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Alisa

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Posts posted by Alisa

    How do we tell a 10-year-old?

    in CAREGIVER RESOURCE CENTER

    Posted

    My twin boys were 10 when my mom passed away from nsclc. They were with me when I took care of her. One twin couldn't be in the same room and the other twin wanted to help feed her through her feeding tube. Everyone reacts differently. After my mom passed away, I got diagnosed with the same thing (3 months later).

    It was pretty traumatic for them, but I included them in everything. I didn't sugar coat anything, but I didn't scare them either. I told them what was going on in basic terms, and answered their questions as they asked. I found they only asked questions that they could handle the answers to. It was difficult, but I felt including them helped.

    Take care,

    Alisa

    Anyone with Stage IIIA or above not get radiation?

    in NSCLC GROUP

    Posted

    I was stage 3a (see my profile below) and did not have radiation. Maybe because it appeared "they got it all" so there was nothing they could see to radiate. I was told I only needed adjuvant chemo in case of any escaped cells that couldn't be seen. Or maybe the doctors thought to save the radiation should it be necessary for me in the future ....

    hiccups

    in NSCLC GROUP

    Posted

    I read that acupuncture really works with bad case of hiccups. You may want to look into it. Also, it's known to relieve naseau in cancer patients.

    Some insurance companies cover acupuncture for cancer patients undergoing chemo.

    Good luck!

    John

    in GRIEF

    Posted

    Oh, I am shocked and so sad! I have not been on the board for a couple of weeks. I am so sorry to hear this and I send prayers and blessings to you and your family.

    Love,

    Alisa

    Question about mets, spreading, etc.

    in LC SURVIVORS

    Posted

    Ken, have you considered another opinion? I know MD Anderson is a great hospital, but with all your concerns, I would go to a completely different comprehensive cancer center and get another opinion, just to ease your mind. Most hospitals work with their own protocol, so you may find something for you elsewhere, you never know.

    I went for 3 opinions from 3 different hospitals before I chose my course of action. I think it's that important if you feel any hesitation about your treatment.

    Feel free to email me any time at abrenes@thelen.com.

    Take care,

    Alisa

    My Latest PET/CT

    in GENERAL

    Posted

    Hey all. I just wanted to share my good news – I just had a combination PET/CT and the results are in and I’m still considered NED (no evidence of disease). Yeah!!!!

    I was really nervous because it’s the first time I waited 10 months for a test. I’ve been on a 6 month schedule for the last 5 years (I was on a 3 months schedule the first 2 years) and for the past few years my onc was trying to get me on a 1-year schedule and I finally agreed to wait 10 months.

    I was so stressed out waiting 10 months that I asked the doctor to put me back on a 6-month schedule next time and he said ok. So I will be getting a CT without contrast every 6 months as they are watching me for a new primary and not a recurrence at this point.

    I am so relieved and I can breathe for another 6 months now.

    I hope this gives others hope. I was Stage 3a and have been NED for 7 years since surgery and chemo.

    Blessings,

    Alisa

    ANYONE WANT TO MEET IN ORLANDO EASTER WEEK?

    in JUST FOR FUN

    Posted

    Hey guys. I've not been fortunate enough to attend any of our annual events, but I just had a thought - My sons and I will be in Orlando for Easter Week. We have a time share at the Marriott Vacation Club. It's not big enough to house guests overnight, but I'm sure I can arrange to use the facilities during the day for barbeques, miniature golf, picnic areas, boating, etc.

    If anyone thinks this is worth looking into, let me know. I believe you all would need to make your own rooming accomodations, cause the vacation club is booked in advance for Easter Week, but I may be able to get people special rates at any Orlando Marriott, because being a Marriott Time Share Owner and Elite Member gives certain perks.

    I look forward to responses and hope this is doable.

    Katie - what do you think?

    Is it almost over?

    in GENERAL

    Posted

    I was moved by your post. I have no words of comfort as it is so difficult. Before I was a lung cancer patient myself, I was caregiver to my mom towards the end of her lung cancer battle. It was so painful to watch her suffer. The only advice I can give to you and your mom is to say what you feel to your step dad whether you feel he is comprehending it or not. I was in denial, and refused to believe my mom was dying. Looking back I see it was obvious. But because I couldn't face it, I never said all the things I wanted to tell her and I wished I told her how much I loved her more than I did. I have issues with that to this day and am so sorry. So, keep telling him ....

    Flights with Lung Cancer

    in GENERAL

    Posted

    I flew from NYC to Orlando to take my kids to Disney World in between my chemo treatments (I had 3 weeks in between each treatment). Not only did I fly, but I went on all the upside down roller coasters in the theme parks, and believe me, they seemed to go higher than the plane!

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