SEPTEMBER 2009 RADS
Comments
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rreynolds1/Betsy - Thanks for the bra info. I have a Kohls near me so I'm going to go shopping this weekend. I never thought I'd be so excited to go shopping for bras but I'm learning never to say never.
I started using the Aquaphor also. It's quite slimy, like sloppy Vaseline but so far it's making the area feel better. I'm also going to check out a Natural Health Food Store for 100% aloe. I'm known for overwatering aloe plants and they don't last long at my house.
Does anyone get a pins and needles feeling when they get zapped? I swear I feel it when they do the right side of my breast. I haven't mentioned it to the techs yet; I don't want them to think they hae a looney laying there, but I'm throwing it out to all of you.
I read the wine article. I'm going to bring the article to my rad onc. next week when I meet with her. A glass of wine a day would be a welcome treat! Thanks for bringing it to our attention.
Cheers! And, have a good weekend!
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caphan - I do seem to sense something when I'm being zapped, but I'm not sure if it's just in my head or not? Today was #4...only 29 to go. So far so good. I'm feeling a little tired but I think it's just the added stress of a RT hour commute to and from Rads. It takes more energy than I'm use to, plus the traffic stresses me out. The rads are a piece of cake, wham bam thank you ma'am...
I'm off to Seattle to visit my ailing Mom and celebrate my anniversary. Have a great weekend everyone.
Betsy
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Oops...Echosalvaje congratulations on finishing your treatments. I'm sending positive thoughts that your SE will be minimal. It does get better once you make it through those last couple of weeks. Hang in there girl!
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Hi Betsy --and all--thanks for starting this thread--I had my tattoos today --and start 8/31 along with several others--I agree with you Betsy when work you are no longer passionate about your profession or job just get out--I have no patience for that--hopefully it wont continue--have a good weekend-- and I am still going on all the other threads to see how everyone is --it keeps me going!! take care to all!!Laura
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Well tomorrow is my first rad. I had the simulation on Friday - it went fine. The whole thing seems very anticlimactic after chemo. But we'll see.
I have a question for you guys, though. My doctor and nurses seem TOTALLY unconcerned about me putting ANYTHING on the radiated area until I feel the need for it for discomfort. Then aloe or aquaphor. But it seems like if I start the aloe PRIOR to the burning appearing, it might help prevent it. Or is that not true? I was planning to use the aloe daily after the radiation. Your plans?
Thanks in advance.Amy
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I"m curious about creams too! I heard that the doctors really treat the area after the redness occurs. There are so many radiation creams out there as well as other creams available that supposedly can prevent the side effects of the radiation.
What creams are you all using? And how do you know if they are helping? The people at my girls' radiation cream say to use it 2 weeks before starting rads.
Any advice for me? I'm close to 2 weeks before starting (have to finish chemo first)!
Pam
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Amy & Pam - the one thing my rad onc indicated is do not use anything 4 hours prior to a treatment. They said after treatment is fine but not before. I felt tenderness day one...not bad..but none the less I started using aquaphor day one. I don't think you need to use anything prior to starting rads...it's to help the damaged tissue - not prevent the damaged tissue. Ask your doctor for input if in doubt.
Amy - good luck tomorrow. It is a piece of cake compared to chemo. I did have a little bit of a harder time the first treatment because they had me hold a specific position for what seemed like FOREVER. Normally, it would not have been bad but the position hurt my port. I hope you don't experience that. Day two...was super easy and very quick.
They warned me by treatment ten I most likely would be feeling fatigue. I'm keeping my fingers crossed that they are wrong.
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Amy/Pam - I started using Aquaphor after my second rad treatment. The nurse didn't think I needed it because I wasn't pink/red yet, but my breast felt tight near the incision so I went and bought it. I use it every night before bed and my incision feels so much better. Sometimes I'll put it on mid day if I get that tightening feeling. Also, my rad onc. said there are prescription creams to use if they feel the aquaphor isn't doing the job. Many people have told me 100% aloe (kept in the fridge, for the cooling effect) works well too. I haven't tried that yet.
