July 2012 Radiation
Comments
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I know. I'm so excited. Not mention sore and itchy. lol It seemed so far away and now it's here. I chose to go early in the day - 8:30 - because I knew it would make me get up, get dressed and put on make up on. Now it going to be like resigning from my job again. :-) I was diagnosed just a week after resigning my job so I didn't get to do much on my to do list. Now that I will be getting some respite from all the drama maybe I can focus on my original goals.
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babette54: Congrats on being halfway through radiation! You're right, today was my first post on this forum. I posted on the "Starting Chemo July 2012" forum earlier this summer, but I was lucky to have a low (14) Oncotype DX score, so got to escape chemo. I was scheduled for my port installation on Monday morning, and got the call Thursday afternoon. My husband and I were celebrating our anniversary in Asheville, so it gave us even more to celebrate. I feel very very lucky!
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I need to clarify my previous post. I said that I will be half done with rads next Wednesday so the congrats I got from a couple of you were a bit premature. If only it were true . . .
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TAB55: Congrats on NOT needing chemo. My onco score was 28!
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Okay, Ladies. I have a deodorant question for you:
My RO says NO deodorant under the treated arm--only cornstarch. My sister (again, radiation therapist) says I can use Tom's natural deodorant.
What have your RO's been telling you? Thanks.
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Mine says no deodorant or shaving of arm pit...boo! Unless an electric razor is used. I have never used an electric razor before.
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Belinda, Mine said no shaving, but right now, due to chemo, I have no pit hair (one of the few chemo advantages). Anyway, I purchased an electric razor on Amazon (high ratings, etc). I thought I would need to use it while doing chemo. Either I am stupid (could be) or the thing was a piece of s....t. I have never used it and will probably donate it to the goodwill or women's shelter. I never did like electric razors anyway.
Belinda: Did you opt NOT for chemo due to your onco. score?
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My RO said Arm & Hammer Naturally Fresh deoderant (unscented only) was OK. (No Antiperspirant). I'm not sweating much under that arm since the surgery, so I think I should be OK. I'm sticking with antiperspirant for the other arm. I was also told, "No shaving, except with an electric razor." I'm going to try using a bikini line trimming razor, and see if that keeps it short enough for me. I don't really want to purchase an electric razor that I'll use only a couple months, but I'm half Italian and grow an impressive amount of dark hair. It's not a good look in the summer....
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I was told no shaving no deoderant on rads side. The long hair grosses me out but its over soon. Honestly I havnt needed deoderant on that side and we have been in tx for the duration of my treatment. I havent sweated at all. The rads i think damages those cells some. Sorry for mistakes... on my phone.
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Karen, because of my onco score and my highly hormone receptive numbers (99%), my MO strongly discouraged chemo. In fact, even if I wanted it he would not prescribe it under his care. I have to trust....it's hard.
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Belinda977: Before I got the results of my Oncotype DX test, I had decided that if my score was 20 or lower, I'd skip chemo. The chemo SEs are serious, and I didn't think it made sense to risk them if there was a low likelyhood of the cancer returning. I hope that makes you feel better about your MO's recommendation.
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TAB55, yes I have been better with the recommendation. Thanks! ..PS -- I am somewhat of a control freak so trusting the docs has been a challenge. But, I have gotten better at it.
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Kyberty - Mine said deoderant with no aluminum. The gave me a small bottle of a spray called Naturally Fresh Spray Mist which works well. I had already been using Tom's and they said that was ok too.When my Tom's is gone, I think I'm going to kee using the Naturally Fresh.
I also bought an electric razor and think I irritated my skin more using that. I bought disposable razors and used those just once and then them away after each use (I didn't tell my doc though). I never cut myself and didn't get the irritation I did from the electric one. I just soaped up well and before hand. I think the electric one is going to end up in the next garage sale. I haven't had hair on my legs since I had my first child, so I won't use it for anything else. I certainly don't want it under my arms again. Owie.
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Belinda977: Trust but verify is a good approach! It's smart of you to do your own research.
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Belinda: My score was a no-brainer for me. I was fortunate that the S/E's were minimal considering what they could have been.
I bought the cornstarch today. My work wardrobe is black, white, black, black, black. (No, I don't wear uniforms--black is a very forgiving color--LOL). I can hardly wait to see what the white stuff looks like all over my clothes. If anyone needs a BRAND NEW electric razor, PM me and I will send it to you.
Thanks to all with your dr. recommendations.
TAB55: What was your score? PS--I drank TAB all through college--hated the stuff--LOL. And I was born in 55. Glad they came out with Diet Coke--which I rarely drink now anyway.
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kjiberty: My score was 14 (<10% chance of recurrence). I drank TAB when it first came out too. I thought I should since those are my initials. I never did like it. For a long time I drank Diet Dr. Pepper. I quit all sodas a year ago, and I don't miss them. I was also born in 55.
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weird, I never had that test run! When did they do it? Was it part of your pathology report?
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onvacation: After reading about it online, I asked my MO about it. First he said, "Well it's for women who are lymph node negative." After I told him that I had read that research showed it was good for post menopausal women who are ER+ like me, he agreed to order the test. They used my biopsy sample, for the test. It's an expensive test; $4000, but I only had to pay the $400 copay. It was the best $400 I ever spent!
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The rad tech was the one who told me no deodorant unless it's the Arm & Hammer natural one which happens to be the one I normally use. She mentioned one other kind I could use that I forgot. But I am not using it under that arm except on weekends. I don't want the radiation baking the deodorant in there! She said baking soda was fine too. She didn't say anything about not shaving though and they must know I am shaving.
