[Dad's condition is worsening]

I just got off the phone with my Mom and she was sobbing I feel horrible for her and for me also, of course. Dad is very depressed, she said. She said he told her that she is the only one with hope still. I feel awful to be hearing this. I know I should act more hopeful around my Dad but I am very realistic about this whole thing and maybe I give off the vibe that I have given up on my Dad.

I told my Mom I was worried about her because she has unrealistic expectations, but she said she does not-- she said "I'm no dummy, I know the reality, but I am trying to stay hopeful and positive for your Dad." She asked me to change my attitude a bit around him so he is not constantly reminded he is dying.

This is just awful . . . on top of dealing with the prospect of losing my Dad, I now feel horrible for making him feel this way. I feel like I have been so self-absorbed I haven't stopped to consider his feelings in this -- as the one with the terminal illness. It must be so hard . . . I can't imagine.

Anyway, I am going over there tonight to see if I can spend some quality time with Dad.

[Dad's condition is worsening]

Susan, thanks for the kinds words and thoughts. Ernie, thanks for sharing your story -- I will give it more time before I jump to any conclusions. I just don't want to get my hopes up too high in the face of no evidence that it is working (at least no relief of the bad feelings my Dad has).

[Dad's condition is worsening]

Well, it seems that tarceva is not working after all. Dad is judt getting thinner and thinner, no rash has appeared, and he said he feels worse and worse every day. Eating is just getting very hard for him. I had my hopes up for tarvceva to work but it was not to be. I know there are other going through the same thing as I am right now on the board and I feel a certain kinship with them now. I am so very sorry for us all.

[Dad's condition is worsening]

Thanks, Dawn! Good to know that it may take a week or so to get the rash. Not that I *want* my Dad to have a nasty rash, but I have heard that it is a sign it is working. I have also heard that a rash is almost inevitable. Who knows

At this point in time, every day that I get to have my Dad in my life is a gift.

[Dad's condition is worsening]

First, thanks to all of you for your kind words and concern. I visited my Dad on Friday night and Sunday afternoon. He started the tarceva on Thursday morning. By Friday night he was eating fruit (something he has not done in many months), sitting up with us and talking. By Sunday afternoon, he was eating more fruit, had a slice of pizza and an ensure, and was chatty and joking. This is quite a change! I don't want to jinx anything (as if that was possible), but maybe the tarceva is working? My Mom said she has noticed a difference in his coloring and that he feels hot to the touch, like he has a slight fever (but there is no actual fever). Anyway, at the least, I am happy he feels better. He does not admit he feels better, he only says, I feel ok, which is what he has been saying the whole time, whether he has been good or bad. That's my Dad! If nothing else, if mood is an indicator, he is in a better mood!

No matter how long or short the tarceva at least appears to be working, I will take it! But, I am very much hoping from the bottom of my heart that this is the mircle drug that keeps him going for a long time.

By the way, no rash yet! Is this common or do most people get the rash right away? He has only been on it 4 days or so so it's hard to tell. Thanks.

--Yvette

[Dad's In ICU: UPDATE-5/7/07]

I am very sorry that you are going through this -- I have been on the rollercoasrer and it is so hard because your emotions are changing constantly. I hope with all my heart your Dad pulls through!

[Dad's condition is worsening]

Well, I went to the onc appointment yesterday with my parents and he gave us the bad news (which we already knew). He gave my Dad the tarceva (100mg) along with an antibiotic in case he gets the rash. We will see what happens. He said that chemo would be too rough on my Dad and he recommended against it. We agree because my Dad is soooo weak. He said the tarceva is the last treatment option at the moment. Apparently, my Dad has just enough liver to function, but that is it. The cancer has taken over most of the liver, and this generally causes one to not feel good. Thankfully, my Dad is not in any major pain -- he just has some back pain but it's mild. His appetite is really bad though --he barely eats soup and water.

