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Posts posted by Lori51

  1. Hello Everyone,

    Well, I had my first PET scan yesterday since starting (or should I "fits and startings") chemo. My appointment with the Onc is tomorrow (Friday) to review the results. I'm pretty nervous.....have read over and over here on the boards that this is common (being scared). But now that it's happening to me all the good advice I've heard seems to be stuck in the back of my mind and I can't get to it!!!!! Please give me some words of wisdom......help me stop the "what if's" from making me nuts.....

    Personally, I don't think I've had enough treatments to really tell if it's working or not because they had to stop the Taxol and start the Gemzar.....what do I know????? Someone get me the rubber mallet...

    Love, Hugs and Prayers to everyone,


  2. Hi Deb,

    I live in Connecticut and went to Dana Farber for a second opinion and was very pleased with them. My brother has lived 20 minutes outside of Boston for many years and believes that Dana Farber is a wonderful hospital with all the necessary skills and tools available to make the best state of the art options available to their patients. My Oncologist here in CT confers regularly with the specialist I saw there. His name is Michael Rabin. Dana Farber has a clinic that specializes only in cancers of the lung which is one reason why I wanted an opinion from them. Here in CT we don't have that. Well, best of luck to you and your Mom. You will be in my thoughts.

    Hugs and prayers all around,


  3. Kasey,

    I'm soooooooo happy for you. You are truly an inspiration to me and a guiding light of real hope! That NED guy seems like a real gem; I hope I have the pleasure of meeting him some day!!

    Love, hugs and prayers all around,


  4. You guys are the best! I'm so glad I found this site. The love and support of others who've traveled the path before you is so important. I know the fear of the unknow would be so much more overwhelming without you. God bless you all.


  5. Hello Everyone,

    Three weeks ago I had my first treatment that Taxol was a part of. They had problems with it the first time, too. My eyes swelled, I began to itch, I exprienced tighening in the chest and my oxygen levels in my blood went down. However, they were able to administer the dose by giving me large doses of steriods and benadryl and stretching the treatment out from 3 hours to 5.....yowsa.... This time around I wasn't as lucky. The same type of things happened again despite diluting drug, slowing the drip, etc. etc. They decided it wasn't in my best interest to continue. Sooooo today I have a 9:00 appointment with the Onc who is supposed to have confired with my Onc at Dana Farber.....

    Has anyone out there experienced this????? What was the outcome???? I'm scared because know I feel like I won't be getting the best "first line" treatment. The other drugs I'm taking are carboplatin and avastin; they seem to be OK. Any words of wisdom would be greatly appreciated.

    Hope this finds all of you out there doing well, thinking positive and securily on the beat the beast band wagon.

    Hugs and prayers all around,


  6. Hello Everyone,

    Haven't posted for a while but have been reading often. I started my treatments on 6/21 - taxol/carbo/avastin. So far side effects have been manageable; hair has started to fall out like crazy. I'm sure it will be gone by the end of week...keep reminding myself that it's the least of my worries..as long as the treatments work, I can put up with anything!!!!

    My question: For the past two years I've been taking OPC3 and ORAC (isotonic form of antioxidants). When I went to re-order, the gal I get the stuff from said "STOP TAKIMG" them while you are on chemo. Reason being since part of the benefits is to increase cell growth and it doesn't differentiate between good and bad cells, it may inhibit the benefits of the chemo. I mentioned this to my Onc on my last visit. She said that there is no solid evidence either way, but to stop taking it just to be purdent. Well, needless to say I've been freaking out.......silently....OK, NOT so silently ever since. Does this mean that my first treatment might not have had the benefits it should have? I think they are planning to do a scan after my next treatment to see how things are going. I'll be nervous at it is..... now I'm thinking they should wait until after the 3rd treatment??

    Has anyone out there had any experience with this? Sorry for the long post. Hope everyone out there is OK. You are all in my daily (sometimes hourly) prayers.

    Hugs all around,


  7. Hi Everyone,

    It's been a while since I've posted, but have been reading everything. It seems like it's been soooo long since this all first started for me on April 11th. Anyway, yesterday was the consultation at Dana Farber in Boston. The recommendation for first line treatment is chemo carbo/taxol/avastin. Next visit with local onc is 6/14 and will probably start treatment right away (next week). Has anyone out there had experience with this combination of drugs? I believe the initial regime will be a full day of treatment once every three weeks. Guess this will be verified on my visit on the 14th. Does this sound right? They also mentioned possible radiation and other options down the line. Their initital thought is to see what happens with chemo. I'm excited and scared at the same time. What if I'm allergic to the med's....what if it doesn't work...what if...what if.....someone just knock me out!!!!! All joking aside, I'm trying very hard to stay positive. It just feels so much better when I'm able to do so. I do a lot of praying for acceptance of what is and for help to direct my energy in a productive rather than destructive direction. It's a challenge.......

