SEPTEMBER 2008 rads group
Comments
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You know, Sue, I'm not really sure how many I'm having. I was so excited when I saw the rad onc that I just nodded and said yes to everything. The technician set up the schedule on his lab computer. I know it runs into October, but "just". I'll check tomorrow. I think it's 25 or 30. It might be nice to have the facts.
As far a lymphedema, I don't know if there's anything you can do to prevent it during rads except the stuff we already know, but watch for any early signs of it so they can give you a break and get it back down with massage. They took my baseline measurements in four spots a few weeks ago, and will remeasure every two weeks, unless I indicate that something has happened sooner. I get to walk a lot everyday in the city, and the extra walk to treatment will be my bonus exercise. I should add something for my upper body, but maybe waiting until rads are over would be prudent.
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Hi All,
Well, got through the simulation, tattoos and first treatment. I don't think I feel warmth but maybe a sensitivity near my nipple and a slight dull pain - It's hard to describe - but honestly it may be just pychological. If it's not - then I think I'm going to have a very rough time.
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I just had my tattoos done. I guess I actually start tomorrow.
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princessJ - it will be so easy, you'll see.
Rose - I'd be surprised if you really had a raction with the first dose. But then, everyone's going to have different responses. Keep slathering whatever they told you to put on it...morning and evening. Cool showers and no scrubbing.
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Princess, how'd it go today? I hope all's well.
Rose--I had the same thing after my first treatment--I even posted about it--but it seems better today. I know that I have a very strong mind-body connection, so it's possible that I just somehow "thought" myself into feeling burned. Today was better. How was your second day?
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NancyD.
I've had four treatments so far and also wondered about the number of treatments and met with the radiologist yesterday, first time since the initial consultattion last May!
He gave me the total dose (4680 cGy) divided by 26 fractions (180 cGy) per day, then boost of 1400/7 fractions (200 cGy) per. So that is a total of 33 with a second planning session after a month to adjust the number of days based on the actual dosage I have received to date.
Regarding lymphodema, he told me there are three levels of nodes; 3 under collar bone, 2 lower, and 1 the lowest. He said the higher the node the greater the risk. I am having the lowest level nodes hit, so he said I unlikely will have an increased risk.
I have had to work at extracting answers to my questions and my radiologist is definitely not a teacher. His nurse gave me a copy of "Radiation Therapy and You" by the National Cancer Institute that was very helpful. http://www.cancer.gov/cancertopics/radiation-therapy-and-you/allpages
What sources have others found informative?
Betsy
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Hi,
Well, honestly I just don't know -- I told the tech and he said I shouldn't of had sharp pains after the first treatment.
I agree, I have always had a strong mind-body connection. Also, the two tech. worked me over during simulation - with the 2 xrays, marking and tattoos. It seemed like I felt a tiny bit of warmth during the tx today and again a little twinge of pain when I was dressing. I'm doing the Miaderm and last night I used the aquaphor. I think tomorrow I'm going to get Aloe Vera or something. I'll do the cool showers NancyD
Thanks for asking about me - I'm getting down and I haven't even done a full week.
Tell us how you're doing Princess?
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Rose - it may not be that you are down - you might just be tired. I have had 8 treatments so far - no burning at all - using pure aloe - that's all - but the one thing that I HAVE had already is fatigue. There is no rhyme or reason to it that I can tell - I will be doing just fine - going about my business and suddenly I am exhausted!!! To the point that I have to lie down and when I DO lie down I sleep about 3 hours!!! Now understand - I NEVER do that so I KNOW that the radiation is causing it. But like I told a friend - if that's ALL that happens I can handle NAPS!! ha ha
Hang in there everybody - time will pass quickly - I'm sure.
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My responses are going to be a little late as I am in the Southwest and I have my treatments in the evening. I get the feeling everyone else is on the east coast. So--you all were right. The first treatment went fast and easy. No tears were shed, so far so good.
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Fast post as I'm already at work. Second treatment was quick and easy. I was out of there and on my regular bus home, so really no time lost in my day.
Rose, I do occasionally have some pains, but that's been since my mx, not the start of the rads. It will be hard for me to tell if there are new pains caused by the rads to the skin, as most of the underarm area is still quite numb. Nothing looks red, so I'm just slathering on the calendula ointment and hoping it stays that way.
Two down...
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Hello Everyone,
I will be starting rads next week- have the simulation on Wednesday and I guess the markers. I cant have the tatoos due to an allery to cobalt which my dermatologist told me was in tatoo dye- so they will be marking me some other way!
