SEPTEMBER 2008 rads group
Comments
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Hi All,
I hope I can still join this group. I will start rads on September 29 so later than all of you, but would still benefit from all of your knowledge and experience.
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Had rads #2 today. Everything went well. I guess I was just fearfull of the unknown the first day. Today it was just fine. Very easy. All you have to do is ly still for about 10 or 15 min. They told me today that evy mon,wed and friday I will be getting a bolus. They put something over my chest area, and then it seemed like they gave me an extra dose of rads. Did anyone else have this, or know what it is?
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Hi ladies,
Had my simulation yesterday and scheduled for a dry run next week. I'll be starting on the 22nd, same as Jane and Kristy I think.
They gave me a skin repair cream from Medline. The doc said she usually prescribes something else. They told me to stop using it next week in preparation.
Thanks all for being tyhere. Good luck in Texas my friends.
Mary
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I had my simulation today but I won't start my rads till the 29th. I think I would have started sooner if I had not agreed to be in a clinical trial. I just can't justify NOT being in a clinical trial for a major university. If treatment of my disease can help someone else down the line, then it is worthwhile as much as I want to get started.
Best of luck to all.
Jane
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Lauren - CONGRATULATIONS! All done with rads. Are you going to be having any hormone therapy?
Stephanie - I amazed at how quickly this is going. Chemo seemed to drag on. Maybe I'm in denial, but getting the rads, being on the table, doesn't bother me. I guess because it's had little impact on me, yet. Maybe when I'm blistering and sore I'll feel different.
Roberta - that sucks! I know what it's like to be eager to get the party started! The way I look at all the treatment is the sooner it starts, the sooner I'll be finished. And what's with the 4 hour time frame? That's crazy. Everyone has a schedule of some sort for their day. I knew I either had to have it before 8:30 am or after 4:00 pm to make it work in my schedule.
tkone - welcome! You're just squeezing in, but we're not fussy about dates. If we look like a good group to you, that's all that counts!
tomatojuice - what did we tell you? A piece of cake.
Mary - 9/22 is a big day for a lot of you. You'll be surprised how quickly the time goes by. I'm almost a third of the way done!
Jane - I'm envious. I've always wanted to be part of a clinical trial. I used to answer every survey that came my way, and did consumer panels up the wahzoo. So here, I get bc and NO ONE wants to put me in a clinical trial! I guess I'm too eager.
Kristy - take care! Bake as long as the utilities last! But watch out for the winds.
Tx #9 down! My chest is getting pink with some red spots. I'm going to cream the heck out of it over the weekend and try and get it back to normal before the rads start up again on Monday.
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Day 16 for me today. Had a bit of a sore throat last weekend and was told no way could it be the rads, somehow I'm not convinced...
Started getting a little pink this week, have had some "pangs" from time to time plus I'm beginning to get tender but nothing that is intolerable. Doc is just thrilled at how good my skin is holding up and told me to continue using corn starch, nothing else. Rad tech doesn't seem to share her opinion and gave me some aquaphor samples today. I decided to go ahead and use aloe during the day and the aquaphor at night this weekend as I was feeling a little heat the last couple of days. Got chewed out last week for losing 2 pounds, I was weighed the time before with my work radio clipped on my belt which weighs at least a pound and last week I had left it in the truck. I was only down 1 pound this week so my doc wasn't soo upset, I didn't bother to point out that I had the radio back on this week so I was actually down at least 2 more pounds. I'm not trying to lose, I'm just making the effort to eat healthier.
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Anyone have trouble sleeping since having rads? Had to take exrta meds tonight. Just can't sleep.
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Hi, everyone! I start a 3-week (actually 16 treatment) course of radiation on Monday 9/15. I've been tattooed, had my simulation, so I'm all set. Glad to hear how well peoploe are doing so far. This 3 week course has a rep for causing less fatigue & I was not a candidate for the internal, catheter-guided protocols, so I'm very happy to chop 7 weeks down to 3. There's a discussion thread about this 3 week protocol if anyone wants more info. They instructed me to use only Tom's of Maine deodorant (if I wanted to use any at all) on the affected side, to use unscented Dove soap to wash with, & they give out free Aquafor to help the skin irritation. Actually, their gift shop, which is breast-cancer friendly, has another type of non-metallic deodorant that can be used with radiation. I'll try to get the brand. Good luck to everyone.