But, despite all of this he is still smiling and making jokes. This just amazes me! When I have a cold, I am so grumpy, but he has cancer and he still manages to be in a good mood. Maybe it's a front, but I don't think so knowing my Dad. I hugged him a lot yesterday and told him I loved him. I also said to him at one point "you were the best Dad in the world." His reply to me was "well. I'm still here." Meaning, of course, don't count me out just yet.

My mom is so hopeful about the tarceva--she says she is sure it will work. My dad keeps trying to tell her not to get her hopes up too high. I was concerned about my mom's optimism, but soon realized it is optimism tempered with realism. She is a very strong woman and I admire her greatly.

I still almost can't believe this is happening. It's not over yet but I feel as if it is Last night I had visions about my dad when I was a child, teaching me to swim and helping me with my homework . . . I can't get his face out of my mind. My head is spinning with constant thoughts of what will happen to him? Is he scared? Is he sad? Does he have any regrets? It's so bizarre to know someone who knows they very well may be dying soon . . . I have never had this experience, luckily.

On top of all this, my husband and I are trying to get pregnant with our first child. We started trying a week ago. I know it's too soon to stress about it, but I very much want to have a child and I don't know if I should put it on hold. There is so much going on and stress really impedes women from getting pregnant in general.

Okay, time to stop rambling, Thanks for listening.

Love,

Yvette

[Dad's condition is worsening]

Dawn:

At the onc appointment I will be attending today with my parents, I want to push for tarceva as the last hope. I really don't understand why it was not given sooner -- I kept pushing it at the appointments but the onc kept saying that he wanted to wait. Well, he waited too long. I am really frustrated at this, but I know where the frustration is coming from. Hopefully the onc is not resistent to tarceva this time . . . we will see.

Thanks everyone for their kind words.

[Dad's condition is worsening]

Well friends, it is with a very sad and regretful heart that I post this. My Dad's liver mets have grown quite a bit and his lung tumors have grown. I just spoke with the doctor over the phone and he said 3-6 months at the most. I am not one to pay much attention to numbers like this, but I can see with my own eyes that my Dad is in very bad shape.

This is so surreal. The odd thing is I feel a mixture between relieved and anxious. I have not cried. I am sort of in shock, but at the same time I saw this coming. The thing is, only two months ago, the doctor said the tumor had shrunk and he was doing so well. In a matter of two months, there has been very dramatic growth. I guess that is typical of adenocarcinoma, the doc said--very fast growing cancer.

My number one concern now is: 1) my Mom--she is in such denial; 2) being able to do my job--I am an attorney at a high stress job at a big firm and my job requires mental concentration, which I am lacking right now; 3) my Dad's comfort.

I just don't know . . . that's all I can say

[So many issues!]

My Dad was just taken to the hospital because he was having extereme trouble swallowing. They said that the tumor is pressing on his esophagus and they are going to put a stent in today (hopefully). Maybe your husban's issues have to do with the esophagus. My Dad also has bad acid reflux and they are hoping this will resolve that issue as well. If your husband's lymph nodes are involved, maybe the tumor there is pressing on the esophagus.

Hope you can figure this out and resolve it. Sorry you are going through this--I think we can all relate to "being sick of being sick."

[stent in esophagus?]

Hi all:

Just when I felt like things had calmed down for a while, my Mom just called me at work and said that she took my Dad to the ER because he was having trouble swallowing. My Dad had been complaining of trouble swallowing since before he was diagnosed and we kept mentioning this to the oncologist but he kept dismissing it or saying that it was a secondary concern that could be dealt with after chemo. The reason they went to the ER now, I guess, is because it has gotten a lot worse since Friday and my Mom decided that enough was enough and something had to be done about it. Since eating is so important, I agree that relieving the constriction will help (will make my Dad be able to eat properly).

