NE cancer drug repository program ). BTW, at least in California, it is no longer flatly illegal for a pharmacy that's dispensed an RX to take it back. The pharmacy, at it's discretion, can take back an RX but isn't required to do so. B

Before you reveal your identity to any of these PAPs I'd urge you to review your income, assets and available medical coverage. Then, review the eligibility requirements for the relevant pharmaceutical companies. Some companies have very generous eligibility requirements but some companies want extensive personal financial info and have strict limitations. Most, if not all, will want a copy of your most recent Fed tax return. Also, some companies are starting to charge a mandatory co-pay on participating drugs. B

IMO, it's best to avoid on-line pharmacies that don't require a valid RX. This is particularly important when purchasing scheduled drugs. Also, stay out of Mexico. Major U.S. drug chains are safe as are most independent pharmacies. FDA oversight, unannounced state inspections and threat of civil / criminal liability keeps them honest. There are several on-line sites for drug identification. If you receive an unfamiliar drug, proprietary or generic, that is of concern you can always ask the pharmacist to show you the stock bottle and / or provide related information. A good example of a widely used generic line with a shady sounding name is Dr. Reddy's, but they're big and legit. http://www.drreddys.com/ JMO B

Grace, Most definitely and in this case you can color it GREEN !!!!!!! Carol

Randy , TY for the advice. My brother Bill is going through a difficult period right now but he is strong and will recover. Some of you that have been through this know that these tragedies can be made worse and complicated when unfortunate issues can surafce and more vulture$ than angel$ circle overhead. Carol ( Bill's sister )

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Linda >>> Re: tax hit on selling a house (spouses), Bill -- out in my parts, as I understand it so far (not an accountant either), your home gets its value re-set at date of death. That new valuation becomes the new value "basis" to the surviving spouse so that when the property is sold, the spouse's taxable gain is selling price minus date of death basis, not the original purchase price of the property. Linda : I spoke with both an estate atty and a tax planner. I think that I have cleared up the confusion re: this matter. For this stepped up valuation based on DOD to be recognized as the new cost basis the property must have been owned in a community property state. In these states, for tax and real property purposes, joint tenancy is basically " understood " to be considered the same as community property. And, the $250K tax exemption applies towards gains realized above this stepped up valuation. But, this issue still falls in a grey area of real estate law as it pertains to documentation and is, therefore, subject to interpretation(s) that may differ from yours with hefty tax and penalty consequences if it goes against you. So, make sure that you are on solid footing when dealing with this issue. Bill

Peggy >>> Nope! I don't know how to solve that problem, //////// Peggy ( and Linda ) : I vaguely recall that there is or was a one-time only $500K tax exempt option available on the sale of a primary residence ( must be age 55 or older I think ). Better outcome than the sole survivor tax dilemma. However, I don't know if it's available to sole survivors or couples only. Other than what's been discussed, the only other out that I can think of is to deplete the equity in the house down to ~ tax exempt level via a home loan or line of credit. I dislike having to resort to these options, esp. if the funds aren't needed and / or family members get involved. May end up with a big, regrettable mess. Bill

////////////// Peggy : The one big downside to joint tenancy of the house is the huge income tax bite once you become the sole survivor and sell. Other than selling a house AND rolling the proceeds over into another primary residence, I don't know of any way to escape this tax bite. And, if you are a sole survivor with a house in a hot real estate market like SO CA, with the mortgage paid off, the tax bite on the house sale is HUGE as the capital gains dwarfs the allowable tax free amount ! Any SIMPLE suggestions as to how to solve this problem other than buying more real estate ? Thanks. Bill

I should add that the caregiver and / or patient must be a well-informed strong advocate. Unfortunately, being well informed about your own disease has become essential to good care and safety. AND, IMO, if you know your stuff you can command some degree of respect from the medical staff AND there is less tendency for these people to passify you with a smokescreen. I can still remember hearing a woman yell at her husband to settle down as he was scaring the doctors with his comments that suggested litigation was on his mind. His response to her was, ' Exactly my intent. How better to get and keep their attention '. I see many posts on the LCSC board that clearly demonstrate that some people have thoroughly investigated all aspects of their disease and probably know more about it than the med onc or practitioner. I've had that happen to me. It's frustrating and very unsettling for me when this occurs. I don't want to discover that I know more about a given topic than the physician who's got my wife's life in his hands. Then the delicate matter of clarifying or correcting the error w/o angering the doc and shattering his ego. One of my wife's treating physicians routinely misspoke or errored and I had to point out these mistakes to him on a regular basis. He handled it this way. The incident in question simply vanished from the discussion and we resumed the discussion on the corrected path as if the snafu never occurred. This included prescription errors. Very strange to go thru this silly routine with a straight face but it worked for him so my wife and I played along. And, once somebody screws up it's hard not to watch over their shoulder from then on. Quality of care, continuity of care, etc. may be better in a more clinical cancer-oriented / research setting. I can only speak about experience, both professionally and personally, with private practice physicians and general hospitals and nursing homes with no particular emphasis in oncology. Bill