I felt really tired after my treatment Friday; came home and slept two hours and then I was good to go for the weekend. I just finished treatment number 5. I start back to work September 1 - I work in a school and I'm anxious about how that's going to go. My rad onc. said some women don't experience fatigue until after treatments are done. Seems like everyone has such a different reaction that it's just a wait and see type deal. Take care.
Chris
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I'm coming to join in...I just began on 8/24, so will be here all the way til Oct. Having 26 Tx + 7 Boosts. In just two days, I have felt hyper, a migraine, nausea and bored. When I see doc tomorrow I'll bring it up but I know from reading here that they deny almost everything. HaHa! Nope, just can't be from the rads. O.K., I won't mention the bored part. I'm sure about that effect.
For the past month, I had been using Mederma scar cream on my lumpectomy incision. I just switched to to plain aloe, a CHEAP kind. (I buy Suave shampoo too. That's just how I roll.) I plan to use the aloe about 2-3x a day. If that fails, the doctor has something called RadiaCareGel. It's aloe too, and costs more. I hope my skin does't get uppity about the cream. We've been together for many years, but if my skin starts putting on airs now we're through!
I've also had the side effect where my humor is lamer than ever. They don't have a cream for it, unfortunately.
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Hello Ladies:
I will join this thread also. I have an appointment 9/3 to have a consult with the rad onc. I don't have any idea at this time when the treatments will start, but I am sure it will be sometime in September.
I am one week post-op, lumpectomy, and am doing great. I have full range of my arm, which really surprised my doctor.
I have no idea what to expect, so will gladly learn from others. Thanks for being there for me.
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Hey everyone..just got back from appt. #2 to get ready for Rads..tomorrow I will have a simulation with the "real" machine. Then I start on Monday with alot of you. Betsy..sounds like you were told the same things I was. I was given aquaphor..told to use it 3 times per day but at least 4 hours before radiation. Also told to not wear deodorant under right arm unless it had a pink ribbon on it. Also told that I may get tired but not like chemo tired.
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Hello everyone - just had my simulation today and should be starting rads the week of labor day. I am a bit more than a month out of a re-excision/breast reduction and finished 6 months of CMF in the end of June. I was officially diagnosed in the beginning of November, but the mammogram that picked this up was in the end of October 2008 - WHAT A YEAR it has been.
Looks like I will be picking up some aquaphor at the store and going to Kohl's for some bras!
Thanks for the helpful hints!
Betsy - I am in Seattle - formerly in Portland for 14 years and really miss it.
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Hi all -- I went through my simulation today. I was expecting tatoos and instead got very large marker "x"s all over and sort of threw a fit (feel bad but I live in Houston and who is going to wear victorian blouses in Aug/Sept?) So I am getting tatoos tomorrow.
I'll be starting next week sometime. I am really struggling with even doing radiation. I run and am pretty active and so worried about side effects. Can anyone share some calming thoughts?
I have had 2 surgeries -- was DCIS and did not do the node and then invasive showed up so had to go back to do the sentinal node surgery.
I've bought the bras and will now go after the lotion and plan on eating only fruits, fish and veggies for the next 6 weeks -- plus that glass of wine a day:-)
I look forward sharing this experience with others who are going through it
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Hi all,
Just got back from treatment 7 - so far so good. My scar area is a little redder than normal, my nipple somewhat discolored and I've developed a lump (think it's scar tissue) by the surgery scar, otherwise I haven't noticed any side effects. I'm going to speak with the rad onc tomorrow about the lump or hard spot. Yesterday, I was very tired but I think that had more to do with our trip over the weekend and having my port removed. They removed the port in my surgeons office. Even though I didn't think it was a big deal, I think my body said otherwise. I sort of fell off a cliff last night. I was so tired I just couldn't keep my eyes open. It didn't hurt until afterward. Still burns a little today but I'm happy it's out. One step closer to having it all behind me.
aprilgirl1 - I was born and raised in Seattle. I love Seattle and miss it. I love Portland too - but my family is in Seattle.
