Guest NowakowDA Posted June 22, 2004 Share Posted June 22, 2004 Well! I feel like someone just kicked me in the stomach, real hard. Took Mom to Santa Fe today for her PET Scan. When I arrived, there was a call from Dr. Wong her radiation oncologist. Apparently Dr. Rabinowitz, the medical oncologist read the MRI Mom had done Sunday June20th. The cancer has spread to her brain. Dr. Wong said she has a tumor in her brain. He said that he will now go after the tumor in her head first, then attack the one in her lung. In one of my posts, I said that the hardest thing I've ever had to do was to accept the fact that I might loose Mom to cancer. I was wrong. The hardest thing I've ever had to do was tell my Mom that the cancer had spread. We see Dr. Wong tomorrow to see what happens next. Dr. Kahn, the radiation oncologist in Santa Fe who did the PET scan said Mom's confusion and dis orientation was probably caused by the tumor in her head. He gave her Dexamethason. He said it would reduce the swelling. I keep asking myself, what next! Don Quote Link to comment Share on other sites More sharing options...
Ven Posted June 22, 2004 Share Posted June 22, 2004 Don, I'm sorry, for this new information you were given. I'm sure some members more knowledgeable than me will be along with advice for you. I was wondering all day how you two were doing on that trip. Take care and keep us informed. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted June 22, 2004 Share Posted June 22, 2004 Hello, Don, I know that news of a brain tumor-in any form-is like being kicked in the stomach, but I wanted to assure you that many of us have brain mets (or in my case a benign brain tumor, but a tumor none the less) and once treated go on to live with a good quality of life. Our Karen from California was just recently treated for a brain met with surgery, and though she went through a rough patch she appears to be doing well. Please try to hold on to the hope (I know...it's just real hard to do). Will keep you and your Mom in my prayers. Quote Link to comment Share on other sites More sharing options...
SandyS Posted June 22, 2004 Share Posted June 22, 2004 Praying for you and your mom - don't loose all hope though, these things can still turn around.......... Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted June 22, 2004 Share Posted June 22, 2004 So very sorry to hear about your Mom. Sure hope they can find something to help her. All my love and prayers to your Mom. Sharon Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 22, 2004 Share Posted June 22, 2004 Like Fay and the others have said, this is discouraging, but the brain met is only ONE brain met and that is good news. One brain met is easier to treat and often can be completely destroyed, especially if it is relatively small. The decadron will work wonders. My husband had an excruciating headache which led to his diagnosis and had it for continually for about 3-4 weeks. Within less than 24 hours after his first dose of decadron, his headache disappeared and it has not returned - 10 months later. Four out of eight of his brain mets are still there, but stable and not now causing any problems at all. I asked my husband's onc in Sept. last year if he thought my husband could beat this. His response was that some have, but he would feel a lot better about it if he only had one brain met. Keep telling yourself that your mom has ONLY one brain met - NO PROBLEM - and convey it to her that way as well. Hope that helps. It will be ok, Don. Have faith. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 22, 2004 Share Posted June 22, 2004 Don, this must be so hard on you - one thing after another after another. Please don't give up hope. Brain tumor's are survivable. I don't know if this will help you but 25 years ago, I had a huge aneuryism (an artery that gets weak and blows up like a balloon) that ruptured, spilling blood all over my brain. They never thought I'd live much less work again. I did have problems but after abut 8 months my IQ was tested and I scored just under genius. I know it's hard but try to concentrate on your mother returning to her self - her personality - after the doctors attack the tumor. Cat Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 23, 2004 Share Posted June 23, 2004 Don, Poor guy, you're trying your hardest and this beast is throwing more than you feel you can catch..... Well, the trip to Santa Fe for PET is done. You have a rational explanation for your mother's behavior. This, too , is treatable. Hang in there, there's an extra hurdle in there wasn't there last week, but your mom with the doctors' help can attack this, with you on her side. Do not be too discouraged, for this is a setback, not a reversal. Know that I feel for what you're going through, and you and your mother are in my prayers. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
tess Posted June 23, 2004 Share Posted June 23, 2004 Don, You are so right, its hard to deal with when we hear of more bad news. I pray for God to give you strength now to take care of your mom and be strong. She is lucky to have you for a son. God Bless. Tess Quote Link to comment Share on other sites More sharing options...
