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Big Test For TARCEVA


Bill

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Bottom line is that my wife has put on ~ 6.5 lbs. b/w Monday morning to this afternoon ( ~ 113 to ~ 119.5 ). I briefed you on the relevant details in my previous post so I won't repeat that info. BUT, as I posted, her pleural effusion ( drained on 2/28 ) was malignant ( per the cytology report ). No evidence of pneumonia. The Levaquin was given purely as a prophylactic measure pending the cytology results. Her latest chest x-ray ( 3/14 afternoon ) showed only a slight accumulation of fluid in her left lung base. She's been taking Tarceva since 3/3/05. IMO if the Tarceva is WORKING there should be little or no recurrence of this malignant pleural effusion. Her pulmonologist agrees. At this rate the real story behind this sudden weight gain should be known within a couple of days and good or bad I will let you know the outcome. BTW, other than this sudden weight gain issue, my wife has maintained all of the improvement that I reported in my previous updates. And, for the first time since her ca dx her hip pain has essentially disappeared.

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Bill,

Very glad to hear that Mrs. Bill has "lost" some pain - hip pain can't be fun. I hope her weight gain is her body saying something like "FOOD! Prepare to be assimulated, resistance is futile" (and then again, maybe I got a bit gung ho in wishing her some needed body fat from my unwanted body fat...)

Maybe it's not a cure in the medical sense, but dammitall, it seems to be working, and I'm sure you (the both of you) can handle that! May the sun continue to shine upon you and may you serve all the naysayers crow!

Becky

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Bill,

It's interesting that you said if the Tarceva is working, the malignant pleural effusion will not recur. I'll have to ask my doc about that. I know mine continued while I was on chemo. The only way I was able to get it under control was to have a Denver Catheter installed and drained it until there was no fluid left. Then the lung expanded to fill the "gap", causing scarring which will not allow the effusion to re-build. That is our hope anyway.

I'm going to ask my dr. about the effects of Tarceva on the pleural effusion. Glad to hear of the wonderful improvements your wife is making. Snowflake is calling her "Mrs. Bill", would you consider letting us know her name? Tell her we are all pulling for her. You are a wonderful support to her.

TAnn

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A combination of some respiratory complaints, slight fever, dyspepsia and that 7 pound weight gain convinced me to take my wife to the ER last night. I want to secure copies of her chest x-rays, rad report and some related dx testing results before reporting anything final but to make a long story short they couldn't find anything wrong. The ER doc states that last night's chest x-ray is unchanged from her 3/14 chest x-ray. An extensive battery of blood tests all came back " normal ". No solid explanation for the weight gain. Just speculation that things like initial fluid replenishment, eating better, diarrhea stopping and water retention from Megace played a role. ( BTW, her weight peaked at 120 lbs. last night and dropped to 117.5 lbs. this morning. ) Her respiratory discomfort is being blamed on anxiety and maybe some opiate w/d symptoms AND, this is the part that hurts, an idiosyncratic flare up of her lung cancer. I say that this hurts because it's not substantiated, just speculation and it's speculation that the naysayers will use to continue doubting her progress. As previously stated, NOBODY and I mean NOBODY in our medical circle has stepped forward and stated that my wife can recover from this. We have a select few healthcare providers that are skeptical BUT are at least supportive of continued ( cancer ) treatment if for no other reason than that's my wife's desire. The rest have thrown in the towel.

To TAnn re: my malignant pleural effusion comment. The docs were speaking in terms of NED and no recurrence of a malignant pleural effusion. I gather that anything short of NED and these effusions can return to some degree. In my wife's case she will have to have a NED response with no effusion recurrence just to quiet the naysayers ! If TAnn or anybody familiar with malignant pleural effusions has any input on recurrence rates including how rapidly they return and reabsorption ( transient nature ) PLEASE share. This remains a big question mark in my wife's case. Her pleural effusion was drained 2/28. As of her last two chest x-rays ( 3/14 & 3/17 ) she has a small amount of fluid reaccumulated in the base of her left lung. I guess that nothing but time and stable or improved scans will convince the naysayers that her current improvement is legit. No believers in the medical crowd right now. A very lonely feeling.

Thank you very much to all.

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Hey Bill,

Glad to hear things are going better for your wife, especially to hear that the pain is diminishing. As to

NOBODY and I mean NOBODY in our medical circle has stepped forward and stated that my wife can recover from this.

I often repeat that I searched for over three months trying to find ANYONE ( stageIV) who had gone longer than the stats say. Obviously there are many around, they are just not promoted by the mainstream because the bottom line is the medical community doesn’t know why we are here. Individually many of us have a guess as to why we are. I certainly appreciate all the information you are providing but don’t let those who know so little, suck that fighting energy from you and your wife.

Bo

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Don't feel lonely Bill - there are many people who are doing better than expected, and the doctors aren't interested in why. My Mum's practitioners always exclaim surprise at how well she looks and how apparently healthy she is, but not one of them is interested in looking at the things that she is doing that fall outside of their own field. I am thrilled to hear about your wife's progress. Don't let the doctors bring you down. When Mum was initially diagnosed, her PCP basically recommended a no-treatment approach. I believe he told her she might have '6 months without treatment, you could maybe extend that to 12 months with treatment, but then you need to consider quality of life issues'. Well that was 19 months ago, and she is still yet to experience any 'quality of life issues'!!! All of her doctors are very pleased that she is doing so well, but not one of them is interested in WHY!! I fear that until doctors are willing to consider the possibility that their particular treatment is not the ONLY way, the statistical average for survival is not going to change a great deal.

I hope your wife continues to prove the doctors wrong. She is an inspiration to us all.

Thanks for sharing your story.

Karen

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