Day 13 Tarceva Update

[Bill]

An update as promised for you Tarceva / Iressa followers :

Mild scattered rash on chest and back. Skin on back also looks dry. Basically unchanged for the last several days. Face, esp. nose, cheeks and chin reddish and dry looking. This is a newer development. Overall rash issue is manageable with skin creams so far. A few bouts of diarrhea but not frequent and manageable so far with Lomotil and some pain meds. My wife's mobility has greatly improved. Walking, bending, sitting up, assuming various positions, etc. Hip pain is now minimal. She states that her breathing is normal. She appears to be breathing w/o any discomfort. Overall she feels good but still a bit weak and gets fatigued easily ( Tarceva ? ). Her PCP just RX'd Megace susp. Her appetite is already fairly good so we hope that she can now put on a few of those recently lost pounds. Here is the hard part in reporting progress to you. At least progress as it pertains to Tarceva. Her med onc, one radiologist and some of the others monitoring her condition refuse to give Tarceva any credit at this stage. I think that we have a few bruised egos in the medical crowd which is part of the problem. A little woman and her drug making fools of doom and gloom medical prognosticators that have written her off. I honestly don't know if Tarceva has helped to this point and, if so., how much. I wish I knew and as stated before I am open to any input on how to help sort this out. Today is day 13 on Tarceva. My wife had a chest x-ray yesterday. " Marked improvement " over previous hospital chest x-rays ( 3/3 & 3/4 ). But, as I just stated, no credit goes to Tarceva. My wife was in the midst of L-spine radiation when this latest medical crisis unfolded. Her med onc says that her suddenly diminished hip pain is probably due to that radiation, not the Tarceva. Yesterday's radiology report doesn't mention any lung nodules but concludes that marked improvement noted is " relatively unlikely " to be indicative of an improvement in her metastatic condition. My wife's med onc also says that the lung improvement is largely do to tx for a pneumonia but the hospital pulmonologist and the cytology report on the pleural fluid say the cause is likely malignancy. Go figure. So, as I laid out in my other post today, here we are up against the medical establishment that considered my wife's condition to be a lost cause and they seem equally unconvinced about Tarceva's effectiveness. They seem eager to poke holes in her improvement and are ready to say ' I told you so '. I have the chest x-rays with me. The lungs fields are significantly clearer on yesterday's chest x-ray ( as opposed to 3/3 & 3/4 ). I do see a larger spot in the upper left lung which would be the primary tumor and I do see 2 or 3 small spots elsewhere in the lungs which are probably nodules. But, other than a small amount of whitish " infiltrate " that's about it.

[tnmynatt]

Bill,

Time will tell. But, I personally believe when Tarceva works, it really works well. My husband has been doing some yardwork--unbelievable considering his physical condition before Tarceva. We will know for sure after his scans on March 25. Will keep you informed. BTW, Charlie has an acne-like rash on his face. He has had several bumps inside his nose that have been painful. He has dry skin on his back. But, all in all, it has been tolerable. Take care.

[stand4hope]

Hi Bill,

I read your other post today at work, but didn't have time to respond. I'll go back there in a minute.

First of all, what is "L spine"?

Second, I can see why it's difficult at this point to tell if Tarceva has helped, especially to the bones that were radiated. The radiation does do a remarkable job of eliminating that kind of pain, and, once the cancer is knocked for a loop with radiation, the bones begin to heal very quickly.

Now, this comment on the radiology report makes no sense to me whatsoever:

Yesterday's radiology report doesn't mention any lung nodules but concludes that marked improvement noted is " relatively unlikely " to be indicative of an improvement in her metastatic condition

What the heck is that all about? How the heck would he/she know or even comment about her metastatic condition when they were only looking at a lung scan report. (I assume the report was for a lung ct since you mentioned lung nodules, although I guess you didn't state that specifically)

Anyway, I guess I'm convinced the Tarceva is helping her, but that might be because that's what I want to believe. Sometimes if you believe something enough, it comes true.

All my best!

