Bill

I reluctantly mention this because it came from a patient, not her onc. But, a woman that I spoke with this week while in my wife's onc. med. grp waiting room was there for an appointment to have her chemo tx changed. She had been taking 1 tab Iressa daily but due to out of control diarrhea her onc had to stop tx. I asked her about a reduced dose and she said that her onc decided against that because in his opinion 1/2 tab Iressa would be sub-therapeutic. He'd rather switch to a different drug. Has anybody seen any clinical studies ( or personal experience ) that demonstrates the effectiveness of half-tab Iressa tx ?

Simple, well-stated and so true. Those individuals that attempt to ' reignite the fire ' are the ones that do the REAL damage to board relations.

////////////////// Yes. These co-pay and " incidental " charges can add up. The woman that I speak of was very upset about the $30 IV set charge. I'm sure that she is on a fixed income and that unexpected charge hurts. Three IV bags and there goes $90 ! We learned early on to carefully follow " inpatient " procedures for outpatient services. Before we learned the ropes my wife had a chest x-ray that wasn't handled correctly. Therefore, it wasn't covered and we got dinged for over $300 for the x-ray and reading.

This doesn't apply to my wife's insurance but today in the chemo room at the med onc's office a woman with private health insurance ( I don't know which co. or type ~ HMO, etc. ) was complaining to her OCN that her insurance company was ( or started ) charging her $30 per IV set for chemo tx. Not familiar with this. Anybody else getting charged for IV equipment and such things related to chemo ?

dadstimeon Posted: Mon Oct 11, 2004 10:10 am Post subject: -------------------------------------------------------------------------------- Hi Bill, I was told on platelets, they cannot be below 100,000. Not sure if that is just in my case or across the board. I had them drop twice @ the beginning (20,000 and 5000) but had transfusions to built them back up so I could continue on. Did not have any problems with white/red cells. Rich //////////////////// Rich : Thanks. What you describe is exactly what happened to my wife. Since then it's been a weekly evaluation of platelet count, hemoglobin and hematocrit. But, no definite rock bottom #s have ever been given. Her medical onc just switched her to an every other week chemo regimen ( Gemzar / carbo ) stating that this regimen may be easier on her blood. As of Saturday's CBC her platelet count and hematocrit are okay but her hemoglobin is slipping ( 11 ). She receives procrit but it hasn't helped much in the last couple of weeks.

A question for those of you that have had chemo suspended due to your CBC results. What measurement(s) AND reading(s) was the cause for your chemo being suspended ? Thanks much.

My wife had very little weight loss prior to DX. She quickly lost ~ 30 pounds AFTER DX ( ~ 137 to ~ 108 ) and she has regained 10 to 12 pounds in the last couple of months. She has been receiving chemo ( Gemzar / carbo ) since late June.

London Lad Posted: Fri Oct 01, 2004 8:35 am Post subject: Question on Zometa -------------------------------------------------------------------------------- My dad has just recieved his second round of Zometa to help with his bone mets. Both times he's received the treatment, two days after he's experienced acid in his stomach and then vomitting. Does anyone else here know if that is a fairly common side effect? Something interesting the physician told us about was that there has recently been published a peer review paper that has now demonstrated that Zometa is effective in lung cancer (previously use had been based on the effectiveness in other cancers such as breast). I've been unable to find the paper on the net yet but will keep trying. ////////////////// No such symptoms with my wife but she has always received the Zometa during chemo sessions so the antiemetic / antinausea med may be masking Zometa side effects. This coming Wed. she will receive Zometa alone for the first time. If she experiences any such side effects I will let you know. RE: Zometa effective against lung cancer that doesn't sound likely. BUT, if you find any clinical studies on this subject please post the info. That would be interesting.

karenl Posted: Tue Oct 05, 2004 5:16 pm Post subject: -------------------------------------------------------------------------------- Elaine My Mum had no symptoms whatsoever. Tumour picked up in annual chest x-ray; unfortunately it was missed in the previous x-ray, at which time she may have been a surgical candidate! We are very mad at the radiologist! Karen ////////////////// My wife has stage 4 NSCLC with mets everywhere ! She had no respiratory symptoms whatsoever before diagnosis. Since diagnosis she developed only two respiratory symptoms : blood-tinged sputum and involuntary ' gasping '. The blood-tinged sputum has stopped and the involuntary ' gasping ' occurs only ocassionally now. She has never complained of pain in her upper body. All of this while it looks like her lung cancer has WORSENED based on the CT scans ! So much for respiratory symptoms as a reliable indicator.

