SEPTEMBER 2008 rads group
Comments
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Jean: How many treatments are you having? I was scheduled to start on the 29th but there was a conflict so I'm now starting on the 30th for 30 treatments. I won't be done until the first week of November. I'm headed back to the University this morning for more tests. EKG's, Lung scans, lung function, etc. Did anyone else go through all this pre-rads? I know some of them are because they are going to have to radiate so close to my heart and part is because I agreed to be in a study.
I'm getting so tired of being poked and prodded. I just want this to be over with it. How did you all do it when you just didn't think you could go through another day like this?
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Mary,
How did it go? I also question the decision of the rads but I had peace when all 3 of my cancer docs agreed so I try to concentrate on that rather than my doubts.
2 treatments down and I wonder the whole treatment- what am I doing here and can I run away- I still cant believe the last few months of my life!
My technicians gave me aquaphor and I also asked about Vitamin E cream since a friend who went through this earlier in the year highly recommended Genes Vitamin E cream from Sams- they said Vitamin E creams were good too so I picked that up yesterday at Sams- it is very creamy and feels great. I cant slather it on because I dont have tatoos (allergy to dye) and my techs told me to color inside the lines when I apply lotion.
2 down, 31 to go but I will be in the 20s by the end of the week!
Kristy
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Roberta, the only thing they told me not to take was my multi-vitamin because of the antioxidants. I take anti-inflamatory also, and they told me that was okay.
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I had my simulation and got my tattoos yesterday - then totally lost it!
Since my DX I have been taking this whole thing really well, not upset, scared, or anything. I couldn't figure out why it hasn't bothered me at all. All things considered everything has gone pretty well for me, but still, shouldn't I have had some emotion other than frustration at the length of time this seems to be taking? At some point I completely expected to break loose. Well, that was yesterday. I thought that I was completely OK with the tattoos, but totally lost it on the way back to work. Hysterical sobbing while driving down the highway. It could have been that I hate the traffic and try to avoid it at all costs, or that I have been exhausted from spending a ton of time on a big project at work, or maybe just the permanence of the tattoos plus the build up of the past almost 3 months, but it all came out. I called my husband and he was no help whatsoever, in fact, he made it worse - he told me I was being ridiculous. I wanted my mom! but it was the exact time she was starting work so I didn't want to bother her. I finally called her about a half hour later, and she pretty much calmed me down. I guess I was entitled to it, and I seem to be much better today.
It looks like I will be starting rads 9/25.
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Dancemom--Its ok to be upset about any of this--it isn't easy. People say that rads are a "walk in the park" compared to chemo and sometimes I wonder what park they walk in--none of this is easy or pleasant or a piece of cake...but..it is doable and necessary and we should be thankful they have the treatments they do for our cancer. I was waiting for my rad appt the other day and the man behind me had lung cancer with mets to the brain and spine--he's got problems---The process of the radation is what gets me down--lying on the table kinda exposed is really upsetting--more so than the chemo (I took the ativan for chemo and just kinda enjoyed being in lala land for a few hours). Sometimes we just need to let it all out and not try to be so brave for everyone to the point where it just builds up and then we lose it. Do something extra nice for yourself these days..make that your treat for doing this..I had a manicure the other day just because...This will be over soon and then we can get on with the rest of our lives.. Take care and good wishes to you..Embmom
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Good morning y'all...here I am, yet again...
Well, I went to my appt yesterday, and the techs took 6 x-rays to make sure the treatments were going to hit the right spots. After laying on the table for how many minutes, my right shoulder got a little bit sore, because that's the side I had the mastectomy on...Needless to say, I wonder if I'm always going to have issues with the radiation thing, because I started crying when they started my treatment this morning. The techs tried to reassure me, but I just want to be home. I keep hearing my friends say that I'm halfway thru with ALL this mess, but I'm SOOOOOOOOOO not feeling it! The only thing that really made my day yesterday...my friend wants to start another support group for those under 40 with cancer...there were pins in the start-up kit she received, and gave one to me; it says 'stupid cancer'!!! I think the website is called imtooyoungforthis.org. I'm going to check it out even though I'm over 40, because I like some of the things my friend described to me...
Anyway, 1 treatment, 32 to go...And as the techs say, this is my fight for a good cause?!
Well, I hope y'all have a great rest of the week...Thanks for letting me dump, and most of all...thanks for your support!
Sharon
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Hi,
Been reading some posts about radiation. I go for my "dry run" tomorrow and start my first treatment of 33 on monday the 22nd. Any tips or advice is appreciated. I feel more scared about radiation now than I did with chemo. I hope it's easier than chemo like I hear. I had a hard time with chemo, mainly the second half on the taxotere. Hoping I dont lose it emotionally on my first treatment. This whole thing has been such and long haul and emotional rollercoaster, I just want it done. Thanks for listening.
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I too have back issues, sciatica. I asked the doc and she said taking ibuprphen or aspirin was okay. Being on that hard table, even for a short time is a killer.
