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creekgirlsc

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Posts posted by creekgirlsc

    The Irish Daughter

    in JUST FOR FUN

    Posted

    Ann......Loved it!

    I should come to 'Just for Fun' first thing every day to get myself 'perked up'. There are quite a few days that taking my 'happy pill' isn't enough to get me 'perked'.

    Thanks, Connie (Creekgirl)

    Sipping Vodka....Might Be A Wee Bit Offensive

    in JUST FOR FUN

    Posted

    Ann.....

    That was a hoot! I haven't laughed that hard in a long time.

    My son in law is Catholic & I used to send him Catholic/Nun/Priest jokes which he told me he doesn't even read.....just deletes them.

    I sent this one on to him begging him to read it & substitute "Episcopal Priest' instead. Maybe then he'll enjoy reading it.

    Creekgirl

    How long before blood pressure meds kick in?

    in GENERAL

    Posted

    Thanks Calintay......

    Would you believe that another doctor was on duty today (& my bp was 155/93 which was only a couple of points below last time when they refused treatment) & she gave the go-ahead.

    I got up at 7 and took the meds. figuring they would kick in by 11. It may be that my new normal is just going to be these numbers.

    Well, I'm done with it until 3 weeks from now so will relax until then.

    Enjoy your Christmas......Creekgirl

    How long before blood pressure meds kick in?

    in GENERAL

    Posted

    I need an answer to this ? by Monday

    I have been on Tarceva/Avastin for the past year & haven't had any major problems with it until now.

    My blood pressure had been creeping up so a couple of months ago onc. put me on Lisinopril 40mg. Told me to take half in a.m., half in p.m. so that was fine with me.

    When I went Fri. for my every 3 weeks Avastin my b/p was 157/95. He says lets wait for a little while & see if it drops. Next reading was 155/100 which was worse!

    At that time he says 'no treatment today as you could stroke out or have a heart attack" but he put me on hydrochlorot 25mg to be taken in a.m. Also told me on Monday am to take the whole Lisinopril instead of half pill.

    I also have to monitor at home until I go back Monday. So far I have only been able to get down to 87 & that was only once. Rest of the time it has been over 90. I take the med. around 8am & then do b/p around 10am, 3pm & 8pm.

    Does anyone know how long after taking the b/p med. it will take for it to lower my numbers? I hate not getting my Avastin but would sure like to know when to take these in order to have a number low enough to get the treatment. Appt. scheduled for 11 a.m.

    Any info much appreciated.

    Creekgirl

    Randy......Get your dancing shoes on!

    in MEMBER UPDATES

    Posted

    Randy.......

    Time for another happy dance from you! I'm sure you must know someone with a video camera. Something along the lines of Gene Kelly doing Dancing in the rain perhaps?????

    I was able to get my MRI for my brain earlier than scheduled & today got the results. Do not have to go back for 3 months as they see no recurrence or any new tumors!

    It looks like I have a perfectly normal brain (but as my cousin said "If you do, you're the only one in our family who does). He thinks he is such a wit. :roll:

    Also had a shoulder MRI at the same time but haven't gotten the results of that. X-rays that were taken show no problems with any bones so went the next step with an MRI. Will see PCP tomorrow about that. We are almost sure it is a torn rotator cuff (but that I can deal with that while standing on my head.)

    Creekgirl

    Finally posting updates on treatments/scans

    in MEMBER UPDATES

    Posted

    Susan & Michelle.....

    I am kinda inclined to let Randy off this time because "bless his heart" he is trying even tho he won't committ himself & keeps sending me these imposters.....lol.

    But the next time I get a good scan I too want to see RANDY himself doing the happy dance.

    Randy are you listening??????? And I could get another good scan as I go for a brain MRI in mid August. So have those dancing shoes ready!

    Creekgirl

    BTW, Mocha is a good judge of dancing.

    Finally posting updates on treatments/scans

    in MEMBER UPDATES

    Posted

    I am so bad about posting! By the time of day that I get on the computer I can only check e-mails & then I'm ready to get in my jammies & get some sleep.

    And I should be updating my profile. One of these days I will.

    But in the meantime......

    I had the cyberknife done in January to get rid of two tumors. One the size of a grape, the other a pea.

    Since then two brain MRI's. Both showing that the tumors are gone! I have an appt. for another one in mid-August & hoping that they haven't come back.

    I had a chest CT scan in Dec. that showed cancer in my lymph nodes so was put on Tarceva & Avastin (every 3 weeks). in Jan. Then another scan in April that showed some shrinkage in the lymph nodes. They had also been concerned about some little nodules in both lungs.

    I had another CT scan on July 22 & doc said that they don't see the nodules & the lymph nodes are no longer enlarged.

    So doc is calling me stable & I am very, very happy about that!

    Happy dance time here but not anything too strenous as I still suffer fatigue.....small price to pay in return for all the good things that have happened to me. I consider myself very, very blessed to be here.

    Stamford Hospital uses CyberKnife to treat cancer

    in CLINICAL TRIALS

    Posted

    Updating on the cyberknife treatment. I had it done on Jan. 16 at Roper Hospital in Charleston, SC.

    It took over an hour as I had both done at the same time rather than coming back again for the smaller one.