Well, at the ER, they took an X-Ray and CT Scan and I guess in their infinite wisdom decided that the tumor is pressing on the esophagus and that this has caused the constriction. They want to put a stent in. It seems like it's a minor procedure with little risk, so I am not super-worried. It's just one more thing to deal with, and with my stress at work, it is to the point where I am just having a hard time dealing with this now

Why did they not catch this sooner??? I mean, my poor Dad has been telling the primary docs and the oncologists about his trouble swallowing for MONTHS now and they have done nothing up till now. Arrgh!! Damn Kaiser. I hate Kaiser!!

Oh well, off to the hospital. They are keeping him overnight and I guess they have scheduled the procedure for tomorrow. *sigh*

Anyone else had this done or had swallowing issues?

--Yvette

[Dad continues to improve]

Thanks everyone! And Katie, your words meant a lot to me . . .

One more thing I wanted to add: The onc said that it is possible that the lung "tumor" that is showing up on the CAT scan is just scarring, but that he cannot tell. I asked him if CAT scans pick up metabolic activity and he said no, that would be seen with a PET scan. I asked why not do a PET then? He basically laughed as if to say: "what's the difference, he's doomed." What he actually said was that PET scans are only done pre-operation and to initally check for mets. I found this whole conversation pretty disturbing for a few reasons: 1) my Dad never had a PET to begin with so now I am questioning whether they know for sure he has liver mets (if no metabolic activity shows on a CAT, how do they know his liver spots are cancer)? 2) why not do a PET so that if it is just scarring showing up you can tell the patient "there is no more active cancer in the lungs?"

I want to add that we did get a second opinion from UCLA and they confirmed NSCLC but they never rescanned, all they did was restest the tumor, which wasn't even biopsied (they tested cells gathered from a "wash" procedure). So, maybe a third opinion is in order?? When I suggested this to my Mom, she said, no, she was done getting "opinions" that noone could do anything for my Dad.

The more I think about the oncologists' comments the more I get angry. I think it's partly because we are dealing with Kaiser and they are soooo cheap that they want to do the absolute minimum amount of tests. It seems that they almost want the patient to die so they don't have to keep paying for the treatments. Anyway, just venting.

Anyone have thoughts on the PET/CT Scan questions??

One more questions (sorry for all the rambling): Kaiser did an MRI in September and all was clear. I asked the ONC if we need to do another one soon, even in the absence of symptoms and he said no, only if there are symptoms. Is this normally done? The old ONC (he was too doom-and-gloom so we changed him) said we should redo the MRI in three months (in December), so it makes me wonder.

Should my Dad also get a bone scan even though he has no bone pain? Is it possible to have bone mets with no bone pain? Aaargh! I am going to drive myself crazy with these questions!!

[Joels Ct tomorrow/updated 3/8/07]

Yay! That's just amazingly wonderful and uplifting!! I have been following your story for months (every since I found this site) and I am so glad you guys had this result. Fantastic!

[scan results]

Great news!! Gives us all a lot of hope!

[Hi everyone--long overdue introduction]

Thanks everyone for the kind words. By the way, the latest scans were good!! I posted in the "Good News" forum if anyone is interested in details.

[I feel like lying]

I can relate on some level. My Dad was only diagnosed in July of '06, but he is doing very well right now, *knock on wood*! The most remarkable is that there are virtually no chemo side effects for my Dad other than hair loss and very mild neuropathy. It is very hard to understand why some do well for so long and others decline so rapidly. Just goes to show statistics are not all they are cracked up to be and how different everyone's bodies are.

[Dad continues to improve]

We went to the ONC appointment Friday and his words were "Another good scan!" My Dad's lung tumor and liver mets have improved (shrank)!!! When I asked what was next, though, the doctor said nothing, that he will rescan in one month and expects to see further improvement. No maintenance chemo, no tarceva, etc. He seemed really oppossed to tarceva, which I found odd. I also found it odd that he said there was no reason to believe Tarceva would work on my Dad. Huh?? I mentioned the never-smoker aspect and he said something like, "well that's true" and said we may try Tarceva down the road. What I don't get is why is he wanting to wait till the cancer grows before he goes to Tarceva> Why can't we have it now as maintenance?

