SEPTEMBER 2009 RADS
Comments
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I had my rad simulation on Aug. 12th, started rads yesterday. I am well behind the Aug. Rad group and in front of the Sept. Rads so I'm going to straddle the threads for awhile. I also started tamoxifin on Sunday - a subject many oncs don't agree on. My onc. said why wait...radiation treats the breast tissue and the taxomifin treats the ongoing systemic cancer threat. Sounded good to me...I'm fighting on all fronts.
It took me 45 mins. in traffic to get to my second rad tx - which took approximately five minutes.
My simulation was a piece of cake. I got three tattoos, they are so small I can hardly see them. The first treatment was a little tougher. I had to hold the position they put me in, what seemed like forever. My port was killing me - so it was not as easy as the sim...but not bad.
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I had my second rad appt yesterday and went today and the machine was down. Electrical storm last night cause a power surge and all went down. I too am going to straddle August and Sept. Rads/starting rads in August and hope to finish up early October. I have six tatoos. Monday they had to widen the margins because when my breast swells they were afraid all the fields wouldn't get the radiation.
I'm not taking any hormonal therapy. I had a stroke 13 years ago and am already taking more medication than I care too. The onc and I agreed it's not worth the risk right now--too many side effects. I'm hoping the radiation will take care of anything left. Surgeon said he got it all and declared I didn't need radiation but onc. thought different. I'm doing it because I'm afraid not to. Anyone else in the same boat? I'd also like to know about when I should be getting larger and softer bras.
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Caphan - I think we are ahead of the group. I've switched bras already. My normal bras have under wire and they said that was not good. I'm wearing my soft cotton sports bras or cami's as my other bras make me itch almost instantly. I haven't read itching is an issue...damn, I always seem to have crazy SE's with everything. I've tried my Aquaphor for two days now and feel like I've been slimed my an alien boobhugger.... Bald, gooey, menopausal...TG my dh is mellow.
Betsy
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Betsy..you crack me up...you could write a book on SE's that no one else has to worry about!!
I start rads week of 8/31...I get "fitted" for everything week of 8/24...I guess I go 3 times instead of all at once...My work is 8 minutes away from the treatment center so once I'm set up I should be good to go.
I have to have a biopsy (maybe) on my left breast (ONE little microfalfication) sometime during radiation. I told the staff at the center that there was NO WAY that this was going to interfere with my radiation schedule...
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Hi - I am going to join this group as well, although I have my sim tomorrow and my first rad on Monday. I will go straight through Sept and end in early Oct. I got my tattoos on Monday. I showed my 'ink' to my 20-something daughters and they were not impressed!
When I asked the radiologist about aloe/aquaphor, they said that I am free to use them, but they are for comfort only and do not help or prevent any burning or breakdown of the skin. I'm not sure I buy that and am planning to use them daily. Did any of you get similar (or different) instructions?
Well, on to a new adventure! Betsy, thank you for starting the thread and please lead the way for the rest of us!! (And for those of us from the April chemo group, after what we've been through - we can do ANYTHING!)
Amy
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Hi,
I just finished radiation and they recommended a terrific bra called Barely There. It is like a much softer and looser sports bra. I found it at Kohl's. I didn't mind purchasing the bra because it now makes a great sleep bra. Good luck.
Roseann
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ljk58 - wow...finally a study I can support! I have not heard of it but will print it out and bring it in for my rad. onc. to review. Thanks..
Roseann - thanks for the bra tip.
Titan & Amy - this should be a breeze compared to what we've been through (at least I hope). Just got back from my 3rd rad...feels a little warm and my scar looks a little red but all in all not bad. I counted it took 15 seconds on each setting for the rad. Maybe a minute or two of set up. So the big deal is getting there in traffic. I'm doing it on a late lunch hour...After work I go home and put aquaphor all over... I asked today if there was anything not so slimy and the care nurse rather rudely said "not really". Obviously she didn't want me to take up her precious time plus I'm sure she has never been slimed before. Some people should just retire when work is no longer fun.
Titan - when is your biopsy? Did you ask about the BSGI? I think it's a very new test.
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Hi Betsy, I wasn't sure if you are still reading the other threads. I don't want to change the course of this discussion, but just wanted to ask you a quick question:
How are you doing with heartburn? I was told today that I may have acid reflux indefinitely - not happy.
I know this is a rads thread, but I just wanted to hear how you are on the stomach issues.
Good luck to you all with your Rads!!!
Thanks, Judy x
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Can I join you? I am finishing up my chemo next week and will be starting rads on Sept. 10th. I'll lurk here and learn from you all. I already have aquaphor and my father in law, who also had rads for lymphoma, said to get aloe from a live plant, and although it wouldn't diminish the side effects, he did say it would really help make the skin feel better.
Pam
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Judy - see the April chemo board for a response.
Pam - glad you joined us. I also heard aloe is great - that's what my onc recommended but when I told him I'm allergic to it...he said use aquaphor. On the Aug. board someone said Lubridrem was good but I couldn't get a good answer from my care nurse today, so I'm waiting to speak with my onc. about it.
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Hey Ladies, I'll be joining you for rads! Had my simulation on Monday and start a seven week series on Sept. 14, so those of you paving the way ahead will bring good info. to the group.
When I've looked back at older rads threads, the most debated topic seems to be the best skin creme to use. As usual it sounds like trial and error and everyone has their favorites. I think I'll go shopping for a new aloe plant!
Today was my last of six T/C. I am happy to be done but dreading the next two weeks of misery....you know the drill. Tale care ladies, Mary
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Betsy B...I have an appt. with the surgeon on August 31 to discuss the possibility of a biopsy. I don't even know if they will do it right now...I would like to get through rads first..
LJH: I like how you just "stumbled" across the wine article! Just think we have rads every day! What an excuse to drink a glass or two of wine!
My rad onc said that he will give me the lotion to put on..I'm not sure what it is called but I will found out soon enough.
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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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