TAnn Posted December 3, 2004 Share Posted December 3, 2004 Hey all, I just heard from my doctor regarding my first brain MRI since completing WBR on Oct. 15th. First of all let me say that I saw my doctor on Wednesday to get the results of the MRI and chest CT. He did not have the written report for the MRI, but did tell me that the chest CT is stable. The numberous nodules in the left lung are stable and the primary tumor in the right lung is stable, no new growths. That being said, he calls me today and tells me the report on the brain shows growth and progression..... How is this possible? I really thought that since they were so small that they would have disappeared! How can they zap you 10 times and have nothing work? You can probably tell I'm upset, but the good news is that they are all still very small and not causing any side effects. However, it's hard to look at the "good side" right now. My doctor is referring me to the brain and neurological dept. at MD Anderson for a consult. He thinks they may want to do stereotactic on 1 or 2 that may be in a problem area. I'm really worn out and really don't feel like going through more procedures...... TAnn Quote Link to comment Share on other sites More sharing options...
stand4hope Posted December 3, 2004 Share Posted December 3, 2004 I'm not sure what to say to this TAnn. I don't think I've heard of this happening before. I do know that when my husband got his 6-week MRI after WBR, they said it was standard to do this MRI, but that the tumors really wouldn't look much different because it took more time to get a clear reading of the actual shrinkage. I do know that I cried right there on the spot when they showed us the pictures because they looked exactly the same to me. In your case, I don't understand there being "growth". That just doesn't make sense at all. Hopefully MD Anderson will have a different spin on the results. I'm sure you are really upset, and I understand that you are sick and tired of all this. Give yourself a day or two to work through it mentally, and I bet you will be ready to attack this once again. All my love, Peggy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 3, 2004 Share Posted December 3, 2004 Boy, TAnn, I am just so disappointed too. This is sad news. You have been through the mill. What Peggy said. Sit on it for a bit and see how you feel. See if there is any more energy hiding in the corner of a pocket somewhere. This is a lot to take in. My love to you and prayers are being said for you today. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 3, 2004 Share Posted December 3, 2004 TAnn, I am so sorry at the news of the brain mets not being affected by the WBR. I hope your consult with M.D. Anderson finds a viable alternative to deal with this. You are in my prayers. Don Quote Link to comment Share on other sites More sharing options...
sharyn Posted December 3, 2004 Share Posted December 3, 2004 What can I say... something just seems very wrong with the results of the MRI. I am in agreement with the others to try to "hold it together" until you hear what is said at MD ANDERSON. There has to be some kind of explanation. In the meantime, I am praying HARD.... Love, Sharon Quote Link to comment Share on other sites More sharing options...
TAnn Posted December 3, 2004 Author Share Posted December 3, 2004 I don't think I was clear in my post that I am currently (and always have been) being treated at MD Anderson. In fact, it seems I'm making the rounds to all the different departments. I'll be seeing the brain/neurologist probably next week and hope to get some questions answered then. (It is probably right around the corner from my thoracic oncologist otherwise known as my primary care oncologist) TAnn Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 3, 2004 Share Posted December 3, 2004 Ann, Hang in there. I will certainly keep you in my prayers. Maybe someone over there will be able to shed some light on this? I hear you about being tired, tired, oh! so tired..... Been there...I know weary when I hear it. You will rally after you digest this new information. You'll do what you have to do. Know that I care, XOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted December 3, 2004 Share Posted December 3, 2004 TAnn, Sorry you didn't get better results,don't blame you for being upset.Stable in the lung area is good,but now we gotta get the rest of it (small or not ) gone.Hoping and praying that they come up with something that does the job. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 3, 2004 Share Posted December 3, 2004 TAnn, M. D. Anderson isn't a shabby place, yanno! I'm sure they will help you find what is to be done to help you. We're all on your side. Di Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 4, 2004 Share Posted December 4, 2004 TAnn, Doesn't radiation continue to work for some time after cessation of treatment? I am so sorry that the news wasn't good. It must be very tough to have gone through the WBR to find out it didn't do the job. Have they mentioned Temodar? If there are only a few they can do the sterotactic - Earl's rad onc said on up to 6. It just stinks that when you thought you could have some time off that the whole darn thing may begin all over again. Wish I could wave a magic wand, wish I could do it for so many of my friends here. Love, Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted December 4, 2004 Share Posted December 4, 2004 TAnn, Please don't lose hope. I afree with Ginny, radiation continues to work long after it treatment ceases. Perhaps the size difference is due to the angle taken of the nodules. Its ok to be upset. This news has thrown me for a loop too. Your lung nodules are stable, and you have no symptoms from your brain mets. These are good signs. I will keep you in both my prayers and well wishes. I hate that you must go through this. but you are not alone. There are 1600 people here praying for you. TAnn, please come to us with your fears, your pain, whatever you need. I wish I were there to hold your hand when you see the doctor. Know that you will be close in my heart and always in my thoughts. Much Love, Cheryl Quote Link to comment Share on other sites More sharing options...
