stand4hope Posted July 7, 2005 Share Posted July 7, 2005 I desperately need your calming words. I got the results and the CD for the stereotactic MRI (thinner slices) for Don's stereotactic radiosurgery, which is scheduled for Monday, and I'm more nervous than ever. It's a very short, nonspecific report (I HATE IT WHEN WE GET THOSE). In March and June, the regular MRIs defined 3 specific tumors, complete with measurements. The 4th one is visible on the CD, but small compared to the others and was not defined. This report refers to SIX specific "areas". And to make matters worse, it doesn't even say there are only six tumors. It says: "There are multiple enhancing masses again noted. . . .larger areas in blah blah blah, and . . . Small areas in blah blah blah. It then names SIX locations where these "areas" or "multiple masses" are located. It doesn't say how many masses there are. It's making me crazy. I called the Novalis nurse today and she is going to have the Novalis onc call me tomorrow or Friday after he looks at the films. She said it "could" change things for Monday, but she said he would decide after looking at the MRI films. The bad news for me is that if they go ahead and treat all these places, I'm a nervous wreck because there are so many, and four of them have been treated before with SRS (one is 4 cm.) increasing the risk, and he has also had WBR, which also increases the risk. AND if they DON'T treat at all and cancel it, I'll be even more upset. I've always been glad for a plan, but I'm sure nervous about this plan. I told Don and he said he didn't want to hear it. Has anybody else ever had the same tumors treated two times with SRS, and especially one that is 4 cm.? I'm really upset. Going to bed. Love to all, Peggy Quote Link to comment Share on other sites More sharing options...
Fall54 Posted July 7, 2005 Share Posted July 7, 2005 OHHH Peggy I am so sorry. I dont know what to say or have any answers for you. Get back in the saddle and dont borrow trouble. Wait until you hear what this all means before you jump the fence Sweetie. You are all in my prayers. I love you! God Bless you all, Jane Quote Link to comment Share on other sites More sharing options...
Amy P Posted July 7, 2005 Share Posted July 7, 2005 ((((Peggy))))) I don't have any words of wisdom but please know that I am thinking of you and your boys. I hope you get things cleared up tomorrow and have more confidence in the plan. Much Love, Amy Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 7, 2005 Share Posted July 7, 2005 Peggy, Wow you certainly got some dismal new, but lets wait and see what the Novilas Onc. says. I am sure there will be a good plan for him. Hang in there. Let us know the outcome. Will be thinking of you tomorrow. Maryanne Quote Link to comment Share on other sites More sharing options...
karenl Posted July 7, 2005 Share Posted July 7, 2005 Peggy So sorry the report wasn't better.....I know this is such an anxious time for you (what an understatement that is!), and I hope that the doctors work out a great treatment plan for Don. Love Karen Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted July 7, 2005 Share Posted July 7, 2005 Peggy, So sorry you are having to go through this. Praying for the doctor to have wisdom. Praying for a new calmness and strength for you. (((((PEGGY)))))). Praying for Don to have total healing. Take care. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted July 7, 2005 Share Posted July 7, 2005 Oh Peggy dear, I hope you got a good nights sleep (although I doubt it) and that you can look at this situation with a clearer head. Try to keep your hopes up until you get all the reports. And then get busy on the new action plan. Peggy, that feeling of your heart in your throat is horrible, been there, hated it. I don't have a cure for that (wish I did), but know that there are many people here routing for Don. Hang tight my friend. Quote Link to comment Share on other sites More sharing options...
Addie Posted July 7, 2005 Share Posted July 7, 2005 Oh, Peggy...I wish I could wave the magic calming wand for you....and know it would work. I don't have any specific experience or wisdom about any of this to help you with. All I CAN tell you (as something that sort of relates) is this: When my cancer came back after just 4 months of NED...the rad report from the gut MRI said four tumors in my liver and, "...multiple masses" in my pancreas. Nothing else...just multiple masses. Talk about panic? I figured my poor pancreas was overrun by the little cancerous suckers and I was doomed. Three treatments later, the four liver tumors were reduced by half and my pancreas "appears normal". Three more cycles of tx and a second CT and, "pancreas appears normal" still! My point? Don't get all panicked over what you're reading. Ask questions, sure....but sometimes these medical types have a way of putting things that strikes FEAR into our hearts...and a month or two later...things look a lot better. The Novalis doc will know what he can and can't do. And Don is willing to fight. So take this a step at a time and trust that they'll do what they safely can do for him...ok? Know we're here for you to vent...especially if DH would rather not discuss things right now. Sending all good thoughts your way, Peg. Deeeeep breaths, okay? Keep us posted. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted July 7, 2005 Share Posted July 7, 2005 Sorry to hear that Peggy. Just want you to know my thoughts and prayers are with you guys. Rich Quote Link to comment Share on other sites More sharing options...
SBeth Posted July 7, 2005 Share Posted July 7, 2005 I can't help you with any important or helpful information about retreating the same "spots" on the brain, but please know that my thoughts and prayers are with you Peggy! Quote Link to comment Share on other sites More sharing options...
shineladysue Posted July 7, 2005 Share Posted July 7, 2005 Peggy, There is one reason that I never get our test results early to read myself because sometimes things aren't as bad as what I would interpret myself. I'm not helping you,I know , but you need the doctor to give you these results. Push for getting the doctor to call you soon. Try to stay calm Peggy. Prayers coming your way . Love, Sue Quote Link to comment Share on other sites More sharing options...