I got another hint off of the Aug. Rad board. I found a front closing bra at Walmart for $7.00. It's very soft - I think it was a Hanes.
I had a wonderful experience on my trip home from Seattle on Sunday. My husband and I decided we wanted to eat on the water so we stopped in Vancouver, WA on the Columbia River for dinner. As we were eating, a waitress (not ours) came up to us and said. Excuse me, but we have had a special request. A gentleman at the bar would like to buy both of you deserts. We said, "us?". She said yes. She indicated she would come back later to take our order. When she came back, we asked "who specifically is buying us desert?". She pointed to a gentlemen not facing us. So after we gave her our order, ( a choc...decadence...low cal (NOT) cake to go with our wine) we got up to thank the gentlemen. He ended up being a very handsome young man - (looked like a model or an actor). When my dh asked him what possessed him to buy us desert. He said "it's just a random act of kindness". It touched me so. The strange thing was I had been struggling the entire drive home as we had stopped at my dad's grave. It was the first time I had seen it, he died shortly before my bc diagnosis. So Sunday was the first time I felt like I had a chance to grieve.
When I greeted the young man, I told him we were celebrating our anniversary (which happened to also be true)...He smiled. I shook his hand and I told him how sweet it was of him to do something so kind..then we left. I didn't tell him about my dad but felt genuinely touched..and was fighting back tears when I spoke with him. TG for sunglasses.
Later my dh said...it truly was a random act of kindness. He picked a middle aged bald women and her husband to be kind to..not some hot chic. I said WHAT!!! I'M NOT HOT! Of course, my dh immediately changed how he phrased his statement. "Plus", I said.. "How do you know he isn't really into bald chics?" and besides "I'm not bald, I now have peach fuzz"! We both enjoyed a very good laugh.
Betsy
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Hi everyone - I finished chemo 8/7 and hope to be starting rads 9/10. I went for a simulation last Friday, and they couldn't get a clear picture because I have a TE with 600 ml of fluid. So now I have to wait for my plastic surgeon to return from vacation Aug. 31, have most of the saline fill removed, and try the simulation again. Has anyone else gone through this? (My onc said I might lose the TE (after all that discomfort) and have a TRAM flap instead). Originally I wasn't supposed to need rads, but then my onc rethought the situation because of a lump in my armpit that grew between surgery & chemo. It disappeared after 2 chemos, and of 2 needle biopsies, one was inconclusive and the other said it was clear. But the hospital's tumour board agreed that rads would be a good idea. Re lotions: the rad nurse told me you can use anything that is unscented and most important, doesn't contain any zinc (metal is not a good combo with rads). I really like Aveeno creams and she said that's fine. Yay for the wine study, anything that makes this easier to get through AND is also good for you.... Good luck to everyone, big cyberhugs from Canada!
Pauline
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What a great story Betsy! Good for you. Isn't it interesting how we sometimes get just what we need, just when we need it? I love knowing that those people are out there. In Hood River we have to cross a toll bridge into Washington. Occasionally when you pull up to the pay booth, the cashier will say, "the person in the car ahead of you paid for your toll." It's fun to do it to others and see their expressions in the rearview mirror....especially if they don't know who you are! But, I would sure love it if a nice piece of chocolate decadence slid into my car.
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Betsy what a great story--it gave me the chills!!! and the peach fuzz is starting to look great--my DH just thinks it is very cute-- Laura
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Caphan/Chris; Wondering why you had to do radiation with a diagnosis of 0/0 nodes. My onc told me if nodes were negative, probably would not do radiation. Just so many different forms of treatment out there. I have learned also not to rely on the PET scan or MRI, as neither of these tests found a much larger (6 cm) tumor that was found on my right side during surgery. Wish there were better tests out there.
Shelly
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Hi
May I too join in? I see the rad guy on Monday and will be scheduling the sim thing and all I guess next week and then start in Mid September I guess. I don't know. Are any of you getting tomotherapy radiation? What did they say regarding this versus the regular radiation? I will get tomotherapy and am curious. Thanks. Guess I'll probably be here AND October. Whoppee!!
