Winter 2015-16 RADS
Comments
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First, my heartfelt congratulations to all who have completed rads and are on the mend. You ladies are amazing! For those still on this ride, I'm with ya. Although not at all like our chemo sisters, it's still tough. We're reminded everyday of our BC experience and, for some, each day is substantially disrupted by the trip to and from. Hang in there.
All the advice on how to minimize SE's has been tremendously helpful. Hearing everyone's experience has been emotionally supportive for me in ways you'll probably never know. I guess what I'm trying to say is, thank you to all of you who spend so much of your time posting, reading and advising. You're all a tribute to our 'sisterhood'
As for me, I finished 21 of 28 treatments today. My left breast has never, ever seen a tan this dark but luckily, still no open sores or blisters. RO prescribed silvadene for the weekend days when I don't have rads. (I guess she's thinking I'm about ready to 'bloom'.........
Some of you may recall that I set up a little 'procedure' to reward myself for getting through this: four champagne flutes with 7 pink gumballs in each. My reward after each treatment was a yummy gumball. (I usually don't eat sugar so it's a real treat!). After every 7th treatment, I get a glass of champagne (well, sparkling wine.) So this evening, I toast you all with my third glass. Here's to us - rad warriors extraordinaire!
START OF TREATMENT - MARCH 15th
TODAY - APRIL 12th after 21 treatments and 7 to go
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Congrats Karen - So happy for you that you finished. Let the healing begin and hope you can celebrate in your own special way
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congrats, Karen! We'll get our last few members through this!
I haven't been in here as much now that I'm done. I'm just so sick of cancer, cancer, cancer! I've slowed way down on blogging, too, although I still have some posts to make.
I'm getting steadily fitter and stronger every week, and I've lost 7.5 pounds! *grumble* *grumble* to go. Celebratory cruise in 19 days!
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I've gained a ton of weight, too, and yesterday my RO nurse said "everyone" gains during rads....why???????
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wow...that's pretty interesting because I also gained weight during radiation...kind of strange
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Completed 14 of approx. 30 treatments (RO isn't sure of the total number I'll have)...half way there.
My radiation techs are SO awesome. I'd really like to get them something, but I can't figure out what would be good to give as a thank you. Any ideas?
I'm really tired today, it's been a super busy week with work. I had a big presentation at a client's conference yesterday which took a lot out of me. I really want a day to crash out at home and sleep, but can't, too much stuff to get done.
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I lost weight during radiation. But then I started tamoxifen, and now I'm gaining it all back.
My RO's nurse said it was important to maintain a stable weight. . . . Again with the magic 8-ball.
I'm worrying a lot about recurrence/mets these days. I have no idea why. We're moving, and I strained my back, but I'm obsessing about bone mets--every little ache and pain freaks me out. My RO said this would happen, and I didn't believe him at the time. I see him on Monday; I hope my back feels better by then!
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I feel like I'm hungrier and eating more during radiation (despite the nausea), but not gaining....definitely need more calories to heal this big burn. My weight was stable during chemo...though I had lost weight between getting the cancer diagnosis and having surgery etc. It crept back up maybe 5# in the 4 weeks in-between chemo and rads, but then went back down a few with rads and I'm still a bit underweight for me - though maybe this is my new normal weight. Hoping I don't gain a lot with Tamoxifen.
I'm having the same thoughts Kate. Hope your back feels better soon! My hip aches when I run, and actually almost all the time now, but worse with running. Sure I found out I have a labral tear right before the cancer diagnosis, but that pain was different. This is achy arthritis-like pain. Makes me wonder....
Last radiation boost is tomorrow. Dance party Saturday night!! woohoo! Back to work on-site on Monday, but going to start with half days no matter how I feel. I took sick leave yesterday through tomorrow. I need a break....and I'm sleepy. I also need to get my *stuff* organized to bring/move back home - didn't realized I accumulated so much here going back and forth for chemo and now with radiation. So many clothes spanning the seasons.
May 13th is the Red Rock Relay in Moab. Hoping my skin heals enough that I can wear a bra to protect my nipples (no breasts anyway) and the shirt I had made for it which says: "kicking cancer's ass... one mile at a time". Right now I don't want anything on my skin...it hurts and is so red and raw laterally. Ordered the Miaderm with Lido but it won't come in until Friday.
Hope everyone is rocking this week!
