August 2010...anyone starting chemo besides me?!
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Sohard - is the fan pretty quiet? the price is great, I am going to order one! thanks0
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Chemo 5 - I did chemo 5 today and talked with my onc and he would of course like me to do 6 but I talked about my cost/benefit relation for chemo vs neuropathy. He said they don't have data (have not tested) 6 vs 5 TCH for effectiveness. He also seemed slightly more reassured since I am node negative. Anyway, I am done. For me, 5 will just have to be enough, continueing on with the herceptin for a year and then tam/AI for 5 years. Honestly it nags me a bit at this point because I am one of those people who finishes things. I have worked in asthma research for over 20 years but I took a year off to do a masters in education because I 'had this dream' that I wanted to teach high school biology. Wanted to help the kids learn about the subjects I loved. The first semester I was just helper teacher then the second I taught several sections of 9 th graders. FIVE MINUTES into the first class I knew I hated it. BUT I continued for the whole 6 months and finished the program. So its hard for me to fall short of expectations. As it turned out they really missed me at my old job and it was great to be able go back!
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Cal: I'm doing tamoxifen when I finish. My onc said we'd do tamox for a while, do some blood tests to see where my hormones are, and depending on that, maybe switch over to Arimidex. I haven't researched it too much. I figure I'll cross that bridge when I get there and I don't want to worry about it until then.
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Lago: That image is very funny!!
Calam: I will be starting Tamoxifen the middle of January, have to finish rads first. Then eventually I wil be switched over to, I think, Arimidex but not for a couple of years.
Lisa: The pain in your fingers is probably the nails. Thats what it was for me and I got the red moons in my nails too. I will give you a tip. I found that the more that I stressed my nails, i.e. hitting them against the keyboard when I typed, the worse they got. I found that once I cut all my nails down so they didn't hit on anything it started getting better. A couple of them got black lines in them, but I didn't lose any and now the lines are fading.
Omaz and Ginger: If you are comfortable with your decision, then it is the best decision for you. Go on with your lives with no regrets! I honestly believe that many of us are being overtreated, you know, err on the side of caution and avoid malpractice suits.
Hot Flashes: Add me to the list. Those things are annoying! I feel like a candle, lit from the inside out. Nighttime is the worst, HOT/COLD, HOT/COLD, etc.
Cold: I, too, have found that since chemo I have no tolerance for the cold. And I have a new understanding of how much heat you really do lose from your head and a new appreciation for a wool ski hats!
To everyone finishing up..CONGRATS!!!! To those still mired in chemo SE....I hope tomorrow is a better day!
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Hi ladies,had my rad. onc. appointment today. Wonderful lady dr. spent an hour and a half with me, she was really awesome. Unfortunantly she recommended radiation for me. She said that a margin of 1mm isn't even considered a margin. She said that was to close to my rib to risk the chance of cells being left behind, up to a 20 % chance, so I guess I know where I stand now with radiation. I was sure hoping to hear that she was a 100% sure no cells where left behind and that I could get on with life and just have herceptin every 3 weeks. I probably wouldn't mind so much if tx was closer to home, it is 35miles one way and In Jan. Iowa winters can be horrible, last year we had a insane amount of snow. So just being able to make it everyday will be a trick. I am just a little bummed out, but sure I will survive this too.
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Sue-how long will it be?0
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radiation 5xs a week for 5 1/2 weeks
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Sue - snow tires equipped? chains??0
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Omaz: a good old friend who went through a hard time with his health said the most important piece of advice he could give anyone similarly situated is 'be your own advocate.' I am glad you decided to stop at 5. I am sure they never did a study on the difference between 5 and 6 because there would be no difference
I am sure you will be as good with the Herceptin and Tamox as you would have been with #6 but, more importantly, I think you will be better because you get to work with the neuropathy in a more definitive manner knowing you will not be revisiting the cause of the matter.Hats and fans! Kel- I, too, love this time of year. I love all the hats and I have some girlie knit trappers as well! In fact, just bought one at JC Penney last night with the long braids. I love the sound of the mulit-colored one you got! I am going to have to go to Five Below and check it out. I agree this is a nice time of year to have no hair! As for fans, I sleep with a box fan on EVERY NIGHT and on-and-off go the covers! The box fan is on middle speed and I kind of like the noise! The nights are the hardest with sweats. I am boiling while I sleep!
Washing the wig: a woman at the wig place said I could use higher end shampoo like Graham Webb, Nexxus, Sebastian etc... and b/c of coloring, I am already chock full of those kinds of shampoos. I did wash my wig with Nexxus and I am not really happy with the results. Have any of you washed yet and, if so, what did you use? Also, even though I don't wear it every day, I find because I sweat so much when I do I need to wash it every time. Any recommendations? I am really waiting for the temp in CT to drop another 10 degrees and then I am going to be wearing my hats a whole lot more than that expensive wig! That wig has also lost a lot of strands....$400! It has thinned a lot. Not happy!
