Justakid Posted October 4, 2004 Share Posted October 4, 2004 I don't know what to do and need advise. My bio (below) tells you my dx and treatment plan. I had Gemzar/Carboplatin on 09/27/04....had an allergic reaction to the carbo. Rash, throat swelled and started to pass out (everything seemed to slowly fade away). The Nurses were able to counteract the reaction with steriods/benadryl. Yesterday I started having Optic/silent migraines (the kind where you see flashing lights or "rick rack"). I had two yesterday and woke up with one this morning. I previously suffered from migraines and had an MRI done last year before all this cancer stuff started. THe MRI was fine, I have 20/20 vision (two years ago I had lasik and they check my eyes every 6 mths). Since I quit smoking I have not had a migraine. Kind of makes me think my PCP was right and that smoking was causing the headaches. I have only had three of these "silent" migraines before. Could treatment be bringing these on? It's strange that I have had 3 in two days and previously only had 3 in as many years. Last month I had a CAT Scan of my head because I had "normal" headaches and everything was fine. We blamed all the pain pills and stress for the headaches. I have my additional Gemzar chemo today and this will complete round 2 of the 4 full strength chemos we are planning on doing. I don't mind telling you that I am scared....these chemo treatments seem to killing me! The last one I had was Taxotere and the pain was so bad I couldn't take it, plus I ran a fever and my throat swelled shut from a throat infection....was in the hospital for 4 1/2 days. I know that treatments are rough and I accept that, I can even take the pain. I'm young and strong. But it just seems that everything is going wrong and I don't know if I can handle 2 more treatments. What if we only did a total of 3 treatments, if that enough? Because of my last reaction, I assume we will change chemo drugs again for treatment 3 (I see my Dr. next week) what's could happen this time? I know I am asking alot from you.....but any advise would be greatly appreciated. Can silent migraines be brought on by stress? God knows I'm stressed about these treatments. Thanks for your advise! Quote Link to comment Share on other sites More sharing options...
Addie Posted October 4, 2004 Share Posted October 4, 2004 Beth.....I'm not Doctor Joe....but I can tell you I had numerous optical migraines around the time of my diagnosis...and I KNOW they were stress related. I've not had one since June (my dx was in May) until yesterday....when I had the rick-rack, as you called it, but NO headache. And this was the day after returning from a very hectic week out in Arizona, running around making decisions re: the house we're building. But in the interim months....once I got into the routine of treatment, I was pretty relaxed and those migraines had disappeared! In your situation, with as much trouble as you've had with chemo and treatment....your stress level has to be high...and I would think your migraines are definitely related. I hope Doc Joe comes along to address your other questions AND I'm holding good thoughts for you and future treatments. You've had more than your share of troubles so far...so I'm sending you lots of positive thoughts for things to improve! I know it's not easy...but try your hardest to breathe...to relax a bit...and see if those migraines don't stop. I really believe that when the anxiety level is high....the optical migraines are sure to follow! When they did occur, I found that closing my eyes and relaxing for 15-20 minutes usually took care of the worst of it. Will be thinking of you Beth...hoping things settle down for you and go much more smoothly than they have in the past! Best of luck.... Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted October 4, 2004 Share Posted October 4, 2004 As a migraine sufferer myself, I just want to say - how on earth do you handle all this chemo stuff AND a migraine at the same time?! Gosh - the mere thought of it almost puts me over the edge. I would tend to agree that the migraines are probably stress-induced . . . I'm sure you've been worried sick about today's treatment, and that would surely lead to one. Also wanted to just wish you the best of luck with today's treatment. For goodness' sake - could you just surprise us this afternoon with, "Things went great. I was in and out of there in no time. No reactions. Life is good." PLEASE?!?! Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 4, 2004 Share Posted October 4, 2004 Beth -- we had a long post about these "silent" migraines not too long ago -- I was getting about one a month from March until June, and then I got 3 in July -- about once a week. I had never had them before in my life and the first time it happened, I immediately called my oncologist, assuming that it was brain mets. They told me it didn't sound like the "profile" and it was most likely a migraine -- but to let them know if it didn't go away (it did). By June, I saw a nuero-optimologist, who assured me they were simply "occular migraines" (silent migraines"), complete with flashing, zig-zaggy lights that would move across my vision, lasting about 15-20 minutes each. He said, most likely triggered by stress, or possibly a food allergy. He listed wine and hard cheese as the usual food suspects. Neither of which I eat. Oddly enough, in August, I discovered that I was having a "sensitivity" to soy (through some food allergy testing) and stopped eating it. ( I had previously been eating about 2 servings A DAY of soy -- waaaay too much according to my nutritionist and my body built up some sort of intolerence). Would you believe that I haven't had an silent migraine since? I'll try to dig up the old posting on this subject for you! Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted October 4, 2004 Share Posted October 4, 2004 Hi Beth, Sorry to see you are still having problems. I was hoping you would be doing better. I haven't been on the board in awhile. By the response you have received seems that it is stress. This post has giving me a sigh of relief. I have had several in the last month. I'm still going to tell the doctor when I see them on the 20th. I would certainly tell your doctor also. I hope you start to feel better soon. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
