Candy

I LOVE to hear good news. Your post was uplifting. Keep up the good work Ray!

Hi Don, Tell Lucie I sure hope she is feeling better soon! I hope she and you both get some well-deserved rest! She will be home with you before you know it! Saying prayers for both of you!

I believe it is the steroids! Hugh is absolutely not himself. I am nervous leaving him every single day. I spoke with our doctor about it and his reply was that the steroids were necessary and he prescribed lorazapam for Hugh to take. That does help some. This is without a doubt the worst thing that Hugh and I have had to deal with to date. He knows he isn't thinking right and that makes him even more depressed. There is no "normal" emotions for him right now. He is either over-the-top happy, sad, angry or depressed.

Hi Tim, We are all in this fight together, this board has been such an emotional lift for me. If you can, you should come here often to read the many success stories. You and my husband are both undergoing radiation for brain mets and Kathy has been a huge help to me as we progress through this. This thing is beatable!!

Oh Carleen - you need about a million hugs. I can't believe all of what you are having to deal with. You and Keith are so young and should be having the time of your life. I don't have any advice on how to get through it. I only know you WILL get through it because that is what we do. For some reason I get up every morning and get through the day that the night before I was sure I wouldn't make. At the end of the day I crawl into bed and I realize that Hugh and I have actually managed to enjoy parts of it and have had moments of cancer-free enjoyment. I also have times when I am REALLY jealous of other people who are lucky enough to have healthy spouses when its all I want. When people who have healthy husbands try to tell me how to handle this I am often angry inside thinking what the heck do they know anyways? Sometimes I am really ashamed about feeling that way, but I think its human nature. Deep breaths, positive thoughts and loads of prayers. I will be praying for good scan results.

Hugh seems better today. He still isn't his old self, but he seems less hyper today than he has been. Maybe his body is adjusting to the Decedron.? I am hopeful that is the case!

Hi Kathy, Great news that Tim is home. Its so much better to be home than in the hospital. Keep me posted about Tim as he goes through the radiation and steroids. I think it helps to compare notes. I hope all is well this morning. It's great news that your family is finally there for you - you need it!

What great news - HOORAY!!!!!

Hooray for good news! Ray is right, we all need it. And the news doesn't get any better than that, remission is what we all want to hear!

Sending prayers and well wishes for your Mom and you both!

Terrie, Enjoy your quiet time away. It sounds wonderfully relaxing and therapeutic!

Maincoon, You so quickly became part of this family and I looked forward to seeing your posts everytime I came here and when there was no post I worried about what was going on with you. I hope time is helping you heal. Margaret must have been quite some lady. Her picture is wonderful - it is nice to see it! Please keep posting.

Hugh is a little over half-way done with his radiation. He is just not himself. He complains about feeling foggy most of the time this is much worse when he is tired which I guess would be expected. The steroid mood swings are one of the worst things we have dealt with to this point. I spoke with the nurse practitioner yesterday who says the steroids are necessary and suggested he start taking adavan to combat the sleeplessness and the mood swings. Sometimes it seems to me that he is drunk. He dwells on things that before would NEVER bother him before and even gets weepy. If I try to explain to him that he is overreacting he just gets really angry or really sad. He doesn't sleep at night and I think when he does doze off he dreams and he can't tell the difference between what was a dream or what is real. That seems like a medication thing to me. Has anyone had any trouble with radiation making their thinking process foggy? I have already asked about steroid problems and I have to ask again if anyone had extreme reactions to them. Has anyone ever been on Prednesone rather than Decadron?? Hugh has been on Prednesone before and it didn't seem to bother him. I am pretty sure the radiation is working because again last night Hugh's face was perfectly normal feeling and I know he wasn't dreaming because at that point we were both awake. During the day it isn't numb anymore but is very tingly. He has more trouble with his speech now because the tingling bothers him more than the numbness. His tongue feels in the way. The radiologist did tell us that his symptoms would get worse before they got better. The swelling is going down in his arm and everything but his behavior seems to be going in the right direction. We have to go have his blood levels tested again tomorrow for the blood thinners and if Hugh is still not improved I will ask AGAIN.