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Betsy, what an amazing post! I am not having rads but miss your postings so came to pay a visit! I am pleased you managed to get away and sounds like you are eating almost normally? That is great - I am so happy for you!
Titan, how are you doing?
Thinking of all of you, Judy x
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Shelly,
I had a BSGI test prior to surgery. It is specifically used to rule out additional tumors in the breast. I'm not sure it's offered everywhere and it's pretty new in the use of breast cancer diagnosis. It's like a reverse x-ray. They use a nuclear contrast and you have to lay still with your boob on a plate for 5 minutes per side. Basically your boob radiates the film or board. A digital monitor blacks out the screen if there is cancer present. My tumor looked like a black hole in my chest. But it cleared me of an additional cancer in my other breast prior to surgery & chemo. It has given me peace of mind.
Betsy
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Hi everyone! I am going to join this group also. I have been posting in the August thread, but I think I should switch to this one since we all will be starting about the same time frame. I had my SIM last week and today I had my first rad treatment. It was excruciating only because they did my markings first and then my radiation afterwards. Usually they don't start rads until the next day, but they wanted to start early on me. Anyway, I had to lay on the hard board with my arms above my head for about 2 hours total!! They let me get up once to get some feeling back. They kept reassuring me that it would not be like this from now on....only about 15 minutes. I got my tattoos after it was all done, 4 of them.
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Christy - I had my fourth rad today (started on Monday). The tattoos and sim were last week. They took much longer. The first one did take a little while but each day it has gotten faster and today, I was on the table and back off before I had a chance to blink. It seems to me that the machine does 4 radiations at about 15 seconds duration, and maybe 15 seconds between them. So about 2 minutes total. Plus about a minute or so to get me situated on the table in the proper position when I get there. So probably 3 min all told.
I promise it will get faster. Don't worry! My arm was sore the first time too. But now it is NOTHING.And so far, after 4 days, no noticeable side effects at all. We'll see how it goes from here.
Good luck to everyone. We will press on through September together and by mid October many of us will be finishing up. We will cheer each other on and celebrate our milestones.
Glad you are here!
Amy
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ljh58 - I spoke with my rad onc today about the study you found re: wine & rads. He said it was in the journal he normally reads but just hasn't gotten around to it. He said after our visit he would go read the article. He basically gave me his blessing because it was the Journal of Radiation Oncology Biology Physics. He even said two glasses would be ok...I knew I liked that guy the first time I met him.
Although, my onc said no more than one glass a day and I can live with that.Also for those of you on tamoxifin. He indicated old studies showed that tamoxifin interfered with rads. But he said more recent studies indicate there are no adverse effects combining the two treatments. So he also said to keep taking my tamoxifin.
I am 8 rads down 25 to go. I'm even getting use to the aquaphor. I use it at night with my special sleeping shirt so it doesn't get all over the sheets.
The sim and first treatments are the longest. After that it goes very fast.
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Shelly~ The surgeon said I didn't have to do any other treatment just follow-up with regular mammos. He told me they actually got all the cancer with the biopsy and the lumpectomy was to remove all the surrounding tissue to make sure I had clear margins; which I did. But, he recommended seeing a med. onc. as a follow-up. The onc. couldn't give me any clearcut answer as to why Tamoxifen would be beneficial and actually stated she didn't know what she'd do in my shoes. I researched it and actually the side effects outweigh the benefits in my case so I opted not to take it, but then she recommended a rad onc. The rad onc. agreed that taking Tamoxifen is to risky for me (I had a stroke 13 years ago) but that radiation would zap any cancer cells that may be lurking--especially on/near the incision. After much thought and research and speaking with other people who had BC, I was actually too scared not to get radiation. One woman told me she had a lumpectomy, no rads, and a couple years down the road had BC again. She felt if she would have had rads it would have diminished her chances of getting it again.