Andra xo
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The hydrocortisone did WONDERS for my tiny blisters!! They are no longer itchy and have calmed down. I don't know if they will still grow but at least I'm not adding to anything by scratching. I'm still using my Glaxo base cream and my skin is supple. I used it after my double mast and my scar line is beautiful. My DH used to rub it in for me so he got used to my look before I did!
Any hormone replacement will cause bone aches. I already have horrendous arthritis in every joint in my body including fingers and toes. My bone scan in February was the worst I've ever had. Now they want to take estrogen out of me??? Are you kidding? I was too ill on Arimidex so I've been off it for a week or so, but they want me to try to go back on it April 19th to see if I can tolerate it. I have Fibromyalgia and the stress of radiation is debilitating me. I, too, had a client face-to-face for 2 hours straight yesterday and almost passed out. My DH had to pretty much prop me up in bed.
BUT, I am down to single digits!! Only 8 more to go.
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DONE!!!!!!
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Hey, Kkubsky, me too! This was also my last day, although I went 6 1/2 weeks.
No one was around to hear me ring the bell, though. The next patient had already gone in for treatment when I was changing, and even the receptionist was out (sick I think, as there is always someone there). So, this message is my virtual bell.
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edwsmom, I baked cookies and brought them my last day of rads. I had previously ordered a breast cancer ribbon cookie cutter and made simple vanilla sugar cookies sprinkled with pink sugar. They loved 'em! Store bought would work too.
Andra, I noticed a lot more achiness during rads. Worst was my right shoulder because of the arm position, but I also noticed it in my knees. I'm not taking AIs yet. My shoulder and general aches started getting better as soon as I finished rads. I'm one week out and feel almost normal. My shoulder is still not 100% but maybe 60% better.
Kkubsky, BIG congrats!!! Hooray! Did you get a certificate?
Katja, congrats to you too!!! WooHoo!
Barbe, it's great to be in single digits!! The end of the tunnel is really bright now!
I track everything I eat and have not gained or lost weight. But I did eat a little more during rads without gaining. I think Andra is right - we need a few more calories for healing. And maybe the radiation is zapping some calories along with whatever else it gets
(Just kidding).
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Congrats Kkubsky and Katja23!
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No certificate or bell ringing. Just lots of happy smiles, especially mine. I have to go back next week for a skin check and then in a month for a f/u. I was told that my side effects might intensify this week, but then they should start healing. The techs and staff are all just wonderful people. Wish I met them under different circumstances!
Katja-Yay for you too!!!! How are you celebrating?
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Twinkltoz, I forgot to say congrats on the 7.5 pounds gone! Keep plugging away at it! That's how I lost mine - very slowly and a lot of maintenance months but never regaining more than 1 or 2 pounds before I started losing more. It's not easy!! Our bodies do not generally want to lose weight and our traitor brain starts tricking us into eating more if we try to go too fast.
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Congrats Kkubsky, Katja23 Moondust, and Karen! you did it! I'm almost a month out. Wearing a regular bra and feeling good! Went to Garden party. Enjoying life. Wearing sun screen. WAY TO GO ALL OF YOU WARRIORS!
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Kkubsky and Katja Congrats on finishing - Let the healing begin. I hope you were able to celebrate in a special way.
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May I add my congrats to Kkubsky and Katja23! Good for you! I'll bet you feel GREAT!!
I did 22nd of 28 today and must say I'm getting tired of these treatments. So far, skin is OK - I use Miaderm several times during the day and Aquaphur at night. My RO wants me to use Silvadeen on weekend days when I'm not getting rads so I'll start Friday right after treatment # 24.
About weight............ I gained about 5lbs during the weeks leading up to surgery. I think I ate every carb within a 3 mile area! (comfort food). I've managed to lose about 3 lbs during rads but I was also told not to gain/lose during rads so that the measurements don't change. My weight is normal so I'm not too worried but I am going to keep close watch on it now that I'm on Femara. (I've been on it almost 3 weeks and no SE's so far but it seems quite a few BCO women report weight gain with AI's).
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congrats, kkubsky and katje!
Thank you, moondust!
I gained weight during chemo, after surgery, and during radiation. I tried to get it under control between phases, but there wasn't much I could do. I was eating and not exercising.
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Congratulations, Kkubsky and Katja23!
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Today was 15/30-ish.