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Heading into the weekend with 8 down, and 26 to go. So far, just a light shade of pink. I've used the aloe vera a couple times. Still working 2 jobs, and taking care of my 2 kids. No fatigue yet. I actually tried to take a nap the other day and couldn't. I was still too energized from working out. (I teach a fitness class.) So far so good.
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Hey, all. It's SATURDAY! Today when I woke up and realized I didn't have rads I felt like a kid on a snow day. Woohoo! Sounds like we're all doing pretty well, and welcome to the newbies. Tomatojuice, I had a little trouble sleeping at first (nerves), but it got better. Hope it's the same for you. KAK--you're so lucky you get to use deodorant. It was forbidden me on the treatment side and now I make sure I keep people on my good, nons-melly side
when conversing or hugging!Princess--you're amazing, to be able to do all that you're doing--2 kids, 2 jobs! Wow. It's hard enough for me working part-time and taking care of my dog! And he's a pretty low maintenance dog!
NancyD, I'm finally starting to get a little pink, too. My friend gave me a big chunk of her aloe plant, and I'm going to smear some of that on over the weekend. I gave up on trying to find a "pure" aloe vera gel.
Hope everyone has a restful weekend. Those of you in Texas, I'll be thinking of you and sending you best wishes.
Ace
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tj - no-o-o truble sleeping here. My head hits the pillow and I'm out. I even wake up less during the night. Maybe you're feeling some nervous energy
Well ladies, my pink skin and red spots have developed some little burn blisters, I'm going to slather the ointment on more this weekend, maybe three or four times a day, and hope I'm good for treatment on Monday. Does anyone know if they postpone treatment if you have blisters?
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Hey KAK....my radiologist told me I could use "Arm & Hammer" It's natural deoderant (unscented) called "Essentials" under both arms.
Just thought I'd pass that on.....
Happy Saturday to everyone!!!!
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I had #3 on Friday and it went much better. I didn't cry at all. On Thursday, I almost fell apart. While I was in the waiting room for radiation, a male patient came. I was in the gown with my bag over my chest. I don't what I was thinking - I should have known that there would be other people waiting for treatments. I guess I was expecting only women. I felt so exposed. The nurse noticed and offered to let me go in an empty waiting room and from now on they would let me when I was next and I could change then.
I went to Wal-mart and got one of those tops that medical personnel wear; took it apart and fit it with a camisole. Added snaps in the front from the shoulder down to my side and secured with a button. On Friday, I wore it in and was ready. I had practiced the night before how I could keep myself covered until I was able to get on the table and close my eyes. It really helped me. I felt like I had some control over what was happening. In fact, there were more people in the radiation waiting area (patients and their friends and family) and I felt somewhat comfortable and relaxed.
I had begun to feel like my dignity was being stripped away. I have been keeping a mental note on how many have seen my breast and was getting somewhat bitter.
The radiation part has been the only thing that seems to break me down. Even when I was researching and reading about it, I would start crying. Yet until then, I had been somewhat upbeat and encouraging - from diagnosis through surgery.
Looneymom- I asked about the difference in treatments from 33 to 18. The hospital's radiation oncologist (18 treatments, but 2 hrs away) said the amount of dosage would be same in the end and not to worry, but, along with my surgeon, thought that based on the size (6mm, DCIS) the shorter treatments would be best. The local center said that based on my condition , it was standard to do 33 treatments and that would be the same throughout my local area.
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We made it through the hurricane with no power outages (we are quite a ways inland) so I did cook all day and the family loved it- lemon bars. broccoli cheese quiches and whole wheat biscuits.
I start rads next Tuesday- the 16th Roxi! I think I am ready to get it going and get it over with
Kristy
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Well I start tomorrow, which is actually a simulation, so I guess I start Tuesday. I'll take any advice on creams.
Roberta: You have a right to be mad. Do you have any other options for treatment? I mean in terms of where you go.
Jane: Yes you are strong and tough! But that doesn't mean you don't need to vent, or cry, or ask for help. Part of being strong is knowing when you need help.
As for the boosts, I know they are going to do this part way through, and for most people it's to the actual tumor bed because that is where most recurrences happen.
Deb
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Sharpie: I'm with you, this radiation process makes me want to cry and all I've done so far is the simulation which I thought was really tough. I gained some weight during chemo and have started to lose it. I was told to stop losing weight while I'm in radiation. I was also told absolutely no deoderant on either side. So many differences of opinion. I cannot imagine not wearing deoderant! That's another reason for me to not go back to work.
