Cindy RN Posted August 19, 2004 Share Posted August 19, 2004 Fay I am so sorry about you being in that kind of pain. Can they prop pillows up for you rest your arms on? Maybe a xanax before the CT next time?? Love ya Cindy Quote Link to comment Share on other sites More sharing options...
Fay A. Posted August 19, 2004 Author Share Posted August 19, 2004 They couldn't use any cushioning because they were doing the scan as a restaging and treatment planning CT-PET, so they had to recreate the same conditions as those in the treatment facility. No cushioning. And the problem with the arms came about because the position of my arms in the initial treatment mapping involved the use of a wing board, which we could not set up inside the CT-PET scanner. In order to put my arms in the same position as they are in during treatments for the scan we had to forego the wingboard. I doubt this will happen to too many people, because when they are first set up for mapping, etc. they would probably have scans that the radiation oncs could use. My first CT-PET Fusions were done at UCLA, and my local docs could not read the disc they provided.. What a mess...I am better tonight because I am taking narcotics. It helps. I just hope we can get things to the point where I don't have to take these meds. My pity party is officially over, Folks. Now let's help Okie Debi celebrate her birthday.... Quote Link to comment Share on other sites More sharing options...
paddy Posted August 19, 2004 Share Posted August 19, 2004 So sorry to hear about your horrible experience Fay. Don't feel bad about crying everyone knows how brave you really are. Paddy Quote Link to comment Share on other sites More sharing options...
TAnn Posted August 19, 2004 Share Posted August 19, 2004 Fay, I'm sorry I'm a little late in responding to your post. I am so sorry you had such horrible pain on the CT/PET scan. I know how you feel about the crying. When I had the Denver Catheter in, I had to have just a plain chest CT scan. I was in so much pain from the catheter that I needed help lying down on the machine. Then the pain was so intense in that position, I had a hard time keeping still (from crying) so that they could do the scan. If it had been 30 minutes, I could never have done it. Then I had to have help getting up, also very painful. The tech was very nice and walked me back to the area where they take out the IV. HOWEVER, it only brought attention from the others waiting to have their scans done to the poor little crying girl. I was humiliated. I had a hard time getting myself together after that. Not to mention the fact that I wasn't totally convinced at the time that all that pain was from the catheter. So fear was also part of the "crying episode". Turns out the pain was most definately from the catheter. Just wanted you to know that you are not alone in the "crying game" TAnn Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 19, 2004 Share Posted August 19, 2004 Sorry to hear of all your pain to get a test done. We want you around to get a lot more years of tests so we need a plan for your comfort the next go around. Waiting to know what your next plans are when you hear. Donna G Quote Link to comment Share on other sites More sharing options...
bluebayou Posted August 19, 2004 Share Posted August 19, 2004 Dear Fay, I hate pain!!! I'm so sorry you had to go through that. God willing, it won't happen again. Love Francine God Bless Us All Quote Link to comment Share on other sites More sharing options...
KC Posted August 20, 2004 Share Posted August 20, 2004 Fay, Thinking of you always. So sorry to hear that the procedures left you in pain. I have you in my prayers. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted August 20, 2004 Author Share Posted August 20, 2004 Got a copy of the report and films/disc today. Those are sub-pectoral and axillary lymph nodes consistent with and suspicious for metastatic disease. Now I have to figure out what in the heck to do about them. Any suggestions? Quote Link to comment Share on other sites More sharing options...
karenl Posted August 20, 2004 Share Posted August 20, 2004 Hi Fay I'm sorry the report came back indicating metastasis. I know I harp on a bit about complementary therapies, but did you notice Geoff's post in the New Medicine forum about his Mom's regime? I know that she is having chemo as well, and her great response thus far could be due only to that, but isn't it possible that the other medications and supplements she is taking are also having an effect??! Just thought you might like to have a closer look at some of the pills she is swallowing!!! I wish you only the best. Karen Quote Link to comment Share on other sites More sharing options...
stand4hope Posted August 21, 2004 Share Posted August 21, 2004 Bummer, Fay! I hate to hear this. No suggestions, of course. When do you meet with the doctor to get his/her suggestions? No wonder it hurt so bad. Wish it had been the arthritis. CRAP! Let us know what your plan is! Go get it tiger!! Loveya, Peggy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted August 21, 2004 Share Posted August 21, 2004 Fay, I just saw this. Geez, I thought I was the only one who subscribed to the bear in the cave syndrome. You have every ready to cry, scream, go postal. But now I'm praying with everything I can that things will go right for you. I think you are a courageous, interesting and caring person and I would like to see life treat you with kindness. Cat Quote Link to comment Share on other sites More sharing options...
Fall54 Posted August 21, 2004 Share Posted August 21, 2004 Dear Faye, I am so sorry that the beast keeps taking bites of you!! I also think you are a wonderfully caring person and I pray all the time for you. What a terrible experience that procedure put you through. You deserve some good news soon thats for sure. Please know that we are all here for you and wishing and praying for the best for you always. God bless you Faye, Jane Quote Link to comment Share on other sites More sharing options...
teresag Posted August 21, 2004 Share Posted August 21, 2004 I found 10 clinical trials for Stage IV NSCLC on PDQ (physician data query) at the NCI. They are all Phase III. Click here: http://www.cancer.gov/search/ResultsCli ... id=1089384 Hoping for many more small victories in this battle for you, dear Fay. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted August 26, 2004 Share Posted August 26, 2004 I just saw this thread. I feel so bad because I missed it and you are so supportive of us, Fay. First of all, what you had to go through with that test sounds like something only an olympic athlete could endure. Secondly, I'm really bummed with the results. I hope something can be done for this. Thirdly, you are by far the strongest individual I have ever come across in my entire life. You have been through so much and yet you are always supportive of everyone else. I don't think any of us can imagine the extent of your illnesses. Especially us "healthy" caregivers. My prayers are with you. You are what I like to call "A Worthwhile Individual" Love, Karen C. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted August 26, 2004 Share Posted August 26, 2004 i will cry with you. if i could take it all away, i so would. as i said in my pm. your inspire many. Quote Link to comment Share on other sites More sharing options...
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