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Iowasue: I agree about the traveling and the snow. I know Iowa is significantly more snowy than is CT. I won't be having rads until late Spring because I have some plastic surgery to do. Did you think of asking her if you could put it off until March? My feeling is if the cells are going to regenerate, taking a small break between rads and chemo is not a bad idea. I would consider asking and see what the difference is. My PS has to get in before rads so this is why I can't go until the spring but I, too, have a 30 minute ride, or 1 hour roundtrip. Plus getting in the parking garage, across the skywalk, into the hospital, down to the basement, getting the tx, and back it is 2.5 hour event. Just driving and walking is 1.5 hours! Ask and see if it can hurt. Explain you also don't want to start AND wind up missing appointments due to inclement weather. I mean, really, wouldn't that potentially be worse? I would encourage you to ask.
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Lizzy, Sue - I just read last night that it is important not to have too many breaks in the radiation treatment as it can affect the effectiveness.0
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Omaz: I did read that also, now that you mention it, in some of my rads literature I received a while back.
Sue: you also don't want to be showing up late and stressed or late from a car crash etc... as the stress alone might affect your ability to allow the tx to do it's work. Definitely call the onc tomorrow and see. I was really glad that I don't have to start it until I have 2 more plastic surgeries because that puts me in May and that is at least nice weather so I know once I start, there is no reason I can't finish. I am a little worried about more fatigue, however!!!!
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The fan is quiet... I sleep with the remote...I know where it is at all time...
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sohard - I ordered it from Walmart - should be delivered next week. I can't wait!!!!0
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I am starting Tamoxifen at end of December. Not looking forward to new round of side effects. Oncologist will see me when I am done about a month of Tamoxifen to see how I am handling side effects. Start radiation January 4th--25 treatments plus 5 boosters. Last chemo tomorrow
I don't wear my wig that much. When I bought it, the store gave me the shampoo and leave in conditioner--they said to be careful with what type of shampoo you use. I am probably wearing it MAYBE once per week---seems like a waste of money (mine was also around 400) but that being said--when I don't feel like the stares and looks--it comes in very handy.
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That is a lot to wash a wig. I am guessing your goal is to actually get the base clean. Have you tried turning it inside out and working some diluted shampoo just through the base.
The hair loss is a shame. Have you worked out how to comb your wig without hair loss. Always begin at the ends of the strands, then go a little higher until that swath of hair is detangled. Never try to comb through a tangle. It takes incredible patience to take care of your own human hair wig but you can do it.
Me, I have still not worn my wig one single time. ????????
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Ginger - I haven't worn a wig out yet, I have a couple inexpensive ones that I bought but don't like. Then yesterday I was at the cancer support center for acupuncture. They have a wig room but most of the wigs are pretty cheap. I have been looking each time I go for a nice mono-filament wig in brown and it was there yesterday. I immediately tried it and I actually like it! It has a smaller cap that fits good and I can tuck the hair behind my ears so it doesn't look very full. I will use it next month for a couple holiday parties rather than my regular cap. Wigs are wierd though, I like the idea better than the reality.0
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I am glad Jennifer Grey won on Dancing with the (non) Stars!!!!!!!!!!!! Also, speaking of hair, I think her hair is cute! Perhaps that is my next look. I can't stand the wig...it is driving me nuts. Soon I am going to be balding it!
Christina Applegate is on Conan right now 8 months pregnant! She had bc and I believe she had a bmx. I was just telling my brother how I would not have kids now for fear of passing on the "gene" plus I don't know how long I will be here BUT it says something about hope for the future and finding a cure that she is having a child. I think it is great for her. Good for her I say! Plus I can die in a car crash almost as easily as I could from bc so I should stop being so MOROSE!
Washing the wig I am going to go to the car wash with the top down on the convertible I am going to buy this weekend....MISSION ACCOMPLISHED! I hate that freakin' thing!
Omaz: I am with you: I like the idea much better than the reality with these darn wigs!
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Wigs - When I bought mine, I bought the wig shampoo at the same time. They told me not to wash it too often though. They said if you wear it every day, then wash it once a week. I've only washed mine 3 times since I bought it because I don't wear it very often.
Omaz - good for you for making YOUR decision and sticking with it. (Think of it that way.) And congratulations on being done now. I hope the neuropathy clears up soon. My onc said to start weaning myself off the Gabapentin in 1 month. Fingers crossed.
Can't remember who mentioned the Santa Hats, but great idea!!! I'm definitely going to do that for my next Herceptin - which will be my last tx before Christmas. I'm trying to think of a gift to bring the nurses in the infusion room, too. They have been so fantastic, and there are only 2 of them, so I'd like to bring them a gift. Any ideas?
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Lisa - I have been brought food for the front staff and the nurses at a couple treatments. Yesterday I made some blueberry muffins from the Jif mix adding in cranberries, ground flax, walnuts and wheat germ. They really seemed to like those and were very appreciative. A full-on gift is harder. I think they all work so hard. I sent the two women who helped me through my MRI (I had a hard time for some reason and had to keep stopping) Starbucks gift certificates.
Thanks for your support of the 5 tx! Its a little unnerving but even though my onc won't yes its fine to stop at 5 he also didn't say no I really don't recommend stopping here for you, which I think he can do.