I wish I didn't have to wait 2 more weeks for radiation. I have way too much time to think about it. I'm going to ask why I can't start next week. See, you ladies are empowering me.
Love and prayers,
Jane
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Good luck to all the ladies starting this week. If you did chemo...it's not as bad, really. The hardest part is holding the position for your simulation. The treatments are only a fraction of the time as the simulation.
Watch you skin, and keep putting ointment on. But even then, you can have a reaction. I have been using my calendula ointment faithfully twice a day, and I'm having a reaction already. So sometimes, it's just the skin you're in.
Jane, they told me no deodorant on either side, too, but I've been sneaking some Tom's of Maine on the non-cancer, not radiated side. I have to work almost a full day before I have my treatment.
Rad #10 today for me...if they'll treat me with my little blisters.
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Just got back from #4. I asked about Arm & Hammer and Tom's of Maine, but dr. said not to use anthing but cornstarch. I've been using cornstarch, but after a few hours I can smell my underarms even when I lift them slightly. Whoa -- the smell is actually giving me a headache.
I only hug with my right side now because I don't want other people to smell me.
I meet with the dr. on Mondays. I explained that I had already felt some SE's such as tingling on the inside the breast, which worries me since it's so early in my treatments. As the day goes on, it turns into a dull throb. I try not to think about how bad this could get. The nurse is the only one who has described the SE's close to what I've been reading about. The dr.'s have said a mild to bad sunburn - nothing about internal pain. And, although they say you can't feel the treatment, I know I can feel it when it's given on my left-most side (I get whole breast radiation). I can't bring myself to open my eyes and watch.
God bless all of you. I'm so thankful for this group.
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Thanks Deb & Nancy - I wouldn't even be pissed if it were not for the fact that I was given a start date and then to be told you are probably going to start two weeks later is really disappointing and puts me just over 6 1/2 weeks after chemo. It just drags everything more and the plans that we made at the end will have to be postponed.
I don't have much choice here as I live in Canada. The only thing they are looking at is if I could get in faster if I went to a center in the total opposite direction from where I work (the center where my file ended up by accident). If I worked while going there it would be at least 3 1/2 hours in the car which just doesn't seem practical as that would not even include the treatment itself.
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Roberta: Where in Canada do you live? I have a young friend fighting our breast cancer battle in the Windsor area. She in radiation right now.
I called the hospital and asked if my delay in start time was due to the clinical trial I agreed to be in. They said absolutely not that it just takes time to get everything set espcially if you have left sided cancer. Apparently with left sided cancer there is great fear in radiating the heart. Here I thought I was blessed to have it not be my right side because I am right handed. Oh well. My coordinator is very kind.
Thanks to all for your support.
Jane
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Hey, ladies. Happy Monday!
Kristy and Roberta--Good luck tomorrow.
Sharpie--I can also feel the treatment, especially the first day. The first few days were rough, because I had pain right away--just what you're describing. I was so worried. I thought, if I'm having this much pain after #1, what will it be like at #33? But it seems as though my body has adjusted to the treatments (bodies are pretty amazing!) and pain hasn't been as much of an issue. I seem to have more discomfort at the beginning of the week, then easier in the middle, then small discomfort toward the end. At the end of the weekend, I feel the pain has diminished and I'm ready for another week. And the pain I'm talking about isn't that bad.
So, hope that helps you to relax a little. The first two days were the worst for me. On the second day, I even had pain in my ribs and back on that side. But I think the body adjusts, and maybe our stress levels go down as we get into the routine. Keep us posted on how you're doing.
NancyD, did they do treatment on you today with the blisters? How are you feeling? Hope you're feeling better. Tomorrow I'll be 1/3 of the way done! Are you having 33, also?
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I am kinda new here I have not told many people I even have cancer, had lumpectomy in aug and started radation today, I just keep feeling like I do not know what to expect and everyone seems to know more or something I feel like it is all not real I will have 24 treatment I have dcis stage 0 very early they told me I am also on Tamoxifin started that last week will finsh radation oct 23. It really is quick in any out when does anyone start feeling tired?