Has anybody ever been told anything by their oncologists regarding the accuracy of tumor measurements ? When I voiced concern to my wife's rad onc that the primary tumor in her left lung had grown from 2.0 cm. to ~ 2.5 cm. ( based on her last 2 chest CT scan reports ) he said not to place much importance on a 0.5 cm. change. He said that several factors can cause a tumor's measurement to vary from one scan to the next whether there's been any actual change in size or not. He mentioned such things as the view ( or slice ) that the radiologist looks at and measures as well positioning and stretching, etc. in the tumor area during the scan. BTW, he also said that it's not unusual for scans and / or radiologists to miss very small lung nodules.

Cheryl- Posted: Thu Sep 23, 2004 8:13 pm Post subject: I am angry and hurt- need guidance! -------------------------------------------------------------------------------- I am so upset right now that I don't know what to do! My boss asked to meet with me privately, ......... //////////////////// Cheryl : Best of luck to you in your battle with your boss. Please keep us posted. FWIW my wife and I have quickly learned that the bigger the catastrophy the better Murphy's Law works. My wife constantly reminds me that the emotional pain that she has been subjected to by some others has been worse than dealing with her diagnosis and treatment. The pounding seems relentless at times.

For those of you already taking Iressa, did you have any problems getting your medical insurance to cover the cost of the drug ? For instance, did your insurance company require that certain chemo drugs be tried ( and fail ) first before coverage would be approved ? BTW, did your med onc require that certain chemo drugs be tried first before trying Iressa ? Thanks much for any input on this topic.

///////////////// Thanks. IMO there is too much ( tumor ) spin and use of the word " stable " when these treating physicians evaluate my wife's cancer status. We want straight forward answers and progress reports which seem to be very difficult to get. I can see that a liability concern has surfaced also. This week for the first time my wife's rad onc admitted that her condition is very complex and evaluation of her spine is beyond his capability. Therefore, other than a read of her current films he didn't feel comfortable making any comments or comparisons about her progress or lack of. He tossed the ball ( or maybe hot potatoe ? ) to the neurosurgeon who reported back with that useful word " stable ".

Thanks for the kind words. I have no complaints about the surgery and radiation. The brain and spine improvement or stabilization continue to be the bright spots. I'm not particularly happy about the chemo. It doesn't look like the chemo has accomplished much. Overall the tumor destruction seems to be held at bay but nobody has told us that there has been any shrinkage of tumors outside of the brain and spine.

////////////////// I don't mind the question but I'm not familiar with the term so I can't answer. BTW, my wife has extensive metastases throughout her body. Some damage is old, some is new. BUT, if you had to point to something that makes her " Lucky " I'd say location of metastases UP TILL NOW. Without the spine surgery she would be paralyzed by now. But, other than that and chronic pain, she has escaped major health problems due to her cancer. I sympathize with those individuals that have tumors in critical / life threatening locations.

Elaine Posted: Fri Oct 01, 2004 2:57 pm Post subject: -------------------------------------------------------------------------------- Yes, Bill. I guess I didn't know she had WBR and was wondering what chemo was working on the brain. I had been wrongly thinking she had had brain mets all along and HAD NOT been treated for them at all. Well, at least they did treat them. elaine ////////////////// E : She had WBR and lower spine radiation in late May / early June. That's it. Since then 4 cycles of chemo completed ( Gemzar / carboplatin ). IMO the chemo hasn't done much. The rad onc calls her OVERALL condition " stable " which equates to improvement. His words not mine.

//////////////// If your question is directed to me the only tx that my wife has had to the brain is WBR. Only one of the tumors is dead. The others, not to be called tumors ( unless they start growing ), have shrunk to some degree. If you don't mind I will continue to refer to them as tumors. This from the " No Spin " zone !

Okay, here's the deal, or should I say spin, on my wife's brain tumors. The rad onc ( reluctantly ) stated that the med onc is technically correct. My wife has no brain tumors ! Why ? Because tumors that are currently shrinking or dying or dead ( " tombstones " ) are no longer considered tumors. And, this appears to be the case with my wife. What a relief ! ... Okay, I get it but I also think that we have some helpful spin at work here. A nice save.

