creekgirlsc

Katie & Rick......I will add you to my nightly prayer list. Creekgirlsc

Ann....That one was a hoot! Creekgirl (aka Connie)

Randy....... You are right. This did make me laugh. Think I'll save it to my favorite jokes folder. Some days I just need a little perking up & today was one of those days. Thanks, Creekgirl

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)

Maryanne...... Thanks for posting that. It was great! I didn't know that Johnny Carson could sing. Sure wish we could have the 'good old days' back again...sigh. Connie (aka Creekgirl)

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

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

Randy...... Done & to do it! Creekgirl

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

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. 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.

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

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

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

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

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

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

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

I always looked forward to the posts by Don M. They were so full of knowledge of our situations. Now his situation is that he is resting eternally wrapped in the arms of God. With sympathy for your family........Creekgirl

Merry Christmas to all. We are having beautiful weather today so will take a little ride in the golf cart later. I wanted to let you know that I had the 'power port' put in on Monday 12/22 and that procedure went well. It was done by the same surgeon who did my lobectomy & she was very reassuring about my prognosis when I told her what the onc doc told me....that I was strong & could handle just about anything. She did tell me that the 'signet ring feature' of the cancer cells in my lymph nodes are rare & also an agressive type. I had the MRI of the brain done Tuesday 12/23 in mid afternoon & that night around 6pm one of the doctors in the practice called to tell me that they found 2 mets. One is 1 cm & the other is smaller. She said my onc would probably call me with more info. But she did want me to know that it would be either radiation or gamma knife and that they were going to hop on this a.s.a.p. I hadn't expected to find out about this until I saw him on 12/31 but at least I don't need to spend Christmas Day fretting about the results. I'll just eat my share of the turkey & maybe even a little bit more than my share of the pumpkin pie. Blessings on all......& thanks for being here when I need you. Connie

Thanks for the replies & well wishes. I've got my mind wrapped around it fairly well now. I think the onc doc was so candid was that when we first started off together back in Aug. 2007 that he told me some patients don't want to have any prognosis told to them & others do. And I probably told him that I did want to be kept informed of my situation. So, it is my own darn fault for being so nosy....lol. Power port scheduled for Monday, brain MRI for Tuesday. Wednesday I will decorate the tree & on Thursday will Thank God for letting me have a another Christmas to celebrate the birth of his son. Best wishes to all....& again thanks, Connie

Well I managed to go from stage 111A to stage IV at my onc appt. on 12/15 so things are different now & I need to get my mind wrapped around it. I had a CT of pelvis on 12/10 (just as a precautionary measure my onc tells me) & the bronc on 12/12. Pul doc confirms cancer in lymph nodes. Onc doc tells me results of CT show bone mets so having lymph nodes on left side & bone mets changes things to stage IV. Then tells me that maybe Avastin might not be right for me. But first he wants a MRI of my brain to see if there are any mets there. That is scheduled for 12/23. I have no idea what the plan of action will be if there are mets. I am still going to have a power port put in. I like my onc but didn't like what he said next & I don't think he liked saying it. This is the first time that he has ever put the cancer in a time frame so I was surprised. "Since all this has occured I have to tell you that your prognosis is different. Actually we don't think your cancer ever went away. It was just too small to see. We also see tumors in your left lung but they are very small. I will give you from 3 to 6 months at the least and 1 to 2 years at the most. I know that this comes as a shock to you but I promise that we are going to do our very best for you". And then he gave me a hug & a little back rub. Now scheduled for an office visit 12/31 with him. Sure hope that he has some good news. I know that many people on this message board have been around for a long time & that gives me hope & maybe I'll be one of them. I have a lot of things I want to do.......gardening, quilting, reading, travel, etc. Creekgirl

Thanks to all for the good info. Sorry I didn't reply sooner but I am a bit "bummed out" right now. Starting a new topic regarding it. Thanks again. Creekgirl

I want to thank all of you for the information on Avastin. It helps me to know that it is generally well tolerated. I can deal with a higher blood pressure (mine is running about 120/80 right now), some aches, slow healing of scrapes, bloody nose, muscle aches etc. And knowing that it usually helps to slow progression is really great. Do you have to have that shot of Neulesta the day after the infusion? I think that bothered me more than the chemo treatments.....just knocked me over with the bone pain for a couple of days each time. I am also to have a 'port' put in. Hopefully that is not a really horrible procedure. Onc doctor wants that done as he thinks that Avastin is hard on veins. Do most of you have ports? Any disadvantages to them? Gee, I'm just full of ???????? aren't I? But I believe this is the best place to come to for informed answers. Thanks again......Creekgirl

HI all.... After having one clear CT scan in August the next one in November showed 3 lymph nodes. After having a PET scan my onc. ordered a bronchoscopy & has now said he'll put me on Avastin (after having a chemo port put in). It will be one infusion every three weeks. I asked about side effects & he said my blood pressure might go up. That's all he mentioned. I just want to know if anyone has had side effects other than that? Am I apt to lose my hair (didn't last time). Also how long does an infusion take? I have already had rad/chemo/surgery over a year ago so this is not all new to me but it is different than the last time around. Thanks for any info. Creekgirl

If you eliminate the first letter of each word, then the letters read the same forward & backward.