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Had my simulation today...starting radiation on Tuesday, Sept 23rd. I have my appt. with the medical oncologist on Monday the 22nd so they want to start after that. We are a little unclear of my DX...first doctor said IDC (3mm) with DCIS. Second doctor said DCIS no invasion....but 5 "rare, minute" positive cell in one of my lymph nodes. Doctor said it was displaced there when I had my first biopsy...did not spread. Either way I am told it is still N0 (node negative) and whether it is 3mm invasive or DCIS I will have the same treatment...radiation and tamoxafin.
Hoping not to get too tired or "sunburned". I am in my sister's wedding on November 14th and my last treatment is Nov. 7th. UGH! I hope the strapless dress is not completely uncomfortable!
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Hi ladies,
Tx #10 down. I'm officially 1/3 of the way through my 30 treatments. They didn't think anything of my little blisters. Radiated anyway. I'll be seeing the NP and maybe the rad onc tomorrow (Tuesday's my day for that), so I'll mention it again. Meanwhile, I will be slathering on the ointment.
A co-worker offered to bring in some aloe leaves from her plant every few days so I can get 100% aloe gel to use. I said I'd love to try it. Now, she just has to remember to bring them in. She can be a little absent-mided sometimes.
I've also noticed I'm a bit more tired than usual....make that a LOT more tired than usual. I napped all day Sunday. But maybe going to a party Saturday night had had something to do with it, huh? OK, I won't blame it on the rads, yet.
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Tomorrow morning is my first real radiation. Oh, boy, here we go.
Sharpie: Ask your doctor about something I found at Trader Joe's that is cotton. Sounds weird, but it works better than Tom's anyway. It's Paraben and aluminum free and touted for sensitive skin. It's unscented but does have some herbal extracts which I have to check out. I'm going to bring it to the doctor-- which one? The radiation onc?-- to make sure. I know what you mean about being smelly. I go to the rest room and use the dispenser-type hand soap to keep washing up a little!
Roberta: 3 1/2 hours sounds worse than the two week longer wait. Overall, your time is important and it's a shame that this happened to you. Not to mention the increased stress, which you DO NOT need. Ever taken yoga? That helps me.
Tomato juice: did you ever find out about that bolus? I think it's a boost but I know they are only doing mine once, midway through. A bolus is a dosage-- I know this from my son, who has Type I Diabetes, and when he gives himself a bolus with his insulin pump, it means a dose of insulin.
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Also, Pooh, you are in the right place to learn. Seems that the fatigue thing is different for everyone. Most seem to start the drugs after radiation, though. For the endocrine therapy, not chemo, which is before. Do you have anyone in your community who has been through this that you can talk to? If not (and even if), you do now!
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Hi all,
Glad you were able to continue your treatments NancyD. I'm more tired than usual today too. I'm planning on going to bed early this evening.
Redheadace1 - what you described is exactly the way I feel - much more discomfort at the beginning of the week
Hope this week flies by for us!
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Forgot to add...I started my Arimidex today. Can't wait to see what lovely s/e's I get from that.
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NancyD - my dr. suggested to start Armidex after the rads. Did your dr. say why he wanted you to start now? Doesn't it take months for the side effects to show? Right now I have no plans to take it.
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Hello! Number 16 down today - beginning to itch quite a bit - even on my upper back on the right side - tech said that the radiation goes through me (YIKES) and out the back - thus causing the burn back there. Will see doctor tomorrow and hopefully he'll tell me something else I can use for the itching - any of you have any ideas on that???
I have some wonderful news - I know we are always talking about our treatment but wanted to share some exciting personal stuff. In one weekend I found out my son and his wife are expecting their second child - the first is 1 1/2 AND my daughter became engaged!!!! She lives in Nashville - was on a trip with friends to New York for a few days - went to the top of the Empire State Building and her boyfriend (who lives in Nashville, too) surprised her - flew to New York and met her there when she got off the elevator with a ring!! Now isn't that romantic???? Soooooooo - looks like I'll be planning a wedding soon. We are sooooo excited about both things - this will be our second grandchild. Any tips for the mother of the bride? Anybody live near Nashville? That's where the wedding will be. I need tips on photographers, etc. I happen to know they don't want a long engagement. Hope in the next week or so to find out when the wedding will be. Told my husband - I've got to get through with this stuff - I've got THINGS TO DO!!! ha ha Hope I didn't bore you with this long story - but as you can tell - we are thrilled!! All of us need happies to help us get through everything - don't you agree????
Everybody hang in there -
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