Guest NowakowDA Posted June 24, 2004 Share Posted June 24, 2004 Well! Right now still looking for some good news. Yesterday, I took Mom in for her appointment with Dr. Wong. She does not have one tumor in her brain, she's got two!. Before her appointment, Dr. Wong showed me the the dye contrast series of the MRI. In the back of her brain there are two tumors. Dr. Wong was only interested in the tumor on the right side of her brain. He pointed to what looked like a misshapen black circle with a white outer edge. He pointed to it and said, “that tumor is still growing.” He said the white ring represented the area of the tumor that was still getting blood. The central dark part of the tumor was dead. Dr. Wong said that the center of the tumor is so thick, that blood can't reach it and it died. But it is still growing from the outer edge. The other tumor was a different shade of grey, but there was no white ring around it. Now Mom has to have WBR. She will get about 15 treatments spread over three weeks. Dr. Wong said that if she does well on the WBR, then he will begin an aggressive treatment of the mass in her lung One step forward and two steps back. Dr. Wong has said that he can not cure her cancer. All he can do is to try and “control” it. What he was really saying is that this disease will eventually kill my mother. He just can't saw when that will happen. Don Quote Link to comment Share on other sites More sharing options...
Nushka Posted June 24, 2004 Share Posted June 24, 2004 I am sorry you are having such a hard time and that your mother's news is not good. Listen to the ones that have had WBR and have done well. It may be a very long time before you have to bid farewell to your mom. Enjoy your time with her. Nina Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 24, 2004 Share Posted June 24, 2004 Don, You are getting way ahead of things here. I don't understand your statement about one step forward and two steps back. There is no doubt about the fact that your mom could die from this disease, but there is also no doubt about the fact that she might not. Some do and some don't. We don't know for sure why some do and some don't, but that's just the way it is. If you are reading the other posts on this website, you are reading posts from many survivors who even have advanced cancer, but they are still here and still winning, even the elderly. Your mom has as good a chance as any of the rest of the survivors on here. You need to think more positive. From one caregiver to another, whether you realize it or not, the way you confront your mother with this disease is going to greatly determine the way she mentally fights against it. I'm not one of the people that believes that it's ALL mental, but I am definitely a believer that mental attitude can greatly influence how a person feels physically and how hard a person will fight the disease. Come on now. Be your mom's cheerleader. I think that's probably what she needs right now. Just my two cents. Smile and take your mom out for a hot fudge sundae. Love, Peggy Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 24, 2004 Share Posted June 24, 2004 Don, I do NOT mean to make light of your current situation. With that disclaimer, here goes: You do NOT "know" that this disease will kill your mother. There is a probability that it will, but it is NOT a given. You will not know what will kill your mother until her eventual death, just like all the rest of us here. As far as I know, there are STILL beer trucks out there... Many on the board are being treated for cancer, not cured of it, but living with it. It's not all bad just because it's not all good... Sounds like the doctor has a firm grasp on what is happening and good thoughts on how to deal with many possibilities. Keep feeding your hope, it's NEVER hopeless on its own, it's doubts and fears that allow that to build. Take care of yourself and enjoy the time you have with your mother. Nothing like a mortality enforcement to wake us up to what is really important in life... No one lives forever yet many of us fail to realize that that means EVERYONE and that there is no "Best if Used by" tag on our loved ones. I am glad that you have this time with your mother, I hope that her treatment is a resounding success and she goes on to live many, many years with you - just so you can remember this time when she's driving you completely bonkers with her SANE mind! My best, Becky Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 24, 2004 Share Posted June 24, 2004 Don, Settle down, and take a deep breath. That's right. Breathe....... There's a lot to be said for attitude, glass half full or half empty. Only one of your mom's brain tumors is concerning the doctor. Three weeks of WBR was prescribed, and now you know why her behavior was off. Then you can go back and deal with the primary mass. You need a day off, my friend. At least get yourself a special treat to eat, plus a good book or rent a movie. Call a friend on the phone with whom you haven't spoken in quite a while. Try to shake loose some of the tension. You have to, otherwise you'll snap, and what good will you be then? I like the idea of the ice cream sundae. Better to bring the fixin's in, then you can have seconds. There ARE people here who have had their brain tumors shrink or disappear, likewise with their primaries. It ain't over til it's over, and , Don, it ain't over by a long shot. Meanwhile, we're here for you. XOXOXOXOXOX Prayers always MaryAnn Quote Link to comment Share on other sites More sharing options...