I'd love your thoughts on this concern I have:
You may remember that my hospital was recently hacked, taking their system down for a full week. I had just started my radiation treatments - was just 4 treatments in - when things shut down. Since then they have been asking me to come on the weekends to make up treatments I missed.
For the past two weekends I've gone in one day. So last week, I went in Sunday, Monday, Tuesday, Wednesday, Thursday, Friday and Saturday. Had Sunday off and then everyday this week.
This morning they again asked me to come in on the weekend. I'm inclined to say no. I'm exhausted. I'd really like a break.
I can't tell if they are having me come on the weekends due to medical necessity (it was really bad for me to miss a whole week and they are trying to jam treatments in to zap the hell out of me for cancer concerns) or to just get back on their schedule/catch me up to ease their scheduling mess.
Yesterday was the first day the fatigue really started. Today I woke up really sore. My shoulders, my collarbone on the radiated side. And I'm starting to feel tired/emotional about all of this.
I'm set to see the Dr tomorrow and will ask about it, but wondered if you all have an opinion on it/thoughts or suggestions of things I should be asking about it all. I don't even know the total number of treatments I'm going to be having, so at this point there's this big, long unknown path ahead of me that feels like it's stretching out forever. WWYD?
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edwsmom - So sorry for this added burden of them cramming in extra appts for you. Personally, I would say no to the extra day on the weekend. Mental health and general well-being are just as important, and having two days without rads (like everyone else normally does) seems like it would be more beneficial than the extra rad day. Of course, that is assuming there isn't any medical necessity to it (ask them and what your total txs will be), which I highly doubt since I haven't seen anyone on this board report going more than 5 days/week....and there are a lot of us here. If it was necessity, we'd all be going every single day.
- xo
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edwsmom - They asked if we wanted to come in the first weekend they were back up and running but not the second. I said no. I too was tired and really sore. I was afraid of what my skin would feel and look like if I went that many days straight. It added to the time I had to go but that was ok. I'm done now and starting to heal.
Andraxo congrats on the last boost.
Kkubsky and Katja congratulations on finishing. It feels so good to be done.
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edwsmom, I agree with Andra. Tell them no. I think your skin (and everything) heals just enough over the two day break to help you get through the next week. In fact, I'd tell them I need two days off, not one. My guess is that they are doing it for scheduling, not because it's better for you.
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Just say no. The reason for the number of zaps is due to the "life cycle" of the cancer and them wanting to destroy any growth as/if it occurs. I asked. Stopping for 5 days is scary, but hey! I had to not come in on Good Friday at Easter. The cells would be zapped again when I went back 3 days later....
I do want to add for anyone new here: Aloe of ANY kind is "just to soothe" the skin and not moisturize!! In fact, it will dry out your skin. You must, must, must moisturize heavily with a quality product.
I'm getting 9,500 gys and the "normal" is 5-6,000. They kept warning me that I was going to have bad skin damage. I have 7 zaps left and I know it gets worse before it begins to heal, but my skin is just tanned. Not even red. I started to get itchy and immediately got a prescription of hydrocortisone and my skin is not itchy anymore. I'm pleased to say the least and hope I didn't just jinx myself!
I had a new tech this morning and she was amazed at my skin. I told her I wasn't bathing every day and was using Glaxol Base. She gave me a thumbs up and said "I can't believe years ago we told people to use Aloe and cornstarch!" I see both mentioned above in the TIPS and am worried for others. Perhaps that is "old" thinking????
My heart goes out to those of you with breasts still as I can imagine heat is trapped under the bra-line and gets irritated under there.
Congrats to those who have finished!!!!!!!!!
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Barbe, you are right about under the bra line. That is my worst area, the only place that is still red. But it is starting to peel and it is not painful. My (large) breast definitely looks "cooked" and tan. It seems to be a bit swollen but is supposed to shrink as time goes on. I get a few pins and needles in it now and then.
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I got my hair cut for the completion of radiation. I ended up donating 13 inches. A new me was just what I needed.
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Nice Karen!!! I'm thinking of getting highlights (streaks...do they still call them that?) to celebrate. I want something to brighten up my gray pallor........oops, I mean green!
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Barbe I think the next step is highlights also. The gray doesn't want to let me cover it up.
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My short haircut was scheduled for yesterday, but didn't happen because the stylist was sick. I'm rescheduled for Monday after my MO appointment. It's my first cut in over 20 years. I'm nervous, but if I hate it I don't have to wait for it to grow out, just to fall out
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