I've finished7 treatments and my skin is starting to get red and uncomfortable. Can anyone recommend anything other than acquaphur? It doesn't seem to being doing anything for me.
I pray each day for all of us to stay strong!
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I agree about feeling exposed on the table. At first, I kept telling myself I wasn't really there. When I went for my simulation, I had a cloth over my chest with my arms in stirrups. My eyes were closed and I didn't realize the techs were going to pull the cloth off in front of so many people (there were 3 in the room and two more one the other side of the window, one was the machine rep- I felt like screaming). I jerked my arms completely out of the stirrups to cover myself. I know they thought I was crazy. At UNC, it was like I was anonymous and would probably never see those people in public. But at the clinic (local), it's different. There's a male tech, too and I can't seem to adjust to that. He's nice, but I just don't feel comfortable.
It's weird - after my surgery, I would make jokes with the kids about not making me mad during radiation or I might turn into the Hulk, but once I started reading about symtoms and actually going to the clinic, it wasn't funny anymore. I cried all the time.
This week has been much better. In fact, today was #7 of 33 and I haven't cried since Thursday. There was a bridal shower for my son's fiance on Friday and I felt so much better. I think focusing on someone else helped me. In fact, I stood up in church Sunday and apologized if I had snapped at anyone lately. I had begun to let bitterness creep in and had been getting a little rude with people. The week earlier I had been somewhat abrupt (in front of the whole church) when someone wanted to pray for my family. I was terrible. They are loving and forgiving people, though. So many keep asking if I need a ride to tx's.
There's a song by Casting Crown, Praise You in this Storm and I keep it in my head and remind myself I'm not really alone. I seem to be adjusting better. I can't express enough thanks to this board - I've learned more here than from any pamphlet.
I'm experiencing some really nasty heartburn. I'm trying to watch what I eat, but I don't know if it's a SE, nerves or what.
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I bought Vitamin E cream- a friend who went through rads several months ago pulled me aside and told me to get Genes Vitamin E cream at Sams- she said she slathered it on every day. I asked the techs at my center and they said it was fine- they also give out aquaphor samples. I bought the cream and use it nightly and will also use it in the morning since my appointments are late afternoon and they said I could use something if it was at least 4 hours from treatment.
Ive only had 3 treatments so I cant say a lot about whether it will help- my friend had 30+ treatments and swears by it.
Kristy
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Ladies: I think I'm the last of us to start (9/30) unless someone hears my please to start sooner. Consequently, I don't have much advice to offer. I hated simulation but am told actual radiation is easier.
What I did want to say that you have all been such a blessing to me. Like many of you, radiation was like the last straw in my treatment. I'm tired of treatment, I'm tired of cancer and just want my life back. So, when I counted my blessings today, I counted each of you and asked that God Bless each and every one of us in the September Rad's Group. I also thanked God for my health. As much as I whine, I do have a healthy body to fight this disease. I am blessed.
Love and prayers,
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Jane - to answer your question from a bit above about the pre-tx tests, I had xrays and a CT scan that was a simulation. Anything else, they got from my pre-surgical work-up, including my PET/CT scan and MRI. I'm not part of a clinical trial, so they porbably thought that was good enough. Most of my tests were done in May prior to my last neoadjuvant chemo.
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A friend brought in some fresh aloe leaves for me. I slit them open and scraped out the clear pulp from the inside. I've saved it in a Tupperware container in my refrigerator (it spoils otherwise). I pick out a piece of the pulp and rub it over my reddened area. The coolness feels great!. I've just started yesterday, so too soon to say it's working, but it feels good.
The calendula ointment is greasy, and I've had to change shirts a couple of times as it bleeds through and leaves an oily spot. Not the thing you really want when you're trying to get out to work at 6:30 am, but I'm using it as prescribed. I rub it on after the aloe and then look for a top that won't sop it up like a sponge.
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Rad #13 down! They're doing something different tomorrow, switching the box-like attachment they've been using on my center chest. So tomorrow I'll have xrays and extra time for them to be read while I lounge on the rad bed.
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Just a query to throw out to the group. Do you have male or female techs? Or both? At my rad center, they have an all-female team handling the women, and an all-male team for the men. The changing area and post-changing waiting rooms are separate, too. Makes me more comfortable, obviously. I haven't had a melt-down, yet. Maybe when all this is done.
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Hi NancyD
I have one male and two female techs who rotate in and out on different days. They have been very professional about keeping me covered up as long as possible. I usually just try to make idle chit chat when they are setting me up. It only seems strange when the guy is marking on me with the sharpie or paint pen.
When they were getting ready to do the perm tatoos, I asked what color they would be. They told me black and I said that isn't any fun - I wanted something to go with the turquoise spot from the SNB dye (4 months ago). They said they didn't even notice the turquoise. I suppose that if you've seen one boob, you've seen them all.