Pamela Posted June 25, 2004 Share Posted June 25, 2004 Don -- I know what you're going through. When the diagnosis is fresh, everything feels overwhelming and it's hard to sort it out. You feel horror, fear, helplessness, more fear. I remember the physical reaction I had to my dad's diagnosis. I couldn't eat or sleep or focus on work or anything else. It was like all the breath had been knocked out of me. And for a few weeks it seemed that all we heard was more bad news. You are doing the right thing by posting here and reading the other posts. It will also help you to do as much research as you can -- on the disease, on treatments, on medications, etc. That will lessen your feelings of helplessness because you'll begin to understand what the doctors are saying and be able to participate fully in your mom's battle. The panic and fear you are feeling now will become manageable as you continue. You will learn to celebrate every small victory and feel hope. Please keep in mind that medical professionals sometimes give you worst case scenario so you won't get your hopes up. Well, get your hopes up anyway! Hope inspires. Hope energizes. Hope gives you the will to keep searching for answers, researching new options, fighting with everything you've got. Your mom may have some trouble hoping by herself, so she will look to you. You're doing a good job. Keep fighting. Everyone here is a resource for you and a fellow warrior. Yours may be one of the wonderful, uplifting stories that someone else will read in the months and years ahead. Pam Quote Link to comment Share on other sites More sharing options...
Guest NowakowDA Posted June 25, 2004 Share Posted June 25, 2004 What is Steroid myopathy? They gave Mom Dexamethason. Said it was a generic version Decadron. Mom is having conversations with a 200 year old dead indian named Corn Planter. Then there are her invisible friends who come to visit her. At least she's not alone. You would figure that these lazy bums could at least help with the house work while they're here. Some invisible friends these are, at least that's what Rudy the green dragon told me last night. Don Quote Link to comment Share on other sites More sharing options...
karen335 Posted June 26, 2004 Share Posted June 26, 2004 Hi Don, It's Karen in So. California. I had a brain met removed on April 6th, 2004. It was a 3-1/2 hour surgery. After surgery, I went to recovery for 2 hours then to ICU. I was in ICU for 1 hour and I got so hungry, they started bringing me solid food. My nuerosurgeon came in soon after and saw I was eating and asked me, did we do surgery on you today. He was amazed at how well I was doing. I also was and still am on Decadron. Some of the side effects are hungry, moodiness, weight gain and a few others I can't recall. I was on a very low dosage, at the most 6mg a day for two days then dropped to 2mg per day. I am now down to .5mg per day. You can't just stop, one must gradually reduce dosage. I had stereotactic radiation where the tumor was removed. They offered WBR, but I said no. Just keep a positive attitude and your faith in the Lord strong and your mom and you will get through this bump in the road. As Fay said, she too has a brain met, thank goodness it's beneign and she is doing well. There are many people on this website that have or have had brain mets and are doing very well. Did her doctor suggest surgery to remove them? Each person's response is different. PLease keep us posted on how your mom is doing. She is in my prayers each day... God Bless, prayers and gentle hugs, Karen Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 26, 2004 Share Posted June 26, 2004 What is Steroid myopathy? I don't think it would have anything to do with hallucinations. It's more like muscle problems from steroids. Skeletal, I think. Then there are her invisible friends who come to visit her. At least she's not alone. You would figure that these lazy bums could at least help with the house work while they're here. You would think. Geez. But you can never tell with these invisible dudes. Cat Quote Link to comment Share on other sites More sharing options...
Pamela Posted June 29, 2004 Share Posted June 29, 2004 Steroid myopathy -- in nonmedical terms -- is steroid-induced weakness in the muscles of the arms, legs and neck. In my dad's case, he was taking (at the direction of an oncologist) 16 mg of Decadron daily for almost 3 months. Because he had a lesion on the cerebellum, which affects coordination and movement, doctors assumed his muscle weakness was caused by the brain tumor. He had whole-brain radiation that shrank the lesions considerably, and that dosage of Decadron was completely unnecessary. No attempt was made to decrease the dosage -- or even check the dosage. He became almost completely incapacitated before it was discovered that he was taking WAY TOO MUCH Decadron. His oncologist had simply forgotten to ramp him down to a lower dosage. (He is not taking Decadron at all now and there has been no recurrence of brain tumor symptoms whatsoever.) I live in Kansas City and Dad lives in West Texas. I visited him in the rehab hospital this past weekend, and he is still pain-free and does not have any breathing or other cancer-related symptoms. It makes me physically ill to see his continuing weakness and helplessness and know that it was caused not by cancer or cancer treatment but by carelessness on the part of his oncologist. Perhaps even worse, the steroid myopathy has cost him the opportunity of trying chemotherapy. Decadron is a wonderful med when used appropriately. But be very careful about the dosage, know possible side effects and watch for them, and do not try to decrease the dosage or go off of it without medical supervision. My two cents worth. Hope things improve soon for your Mom! Pam Quote Link to comment Share on other sites More sharing options...
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