Love,

Peggy

[Bill]

Hi Bill,

I read your other post today at work, but didn't have time to respond. I'll go back there in a minute.

First of all, what is "L spine"?

Second, I can see why it's difficult at this point to tell if Tarceva has helped, especially to the bones that were radiated. The radiation does do a remarkable job of eliminating that kind of pain, and, once the cancer is knocked for a loop with radiation, the bones begin to heal very quickly.

Now, this comment on the radiology report makes no sense to me whatsoever:

Yesterday's radiology report doesn't mention any lung nodules but concludes that marked improvement noted is " relatively unlikely " to be indicative of an improvement in her metastatic condition

What the heck is that all about? How the heck would he/she know or even comment about her metastatic condition when they were only looking at a lung scan report. (I assume the report was for a lung ct since you mentioned lung nodules, although I guess you didn't state that specifically)

Anyway, I guess I'm convinced the Tarceva is helping her, but that might be because that's what I want to believe. Sometimes if you believe something enough, it comes true.

All my best!

Love,

Peggy

Your question is precisely what I questioned. First, every rad report preceeding yesterday's had talked about lung nodules ad nauseum. Suddenly, yesterday's rad report makes no mention of lung nodules. And, why did the radiologist feel it necessary to add that RE: my wife's marked lung improvement : " it is relatively unlikely this represents improved metastatic disease " ? Another stretch that you didn't comment on. My wife's med onc was quick to opine that her improved lung condition was largely due to tx of a pneumonia ( with Levaquin ). Problem with that opinion is that the hospital's overwhelming opinion is that my wife's pleural effusion and resp. failure was " malignant ' in origin not pneumonia. The Levaquin was given as a prophylactic measure only. So, what's the deal here ? As I keep stating, why are these medical people trying so hard to pick apart this recovery ? BTW, re: the L-spine radiation and hip pain, even the rad onc doubted that L-spine radiation alone would end the pain. He expected that the pelvic cancer was equally the cause. Her neurosurgeon says that the pelvis is the entire cause of the hip pain, not the L-spine.

[Elaine]

Bill.

I am glad your wife is feeling better, and it sounds like a lot better!

I thought you posted a month or so ago that your wife had more than 200 lung nodules! I am wrong? Or was it a typo? 20? Well whatever the number, it sure sounds like she has many less now!

Doctors do not want to be wrong. I don't even think that many of them even consider that they MAY be wrong. The ironic thing is that of all professions, they are the most likely to BE wrong--many, many more times than any other. Think about it. And because medicine isn't all science, Drs are bound to be wrong, I realize that.

But the part that gets me is that too many of them act as if they couldn't possibly be wrong--and worse they act like the patient is pretty much always wrong--.

Of all the things that have happened to me, I have yet to hear a Dr. admit wrong or to even say "I'm sorry." Even to the point that when it is obcious that someone WAS wrong, current Doctors will always make an excuse for previous Doctors. Oh, it really burns me!

Don't get me st arted, lol.

I am glad your wife got the Tarceva. And for some reason someone seems to have misread your post because it wasn't ER Docs that were ignorant it was PCP and Oncs.

Oh well, my new Doctgor, the good one, is going on an exteneded sabbatical in a month, which means she probably will never return to medicine. So once again, I am in search of a new Doctor.

I can't believe I am again at the mercy of fate...

elaine

[TAnn]

Bill,

The dry skin and rash on your wife's face sounds just like what I had when I first started Tarceva. It was like my cheeks and nose were "sunburned". It felt exactly like a sunburn, in fact. After about 3 weeks it got much better and has not been an issue for me since.

Elaine is right, doctors DO NOT like to admit when they are wrong. And the truth is that you may never know if it was the Tarceva or just your wife's strong will to go on that was responsibile for her improvement. (I think a little of both) Regardless, she is getting better and that is the main goal. Less pain, more mobility, not too bad on the side effects, this all sounds like great news to me!!!

Let this be a lesson to those doctors. I promise you, they have taken note of it, even if they aren't admitting anything "out loud".