Thank you for recognizing me as a strong advocate for my wife. To know this helps ease the pain of losing her. It was time well spent. Every time that my wife Etsuko got down on herself for causing this catastrophic mess I was quick to remind her that the seemingly endless collateral damage created by the behavior of various medical and non-medical participants ( incl. family, neighbors, friends, etc. ~ yes Peggy, no ham sandwich here either ) was the bigger problem, out of her control, and that these issues can't and shouldn't be laid on her shoulders. For the last two years of my wife's life I spent entirely too much time having to educate, debate and battle healthcare providers ( HCPs ) and insurance issues. There are a few exceptions, but for the most part my wife was treated by a ( fragmented ) group of HCPs and institutions that knew little more than the bare basics about lung cancer and cancer generally. I had countless debates with doctors and a few nurses over drugs and related tx that they had little or no knowledge of beyond what they could extract from the manufacturer's professional literature ( LOL ! ). Far too often these practitioners would be quick to blame the cancer for most any health or tx issue that would arrise. For instance, my wife passed away with a lingering question about a right lung " mass ". Initially assumed to be a cancerous mass, and handed off to others as such, but not so according to a P/M biopsy. Peggy and I, and as I recall Sue, posted on this subject a couple of months ago so I won't go over it again. IMO, it's counter-productive and it's indicative of poor quality care for treating physicians to use the cancer as an all-purpose scapegoat to explain away issues instead of digging deeper for the real root cause. I dealt with only one doctor ( rad onc ) that spared me the smoke blowing and wasn't afraid to answer my question(s) with a simple " I DON'T KNOW " if he didn't know. In my wife's case there was alot of guessing, speculating and smoke blowing mainly, IMO, in an attempt to protect those fragile egos. Much to their dismay, I would call them on it and it made me a very unpopular caregiver / advocate. Mainly because my quest for answers, and not accepting smoke, forced many HCPs into revealing just how little they actually know about lung cancer. My questions were asked in an honest effort to help with my wife's battle with cancer. Not designed to reveal these individuals as know-nothing idiots. But, most of the time the HCP ended up looking more like just that. Lastly, medical staff ( including insurance ) attitude about late stage cancer patients and tx needs to change. This is esp. important for lung cancer patients as a majority aren't dx'd till late stage. Too much attention and commentary directed at warehousing and questioning tx and care decisions. Basically, a throw-away $ mentality about late stage cancer patients. I had a very revealing and candid conversation with a nursing home rep. who was attempting to secure approval for an extention to Etsuko's last nursing home stay. The conversation quickly turned to money and, despite Etsuko's very poor condition, no further extention was approved. When I explained that this decision made no sense financially as Etsuko would promptly end up hospitalized at much greater expense the rep. agreed, smiled and said this is typical bureaucratic thinking. And, this outcome is precisely what happened. THE BEST SINGLE PIECE OF ADVICE THAT I CAN GIVE CAREGIVERS AND PATIENTS IS TO BE A STRONG ADVOCATE. THE SQUEEKY WHEEL GETS THE GREASE. IT'S NOT A POPULARITY CONTEST SO DIVORCE THAT CONCERN FROM YOUR THINKING. THIS IS A VICIOUS BATTLE AGAINST A DISEASE FROM HELL. MAYBE A SOFTER PERSONALITY CAN GET EQUIVALENT RESULTS AS I DID WITHOUT BRUISING SO MANY EGOS. BUT, YOU MUST BE ASSERTIVE AND PERSISTENT AND, IF NECESSARY, READY TO GO TO THE MAT. IF YOU COME ACROSS WIMPY AND EASILY INTIMIDATED YOU'LL END UP BEING MINIMIZED AND TREATED AS A DOORMAT TO THE PATIENT'S DETRIMENT. GOOD LUCK BILL

thanx to every body for the advice. you are right. we are all in the same boat when it comes too preserving cell phone messages. all saved messages are dumped at sum point depending on the company policy. we are with sprint. some body that I know mentioned a transfer to cd but it sounds like a long shot and he didnt even talk like he understood how he would go about doing it. I tried a transfer to a casette recorder and her voice hardly picks up. quality is so poor that not worth keeping rob

a question for any cell phone tek gurus out there. my fathers cell phone has a message from my mom on it. a short message asking to see him. dated a couple of days before she died. does any body know how that SAVED MESSAGE on his cell phone can be presaerved . if phone service for that phone is discontinued will the message be lost or can he keep the phone and be able to replay saved messages such as her message even if he no longer subscribes to that phone service thanx for any help rob

Thanks to all for the outpouring of kind words and condolences on the obituary board over my wife's passing. And, yes, Peggy and my wife, Etsuko, spoke by phone briefly a couple of times. Very kind of her to do so. It has been a very stressful 2 + years acting as Etsuko's caregiver /advocate but I have no regrets and would do it all over again. The last month of her life was very difficult for her both physically and emotionally. This was a pivotal point for her. For the first time since her diagnosis she admitted that she was losing the battle and that it was time for her and her supporters to let go. Again, thanks to all for the support and kindness. Bill

OCRegister.com Etsuko Culkin Culkin, Etsuko, 58, of Lake Forest, passed June 19, 2006. She was a homemaker. Survived by husband, William Culkin and son, Robert Culkin. Omega Society Published in the Orange County Register on 6/25/2006. posted here by Carol ( Bill's sister )

I heard my father and the plumonologist talking about this. my mothers body became a human furnace with the cancer consuming huge amount of energy. robbing the healthy part of her body of nutrition. up til about the last week of her life she had a good appetite. ate alot and recieved supppements and still lost about 25 pounds in a few weeks. every body was pushing food hi carb drinks and appetite boosters like megace and none of it could stop the weight decline and weakness rob