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trishnmiller

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    What I've learned along the way

    in LC SURVIVORS

    Posted

    1. The statement that he/she is "not a candidate for"

    whatever procedure you are asking about is the opinion of one doctor. Pick up your scans, go to the source, and ask again.

    2. Doctors are Human Beings. There are good ones and bad ones and incompetent ones etc., etc.. they come in all sizes and colors, like shoes and you can change them, too.

    3. Sickness brings out the best and the worst in people. You find out who your friends are. I try to embrace them and forgive the others (even if they are family).

    4. I know that no matter what happens nothing remains the same. I try to savor the joyful moments and suffer the sad ones but keep the truth in my heart that everything will change.

    5. I have come to understand the beauty of "One Day at a Time"

    6. I trust God and believe that His will is done. I may question the timing or the reasons but I do know that everything will be OK, eventually.

    7. Trust your gut. If you think something isn't right your probably right...right??

    Trish (everybody jump in here)

    Friday t he 13th is a Lucky Day..Jeffrey's 1st anniversary

    in LC SURVIVORS

    Posted

    Dear Friends,

    This year has been a journey from the depths of despair (diagnosis NSCLC IV) up the rocky path of acceptance (prognosis 3-6 weeks), toward hope and wonder (he is working, asymptomatic and almost cancer free) to have made it all the way to a year. I've learned a few things along the way that I would like to invite all of you caregivers and patients to add on to so I am going to open it in a new thread called "What I've learned along the way".

    Your are the best people on Earth,

    Trish

    when to stop chmo??

    in NSCLC GROUP

    Posted

    Dear Mary, have the docs said what they want to do next? Have they discussed IMRT or any other form of radiation? My husband's lung tumor is similar to yours and he is having 28 rounds of IMRT radiation followed by cyberknife. It might be a good thing to check out.

    Prayers,

    Trish

    Brian K Osberg

    in GRIEF

    Posted

    Dear Pat,

    My heart is so heavy for your horrendous loss I can barely write. I have been with you both since your first post and now pray for your peace as Brian has found his. He will forever be held in loving memory.

    Trish

    URGH ! -- the struggle with treatment decisions continues

    in NSCLC GROUP

    Posted

    Sounds like your dad needs a "Pit Bull" type advocate to go with him to his visits. I know what I have gone through to get Jeffrey the best care that's available and it has been a series of wrestling matches. I have found that the worse the prognosis, the harder it is to get treatment that goes beyond pallative care. It comes down to a statistical insurance thing. They play the "how much are we willing to invest in you" game so it can be hard for doctors to get approvals.. but they can get them. If it were me, I would find a doctor who treats him better ASAP. He has a right to the best care out there and it doesn't sound to me like he's getting it.

    Trish

    Jeff's scan

    in CAREGIVER RESOURCE CENTER

    Posted

    Well , Jeff had his brain scan down at Gamma Knife today and it turns out he is only having some not unexpected brain swelling (from the Gammaknife in May) that is causing his confusion so they put him on steroids for a week and then we will see. I'm just so glad he doesn't have any new cancer...what a relief! The Radioncologist is going to do 10 more hits of IMRT to his lung and then a different Cyberknife doctor will remove the actual tumor if it is not too small to put a fiducial in. He now has 4 different specialists: Gamma Knife, Cyberknife, IMRT, and Chemotherapy...and me, the advocate who is trying to hold down a job while I try to get these guys to talk to each other and not through me. Really, I am grateful that we have all this high tech stuff and that it is working. Thanks to all for your kind thoughts and blessings as we trudge through this nastiness together.

    Trish

    My Heart is Breaking

    in CAREGIVER RESOURCE CENTER

    Posted

    Dear Holly, I do know what you are going through. My mom passed from breast cancer when my Megan was just 2 months old. Mom was in Dallas and I was in Miami. You are blessed to have here near. I miss my Mom to this day but I know she is in a place that knows no pain. My heart is with you at this time.

