Spring 2014 Rads
Comments
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faerywings - I took an hour and a half for me, three tries. I'm now done with 20 of 28 and doing pretty good. Skin is tanned (some red blotches) and I'm using aquafore to keep it moist but so far so good.
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Oh Grace, you must have the same luck as me.
Awesome news about how well you are holding up!
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Faerywings - mine took about 30 minutes yesterday. Today I go for #1. Out of ???? I never asked - we only talked about standard protocol v the study. I am assuming 30 sessions but do not know if there are boosts. I really did not ask a damn question to my RO - I just want to be done. He said somethings that made me nervous about my "cancer" that no one had ever said so I shut down. I know no cancer is a good cancer but I felt like he was telling me I that my outcome was not so great.
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Hi everyone
Happy to say my drive from Atlanta to Charlotte was smooth and totally uneventful. I am SO happy I came. Lucia and I have totally fallen in love with each other. Her whole face lights up when she sees me -even if it's only been 2 minutes., and I am sure mine does the same. She is very "in to" The Mickey Mouse Clubhouse" like we were in to the Beatles back in the day. They sing a song at the end of each episode -Hot Dog, Hot Dog, Hot Diggety Dog - we play the episode once, and that song over and over- she bounces, laughs , claps and "sings" along. It is absolutely priceless. I am having so much fun, I decided to stay an extra day. Then I have to leave - they are expecting more company this weekend. I am very happy to say that I am not considered or treated like company when I am here. On the down side, I still have not heard a word from the RO about a start date. I know I told them I didn't want to start this week, but I was very clear about wanting a call as soon as possible to let me know my plan of treatment was ready. 5 weeks today since my CT and markings.
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Flagirl - The tats are simple. Just 3 tiny dots. The tech put a drop of dye on my skin and then did just one needle stick in each place. I don't have to fuss with markers that fade or tape that comes off.
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Flagirl - I really hate needles, but I got through the tats with flying colors. It really does hurt more to stab your finger while sewing then it does to get the tats
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Anne - glad you are enjoying the visit with family!
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I had my simulation yesterday. I opted for tattoos on the sides and marker in the front, a happy compromise. The tattoo hurt more than I expected, I guess I will not be getting any tattoos soon because I am a whimp. My RO has me taking curcumin during rads. She ran a small study on it in relation to radiation dermatitis. And they found that the burns were less severe in people who were taking the curcumin. But the study was super small only 30 women.
http://www.ncbi.nlm.nih.gov/pubmed/23745991 But I'll take any help I can get to avoid bad reactions. I don't know yet if I'll have 3d conformal or IMRT. They will run both plans and see if the IMRT would be superior.
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faery, I don't think it should take too long. It only took my techs a few mins to get me marked and line up the laser beams on me that first time. I finished 14/21 today. I only have two full breast txs left and then the 5 boosts, but I was pretty tired today. I can safely say I think the honeymoon period is over haha. I am unable to nap or anything during the week, my job is intense and stressful and I am sure that does not help things. But I made it through and am looking forward to the weekend as well. My skin has held up amazingly so far. There is just a slight discoloration where my surgical scar is on my breast. No redness, no itching, nothing -- yet!
We have tornadoes in the area tonight! Yuck!!
We will indeed get through this.
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anne, so glad you are enjoying your visit! Family time is good for healing! I hope you can start rads soon.
Thank you all for all of your input and helpful info. I am done with 3 out of 33! It's good to hear that most of you are holding up well.
BigD, stay away from those tornadoes! I used to live in Wichita Falls...went thru the 1979 tornado. Don't miss them at all! Be safe. Luckily, we get very few tornadoes here, but they do show up once in a while. It's that time of year.
My RO's office has two techs and usually one intern/student when I go in. The intern is who gets to set me up while one tech supervises and the other watches on. The student I had today was a lot quicker than yesterdays, but I guess I am their practice to become professionals, so I don't mind!
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My sim went amazing well! Got more sharpies and tattoos and I am all set for Monday, The hardest part was trying to breath naturally. I kept taking shallow breaths and then needing to take a bigger one. I asked the team how to best do it and they said to breath normally. That's good b/c I think I would have made myself hyperventilate on monday!
Anne- oh my, I don't know how you are dealing with that kind of wait time. That is brutal!! I have been waiting since monday to hear from my Lyme Dr about my last round of blood work and whether I am going to re-start my IV abx, and it making me Have a wonderful visit with that fam!