Cathy, This must be heartbreaking for you. You have been a wonderful support for your Dad throughout all of this. I can tell from reading your posts that you love your Dad so very much. Sit tight for a couple of days, your Dad might just be depressed and may change his mind about trying the Iressa. My uncle refused treatment for colon cancer and changed his mind within a few days. If he doesn't change his mind and you can't gently persuade him, I know you somehow will find the strength to help him through this. Where do we find this strength anyway? People tell me I am a strong person, I don't feel strong but I get through each day somehow and even manage to have good times with Hugh. Sometimes I don't even realize that we have had a great day until after its over.

I wasn't actually going to even post this, actually I wasn't even thinking about it being good news worth posting, then I thought we really all need to concentrate more on the good stuff and maybe less on the bad and these last couple of weeks haven't been very good. Hugh was euphoric this morning when we got up. (If he wasn't on these damn steroids he would have been merely pleased). He woke up in the middle of the night and said he laid there for a couple of minutes and wondered why he felt different and it dawned on him he could actually feel the left side of his face perfectly. I asked him if he was sure he wasn't dreaming and he was sure. This morning it is numb again but tingly. So now we know that the radiation is probably working and also that the nerve is probably not broken forever. At least I would think that would be the case since he had feeling in his face for a while last night. Also the swelling in his arm is not as bad as yesterday. I guess that means that the blood thinners are working. Giving him the shots isn't bad at all and it makes it so much better for him and me also. Neither of us wanted to have to go to the ER twice a day, and he was really uncomfortable with VNA coming in to do it. I think it made him feel like he is an invalid. Not that he should. So, this seems to be the lift he needed as he has been really depressed for the first time and seemed like he might be thinking about giving up. The blood clot seemed to be the straw that broke his camel's back. Today is better.

Sam, Keep on battling! As Hugh and I continue our fight against this nasty stuff I keep on reminding myself that tomorrow could be the day we have a cure! Attitude is everything!!!!!

Hi Peg, Hugh took oxycontin for pain and for us it was a wonder drug. With his excrutiating pain from his back mets which percoset suddenly stopped controlling the oxycontin (20mgs 2x/day) started working after a couple of days and he didn't even need the percoset for breakthrough pain. He had no side effects, no drug haziness. Early on he took prednesone on a couple of different occasions and both times it was great. He felt good, his energy and appetite increased. NOW he is on decedron (sp?) and that is a different story. He is a mess. He is either overly nice or extremely angry and you just never know what will set him off. I think the overly nice is him trying to ward off the angry. His speech isn't quite right and though it more resembles an narcotic high to me, that could be from the brain mets which made the entire side of his face numb. The radiation Dr. told us his symptoms would get worse from the radiation before they got better. His stomach is a mess and he is also depressed. He also complains that his head just isn't clear, but again is that from the steroid or a combination of blood thinners, radiation and steroids? I don't know. Good luck, I hope the oxycontin at least works as well for you as it did for us!

That is good news Dave, I know when Hugh and I got "stable" reports we weren't always thrilled and when I posted here everyone would reassure me that it was great. Keep up the good progress!

Though that probably wasn't funny at the time, it sure is a great chuckle now. I seemed good to read something uplifting and funny. Just goes to show you WHY its a good thing that most of the time the techs won't give you any information. Keep the good news coming!

THANK YOU!!! I feel so much better now. I will talk to the doctor about it tomorrow but just knowing that it is something that can happen makes me less anxious. He is either overly nice or overly angry every minute of the day. I think when he is being overly nice its because he is trying NOT to give into the anger he is feeling. Its a little bit like he has had too much to drink. THIS SUCKS! He takes them with food and if food isn't available he drinks a glass of milk. The druggist told us yesterday that sometimes the doctor will let you take Maalox first though she couldn't advise us to do it because she said you have to get the doctor's permission because Maalox blocks the effectiveness of some medicine.

Has anyone had adverse reactions to being on steroids? Hugh is taking 5 mgs of Decedron (sp?) 4x/day. This week actually we are decreasing it to 3x/day and next week to 2x/day until he is off of it. BUT, he is a mess emotionally. I have never seen him like this. He is more than irritable he is have horrible mood swings and any little irritation will blow up into something huge. I am assuming its the steroids as it began about 2 days after he started them. We are seeing the doctor tomorrow about his blood clot and I intend to discuss this with them, but in the meantime I wondered it other people had trouble with it. In addition to the mood swings its destroyed his stomach even though he is taking stomach meds with it. They will have to do some heavy selling before I let them put him on this stuff again. He has been on Prednesone before and this doesn't happen. I want him OFF this stuff and I am feeling pretty helpless because I know I can't just take it away because he has to come off them slowly. I am discouraged and so is Hugh.