MayFrog Posted October 4, 2004 Share Posted October 4, 2004 Hi Beth, wow, girl.....you have been thru the mill and back again, it seems......I'm just putting my 2 cents in re: the silent migraines....I totally believe in the stress factor. I haven't had one in a while (now watch, I jinxed myself!)......but when I did, I'd try to find a quiet, dark place and lie down with a cold cloth over my eyes....15-20 minutes usually did the trick. I'm hoping you have much better luck with your chemo this time around....sending plenty of good thoughts your way Mary Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 4, 2004 Share Posted October 4, 2004 Never realized there were so many silent migraines. I have been getting them off and on for over 20 years. I always said it looked like I had a lightning blot that was cut with pinking shears. I can go for years without them and then get a cluster of them, sometimes mutiple a day or once a month. Two doctors have told me it is stress. I too just lie down and watch tv for the 15/20 minutes it takes to go away. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 4, 2004 Share Posted October 4, 2004 Beth, sorry you are having such a tough time, you are definitely having more difficulty than typical. The migraine symptoms you are having definitely can get worse when on treatment, I don't know if its stress or not but sure could be. As far as what to do for the rest of your treatments, I'm not sure how much difference there would be between 3 or 4 treatments. Most studies have used four cycles of therapy which is somewhat arbitrary but also based on the fact that it is unlikely that there will be further eradication of microscopic cancer cells with more than 4 rounds. Will there be more killed off with 3 than 4? Not sure, probably would not make much if any difference. Have you talked to your doctor about weekly chemotherapy? Small doses of weekly taxotere or taxol is usually a lot easier than the bigger 3 week doses and might be an option.... Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 4, 2004 Author Share Posted October 4, 2004 Thanks Doc! Feeling a little better. Had my Gemzar treatment today, of course I was stressed the entire time and it was hard to keep it together (but I did!). I guess because of everything that has happened up to this point, I get scared everytime they touch me, wonder if I'm going to end up deathly ill or in the hospital again! During the infusion I got through the nausea med then during the steriods my vein collapsed and my arm swelled up. We had to start with a new vein for the Gemzar.....so far so good....no reaction. Crossing my fingers! Spoke with the Nurse Practitioner today and we have scheduled a CAT Scan of my head tomorrow, they don't think it's anything but want to be safe. Trying to remain calm about that too! I figure with as sick as I am NOTHING could grow! I see my Dr. next week for the new plan of attack, I'll bring up weekly chemo if she doesn't and see what she has to say. Thanks for your continued support and advise! It's greatly appreciated! Still wish I could come out and see you for a 2nd opinion, would be great to have a Doc that really cares (or shows it). Thank you again! Quote Link to comment Share on other sites More sharing options...
carrie Posted October 6, 2004 Share Posted October 6, 2004 Hi Beth, I haven't been on line because I too have had similar reactions to the chemo as you have had (was on Taxol/Carbo combo). I had an allergic reaction to carbo, my doctor put me on cistplatin - made me deathly ill - nausea and vomiting - he then gave me Taxol only for a couple of treatments (single doses as before) then started me on navilbene and taxol (double dose of Taxol, wasn't told that I would have a double dose until the day I got there) I had a slight allergic reaction to the navilbene (we know it was the navilbene because I had it first). I have been very ill for three weeks now, the first two weeks I had severe pain all over my body, some nausea, too weak to get off of the couch, I finally went to the emergency room and they ran some test, my wbc count was 1, they sent me to my onco for daily injections for three days to raise my blood count. I was scheduled or treatment yesterday single dose of Taxol only but my onco decided to give it another week to let me regain some more strenght. I do feel better today, have some of my strenght back. I have three more treatments to go and I am doing single doses of Taxol instead of triple doses as my onco suggested due to how it effects me. I also contemplated not having anymore treatment but thought I would finish the last three since it seemed that the double dose of taxol is what effected me sooo badly and am only getting single doses from now on. Sorry for the long post but I wanted to let you know that you are not alone and I do know how you are feeling. Good luck with the rest of your treatments. Carrie Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 7, 2004 Author Share Posted October 7, 2004 Well I made it to Thursday and I'm not in the hospital! This is a big step for me ! Made it through two weeks of new chemo treatment and stayed out of the hospital, horray! Doing ok, my throat is killing me, thank god for percocet! Most of the time it takes the edge off. See the Dr on Monday where we will again discuss the next plan of attack! Maybe weaker doses done weekly is the way to go. I'll let ya'll know. Thanks for your support! Good luck Carrie, I'm with you!!!!!!! Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted October 7, 2004 Share Posted October 7, 2004 Way to go Beth, glad everthing went good today. It's all up hill now girl. Quote Link to comment Share on other sites More sharing options...
kimmek Posted October 8, 2004 Share Posted October 8, 2004 Beth I am so glad to hear that you are doing well...I have certainly had you on my mind and been watching for your posts. I wonder how long the throst pain will last, we expected it to be gone after a couple of weeks after radiation ended, and although its much better not for Mom, she defiantly is still taking pain pills for it, but only really hurts when she tried to eat. I asked one of her rad nurses today (our daughters are majorettes together) about that and how long, and she said it definetly would not be gone completely until after chemo is done, and then maybe even 2 or 3 months. UGGGGGGGGGGGGG!!! But I told mom nad she said she can deal with the pain or anything else as long as she knows its normal or that she is not the only one. So there IS a light at the end of this dark tunnel, HANG IN THERE!!! Prayers and Love Kim Quote Link to comment Share on other sites More sharing options...
carrie Posted October 8, 2004 Share Posted October 8, 2004 Hey Beth, Way to go, glad to hear that that you and your doc are going to come up with a new plan of attack. I go back to my onco on Tues and don't know if he will do treatment or not - I am still pretty weak, it went away and now it is back and I have not had treatment in 4 weeks. I don't know. Good luck and let me know what he says on tuesday. Your Friend, Carrie Quote Link to comment Share on other sites More sharing options...
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