BigD- tornadoes probably scare me more than any other natural disaster. Be safe! Rest up this weekend and good luck with next week.
Travlmom- I am sorry to hear that you shut down. I can't say I blame you one bit. But don't forget that sometimes what we imagine to be is way worse than reality. Many years ago, when I was pog with my dd, I was exposed to some illness, can't remember what it is now. When I spoke to the dr-I-didn't-like-from my group, I asked what would happen to my baby from them. He told me he didn't want me to worry so he wasn't going to tell me. What?? The only thing I could focus on was that my baby was going to die. Turned out that that it was something much less that that.
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OK, I am getting ready to start my radiation therapy. Had my simulation done on Wed. Now have 7 permanent black ink X's and lines across my 40 D chest.....Radiation handout suggests 8 preventative creams that can be used, but nurse marked out 4-8 saying that I don't need the more expensive, or prescritpion ones and I should use either Aquaphor, Calendula Cream or Cetephil. I asked her about using Vanicream and she said I could bring in the info and see what Doctor thinks.
being a fair skinned redhead with a lot of allergies to medications, I am not opposed to paying for anything if it will keep me from having side effects. Others were: Miaderm, Radiagaurd, Castor oil, and then for scripts: Biafine and X clair. I found somearticles saying X clair was really good.
Any advice from seasoned Veterans?????
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What is curcumin? isn't it a spice? Did you need a script????
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@travlmom: I'm sorry that you're feeling down based on what your RO said. I understand perfectly because I've had things said to me too that have really bothered me. I'm sure others here have had similar things said to them (or heard things), as well. I hope you're feeling better!
I've had 4/30 rads. I'm behind in my schedule because of cruddy weather conditions. I have a 100 mile commute each way and with this awful spring weather we are having here in MI, I had to cancel again today (after canceling my first rads last week for the same reason).
I've had no problems except for some vague, achiness in my back, ribs and neck. Maybe it isn't related to the rads but it sure started at the same time!
Hugs to all.
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Macy - I would mention the pain to your team. I was having pain in my right shoulder, outside the treatment area, after the first two weeks of treatment. It turns out that I ended up with a mild case of tendinitis in my right shoulder from the position. My team worked quickly, but being in the position 5 days a week still took its toll. My RO recommended Motrin to help deal with the discomfort. The Motrin helped, but I still feel discomfort when I raise my arm above my head. My last treatment was yesterday. I was told to keep an eye on it and call if I need to before my 1 month check up.
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Hi ladies. Keepthefaith, it's nice to see a familiar face. I just started this morning. I was so emotional when I left. Very strange. I feel tough as nails most of the time. Sometimes my body just breaks through the surface (in the eye area) and makes me come to terms with the fact that I have and am continuing to go though a lot. This is such a roller coaster. Kathy.
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Red: I'm entering my last week of radiation treatment -- 30 of 33. I used aquaphor since the first day and didn't notice any significant changes in my skin's color or texture until week 5 (of 6 and 1/2). I also have lupus. I had discoid lupus first, which affects the skin, and now I have systemic lupus as my kidneys leak protein. However, my last nephrologist visit had my protein leaking down to 0 which I think is a result of the chemo (at least something good came out of that). I finished 4 rounds of TC on 1/8/2014. Sorry, lost focus, back to radiation. The roughest part is going everyday. I live in NY, NY and commuting to the hospital is the worst of it. You stay in the actual treatment room for less than 10 minutes. The first few weeks they treat the entire breast. You just pretty much lay there and you don't feel a thing. I'm close to the end so I receive more localized treatments where the focus is moreso on the lumpectomy area. I stay in there less than 5 minutes now. It feels like a long process, because it is, but gotta do it. I have a size 44DD breast and my cancer was on my left side. I am an African American female and from my under arm on down is pretty dark -- about 3 shades darker than my normal complexion. Underneath my breast -- it's dark, the skin is irriated, and peeling a little. Sometimes I get shooting pain in the left breast but nothing unbearable. What's really weird is that my breast has dots like a dalmatian -- NOT SEXY. Lol. The RN told me those were hair bumps and they would go away once the treatment ends. What? I never had on my breasts before. Geez. Oh, and your arm starts to hurt from being prone in the same position for a while -- day after day. When I looked up radiation skin care on this website, I noticed cornstarch can be used on the breast but lightly -- like a dusting. I think I'm going to try that and see how it goes. Good luck to you and hang in there. You can do it!!!!! God has us covered.