    Trish

    Update on Jeffrey

    in CAREGIVER RESOURCE CENTER

    Posted

    Dear all, Lordy, Lordy I know it's been a long time since I poseted but I follow and follow and keep up. Thanks to all for private mesages. Anyway, currently Jeffrey is undergoing daily IMRT radiation and weekly chemo to be followed by Cyberknife. All of this is to remove the original host lung tumor. As far as we know there are no more tumors in his body. In the meantime he is stating to get "muddled" again. He is having trouble forming words and is generally a little off. He is still going to work every day and taking his radiation (IMRT) in the afternoon. On Wednesdays he has his Carboplatin dose. We are having his brain scanned early on Monday to see if he has new brain tumors or is experiencing "chemo brain". He has been on chemotherapy for a full year now without a break so anything is possible. I am anxious about the scan but if he does have new tumors we will have them Gamma Knifed out ASAP. Other than that he is doing really well for a guy that had 1-3 months to live a year ago. Happy New Day to all...sorry, but I'm still for taking it ONE DAY AT A TIME.

    Trish in Miami

    My meandering on Gamma Knife and Cyberknife and Stage IV

    in NSCLC GROUP

    Posted

    Thankyou all for sharing in our good news. A few have asked to know more about the Cyberknife and the insurance. Well, it's not that they won't pay for it but it does take time to put everything in place. The oncologist has to send him to the radio oncologist who then has to recommend cyberknife as the proper procedure. When Jeffrey was turned down for Gamma Knife because he had too many brain tumors I searched until I found a doctor who would do what we wanted and then asked that doctor which oncologist would give us the referral for the Gamma Knife procedure. Anyway, as you can see we worked backwards to get what we wanted and did the same to get cyberknife of the liver tumor because our Dr. really didn't think it was the way to go..actually he admitted that he didn't know much about it. Now he is a believer and we won't have any trouble. I think the problem is that the medical community tends to lean toward pallative care for Stage IV nsclc. They make you feel that you're being unrealistic if you ask for more agressive or innovative treatment. In Jeffrey's case we have been right every time and the doctors no longer think I'm a lunatic...at least I don't think so, lol.

    FYI

    Dr. Fayad at Cedars of Lebanon in Miami is the Dr. mose closely affiliated with Cyberknife Miami and Dr. Azik Wolf at Doctors Hospital in Miami is the Gamma Knife guy ... I really can't say enough wonderful things about Dr. Wolf. He is a total medical maverick who performs the procedures himself and literally saved Jeffrey's life when everyone else told us it was about over. The best day of my life was when he looked at the brain scans and said, "I can do that"...and he did.

    Thanks again for all of your wondeful responses. I pray for you all every day! Trish

    Doc says Jeffrey is in "Uncharted Territory"

    in NSCLC GROUP

    Posted

    To all my friends here in "Lung Cancer Land" let me apologize for rarely posting these days. I am here but usually on the fly and stealing a little time away from students or family. Anyway, on Wednesday Jeff had his last scan read and the results were phenomenal. His liver is completely cancer free and his original lung tumor is down to 1.2 cm (shrunk another 25%) on Alimta. That's all there is left so the onc said that if we cannot cyberknife because of location he wants surgery. I KNOW they can cyberknife because Miami Cyberknife has already seen the scans so we're down with that as soon as the insurance clears. In the meantime he will stay on Alimta since he tolerates it so well and in his cas it has been a miracle cure. I was puzzled that the doc was considering actual invasive surgery because Jeff is stage IV so I asked Dr. Swartz, the oncologist about this change in approach and he said that Jeff's recovery has been so unusual that we are in "unchartered territory". I must say that in this case that is a great place to be. My prayers and gratitude remain with all of you everyday.

    Trish

    Mom is in bed so much

    in CAREGIVER RESOURCE CENTER

    Posted

    Dear Janet, It would help if you provided a little bit of information about your mom. My husband is also stage IV but he's doing great and still going to work every day. Many of the patients in these forums are Stage IV and actually doing quite well. It is not an automatic death sentence and the prognosis is of course different for everyone. I think your mom is slipping into depression and it needs to be dealt with because patient attitude can have an enormous impact on prognosis.

    Praying for your mom,

    Trish

    Please help with advice

    in CAREGIVER RESOURCE CENTER

    Posted

    It sounds to me like your Mom needs you to be her advocate. I know that Jeffrey could nver taken control of his own disease. He wanted no information at all and tossed it all to me. It made me crazy so I DO know what you are going through. I enlisted the help of his sister and some friends so that he never went to a doctor alone. We all spoke for him as he never would for himself. Now is is able to go alone to routine visits but when decisions need to be made I make sure I am with him or I write things down for the doctor to read followed by a phone call. It doesn't sound like your Mom wants to be in charge right now...I hope I have helped.

    Trish

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