Nushka Posted December 4, 2004 Share Posted December 4, 2004 TAnn, I don't have brain mets but its my worst fear, so I can sort of imagine how upset you are. It hasn't been long since you finished your WBR so there is probably still some results from that coming. I hope that they can do sterotactic surgery and get rid of those darn things. You are in my prayers, as always. I pray that this setback will be taken care of soon. Glad you aren't having symptoms though. I agree with Peggy. Take a few days to "get your wits about you" and take a deep breath and go for it again. Meantime, maybe a hot bath with some soft music and candles will take away some of the edge. Becky has convenced me that water therapy is a good thing. I will be waiting to hear good news from you. Nina Quote Link to comment Share on other sites More sharing options...
shineladysue Posted December 4, 2004 Share Posted December 4, 2004 (((TAnn))) , Hugs to you TAnn!! I'm so sorry, you need to go in for more, but isn't it a good thing to have more than one doctor's opinion ? Try to have positive thoughts about this. The rest of your scan results sound great. Know that all of us are there with you in spirit. God Bless you, sue Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 4, 2004 Share Posted December 4, 2004 TAnn, Disappointment for the WBR, but for the lungs it is good. The only way to clear the subject, is asking how long it takes for the radiation to works, and if any got smaller, you will have to ask for a written comparision from before and after, not just a verbal one, keep us posted. J.C. Quote Link to comment Share on other sites More sharing options...
carrie Posted December 4, 2004 Share Posted December 4, 2004 TAnn, Hang in there, I know that is sometimes easier said than done but maybe the neurologist can put a different spin on things. I am going throught WBR now (on my 12th treatment, I have a total of 20) and it is no fun. The side effects from the steroids are worse than anything. I would ask about the new oral medications they have for brain mets, I can'tremember the name right now, I will be looking at taking them after my WBR as an adjunctive. Good Luck with Neurologist and let us know the outcome. Carrie Quote Link to comment Share on other sites More sharing options...
carrie Posted December 4, 2004 Share Posted December 4, 2004 TAnn, Hang in there, I know that is sometimes easier said than done but maybe the neurologist can put a different spin on things. I am going throught WBR now (on my 12th treatment, I have a total of 20) and it is no fun. The side effects from the steroids are worse than anything. I would ask about the new oral medications they have for brain mets, I can'tremember the name right now, I will be looking at taking them after my WBR as an adjunctive. Good Luck with Neurologist and let us know the outcome. Carrie Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted December 4, 2004 Share Posted December 4, 2004 Tann, Hang in there girl. We all know how hard it is to do. I will keep you in my prayers. Take care! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 5, 2004 Share Posted December 5, 2004 Terri, I have been wondering how you been doing. I cannot imagine the many emotions that you are feeling based on the test results. Here is what I have been told. Radiation Oncologist - Just had my 4 wk check up this past week. He does not want to do a MRI until 3 months after treatment. He is thinking late January. While I did not want to have the test before or during the holidays (barring no symptions), I think that three months is too long. When I question him on it, he indicated if we saw something at two months that we didn't like that he wait another month and retest because the radiation is still working. Neuro Oncologist - This doctor is young and very aggressive. He has done two gamma knife procedures on me. He would prefer to see a MRI done at 4- 6wks. With the second gamma knife, the spots did not change when the follow up MRI taken 6 weeks afterwards but have since gotten smaller. I cannot remember the results from the first procedure but to say the lesion continue to shrink for months after the procedure. Thoriac (sp?) Oncologist - This doctor is the chief of service at Memorial Sloan Kettering. He has always warned me not to get anxious over the first MRI results after the gamma knife procedures. He has indicated sometimes things will get bigger before they shrink. While I know that gamma knife is different than WBR, he was very comfortable with waiting 8wks after the whole brain to get the first MRI. I will question him this week about 3months although I think that I will have the MRI done in early January. I hope that these words help a little bit. Please know that you are in my thoughts and prayers during this scary time. Maureen Quote Link to comment Share on other sites More sharing options...
SJAS Posted December 5, 2004 Share Posted December 5, 2004 You've gotten some good advice and I'm glad you're going to be getting more opinions. Has anyone mentioned a triple-dose MRI. Steve had a couple when they were considering gamma knife for him. They really provided a much clearer picture of what was going on. Going to be saying lots of prayers for you TAnn. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted December 5, 2004 Share Posted December 5, 2004 Darn it all! I wish you hadn't gotten any bad news at all!! As for MD Anderson... they are supposed to be great. You are in my prayers. I hope this is easily remedied. I know you wanted a break. Darn Darn Darn. Lisa Quote Link to comment Share on other sites More sharing options...
elnodel Posted December 6, 2004 Share Posted December 6, 2004 TAnn, Hope you'll get some word soon and know what you have to go through -- yet again. It's so disappointing to think you're through, only to find out that there's still more. But at least there are options for you there and you know you're getting the best treatment. When is your consultation? Let us know what they recommend, and in the meantime, keep your chin up and your fighting attitude -- it's the only way to get through all this! Ellen Quote Link to comment Share on other sites More sharing options...
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