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Redheaded1 - curcumin comes from the spice turmeric. No prescription needed, it's a supplement. Ask your radiation oncologist before taking any supplements. Most ROs don't want you to take anything. My RO even wants me to use only certain kinds of soaps. But I can understand that radiation already irritates skin and you want to use super gentle soap.
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Remember that rads is trying to kill cells. Taking some supplements that promotes healthy cell development works against what your treatment is trying to accomplish.
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The simulation goes by pretty quick. They will show you how to sign in, grab a gown, change and where to wait to be called (kinda lile a sub-waiting room). They will call you have you lie on the table, and make adjustments to you and the machines to line you up for treatment. They will run a scan of your breast area so they can verify alignment. Then they will place markings on your breast. You will be given your scheduled times for next week. Mine fluctuate from day to day and week to week. Nothing to fear, pretty easy. Good luck
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Tammibaby--thanks for the info. I have not been diagnosed with Lupus, but I have had an elevated ANA Titer result every time its been tested since I was 30... so I mentioned it to the RO during our first consult and she said we would not do the Boost at the end because it might cause the skin to thicken up like the skin on your thighs... I get those little bumps you are describing from sun exposure--so maybe it is just a little skin break down. if so, it will eventually go away. They keep telling me (nurses) that I need a loose fitting cotton bra, but they are hard to find. I bought a nice one, then I swelled after my lumpectomy and now it is too tight.
The WAlmart sports bra's just don't provide enough support. I am thinking about trying a nursing camisole thing?
I hear you about the arm being sore--my surgeon didn't give me any exercises after my lumpectomy and the RO wasn't happy, so Mon a.m. I am to pick up some from her to start doing. I am going to a cancer center in central IL where I live for my treatments--I was a volunteer gardener working on the butterfly garden outside the treatment rooms for 2 years before I was diagnosed. I had been in the builidng before, but walking in as a patient was almost more than I could bear. I think I have 2 wonderful doctors here, but they are so very busy.
So glad to find this discussion board---I have a lot to learn and this has been such a blessing to read all the tips and advice and encouragement.
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Hi Inks---I thought that was what it was-- I took it for a while thinking it would help with my joint pain, since it is a "warming spice". I only took about what would be put in a food dish if I cooked it. My doc's said the same thing about soaps---only basis, dove, or ivory. No facing the shower when I bath, only let water run down the front, no "soaking" in the tub, and no heat or cold (heating pads or ice paks) on the breast/treatment area. No deoderant except ones that have no antiperspirant---told me there is one at the health food store Icould try. No swimming in chlorine treated pools. If they would tell me taking the breast off would eliminate the need to take the Aromatase Inhibitor like it would eliminate my need for radiation, I might call the surgeon back up and say lets do round two.......I have always been in charge and called the shots, and it seems like this is the hardest thing---I can't control it, it is controlling me, at least for the rest of the year.
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Mikesgirl--thanks for posting about your emotions. I know you will do just fine. However, You have just made me realize when I cried all day Wednesday that it was normal..... I went for simulation and it took longer than I expected and I was prepared for 3 tiny tats and got 7 large black marker X's . I looked at myself in the dressing room at the Cancer Center and if there hadn't been two other ladies sitting on the bench I would have lost it. I cried off and on all day. and like you said--- I am tough as nails about just about anything. I am waiting for the phone call about when the "verification" and rads schedule will start. I cried when I was first diagnosed too--one minute fine, next minute in tears, not doing one damn thing related to the cancer. A lady at the mall put her arm around me, told me she was a survivor and "ITS THE C, Honey, It's the C" that makes you emotional. I have treasured that moment and wisdom ever since.
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Red: Cry as much as you want. Those are your tears and that is your body. Let yourself feel however you do in that moment. I usually feel 'cleansed' after i cry. This fight is not easy, but it is doable - with the grace of God and a lot of patience. We'll walk you through it.
I forgot to tell you about the hot flashes. I'm waiting on line in the Post Office right now and am about to do a strip tease. Think I'll get arrested? ;')
Praying for your continued strength.