I have already had 6 rounds of TCH and weekly Herceptin since April 25 so I will be about 4 weeks out from the last chemo when they start the radiation. I will be having 33 treatments- 28 to 4 areas and 5 additional ones to the incision line from my mastectomy.
I am not as nervous as going into chemo and hopefully the time will pass quickly. I am hoping to get the earliest morning appointment and get the treatments each morning on the way to work- I drive right past the cancer center on my way to my office. I am considering taking every Friday during the 6 weeks as a vacation day since I have been told the fatigue will be the most problematic issue- then I guess if I am not exhausted I can do my Christmas shopping or something else. I have a lot of vacation time left since my whole Spring and summer was surgery and chemo and I was not required to use vacation time while I was out.
I have a call into the radiation center to get details on creams and deodorant- I like to be prepared!
Kristy
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Well finally got my appointment set up for my CT simulation and that is next Monday. Of course that was the day that I had 3 other appointments set up so scrambled to get those moved to a different date. Does anyone have a rough idea of how long it will take the first time? I've taken this week and next week off work due to really bad fatigue from the chemo. I figured if I started that way with radiation I'd be in trouble. Will try and go back to work part-time when radiation starts.
I have 28 treatments in total so will be finished by late October.
It's great reading everyones experience so far - lessons the anxiety.
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Roberta, it depends on how many fields they are doing. I'm having four fields radiated. They did my CT scan one day, and that took about an hour as it had to be checked by a dr, so there was some wait time. They did my tatoos then. I wasn't too uncomfortable.
Then on my first day of actual treatment, they did some more prep...xrays and laser guided line-up using the tatoos. That part took about 45 min, and again they had to wait for a dr to look at the xrays. This was a little more uncomfortable as I was positioned by the techs (whereas the previous run-through, I just got myself comfortable), and had to hold that for some time. There were a couple of pressure points that started to get numb or very irritated, and at one point I had an itch that was driving me crazy. But you have to keep the same position until you're done, or you risk getting radiated in the wrong spot. Good incentive.
They also use permanent magic marker to add to the tattoos, so wear something with a high neckline. I had to pin my neck opening up as I looked like someone had played tic-tac-toe on the center of my chest, LOL.
The second time I went in (yesterday), it went very quickly, and when I layed down, I was able to put my self in a better position. Of course, I didn't have to lay there as long so it was less of an issue. Yesterday's treatment took less than 15 minutes.
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I had my third today and I was so nervous because I've been having a slight increase in pain and heat sensations in my breast from the very first treatment. I was worried the doctor would be dismissive, but he was incredibly kind and reassuring. I said, "Maybe it's just my imagination," and he said, "I'm sure it's not your imagination." I was stunned. I've had a lot of bad doctors during my lifetime, very dismissive. So I was prepared for the same with him. He suggested it might be muscle pain (I don't think it is), but he also said that many of his patients experience a sensation of heat from the very first treatment. And he just reassured me that he would be keeping a close eye on things. I was so relieved that I bawled in the parking lot for five minutes afterwards. Not sure where all those tears came from! Sheesh.
Kristy--good luck with everything. I'm using a prescription cream, Biafine, and no deodorant for me on the left side for another month or so
--not even Tom's of Maine or a deodorant crystal. People will be giving me a wide berth! I had a bath this a.m. before my tx at 9:30 and by the time I drove over in the 85 degree heat I was a bit smelly. I apologized to the rad team. Oh well. But I know some hospitals allow patients to use the more natural deodorants.Roberta--My CT appointment took about a half-hour to 45 min. I then had another appointment that took a while because they did several xrays and marked me up all over (again--they'd done that at the CT appointment) and wrote on me for quite a while, lining the machine up exactly. Then they did the first treatment. After that, they tattooed me and wiped off the other marks as best they could. That appointment took about an hour and 15 minutes. Hope everything goes well for you.
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Roberta,
My initial simulation appointment last week took about an hour, maybe a little more. I got an explanation of everything from the doctor and had to sign the consent forms. That part took about 15 minutes. Then I got into a gown and laid on the table. They got me lined up and put lots of stickers on me and moved me into the CT machine for about 10 minutes. When I came out, the tech tatooed my 3 dots, one in the cleavage and one on the outside of each breast. I don't know why the outside of my right breast as I'm only having the left radiated. I'll have to ask that next time. Then they took off all the stickers and told me I could get dressed. They gave me an appointment for Monday the 8th. When I go back the tech told me I'll have some more measurements to be sure everything is right, then get my first treatment. He said this visit could be 45 minutes or so. After that I'll just come in and be out quickly. I'm really feeling anxious also. Trying to everything I can to keep my mind occupied. I hope Monday gets here quick. I think I'll feel much better once the first one is out of the way.