    Hugs and prayers for everyone,


  8. Hello Everyone,

    Well, after all my moaning and groaning about having to wait 10 days for my liver biopsy, tomorrow is the day. It is going to be ultrasound guided with CT backup if needed. Guess the hold up (10 day wait) was coordinating both the CT and ultrasound. I sure as only you guys can truly undersrand, I'm pretty nervous. This will mark the true beginning of a real diagnosis and treatment options......the reality sets in. I also want to thank everyone who posted to the call for all Survivors!!! It really makes such a difference to me as my journey begins to know that statistics are just that.....statistics. Anything is possible and there are so many variables that need to be taken into consideration plus, we are all individuals. Hats off to all of you. I would like to be able to offer encouragement to someone day, too. Please hold a positive thought for me tomorrow....that whatever the outcome is I can have the courage and strength to do the next right thing. Prayers and hugs to everyone.


  9. Well, I'm glad to say I'm having a better day today!! Your replies all indicated that 10 days is not an unusual time to wait for my biopsy. I'm going to try and enjoy this week one day at a time.....one moment at a time and be happy and grateful that things are OK for now....What if's and what about's will have to wait for a few days!! I'm even going to try and take a sabatical on my "learning about the disease" frenzy I've thrown myself into recently. There will be time for that after dx and treatment begins. Boy do I sound good, huh????? Now I just have to re-read what I've written and try to BELIEVE it....:o) I can't express how grateful I am to have found this site. You are all a godsend right now and I'm sure will be for me in the future. Hugs and prayers to you all.


  10. Hello Everyone,

    Well Friday was my appointment with the Surgeon to go over my PET scan. He drew me a picture that showed the tumor in my left lung (seems to be in the upper middle portion) and one on the lymph node fairly close to the lung. Also there is a spot in the liver, one on the adrenal gland and one on the pelvic bone. I've had a previous liver biopsy because of a Hep C diagnosis from a long time ago. He said the spot MIGHT be from that but doubts it. Next step is a liver biopsy. Doc said the spot is between a rib and fairly accessible, hence the easiest place for biospy. That will verify met disease, staging and next steps for treatment. The hospital called today to set up the biopsy. It's not until the 10th of May. I will go insane by then. Is the appointment so far out because I'm hopeless and going to die so it doesn't matter????? Don't they realize I'm a walking time bomb????? I am on such an emotional roller coaster....hopeful one moment, in total despair another and mostly crying a lot. The insane thing is how good I feel....aside from the fact that I'm probably dying.....how could this be happening? Should I push to move up the biopsy.....should I call my Doctor and ask why so long? Please forgive this post; I'm sure I'll get better.....please tell me I will......with the emotions, that is. In my quest for knowledge and the reading I've done, I've seem stage 1 changed to stage 4, I've seen stage 4 changed to stage 1. It seems anything goes and anything is possible with this disease.....I'm so confused and scared. Please advise. I'm praying so much for myself and everyone.


  11. Hello Everyone,

    Well, tomorrow is the day of my first PET scan. I'm scared but also anxious to get going. Won't have any news until Friday when I see the surgeon for the first time. The anxiety is overwhelming. These past two weeks seem like an eternity. If I use the pm button to respond to any one of you directly will you get my message or do I need to do something special? I'm still trying to find my way around the site. Thanks again to everyone for being out there. You all seem like an incredible bunch of folks. Hugs and prayers to all of you.


  12. I am so grateful to have found this site. I can tell it's going to help me tremendously; the support of others who have been there before you makes so much difference. My PET scan is Wednesday.....not Tuesday as previously thought. Just want to get on with it; I have this nagging fear that every day that goes by without doing something is causing harm. Every little ache and pain I have scares me. I need the rubber mallet.....or at least a key that I can stick in my ear to turn my brain off!!!! I need to get with the lingo....not sure what a lot of the acronyms stand for. How do I start a bio for myself? Thanks everyone who responded and thanks for putting up with my long posts. Writing seems to help. I now have a whole new group of folks to add to my daily (sometimes hourly) prayers.

  13. I'm just dx with malignant tumor in my left lung with "some" lymph node involvement....whatever that means. Next step is a PET scan this Tuesday to see if there's mets to anywhere else. The CT scan showed my right lung clear and what they could see of my liver, clear also. I guess the PET scan will tell more. Friday I have an appointment with the surgeon. I'm only 54 and thought I was healthy. The tumor was discovered on an xray for a dislocated shoulder! My emotions are fluxuating between mass hysteria and denial.....healthy one day...life threatening illness the next...it seems too much. Any advice would be appreciated.

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