Newbie Posted August 27, 2003 Posted August 27, 2003 Hi Jenny, When do you start the brain radiation series? I'll be sending good vibes your way. Also you mention working shorter hours during the radiation. Have you worked through your treatment, or just gone back recently? My oncologist said no work for 3 months after treatment completes, and I envision myself going bonkers. Sure would like to have your oncologist (I think). Quote
Jenny G. Posted September 1, 2003 Posted September 1, 2003 I've been clicking on the "new posts since last visit" button and somehow missed this. On my very first visit to oncologist, he suggested that I go on disability. I decided that just wasn't an option for me. It's a mixed blessing. It may have been a relief to have him tell me I needed to quit, but then when I stay at home I have so much more time to think and get depressed. There have been many days especially lately, when I don't get there at 8:00 and have taken a few days off when I just can't deal with it. I'm fortunate to have leave time saved up and work for understanding people. Also, there is no one to cover my work, and a lot of other issues to consider, mainly financial. In a perfect world, I think I would quit my job, hire a housekeeper and a cook, and spend lots of time at a favorite spa or resort. Wouldn't that be great! I think stress is a big factor in all of this and it's probably best to take it easy and get lots of rest through your treatment if at all possible. My doctor is really good about letting me make my own decisions, for better or worse. Jenny Quote
Newbie Posted September 1, 2003 Author Posted September 1, 2003 Hi Jennie, I admire your strength. There was no way I could have continued working as I was fairly sick and maximum stressed. My concentration was nil, other than brooding. I completely understand why you would continue working, I didn't have that option because I would have been totally useless and they would have insisted I go on disability. But I think I would have been a lot less depressed had I continued to work. Not very helpful to my employer perhaps but better for me. Quote
bengel Posted September 5, 2003 Posted September 5, 2003 Hi Jennie, Was it your radiologist oncologist or your general oncologist that recommended disability? I had 15 days of brain radiation after chemo and surgery. Lost my hair twice. My students thought I looked like Telly Savalas. My radiation technicians were kind enough to come in 15 minutes early so I could have radiation before I went to school. Nothing was said to me about taking time off. I did get tired but I think I would get depressed too if I just sat around the house. My hope is in the Lord, Bud Quote
Jenny G. Posted September 5, 2003 Posted September 5, 2003 duplicate posting, sorry, it must be the steroids! Quote
Jenny G. Posted September 5, 2003 Posted September 5, 2003 That was my medical oncologist. I was just diagnosed and had all of the treatments still ahead of me and you know lung cancer is an automatic approval and you can't know how you'll tolerate treatment. Anyway, I'm glad I was able to continue working, now that the chemo and chest radiation are behind me, this PCI is easy. The fatigue got awfully bad while having chemo and rad and I had to be hospitalized for a few days due to low white cell count and developed infection. It definitely helps to keep busy if you can find the energy. I think he was trying to prepare me for what might lie ahead. My work took all of my energy and my house just went to shambles.You're lucky to look like Telly Savalas. Me, well my son says I have a bean head and look real crazy. I have about a half inch of hair now and will soon be losing it again. After this, I hope to get a long break. I find your case very interesting, you've definitely beat the odds and you're a great inspiration. Jenny[/code] Quote
Remembering Dave Posted September 5, 2003 Posted September 5, 2003 Jenny, this is Karen, David C's wife. He started his PCI on Wednesday. By Wednesday evening he had a terrible headache - he said it felt like his eyes were popping out of his head. The next day when he went in the nurse said he was having brain swelling from the PCI (after just one treatment!) and put him on Decadron, a steriod. He still has the headache, a little bit, and last night couldn't sleep because of the steriod. Steroids also make him a little crazy, he was on prednisone last Fall for his asthma (which the lung tumors triggered, which we did not know at the time he had) and went psycho on me. Fortunately his entire family was there for Thanksgiving so I had some backup . . . !! Anyway, the chemo and chest radiation, which he had concurrently, did not bother him all that much except for the fatigue, but this PCI seems to be making him feel worse than anything. It sounds like it's not bothering you any. Are you having any headache? Take care, Karen C. Quote
Jenny G. Posted September 5, 2003 Posted September 5, 2003 Karen, Yes, the same thing happened to me. Bad headache evening of first treatment, nausea and vomited. Queasy to stomach each day after, but not much more trouble with headache, then got 3 day break over labor day weekend and felt much better. Tech seemed puzzled when I questioned them on 2nd day about my symptoms and said they didn't think it was due to radiation especially after just one treatment. Since I was doing better, I just let it drop, then saw doc this past Tuesday and asked him about it. He said "not usual" to have vomiting with brain radiation, but he could see how it might happen. I think he also suspected swelling caused the headache and perscribed low, short term dose of steroids. (4x2day, 3x2day, 2x2day, 1x2day). I didn't take the 4th one on day 2 and hoped it would level off at the lower doses. They are having a powerful effect on me too. I sure don't have to worry about the fatigue. I'm feeling pretty hyper and weird. At first I thought it was good, but now I don't know. I actually had 2 margaritas at lunch today to try to calm down. Don't know how smart that was, but it did help some. I'm not suggesting that though. Anyway, I'm doing ok and plan to take advantage of the energy boost to get some things done this weekend. Only 2 more treatments left and it has really gone by fast. These are strange drugs to be sure, but I have been so fatigued through most of my treatment, it's nice not to come home and hit the couch right away so I'll put up with it for now. Keep us posted on how it goes with David. How many does he have to do? Best of luck. Jenny Quote
Newbie Posted September 6, 2003 Author Posted September 6, 2003 Hi Jenny and Karen, It's interesting that the oncologist wouldn't have mentioned headaches, nausea, etc. The very first time that the med onc and the rad onc talked to me about brain radiation they both mentioned headaches and nausea. And everytime the subject came up after, they'd remind me. I just had my first brain rad this afternoon (a couple of hours ago) and they gave me an information sheet that mentions nausea and headaches as well as things to watch out for and call the dr. So far I'm a little headachy, hopefully that's all that will happen. Hope your hubby feels better soon. Jenny, is the steroid they're giving you Decadron? Quote
Jenny G. Posted September 6, 2003 Posted September 6, 2003 I'm so glad to hear they went ahead and started your treatments. This is good news. I hope you do well. How many will you have? I'm surprised too that I wasn't warned about these side effects, they acted like they weren't all that common. I was only told about the fatigue and hair loss. I thought the doc said decadron, but the bottle says dexamethasone, is that the same thing? Did they give you anything to take, or will they just wait to see what happens? Keep us posted. Jenny Quote
Newbie Posted September 6, 2003 Author Posted September 6, 2003 Hi Jenny, I guess it's a small thing but my hair was just starting to fill in again. Oh well, that's why I bought a wig. Yes Dexamethasone is Decadron, I'm not sure but I think Decadron may be a type of brand name and the other is the pharmaceutical name. I'm having a total of ten treatments, so nine more to go. How many are you getting? Quote
Jenny G. Posted September 6, 2003 Posted September 6, 2003 10 for me too and only 2 left. I'm sad about the hair too, just got a full head again. Quote
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