My oncotype score was 11 and my MO still wanted me to do chemo! She said that the test was new and before the test, I would have definitely gotten it. Well what's the point of getting the test then?! So I said no and then 2 days later my BS called to say she saw the note from the MO where I was being recommended chemo and she wanted to make sure I didn't do it. She said the oncotype test was a good test. Interesting to have two docs in the same hospital disagreeing though I suppose that is pretty common. Sheis really not going to be happy when I tell her I'm not going to take the tamoxifen, but I have to do what I think is best for me. We all have to take all the advice people give us and make our own best decisions.
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onvacation: I am surprised your MO didn't order the test. Most insurance companies pay for it if your meet the criteria: "young" , Stage 1, little or no lymph node involvement. Medicare even pays for it. If you are older, they usually don't recommend it because the docs only do rads. My doc thought I was young (age 56 at time of diagnosis) and ordered it.Graced: I would not have done chemo with an onco score of 11 either. Mine was 28, which is the high side in intermediate.
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My MO said that I did not need the onco test because I had one swollen node and a biopsy prior to treatment showed it to be positive. Also, with weak ER+ and a Grade 3 tumor, she said chemo was a "must." I wonder now what my score would have been.
We are told to avoid getting our bp checked, blood drawn, injury, or bug bites to the arm where lymph nodes have been removed to reduce the risk of lymphedema. Guess what has already happened to me. I have a bug bite on my left arm. Should I really be concerned? Or, do I only need to be worried if it gets infected?
I'm still trying to adjust to the "new normal." I don't want my life to be filled with worry about every little thing that happens to me.
Good luck to all as we start another week of rads.
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Barb: hmmmm....... How can you possibly avoid getting a bug bite in the arm??? Interesting.... Good luck to you and all doing Rads this week and hopefully, that's me too!
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There is great advice on the LE tread about lymphedema. Basically when you get an injury to the at risk arm you want to rest, drink lots of water, take deep breaths through out the day, breath as full as your stomach can get and then let air out and compress your stomach as small as it can get, it stimulates the Lymphs in the stomach area, which is your largest concentration of lymphs... When your LE are is compromised and you get an injury, your body brings fluid to the arm to treat the injury and may not be able to get the fluid to leave. its harder to get it out. When there is fluid buildup you increase your risk of cellulitus, a PTA infection... When doing rads or chemo any infection needed antibiotics will slow your treatment. So they say minimize risk as much as possible. Wear gloves and long sleeves hwen gardening, gloves when dishwashing, bug spray, no sunburn, ect. I am only 28 with NO lymphs on my right side PLUS rads, so lymphedema is part o my new normal
But my arm looks normal with some work that we are doing, and over time, hopefully, I can decerase the amount of time it takes to keep the LE under control. Sorry for the rant
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Mimimacsmom: Thanks for the great advice.
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I get my sleeve tomorrow. My arm is only 1 centimeter bigger than the other but without thinking I reached out and moved a chair. By the days end my arm was swollen. I elevated it and did the self-massage for several days and it seems to have gone down considerably.
Sometimes I think it's better that I have some degree of pain in my arm. When there is pain, I think more about how I move. Being right-handed, without pain, I just reach out instinctively and do things. I don't think I'm going to ever get used to being a lefty.
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About the cornstarch & baking soda mix I read on one of the other RADS groups to put it in a sock or stocking & dust it on. They said it's not as heavy, a lighter dusting. Makes sense. As for deodorant my RO nurse is into fragrance free Dove soap & deodorant. I'm aloud to use that deodorant only no sooner than 2 hours before my RADS. I shower before I go & dont use except at work. But then I'm am only having whole breast RADS & no axillary RADS. Although the line of darker skin from the RADS goes between my 2 scars on the underarm/side of rib area/boob. The pit hair is still growing & I just clip it with a battery operated personal facial hair trimmer. Just lightly so as not to nick any crinkled skin. Works good!
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babette54: Check out this paper by the National Lymphedema Network. It was updated in May, so it's the latest theory on the subject. Unfortunately, they don't know why some people get it, and others with the same risk factors don't. Good luck!
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Thanks, Julz. I was thinking of using a kabuki (makeup) brush to brush the powder on. If only they would call me to start! Not that I want to, but again, I want to get the show on the road to get done before my son's wedding on 9/15.
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#15/34 done = 44% done
Today was my weekly appointment with my MO. She was pleased with the condition of my skin--only slightly pink. She shared with me that she thought I might get an early reaction because I am extremely fair skinned. Then she said that she is often surprised about how various women handle rads. I hope I get to be one of the lucky ones.
TAB55 - Thanks for the link to the LE paper. I found it very informative and saved it to my computer file for future reference. I hate the thought that I need to be concerned about getting LE for the rest of my life.
Karen - Did you find out when you start rads?
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Kj your welcome! I don't blame you about your ambivalence towards starting & getting done!!! Something positive to look forward to at the end of this mess!
I'm off to the GI Dr. tomorrow for the nausea. After my RADS & weekly RO appt. My regular RO is on vacation so apparently I get the semi retired really nice groovy yoga RO Dr. Apparently ALL the techs love him! I wonder what he will say about my nausea....although it has been some better. But then I have cut back & out everything that can cause acid reflux problems out of my diet. They are not gonna be happy that I'm am loosing weight. I think 4-5 pounds this week. My nipple & breast are starting to hurt too. Fatigue more & more!
I hope everyone is doing OK!????
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