TAnn

[Bill]

As recently as my wife's 3/4/05 chest x-ray her lungs appeared obliterated. Mottled white ( " diffuse infiltrate " ) lung fields with numerous small superimposed white spots ( nodules ) of various sizes scattered throughout both lungs. Plus the primary tumor in the upper left lung. In my estimation 80% of her lung fields were obliterated white. She was admitted to ICU in resp. failure, CHF and compromised renal function. As of yesterday's chest x-ray, a majority of this damage has disappeared.

Yes, the problems that I speak of are associated with attitude that surfaced in the ICU. The low point for my wife was when she surprised everyone by successfully being weened off of the ventilator only to be told by a visibly irritated PCP ( the one that we subsequently fired ) that it didn't matter as she would continue to get sicker and die anyway. ( He's the one that announced the day before that my wife would never be able to be weened off of the ventilator and therefore never regain consciousness ).

Family and friends have a theory about her med onc's strange attitude towards Tarceva. Bottom line is that he didn't really make the decision to RX Tarceva. He was pressured big time by me, my family and at the end a whole host of healthcare professionals. He can hardly take credit for RXing Tarceva and any good outcome under such conditions. This would explain why he refuses to admit that Gemzar ( his choice ) failed and that Tarceva may be a smart move and in fact work. Others suspect that even if Tarceva undeniably works that the med onc will continue to poo-poo the results UNTIL he can find a window of opportunity to step in and claim that he made the call. He has already taken a small step in this regard by going from being opposed to RXing Tarceva to stating that RXing Tarceva has merit but was done too early. ( Too early ? HeII, my wife ended up in the ICU on a ventilator with resp., cardiac and renal failure and was expected to live only a few more days ! ) It was suggested to me that this med onc may find it easier to eventually take charge of, and get credit for, this Tarceva move if I stay clear of him. I will gladly obliged if it will help. I don't want to damage his ego any further.

[Bill]

Elaine states " Doctors do not want to be wrong. I don't even think that many of them even consider that they MAY be wrong. The ironic thing is that of all professions, they are the most likely to BE wrong--many, many more times than any other. Think about it. And because medicine isn't all science, Drs are bound to be wrong, I realize that.

But the part that gets me is that too many of them act as if they couldn't possibly be wrong--and worse they act like the patient is pretty much always wrong--.

Of all the things that have happened to me, I have yet to hear a Dr. admit wrong or to even say "I'm sorry." Even to the point that when it is obcious that someone WAS wrong, current Doctors will always make an excuse for previous Doctors. Oh, it really burns me!

TAnnstates : Elaine is right, doctors DO NOT like to admit when they are wrong ... Let this be a lesson to those doctors. I promise you, they have taken note of it, even if they aren't admitting anything "out loud".

//////////////////////////

This is a very serious issue. IMO it's not at all farfetched to state that there are people out there, including physicians sworn to heal the patient, that will see the patient suffer or worse IF that's what it takes to save face, be right or at least not admit to being wrong. The squirming and spinning and convoluted explanations that I've witnessed from a couple of these people is pathetic. And, much of the covering and related explanations make absolutely no sense. It's whatever you can grasp from thin air that appears to help support a loosing position. No continuity, no relevance, just whatever works to save face. As I previously reported, my wife's X-PCP was visibly irritated when he showed up in ICU and the nurse reported to him that the ventilator that he said would never be removed had been successsfully removed. And, how bout that Gemzar. Maybe great for others but absolutely worthless for my wife yet to this day her med onc continues to claim that Gemzar hasn't failed despite a mountain of dx tests and scans clearly showing a downward spiral in her condition leading up to this current life threatening respiratory crisis in ICU !

[karen335]

Bill,

Maybe you have posted your profession previously. If so,

I apologize for asking. I didn'r read it. From your descriptive

writing, it sounds as if you work in the medical field. My hubby works in

the nuclear medicine field, but in no way can be as articulate

in writing as you. This is a compliment. What an advocate you

are for your wife. I'm impressed. Glad to read she has im-

proved tremendously. May she be blessed with continued

healing...

Prayers,

Karen - So. California