Hugh's left arm swelled up over the weekend so I took him to the ER on Sunday. He has an "extensive" blood clot in that arm. Yet another thing to worry about. We were at the ER for over 6 hours which to me is really unforgiveable. I know they are busy (but I have to say yesterday they only had about 3 other patients come in while we were there) and I try to be understanding, but they spent probably less than an hour actually treating him. We got there at a little before noon and never got home until 7:30. At one point I went out to find a doctor to tell him Hugh had meds he had to take and was overdue for and they were meds he had to have food with. Their response was to order Hugh a tray of food at least. They wheeled him down for an ultrasound and we waited in that hallway for almost 1 and a half hours for the technician to come in. I guess he was home and on-call. The orderly came back a half-dozen times to see if Hugh was finished before the technician even got there. THEN the technician scanned Hugh's leg by mistake. Hugh didn't say anything because he has never had an ultrasound before and he thought he was going to scan his left side for some reason. Someone else popped into our cubicle to set Hugh's ankle (whoops wrong person) and then they sent some poor woman in who thought she was going to see her husband. They just led her to our room and said "right there" with a hand gesture and left. You should have seen the look on that woman's face. At one point a nurse came in and said she was going to start an IV. When I asked her why she was starting an IV (at this point we hadn't spoken to any doctors) she got a little vague saying the doctor would be in to talk with us about the scan results but she had seen them and thought he would probably want a line started and then left without doing it which caused me to panic wondering what exactly they found with the ultrasound. I will be darned if anyone is sticking Hugh even one more time unless its necessary. Which, by the way, it wasn't because it turned out he didn't need an IV or even blood work. Another time she came in and I told her Hugh had port access and she complained that if we wanted to use the port she would have to get an IV nurse. By the end of the day we learned that his port will have to be removed because it is on the same side as the clot and now unusable. That stinks! It was just extremely frustrating. Hugh is tired from the radiation, his stomach is totally messed up from the steroids and he is irritable from them as well, his arm was uncomfortable and he had to sit in that room for most of the day. So, after hours of them trying to decide if they would admit him or not. At one point they said yes but they called our Onc who said it wasn't necessary so we ended up going home. I have to give him 2 shots each day of blood thinner (in his stomach) and he is taking Coumodin (spelling?) 1x/day. We have to have his levels checked on Wednesday. We had the option of either going to the ER to have the shots 2x/day (FAT CHANCE), having VNA come in (Hugh wasn't thrilled about that at all) or teaching me to do it. I am not really uncomfortable with it so I thought I would go ahead and do it because it was the option Hugh was the most comfortable with. We went to the ER (Express Care Unit) for a lesson today and they let me give it to him. Its not so bad. Thank you for letting me vent! You really know how much this board helps when circumstances make it so you can't get here daily!

Hi Kathy, We've talked about this before, but I wanted to touch base with you again since you asked. Hugh's symptoms were very much like sinus for the first couple of days. Small headache, watery eye, stuffy nose and a numbness under his cheek. Sinus meds seemed to take care of the headache but not the rest of the symptoms. Over the course of just a few days the entire left side of his head became numb. I understand from the radiologist that the symptoms differ depending on where the met is located. I don't know about you, but I always have this inner battle going on. I always call the doctor but I always DON'T WANT to call him because if I don't know it, its not happening. It certainly does wear on you.

Please let Katie know that there are lots of extra prayers and thoughts for her and Jesse. I am just hating to hear this bad news. We are thinking about you guys!!!

We also left the radiation onc's office feeling 100 percent better than when we went in. Last week when we found out about Hugh's mets I thought we had just been given a death sentence. I was so pleasantly suprised when the radiologist told us that the success rate was high AND that there are other options if this doesn't work (gamma knife and another I can't remember). He spent almost an hour with us explaining the chances of brain damage (almost nil) and long-term side effect (almost nil). Our only worry is that he told us that Hugh's facial numbness may never go away depending on whether or not the nerve is "bent or broke". Hmmm... I wonder why Hugh didn't have to have tatoos? We were rather expecting that but no one even mentioned it.