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HI everyone. #3 was easy. In and out in less than half an hour. I guess half of that was waiting. I bought a few books to read, expecting there might be more wait time, but I've usually just gotten into the story when they've called me in.
Still no reactions.
nancy258, I noticed the lasers flashing around when they did my xrays, and I do know the more reference points they have to match up with, the more accurate they are. So the tatt on the far side must help with the triangulation.
I found out my last appointment is October 13th...Columbus Day. So I don't quite make my goal (finished by Columbus Day), but that's pretty darn close. LOL. That's six weeks.
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Hey Nancy! Galen and I will be flying about 600 miles; from our village, Mekoryuk to Bethel to Anchorage...and THANK GOD! We won't be flying that everyday! I've taken all but one treatment in ANC. I did take one treatment in Bethel, but that was no fun, because Bethel is like an outlaw town to me; considering I did most of my growing up in the San Antonio area. In a way, I'm thankful to be Native, but sometimes I think the health system for us is slow and unresponsive?!? I could probably write a whole book about living out in the boonies of Alaska, learning about my people and culture and stuff, but that will be for another time and place!
My brother and I will be staying at a place, next to the hospital for six weeks, so thankfully, we DO have a place to stay!
Anyway, we'll be leaving on Thursday (9/11)...what timing huh?!? My first appt will be with my onc, and then we'll go from there...I'll keep y'all posted!
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Thanks everyone on the estimates on how long it will take. Trying to make sure that I'll be home in time to pick up my son from school and will have to make arrangements to get someone to pick up my daughter from kindergarten. It's her first official day today and I'm holding back the tears. She will be the youngest (born in Dec.) and is so ready it's amazing.
Has anyone had problems wearing their prothesis during radiation? I have the comfy they gave me at the start and was thinking because it's light weight it might be easier to handle?
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Roberta,
My techs told me not to wear a bra...only wear a light camisole, so no prosthesis, except the puffy kind that fit in my Softee camisole pockets. I might try something a little more substantial on the weekends. Going to work flat is not a big deal...it's mostly women and gay men...but when I socialize on the weekends, I'd like to look a little more normal. I think it will be alright as long as my skin holds up and there's no irritation/burning.
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Roberta, I have been wearing a prosthesis in a soft cotton bra that I bought per the radiation nurse's recommendation. The brand is Blue Canoe -- it was a little bit pricey but it's been very comfortable. I have two prostheses (not including the puffy things I got with my post-surgery camisole) and I find that the heavier one doesn't work too well because it pulls the bra down (since I don't have a pocket for it) but the lighter-weight one works just fine. I just finished #27 out of 33 treatments and I've been wearing the bra all along. Just this week, I've started having some peeling and skin irritation, so I think I'll take the bra off while I'm at home to give it a rest. I refuse to go out in public lopsided!
I hope your dd had a great first day of school! My ds just started 2nd grade on Wednesday and he seems really happy so far.
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Lauren, you got pretty far along before a reaction set in. What's in the Natural Care Gel besides the aloe? Is aloe the main ingredient? The stuff they gave me is OK, I guess, too soon to say if it works or not, but the ointment is a tad greasy when it's first applied (it's a vaseline base). I'm thining about al alternative.
Anyone find their recommended ointment/cream is NOT working? Have you tried anything else?
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Hi Everyone,
I think this is the gel Lauren is using http://www.allegromedical.com/skin-care-c535/natural-care-gel-tube-4-oz-p172720.html - Read the product overview. I never did find the 100% Aloe Vera. I thought Walmart had it - but the only one I saw had alcohol in it.
Well, four down and 31 to go - I think I have to do more than anyone here. The sharp pains have stopped but my nipple is sensitive and kind of sore - it seems to get better mid morning. But of course then I get zapped again every weekday at 4:00pm. Glad the weekend is here!!
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Hi everybody,
I'm new to your thread, but not to the site. I usually hang out on the May chemo board but have just decided to do rads. I had a second opinion yesterday. I'm going in next week to have my markers. I was a little upset since this will put my recon out until next June. Based on my tumor size and node involvement I was in that grey area. I'm glad to see some of you ahead of me, so I'm looking to you for all your advice and suggestions. I've heard rads are easier than chemo. True? We're all new to this so I'm just glad to be here.
