holly22a
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one thing to note is that cc is very “pet-avid” and shows up…but anything less than a cm may not show at all. most drs like different scans for different reasons.
I wish I had more to add. Sounds like it’s time to move on from the allergist to an autoimmune disease specialist. I am praying for relief for you. This is just too awful. xox
I had sirispheres on Feb 20th and they would not scan anything for a minimum of 8 weeks – – 3 months is preferred. why? because the radiation causes the liver to become inflamed and annoyed and the mri’s look awful and are hard to read until that time. Then, you cannot tell if things are alive or dead even then. you have to look closely at ct/contrast and at pet scans but even more importantly at the NEXT scan 3 months out later. do not be distressed! it takes time and then full effects are 6 months out, even. Best of luck to you. Holly
Dear, brave, Mary,
Nothing worse than feeling so lousy. Anything to distract you? I know this is crazy because I do not watch tv but I have discovered that I like watching golf on tv – – and I’ve never played golf either. Who knows what might take your mind off “lousy!” I think your walks are a great idea…..all the docs say exercize even when you feel lousy, if you can. So many prayers for you, so many of us pulling for your sbrt to happen, and happen well, and without incident. Close your eyes and Lourdes will be right there in your mind’s eye. – Hollyjust awesome! We are all jumping up and down, can’t you just feel the earth shake! this is great news indeed! -Holly
Gavin and Percy, thank you so much for the articles. I had no idea the effects of y=90 could and do stretch out so far. I got a huge dose because I asked for it, so I guess this is paybacks! On the plus side my pet-scan is completely silent right now and all looks “amazing” according to one doc and “could not have asked for such a result” from another doc. Now just to rid myself of these pesky fevers/lethargy. The fact that I am even writing with the laptop in bed is rather remarkable so maybe I am on the mend.
Plus……. that lake sounds like a cc cure resort! There’s nothing love cannot accomplish! Lainy, when does the season open!? You’re gonna be swamped!
Oh, Lanny, your Cindy sounds so wonderful. 38 years is a long time but it isn’t only the number of years as the depth of love you shared. I know you must be missing her terribly. The thing about this discussion board is the amazing magic taking place here. It truly is a family and the love is enduring, palpable, and real. I have been shown so much tenderness and concern it almost breaks my heart – – so I just try to give back. This is indeed an indiscriminate demon we are all fighting. We need each other before, during, and after, every one of us and our loved ones. I thank you so much for your posting, your thoughts and prayers. You are most kind. I will think about Cindy and you and remember love never dies and we never go far from our children and our loves. xox
Lisa! Happy about the ca 19-9 and sorrya bout the hives. I have read that radiation can give hives. I hope they go away, you poor darlin’ Meanwhile, concentrate on that wonderful tumor marker news!!!
Thank you for your post here, Bonnie. You sound in a similar circumstance to me – my youngest is 15. I took a lot of comfort in your words and advice.
Hi Jason. The interventional radiologist that works with Dr. Kato at New York Presbyterian is Dr. Sperling and he is awesome. I also adore the surgeon Dr. Faciutto, head of liver transplants and everything liver at Mt. Sinai in nyc. He is just wonderful, so knowledgeable and kind. I have a lot of drs – – you can never get too much info with this disease. At Hopkins, Dr. Azad is a great oncologist also. I am one of those inoperables who went on to have surgery – – not curative but palliative, but I am almost cancer free at the moment and thus have hopes of more quality time with my children. Best of luck. Keep us posted.
I remember my own diagnosis and the disbelief and yes the crying. all. the. time. I still cry six months later but now I know the triggers. Go ahead and cry, it’s actually good for you to have the release and I am so glad you have your rock of a husband. Once things get moving, you will turn crying into fighting, it really does happen like Lainy says. You will find much support here. Let us know how it goes.
