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trishnmiller

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Posts posted by trishnmiller

    Update on Jeffrey

    in CAREGIVER RESOURCE CENTER

    Posted

    Hi All, I always feel warm when I get back on this site..I know you are all out there supporting one another! Jeffrey had a pet scan today and will have a brain MRI tomorrow. This is the only medical procedure he has had in months. A doctor stopped him at the hospital and said that he had heard about his case through the grapevine and just wanted to say, "God bless you". He gives hope to stage IVs everywhere. I hope his scans remain good. I feel positive because he's still working and participating in "normal" activities. Sometimes, because the doctors and appointments have gone away for now I forget about the "beast" but I know it's still out there...lurkng. We strive to keep it at bay and I pray for us all.

    Trish

    Question

    in CAREGIVER RESOURCE CENTER

    Posted

    I may err a bit on the "radical" side but never forget that you are the customer. Ask your questions whenever and about whatever you want. All of us must advocate for ourselves and our loved ones. If we don't we are just another case number.

    Trish

    Lucie Update 04/21

    in NSCLC GROUP

    Posted

    Dear Don, I'm so sorry that the Alimta wasn't for Lucie but that's pretty much the way it goes with these new targeted therapies. Maybe the next one will be the ticket. I remember when Jeffrey was on the Tarceva and he got no response..we were so disappointed but then the Alimta worked like a charm. I tell ya, it's a mystery.

    I think of you both everyday and continue to keep you in my prayers.

    Trish

    panicked rant (some bad words/strictly my opinion)

    in GENERAL

    Posted

    It's sheer arrogance/ignorance and I am well pleased that you took that jerk to task for his idiocy. I know I now am more educated in the specifics of my husband's disease than many of the doctors we've seen. In the ER one time the attending physician asked me what kind of medical professional I was and I told her that my degree was a very specific specialty: My husband's life. I got my education in the school of hard knocks..as did we all.

    Well done,

    Trish

    Sorry...this is really long ...

    in GENERAL

    Posted

    I can only share the experience I have had with my husband and that is that my GUT FEELING has always been right on the money. We are the consumers and when we don't get what we want we go elsewhere. I can't tell you how many times I have said to a doctor, "that is not an acceptable answer". If you want the newly discovered nodules removed or biopsied I suggest that you take your scans directly to a lung surgeon (or whomever would actually perform the radiation or surgery) and have them evaluated. I have found that the only way to get an acceptable answer is to go to the source. Heck, if you couldn't find the dress you wanted at Macys you wouldn't hesitate to go to Bloomingdales. My advice is to hurry-up and go shopping!

    Prayers,

    Trish

    Cyberknife??

    in GENERAL

    Posted

    Dear Joan, I sent you a private message but I wanted to respond here as well. The medical community is just beginning to use Cyberknife, Gamma Knife,and IMRT stereotactic radiation in the cure and control of later the stages of NSCLC. In Japan, articles have appeared about Stage IV patients receiving this treatment for "palative care" and then living past the magic 5 year survivor marker...still living as a matter of fact. They don't yet know why it is making such a difference. I really believe it will be up to all us to change the approach to late stage lung cancer. In honor of the Olympics I say "Go for the Gold" (cure).

    Optimism is what it is all about.

    Trish

    Ed stopped chemo

    in CAREGIVER RESOURCE CENTER

    Posted

    Dear Adela, Oh man what I would give to have just ten minutes alone with that stepson! Every caregiver has to get through the "advice" from friends, relatives and buttinskis..even the ones that mean well can make you crazy. We all have our stories but yours is one of the meanest I've heard. You are doing a wonderful job because you are there everyday and you genuinely love Ed. That is all you need to know and that son of a gun needs to step up to the plate and help or put a sock in it! There, I feel better. Have a glorious, memorable trip.

    Trish

    About WBR

    in CAREGIVER RESOURCE CENTER

    Posted

    I ditto everything Karen said. The only way to get individualized care is to be an adament advocate. My husband (stage IV nsclc)had 13 brain tumors and they were all cleared out with Gamma Knife over a year ago. We then turned to other forms of stereotactic radiation (IMRT and cyberknife) for the liver and lung tumors. Today he is cancer free and working a 40 hour week. Doctors do not believe me but his case is fully documented.

    Trish

    "Rattled the chains" and the insurance problem wen

    in CAREGIVER RESOURCE CENTER

    Posted

    The cyberknife is now rescheduled for March 10, 13, and 14. There really isn't any worry as it is not invasive..planting the fiducials in the tumor and the needle biopsy-that was invasive and caused all of the subsequent problems. He is already NED and the tumor shows only scar tissue but since the insurance WILL pay for it we're going to blast it anyway. Can't wait to rest for awhile..jeesh!

    Trish

    Lucie Update 02/19

    in NSCLC GROUP

    Posted

    Oh the tiredness! Yes, that was the primary problem with Jeffrey. They managed to head off the nausea with whatver they gave him along with the Alimta. I wish I knew what it was. Tell Luci she will have to back out of the scheduled marathons for now, LOL. Love to you both.

    Trish

    "Rattled the chains" and the insurance problem wen

    in CAREGIVER RESOURCE CENTER

    Posted

    Hi all, just an update to let you all know that I won't be paying any 3000 dollar fee to the cyberknife doctor. I know he had the wrong chart when he called us but he has never admitted to his mistake. My primary was outraged and thought he was trying to extort money. I really think it was a screw-up but he would have had more of my sympathy if he had just come forward with the truth. Anyway, Jeffrey is going back to work tomorrow and will be scanned again next Monday to see if his lung is healed enough for the cyberknife treatment. Thanks again for your continual support. I learn from all of you. Just another reminder to watch your back all of the time!

    Trish

    Jeffrey back from the 2nd hospitalization

    in CAREGIVER RESOURCE CENTER

    Posted

    Holy Moley what a couple of weeks. Jeffrey got out of the hospital on Feb 10 and everything was groovy until the 16th when he went for a CT scan of his lung that needed to be done before the cyberknife procedure. The radiologist called his radioncologist and told him that he had "signifigant" pnemothorax (air) in his lung cavity. He insisted we take Jeffrey to the ER to get the air out. OK, so we take him and the ER doc says it is not "signifigant" but they put him in for observation. The next day at the hospital the pulmonologist on staff cames onto look at Jeffrey and says that Jeffrey looks good for a guy with one lung. I said that he should look even better because he has TWO lungs. Apparently, in a phone call, our cyberknife surgeon told the hospital doctor that Jeff had had a pumonectomy! NOT! Also, the same doctor called me on my cell phone at work to tell me that I need to pay 3000.00 cash to him on the day of the procedure because he didn't realize what kind of insurance we had and he doesn't take it. Now, mind you, the fiducials for the treatment have already been placed. That procedure and the lung

    biopsy caused the pneumothorax to begin with!! Of course it is now a long week-end so I can't bang any drums. I am beyond frustrated with this whole thing.

    Trish

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