Mary
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Hi Everybody -
Rose - I'm having the same number as you - 10 down - 25 to go. Also - I found the Aloe vera at Walmart - a HUGE bottle - I think the brand is Natures Earth - found it in the sunscreen section. It doesn't have alcohol. So far it is working good for me - not greasy or anything. I have started having a sore throat - hurts to swallow food - I asked about that and the nurses said the doctor would give me something for it - I am having radiation in several areas and one extends partially up the neck - thus the sore throat - hope it doesn't get worse - will let all of you know.
I'm glad the weekend is here tooooooo!! The hour drive to and from the doctors office gets old -
Roberta - I'm wearing a sports bra that I was fitted for - it has the pockets - 100% cotton - I don't put a prothesis in it - am using a weighted form that the fitting place recommended. I had chemo first - then mastectomy so was JUST getting over surgery when radiation started - the lady at the fitting place said that she wanted me wearing the sports bra (more support on the sides) to help with keeping lymphadema from developing. Since my doc uses markers she said I wouldn't want to wear a nice bra because the ink would get on the bra and ruin it - she's right - I have "blue" marks all over this bra but it will just be my radiation bra and pitch it when i'm done.
Just a tip for those who are having radiation in the lymph node area - under your arm - DO YOUR EXERCISES!! The radiation will cause the area to tighten up and you will need to keep it stretched. I'm already seeing that and I'm doing the stretches whenever I think about it. Also saw a lymphadema specialists who gave me exercises to do to prevent it from happening. Was fitted for a sleeve to wear when flying then too - I've worn it once - worked great. Only those who had lymph nodes removed need to worry about this.
Everybody have a great weekend - again - I'm so glad all of you are here - it's great to have people to talk to who KNOW what you are going through.
Stephanie
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NancyD,
You finish on my birthday!!! Go Girl!!!
Welcome Roxi - nice to have a familiar face! I also hang out with Roxi on the May2008 chemo board!
Kristy
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Well, I have an appointment on Tuesday to go in for planning, but I have this weekend to decide if I want to try MammoSite or Contura instead. I am so torn. Did any of you consider the PBI?
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Hi Mary! Absolutely would say radiation is not as horrible as chemo - just my opinion. I'm glad you are following through since you were in the grey area. I can understand being upset - you want tx over with. Hang in there!
Thanks Stephanie - I'll try and hunt again at Walmart. Hope your throat doesn't get more sore. I totally understand about the long drive - it takes me alittle over 45 min. one way- I logged about 148 miles - and that was only 4 days this week! Gas $
Have a Restful Weekend Everyone
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Yup, that's the gel that I'm using -- and I got it free from my rad's office, lucky me.
Nancy, I don't know if the gel is what helped me to keep my skin reaction to a minimum -- I think I was just lucky. And to clarify, it has been pinkish-red since the second week, but it really just started getting uncomfortable this week.Mary, I was also in the so-called gray area -- they actually took my case to the "tumor board" and came to the conclusion that they would recommend rads even though they weren't sure exactly how much risk reduction it provides. Since my cancer was also a Grade 3 I am glad that I made the decision to do rads -- with an aggressive cancer you never know where those little buggers might have gone, right? I am almost done -- 27 down, 6 to go -- and for me it has been a walk in the park compared to chemo. I think I've been lucky because my skin has held up well, and also because I go to a hospital that is less than 4 miles from home, and right on my route to work. If I had to go all the way into the hospital where I had my chemo (50 minute drive) I'd be way more exhausted by now.
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Hi, girls! Wow, I'm so glad it's the weekend and we get a little break. I had quite a bit of discomfort Thursday night (my third treatment) and was worried, but yesterday and today have been fine. When I thought back, I realized that on Thursday I forgot to put the Biafine on after treatment. Also, I realized that I do much better with a snug-fitting bra, because otherwise my nipple rubs and gets really tender.
Last night my girlfriends and I went out to a festival and got temporary tattoos. It was a nice, fun thing to do for myself.
Mary, welcome to the group. Keep us posted on how you're doing.
I'll tell you one thing, those of you who do chemo and then do rads are my personal heroes. And those of you who have mx then chemo and rads, well...your strength amazes me.
Here's to a relaxing weekend.
Cheers,
Ace
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Thanks ladies for such a warm welcome. I think I'll check into some new bras. My right side is just slightly swollen and when they took my measurements, I was pretty equal on both sides. I've been doing some stretching and exercising since my mast in April but haven't really invested in bras. My plastic surgeon recommended cotton sports bras so I'll shop this weekend.
Have a great weekend to all!
Mary
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