Also, I hate hate hate that when he saw how happy we were after he told us the results, he said: "now, remember, this is uncurable and it will progress; we may have bought you some time with chemo, but that is all." What a jerk! I asked my Dad about it after the appointment and he said he pays very little attention to him when he says stuff like that. That only God knows what will happen. I'm glad my Dad's attitude is in the right place. Anyway, thanks for your well wishes and prayers everyone! We can breathe, for now at least.

[Hi everyone--long overdue introduction]

Thanks all for your responses and expressions of support. It is nice to have a place to vent about issues I know you all can understand.

Ernie: No worries about the delay in responding to my email--it was mostly just to thank you for your help during my start of this ordeal.

NED: My Dad's cancer type was not specified. It is NSCLC but beyond that, the doctor's never told us if it is squamous, BAC, or anything else. From what I have read about BAC, it is probably not BAC since this is a slow spreading cancer that does not usually go to distant organs. I think the reason they never told us the subtype is they did not have enough of a sample from the biopsy. The reason I think this is the case is that we wanted to enter a Tarceva clinical trial and as a prerequisite, you had to test positive for the EGFR gene and my Dad was unable to qualify because they said they did not have enough of a tissue sample to make that determination.

Some further details regarding my Dad's progress so far: he is convinced he is fine and that the cancer has stopped growing; he takes a TON of supplements ranging from a liquid multivitamins (3x a day), liquid flax seed oil (3x a day), fish oil (3x/day), a mushroom supplement (blend of a variety of mushrooms), calcium/magnesium, glucosamine/condroitin, powdered vitamin C drinks (3000mg vitamin C a day), milkthistle (when he remembers ), a variety of teas (melatonin, green tea, pomegranate tea, burdock root, etc.). He also eats 2-3 cloves of garlic a day mixed with yogurt, and fresh ginger with his tea. His weight when he had pneumonia in the hospital in November was 109 (he is 5'4") and now is up to 127!! He sold his accounting business after the diagnosis and now spends his days wlaking around our town, gardening, painting (water color), and doing Qi Gong (ancient Chinese exerecise similar to Tai Chi). One more thing, he takes an herbal concoction three times a day after meals (we are not sure what is in it), presecribed by a traditional Chinese medicine practitioner/accupuncturist.

I wanted to post this info in case it helps anyone. As a family, we have a great amount of faith in complementary healing systems along with modern medicine. I am convinved that my Dad feels so well now and felt so well during Chemo, as a result of these complementary additions to my Dad's daily regime.

Best to you all,

Yvette.

P.S. I will post the results of the meeting with the ONC tomorrow. Please pray we have great results!

[Hi everyone--long overdue introduction]

Hello all:

I joined many months ago but I haven't posted until now, for some reason. I have been reading your posts for months now and I feel as if I know so many of you so well! I almost feel like I have been evesdropping on you all for months

Well, the reason I joined is, as you can see from my profile, my Dad has stage iv lung cancer. To say the least, what a total shock--never smoker, health nut, did yoga--the last person you would think would get cancer. We think it was environmental/chemical because he was a shoemaker/shoe repairer for many years. It has been such a heartwrenching journey so far, and it is certainly not over yet, I know. My family is so heartbroken. I am an only child and have always been a daddy's little girl. I am just glad my Dad got to walk me down the aisle this past summer.

I can't imagine life without my Dad. I pray for you all daily. We have had some good news but we have a meeting with the ONC on Friday following scans after the last chemo treatment (ended Feb. 9) and are praying for even more good news (maybe liver improvement)??

So, anyway, I am officially introducing myself--hi all! You have already all helped me so much! I especially want to thank Ernie for reaching out to me in the begining (I responded to his story) and giving me so much hope. Ernie, you rock, and by the way, I emailed you a while ago with an update on my Dad. THANK YOU ALL SO MUCH--WHAT A WONDERFUL SITE!