I just finished treatment #8. Skin is holding up okay, but I feel sore from under my arm to nipple area (especially where the incision is) I'm also getting indigestion, especially when I lay down. Any one else have this problem? It's very annoying. So far though, so good. I'm scheduled to go back to work next week and the whole "fatigue" thing has me worried. I work with 5-7 year olds and I just can't "take it easy" when my energy is low. I'm hoping I can work through it.
Take care.
Chris
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Hi all! I would also like to jump into this group as my rads will go until end of Sept. I see some of my friends from the August 09 Rads group feel the same way! The camaraderie is wonderful!
Today was #16 of 33 for me. I am pink..not burning at all. I, too, feel that tingling when the zapping is going on...thought it was all in my head!
I was told to pick one cream or lotion with aloe. At the drugstore, I found an inexpensive brand that makes a cream and a lotion (Fruit of the Earth). Stay with one brand because the ingredients in one lotion may react with those in another (so I am told!). If and when I have skin changes, they will tell me what to use next. So, I have been slathering on this stuff after treatments and before bed and whenever else I happen to think of it. I actually like the cream in the jar better. And, my hands are very soft now!
I have 2 of the front closing bras from Walmart...one black, one white...Great deal @$7.00 each. Get a size or two larger than you normally wear. I also have a couple of those Barely There from Kohls. They are so comfortable. But right now I prefer the front closing ones. (Hate to admit this but I have been known to unclasp that bra on my way home from the office...Ahhh..such relief to release that swollen boob!)
Hugs to all,
Sue
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Hello September Rads Group
I just finished up AC and Taxol treatments last week and know that my next "project" will be rads starting in September. I don't have my date yet. I will be meeting with my oncologist on Monday and I am sure he will be sending me to see my radiation oncologist in the next week or so. I just wanted to get myself introduced so when I start to have questions you will know who I am.
Some of the girls from the April chemo group will be joining too I assume and I look forward to talking with you all. -
Hi to all the newbies on this site--and to all who have been on this journey since February March and April--we are all getting through this and will stay strong--I met with a lymphedema specialist just to have a base line of measurements and suggestions on ways to prevent it--I had 30 nodes removed with my mastectomy so want to try and prevent the possibility of problems she was great and suggested some arm exercises --said to do things slowly and during rads to make sure you drink a lot of water and lather up with cream all the time--avoid the sun and heat-- may need to wear a compression sleeve when I fly. so far i have been ok but we will see--there is a lymphedema thread on this site if anyone has any concerns-- starting rads this monday --just want to get it done!!!hope everyone is having a good weekend and will have a good week--stay strong--stay well Laura
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Betsy, I love that story. It's so nice that someone was being so thoughtful. It really speaks to how a relatively small act can truely be so kind. I'm glad you had a good trip with your husband too.
Thanks for all the tips. What type of bra did you get? And why do I need to get a new bra?
Get some rest, I'm sure you are tired.
Pam
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Pam - the bra I've been using most often is the front clasping Fruit of the Loom bra I got at Walmart. It's so easy to put it on and take it off. I have a soft generic sports bra that I use on the weekends.
I've had 9 rads and just this morning my boob is red all over. Initially my scars pinked up and my nipple turned a disgusting color. I asked the rads nurse about the discoloration and she said it's normal...no worries. Today it looks like I have a slight sunburn. I've been doing ok with working full time, when I come home I'm pretty tired but it's nothing like chemo fatigue. Last night I also felt a slight tightening of the node area. Between the port hole healing up, a hot boob and hot flashes - I was up most of the night. Thankfully my dh let me sleep in until 9:30. I haven't slept that late for years. Guess I needed it.
On the August Rads board there has been a huge discussion regarding nausea and heartburn. As some of you know I had a terrible time on AC/T with heartburn. Judy - I know you are right there with me. So I've decided not to read that board anymore. Hopefully none of the first group of us walking through rads on this board will have much to report on this front.
I'm sticking with my glass'o wine a day...and soon the Rads will go away!
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