    I had to wait for 2 months to give the radiation all the time it needed to shrink the tumors so I didn't get another MRI until Mar. 23. I saw the neurosurgeon the next day & he showed me the MRI.......no tumors to be seen! HAPPY DANCE here.

    I go again in 6 weeks for another MRI. The doctors want to stay on top of this & I want them to.

    The procedure itself was a piece of cake. And it really wasn't that difficult to remain still during it. If it had been a little quieter I might have taken a short nap...lol. :lol:

    I'm still doing the Tarceva & Avastin and not having too many side effects except for the spike in my blood pressure. Of course they gave me a med. for that. Now, lets hope there are no side effects to the bp med.

    Wellbutrin side effects??

    in GENERAL

    Posted

    Hi Patti.....

    They always take my blood pressure whenever I have an onc appt.

    It usually stays in the 120-130 / 80-85 or thereabouts.

    I've only had one Avastin infusion but scheduled for another this upcomping Friday. Last time they took my b/p before the infusion so I'm thinking that they will be keeping an eye on it.

    Still no headaches so will stay on the night time Wellbutrin dosage.

    Take care......Creekgirl

    Wellbutrin side effects??

    in GENERAL

    Posted

    I appreciate all the input on the Wellbutrin side effects.

    I did get in touch with the onc.'s medical assistant & she relayed my message. We have decided that I'll take the Wellbutrin just before going to bed. She said it doesn't matter what time it's taken as long as it's consistant. Tried it last night & fell right asleep. I take clonazepam (for night time leg cramps) & I think there is something in it that helps me sleep.

    I did not know that a person can get hooked on Wellbutrin & have trouble getting off it. At this point I figure I'll probably always need something to "make me happy"!

    Thanks again......Creekgirl

    Wellbutrin side effects??

    in GENERAL

    Posted

    Hi All......

    Finally after over 1.5 years of dealing with this cancer thing I broke down & asked for an antidepressant. I was given Lexapro which gave me bad side effects. So stopped that.

    Then put on Wellbutrin 150mg a day. First day got a horrible headache, second day another headache. Third day another headache but took two Tylenol 8 hr. for the pain. Lay down & slept the headache away. Now not taking any Wellbutrin.

    I don't know if that was a smart thing to do....the Wellbutrin & Tylenol mix but I think I would rather be depressed than have the horrible headaches.....I'm talking pounding, throbbing headaches.....not one of those little nagging ones.

    I am also on Tarceva 50mg a day & the every three week Avastin infusion. At night I take clonazepam for leg cramps.

    Just wondering if I'm messing things up by using the Tylenol & does anyone have a better remedy for the headaches that I might try? Don't see onc for another week.

    Any info much appreciated. Creekgirl

    Question for Tarceva Users

    in NSCLC GROUP

    Posted

    Muriel......

    I don't know if this will be of any help to Bill but i recently started Tarceva & did get the rash all over my face.

    My onc doc told me that if it happened that he would call in a prescription that would clear it up & take away the itch.

    It is called DOXYCYCL HYC 100mg cap. I already notice that the rash is not as angry as it was & the itching is less. For that I thank God.

    Take care.....Creekgirl

    Cellular cannibalism ? Ever heard of it?

    in GENERAL

    Posted

    Christine......

    Thanks for finding that info for me. I really have a hard time understanding sometimes just what is going on. The medical terms are so hard to understand.

    I wish that any doctor that a patient has an appt. with would give out the previous written report at the beginning of the office visit so that the report can be gone over & any questions answered. Actually I wouldn't even get one if I didn't ask. They (the office staff) are willing to make copies but by then the doctor is seeing the next patient. Then on the way home I try to read & understand what the report says. And then I am left with questions until the next time I see that doctor. (They are not always good about returning calls).

    But I am glad that I can come here & get good info.

    Thanks again......Creekgirl

    Cellular cannibalism ? Ever heard of it?

    in GENERAL

    Posted

    Hello All.......A year ago I had surgery (after having the rad/chemo) to remove URL & had clean scans for awhile. Then a CT scan showed lymph node enlargement in left mediasterium.

    I had a bronchoscopy done on 12-12-08 & among other things part of the microscopic comment included the phrase "cellular cannibalism is also noted. The cell block emphsizes signet ring features."

    I saw my onc at a later date & asked him about it & he says he's never heard the phrase. Now I am wondering if that means that cancerous cells are eating up noncancerous cells.

    Kinda scary sounding to me....anyone know about this?

    Any help much appreciated.

    Creekgirl

    Stamford Hospital uses CyberKnife to treat cancer

    in CLINICAL TRIALS

    Posted

    HI Randy.....Thanks for posting that. It makes me ever more hopeful of a successful outcome using the cyberknife.

    In the past week I have seen my oncologist, the head of radiology & a neurosurgeon at Roper Hospital in Charleston, SC where they have the cyberknife.

    I have two brain mets......one the size of a grape, the other a pea. So I have my daily "fruit & veggie" .....lol.

    Yesterday they made the mask, did another CT of my brain & yet another MRI of my brain. They think they will do the procedure sometime toward the end of next week.

    After that is finished I will be starting Avastin (infusion once every 3 weeks) & Tarceva (pill form at home) trying to shrink up some lymph nodes on the mediastinum & also some very little lesions in my left lung. Supposedly that is a good combo for older patients & I am getting older by the day thankfully.

    And so it goes.......thanks again for the info.......Creekgirl

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