EILEEN Posted: Fri Oct 01, 2004 11:39 am Post subject: -------------------------------------------------------------------------------- Bill my surgeon (who I still see for check-ups--he is an amazing, amazing person)---always insists on reading the pictures---a good thing too , because some of the ones I have read myself , they made it sound like I had hours to live-- they made some big mistakes--like "cannot compare scans, last one was taken with contrast" well it was not!!--- ////////////////// Ditto my wife's neurosurgeon. BTW, following my wife's neurosurgery and a stay in ICU she was transferred to the surgical floor where her DIABETIC roommate received her meals for two days. Only after my wife complained about the bland meals did the nursing staff discover their mistake. Last time I saw the roommate she was violently ill then disappeared.

//////////////// Yes, all of my wife's brain MRIs since DX have revealed brain mets. IMO the latest MRI scan report is poorly written and lacks detail. When I say that her current MRI scan appears to show slight improvement I'm basing that mainly on the report mentioning one less tumor. But, my confidence level in this isn't high. Today, hopefully, her rad onc will clear this up and give us the bottom line. He will read right off of the films and ignore the radiology reports for the most part. He must convince us that the med onc is doing a good job or we start looking for a new med onc. IMO your frustration and comments over the ( poor ) quality of medical care is right on. Since my wife's DX I've seen one blunder after another. And, not just with my wife's healthcare. I've seen some real humdingers involving other patients as well both at the clinic level and the hospital.

oncodoc Posted: Thu Sep 30, 2004 8:26 pm Post subject: -------------------------------------------------------------------------------- Bill, I will tell you that I have given gem/carbo in this way before. I've never seen it published but sometimes blood counts just won't tolerate sequential weeks. I agree with your oncologist that it is probably of similar efficacy but I can't tell you I have any proof of that. /////////////////// Glad to hear your favorable second opinion on every-other-week chemo since my wife is stuck with this regimen change unless she changes med oncologists. BTW, thanks to all for the input on this one.

oncodoc Posted: Thu Sep 30, 2004 8:27 pm Post subject: -------------------------------------------------------------------------------- That sounds like a seperate tumor, the frontal cortex is anterior to the parietal cortex. ////////////////// Thanks. Looks like Dr. Joe is right. A quick review of my wife's previous two brain MRI reports mentions a tumor in the " left ( superior ) frontal region ". My wife's med onc has obviously made a major gaffe with his " no brain tumors " comment. This was really off the wall. We don't know what he was thinking. Some kind of brain F### ? Assuming that this latest brain MRI radiology report didn't miss anything my wife currently has two brain tumors and a suspect area in the periventricular region of her brain plus the tumor on the inner surface of her skull. It looks like a slight improvement vs. the previous report. Her radiation oncologist and neurosurgeon will be reviewing a stack of her MRIs and CT scans tomorrow in an attempt to get a handle on her condition, esp. the brain, spine and lungs. Another nerve-racking day ! My wife wishes that Dr. Joe was local !

My wife's 2 week on - 2 week off chemo regimen has been split up into an every other week chemo regimen. I assume that this means week 1 Gemzar / carboplatin - week 2 off - week 3 Gemzar - week 4 off, etc. Is anybody familiar with an every other week chemo regimen ? The med onc claims that the therapeutic effect is the same and that it's easier on the blood.

oncodoc Posted: Wed Sep 29, 2004 9:20 pm Post subject: -------------------------------------------------------------------------------- Ummm.....1.2 cm enhancing tumor in frontal cortex and 1cm ring enhancing nodule in cerebellum would be 2 brain mets. Not sure how else he could be interpretting that scan. /////////////// Thanks. I'd appreciate one follow-up for clarification. Is the frontal cortex tumor that's described the tumor that's on the inner surface of the skull or is that a separate tumor in the brain ?

Here are the verbatim findings of my wife's brain MRI that the med onc was looking right at when he told us " No brain tumors, just that one outside of the brain ( on the inner surface of the skull ) that we already know about ". I'm admittedly a little rusty on my human anatomy so you tell me. Is he correct or is it time for us to start looking for another med onc ? : " There is bone destructive lesion in the left parietal calvarium. There is densely enhancing 1.2 cm. tumor in the left frontal cortex, a 1 cm. ring enhancing nodule in the right lateral cerebellar hemisphere. Associated vasogenic edema is minimal. There is mild ventriculomegaly and periventricular high intensity foci, which may be ischemic. Communicating hydrocephalus is less likely. " ( end )