yvetten

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."

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

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!!

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

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 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.

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.

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!

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!