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Wiggys and other humor What with the crazy weather in the carolinas I have all but stopped wearing my wig. It was so hot one day I felt like I was wearing a cat on my head. Tuesday the temp was 71. I go the doo rag baseball, gaila wrap, oblong scarf.
Gifts I had wondered about taking snacks to the chemo nurses. They told me last week many days they are so busy they don't even get to break for lunch. I "bead" so I've made some bracelets and snowman earrings. Taking these and let them shop/choose what they like.
Humor for my homies Last week my last group of Kindergarteners had a little boy that kept calling out and finally asked me why I was wearing a hat. I was getting shall we say aggravated and told him it was because I didn't have any hair. This adorable little girl on the back row straightened up her back and said "She has cancer". You could tell she was MAD. (In June we lost a little 8 yr old student to a rare pediatric cancer. A lot of the moms have talked to their children that were close to her to let them know my cancer is different, etc. )
Off for a major thrift/retail intervention. Will report back with bargains retreived. Beth
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Just noticed, I have no eyelashes on the bottom at all! : (
Not for nothing, but I have just about had it with the never-ending chemo side effects. Enough already!!
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Sptmm - And you finished chemo a while ago? How long ago?0
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I don't wear my wig either, it is too hot. I stick with hats when I go out and bald at home. Yesterday, I was in the back yard in pj bottoms & camisole top, nothing on my head, and one of the dogs got out of the fence, and I had to run into the neighbor's yard to get him. So I'm running around half naked and bald after my damn stubborn dog who won't come when called. If they looked outside and saw me, I'm sure they had a good laugh. Oh well, screw it, it's cancer folks.
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Omaz: I had my last treatment on October 1. The oncologist also told me yesterday that the leg pain and weakness that I still have might hang around as long as April!
Don't get me wrong, overall I feel good, but these little issues just keep cropping up and it is frustrating!
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I've never worn my wig out - just the circle of hair that goes under a hat. That's when I just do not feel like having people look at me and wonder what's going on.
Anyway, I'm cooking today. I cooked the turkey overnight - made the stuffing yesterday and that cooked in it. Now today I have sweet potatoes in the oven and the gravy and cranberry sauce are both cooling. We're going to eat tonight since DH and I won't be going out tomorrow most likely, to my brother's. Mom's going to take the kids ,but with 9 other people there and not having Neulasta this time I don't want to be exposed. Then we'll have lots of left - overs - good for me since I won't have to cook and fun for the kids.
Anyhow...so I'm having fun with "non pressure' cooking today. I don't "have" to do it which is nice; but just having fun with it. Thinking of making some cinnamon bread.
OH - and the darned base of the skull pain and jaw pain that I had with the neulasta~!? I'm having it WITHOUT the neulasta - so I guess it's the taxol, doggone it! But at least I'm not as achy, at least not yet. We'll see how tomorrow and Friday go.
I feel like my body's just done with this--I just wanna tell it "Okay - that's it -I won't assault you anymore - now heal!"
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Lady- LOL!! I love it! Yes, one day I was in the driveway doing my ab exercises on a "good" day - we have a fairly private driveway, but then we cut down a bunch of trees in the front. Well, I was all heated up from exercise and there I am writhing around on the driveway - bald with my hat off - and I happen to look over and there's a woman picking the leftovers from our garage sale at the curb. ROTFL!! I wonder what she thought!
I just remember what my midwife said to me way back when I was first diagnosed and she met with me. she was just finishing up her own chemo treatment for BC as well, so we really bonded over it. Anyway, she said that she would go out and walk her dog without her wig in her neighborhood and said "So what - I have cancer. Get over it. It's not like I killed somebody." I think we all get to that point - where our own hairlessness doesn't bother us as much anymore.....
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Finished my last chemo this morning! Went well. Feels weird to be done. Hopefully, the side effects are minimal.
Happy Thanksgiving to my American friends! I am jealous that you are eating Turkey tomorrow--I missed our Thanksgiving because I was pretty sick with my chemo...have to wait till Xmas now for turkey dinner! Have a wonderful day.
Rachel
p.s. I have lost half of my eyebrows, my eyelashes are tiny but my hair has started to grow back---granted it will be months before I have anything that I could potentially style and brush! I don't wear my wig very much at all.....now that winter is here, looking forward to winter hats instead!
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I am waiting to feel better.
Calamity, it will be interesting to see if the shooting pains are from the Taxol or the Neulasta. I do know the Neulasta acted very differently with Taxol. Seriously onn tx 2 of Taxol I began they Oxy and muscle relaxant before I took the chemo and meds to stay out front of the SE's.
I was pretty scared about ending early and my Onco is so patient and thoughtful in the way she presents info and options that I really appreciate it. Doc said if my neuropathy reverses in a week maybe a reduced dose but she looked very doubtful. I sure can't feel any reversal at this point.
May all SE stay away from Calamity, Amen
Ginger
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Lisa- Gifts- i am gonna get mine an edible arrangement, there're so cool, fresh fruits some with or without chocolate. My nurses NEVER eat out of the office- they do a buffet style lunch my onc was saying that one of the drug companies comp that.. they offer for me to eat when i am getting chemo cuz i am there so long but i've always declined0