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I did not let myself go there but I totally know how you feel. Not having to go through chemo first, I think that the radiation and going to the cancercare centre made my cancer dx finally feel very real. Seeing the radiation equipment and all the other people with cancer and finally YOU are a cancer patient. I put on my social worker cap and visited with everyone else to keep myself out of the role of cancer patient. It got me through it, but I had those feelings and could have had a complete breakdown. A good cry or two or three is very healthy, I just did not want to do it. But I definitely have had my tears too. Just trying to choose my moments
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Thanks TB90 and Tammibaby---I really believe if God Brings you to it, He will bring you through it--and in the end it is all all right, and if its not all right, its not the end........
Hot flashes--- I remember those from my hysterectomy in 2006. Nothing like Menopause at 3000 mph..... right after I was released from hospital, My elderly Aunt who was "caring" for me. drove me to the pharmacy (Walgreen's) to pick up my Vivelle Dot Estrogen Patches. She decided to shop while I stood in line with what seemed like the entire town waiting for the RX. I felt the hot flash about to start---so I started squirming, then I took off my winter coat, then I took off my pullover sweater. Then I picked up a stack of sale flyers and started fanning and thinking some of these old people with their walkers should just let me butt in line. I remember looking down at the concrete tile floor and thinking how good it would feel to put my naked body on the cold floor---and then I thought this is what being a " middle aged crazy " feels like..... Then, when it was my turn, the dang pharmacist said "you know you only put one of these on at a time don't you???)
My Med Onco wants me to do Arimidex after my rads is done---I think he and I will cuss and discuss this more. I said are you asking me to do Menopause a 2nd time and he said these hot flashes aren't like the ones you had post surgically---I love this guy but really, he only knows me now, so how would he know ??????
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So...a bit more on what to expect. I'm now 5 days post rads, and I'm now beginning to think the worst is almost over. I was fine until about the day before the last one (a Sunday, so no zaps). Then on the day of my last zap my skin broke down in the most charred place and began oozing what looked like pus (doc and nurse insisted it's normal and just skin sloughing off). Anyway, larger areas broke down Tues, Wed, Thurs, and I went back to the RO on Friday to check if it was ok (not infected). RO said it looked typical and said she thought today or tomorrow (day 5 or 6) would be the worst. It's pretty painful and I'm sort of holed up at home today, but parts are drying out and beginning to peel, which I think is a good sign. After several days of Vaseline embedded gauze, which kept everything moist, I've let it air out, and while it has tightened up a bit, I think this was the right choice. I can't touch the broken skin to put lotion on, but where the skin is intact and new, I'm putting Aquaphor or Biafine.
Trying to control the pain is the current issue, as I can't take the big stuff during the day. Although a little depressing that it gets worse after you're done, I can't imagine hauling myself on that table with my chest looking like this! So, I'm glad the worst part came last...I do see the light now.
TB, can you wear a bra yet?
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Thank you for the info, Lojo and sorry you are having to deal with the issues. I am wondering what is in store for me as I round the corner towards home. I have one more whole breast on Monday and then 5 boosts to go. My skin is doing very well so far on the RadiaGel I was given. I feel twinges of pain now and then but nothing bad really. I have been able to stay working but I am going to schedule the week after next off because I feel I will need the time. I can always change my mind and just take a day or two off, so we will see. This part of my treatment has been very tolerable although have felt a bit tired at work the last couple of days. Today I am up and running errands and not feeling too tired, but I always feel better when I am at home anyway. Don't we all?
Hope your healing continues, Lojo, and that the pain eases soon.
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Lonnie713 - re:Lymphadema - my RO gave me an rx for PT and I went for an evaluation/education last week. I have some range of motion issues with my surgical side so will start PT this week to help with that and to monitor the possible Lymphadema flare up. I am also getting an Rx for compression sleeve and glove to wear when exercising, doing yard work or flying. You may want to ask your RO for a PR eval.
Had my planning session, got tattoos - not bad but I now know I won't be getting an artistic tattoo. Can't imagine sitting still for all that. Will start radiation on 4/16. Thanks to all who are ahead of my schedule for sharing tips!
Hang in there all - we will be done with RADS and can rest a bit so we can enjoy summer!
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animallvr- met with OT on Tuesday for eval. She said that my lymphedema is mild. I do have scar tissue which is causing a tightening/pulling feeling when I raise my arm. It feels like my veins are protruding down my arm. She gave me some at home fixes for that and my range of motion. My first session with her is on Monday. For now, it's 2x a week for 4 wks. She did mention eventually getting the compression sleeve. She was very encouraging about my treatment plan and outcome.
Good luck to you.
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