Patkid Posted July 7, 2005 Share Posted July 7, 2005 I can't stand knowing that you feel this way and not being there to hug you. I can't stand to think of you having a sleepless night. I can't stand to know you are scared like I am scared. What I CAN do is pray and pray and pray and make sure you know how much we care. Lots of love and support Pat and Brian Quote Link to comment Share on other sites More sharing options...
bunny Posted July 7, 2005 Share Posted July 7, 2005 Peggy, I'm so sorry for these scary results, and for your upset. who wouldn't be!? I wish I could give you some real answers/experience in response to your questions, I just can't. I am praying for you guys and thinking of you both - I don't know the origin of you nickname at all, but for now - I will "stand 4 hope" for you. xoxo amie Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted July 7, 2005 Share Posted July 7, 2005 Peggy,sorry your having a rough go of it right now. I am lucky so far,haven't had to deal with brain tumors.However the general concensus says that tumors in the lung and chest area can't be re- radiated.Well I've had the max amount of radiation in the same general area 3 times now. Mabe they will be able to derive a treatmemt plan anyway.Try to hang in there till you talk to the novalis onc. Quote Link to comment Share on other sites More sharing options...
patut Posted July 7, 2005 Share Posted July 7, 2005 (((((((((((Peggy))))))))))))) Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted July 7, 2005 Share Posted July 7, 2005 Oh Peggy, I wish I could do SOMETHING for you. I know your fear. Hang in there girl. I'll pray as hard as I know how. Good luck to Don and yourself. Love Ya, Mare Quote Link to comment Share on other sites More sharing options...
rogfam Posted July 7, 2005 Share Posted July 7, 2005 I'm so sorry Peggy. I have no answers for you, but I know Someone who has a plan in all this. He WILL keep His promises to you. Romans 8:28, He will bring good from this. Jeremiah 29:11, He has good plans for you! I'm praying for you both. Lean on Him. Remember, the battle isn't yours, it's the Lords. II Chronicles 20:15 Love and prayers, Christy Quote Link to comment Share on other sites More sharing options...
Ann Posted July 7, 2005 Share Posted July 7, 2005 Peggy, so sorry you are having this "anxious" time. Maybe things will sound much better after you have a chance to actually speak to the doctor. Often, reading these results is worse than it seems. I'm praying this is the case!!! I had to smile when I read the part about him not wanting to hear anything about it. Boy...does this sound familar!!!! I'm saying prayers and crossing fingers...and toes!!!! Quote Link to comment Share on other sites More sharing options...
Kasey Posted July 7, 2005 Share Posted July 7, 2005 Oh Dear Peggy, I am another who has no info about brain radiation. BUT my heart aches for you at this time. I worry about your not sleeping - about your stress. I want to be able to make SOMETHING better and can't. That is a helpless feeling for me. I am thinking and praying for you and Don right now. My prayer is that you can be calm until the report is explained to you. My prayer is that there will be a GOOD plan in place. My prayer is that you know we, here, are all STANDING 4 HOPE right behind you. ((((Peggy and Don)))), Kasey Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 7, 2005 Author Share Posted July 7, 2005 Thank you everybody. I'm still waiting to hear. I talked to the Novalis nurse again this morning. She's just wonderful, so I know she will keep after him until he studies the films and calls me, or has her call me. My lunch break is over, so got to get back to work, but as soon as I talk to someone and get the plan, I'll let you know. Also, I did have a hard time getting to sleep and had a restless night, but I'm feeling more calm today. Thanks again! Love to all, Peggy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 7, 2005 Author Share Posted July 7, 2005 The nurse just called. They are going to treat five areas. I asked if that meant the others were too small (which they probably are), and she said that he didn't say. He just said "We're going to treat 5 areas." She also warned that he has to be fitted with the halo at 7:30 a.m., but won't get wheeled in for the treatment until late afternoon. I told hubby we'd take a varity of pillows and find something that works so he can be more comfortable. For anyone curious what the halo looks like, here's a link that contains a picture: http://radsurg.ufl.edu/patient/understanding.html I'm feeling better now. Thanks again for listening. Love to all, Peggy Quote Link to comment Share on other sites More sharing options...
David P Posted July 7, 2005 Share Posted July 7, 2005 Glad to hear you're feeling better, Peggy. It must be very difficult for you and Don right now, but it sounds like he's in good hands. Unfortunately the choice to go ahead with treatment is the best of two evils. Take care, and make sure you get some "Peggy Time" in there as well -- it will help you deal with the stress and worry of it all. David P. Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted July 8, 2005 Share Posted July 8, 2005 My husand had 13 tumors removed from his brain in 3 seperate "sessions" of Gamma Knife. the 1st 8 were done after he had one round of Whole Brain Radiation. I would never have agreed to WBR but he needed something while we searched for a Doctor who would use the GK on that many tumors. Anyway, He had 8 done and then 5 more showed up a couple of months later so he had those done as well. Our doctor thinks nothing of it and has done as many as 40 tumors on one person! I hope your doctors will go ahead with the procedure. Keep us all posted! Trish Quote Link to comment Share on other sites More sharing options...
Don M Posted July 8, 2005 Share Posted July 8, 2005 I am glad you are feeling better about things Peggy. I hope the treatment brings good results. Don M Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 8, 2005 Share Posted July 8, 2005 Hi Peggy, So glad to hear you are feeling better. I pray for good results for you hubby. I know you will keep us posted with how things are going. Good luck!! Maryanne Quote Link to comment Share on other sites More sharing options...
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