I had #20 today. Let us know how the aloe plant works. I have one and broke a little piece off and thought it smelled like BO or onions. Not sure I want to try that yet.
Take care,
Julie
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#9 down for me. I feel a little tired (2 very active boys to take care of) and I have a VERY sensitive nipple. Anyone else have that?
Nancy: I have 2 female tech and 1 male and then 2 days a week I have 2 men and 2 women. I think the man that I see daily is gay, which somehow makes me feel more comfortable with him than the other man. Doesn't make sense but that's how I feel. Our changing waiting area is for men and women although I have only seen 2 men in 2 weeks. I know that if I felt very uncomfortable about the men that they would allow me to change and wait in a private area. I guess I am getting used to everyone looking at me since I've been dealing with this for months. I still don't feel comfortable, though. I'd definitely prefer all women, but this isn't too bad.
Good luck to all! Hang in there.
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Hi Ladies,
Jean, nice to hear a familiar voice (?). Kristy, my dry run today went well. My air bag pillow lined up perfectly and so did my tattoos. The doc came in and liked what she saw. All set to start on Monday. Becky, there's a couple other gals besides you and I that'll start on Monday. I started using my cream last week.
Asked the doctor about the mRI thing with my expander and she said not to be worried. None of the treatment I will be receiving involves an MRI. I need to avoid an MRI since there's metal in the expander.
Thanks for being here ladies, good luck and love ya!
Mary
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Jayloy - thanks so much for your prayers - keep them coming my way
God Bless you! I have 3 female and one male tech - separate dressing rooms.
Today is # 14 - still only tiny bit pink - still only using the Miaderm. The traveling is running me down - but getting to bed very early is helping.
TGIF ! Have a Restful Weekend
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Today will be #13 for me. I'm just slightly pink and hardly any fatigue. I'm just worthless after 8pm. I refer to the appts. like going to Mcdonalds. Pay at the first window, zapped at the next, then on my way. Of course, on Mon and Tues it was like jail. They were delayed w/appts. for an hour and we were all sitting around wondering what the "others" were in for. Kinda funny. Happy Friday!
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Nancy: My techs or both male and female although only one male. The waiting room where I will sit in a gown is co-ed and I don't like that. Since I had a bi-lateral w/out reconstruction, I guess I don't have anything to hide - LOL.
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How long after chemo did you start rads? I'm so annoyed. They scheduled the wrong type of appointment 2 weeks ago and now one of the "prone" machines is broken. Long story short: I won't be starting until 42 DAYS after chemo.
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separate waiting rooms and dressing rooms for men and women.
All the techs are young-ish men. Nice guys, though. But still... it's weird.
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Jane - so understand how you feel about just wanting to get these treatments over with. It's been a very drawn out process and the hardest part for me is the waiting in between. Waiting for the surgery, waiting for the chemo to start and now waiting for the rads to start. I don't know why I find that the toughest. Thanks for the prayers.
Rock - I had a scheduling mix up also and I'll be starting 41 days after my last chemo. I was told that most rad oncologist prefer to start their patients 4-6 weeks after chemo and we are both starting at the 6 week mark. They were going to put me off for another week but because it was their mistake I said I wanted to be within the 6 weeks and they could do what they had to make that happen.
It's great to read that everyone is moving along and not having any real difficulties. My biggest concern is the fatigue (still not sleeping since the chemo) and with working and two younger kids I want to put my energy where I need it most. Thought about getting someone in to clean once a week until the end of this (when I'm not working it's no problem). My husband is always saying "oh don't worry about it I'll do it." but the bathroom would literally have to be green before he thinks it's time to clean.
Hope everyone has a great weekend and I never thought I'd say this but I'm looking forward to starting rads next Tuesday. How strange our lives become??
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Goodmorning Ladies, Well its still morning where i live.
Nice to see the familiar faces from the chemo board, i'm not happy that you have to do rads just that i know who you are.
And nice to make new friends who have come from other places. Got 5 rads 1 boost down, now that i'm done my first week it seems to have gone fast. Don't have any skin problems yet, just a little puffy on the chest underarm area where they took the nodes, it feels like it did after the mastectomy. They said that was normal, so other than the tiredness i have felt since this all began back in Feb. I'm doing ok. I have 3 younger lady techs who are really nice which makes it easier to come every day, they are very efficient...i'm in and out walking out the door in 15 min.
Rock sorry things are delayed for you, that sucks...it's just nice to get the party started sooner than later ! Re: ?...I started my rads pretty much 3 weeks after my last dose of chemo, just enough time to somewhat recover !
Hubby and daughter are coming to visit this weekend, so looking forward to that . Hope everyone has a great weekend and good luck to those starting up next week.
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Hi rock! I think you're OK at 6 weeks. I started less than two weeks after my last chemo and thought that might be too early. But after talking to my med onc, I figured I might as well hit the buggers while they're still really down and out. Zap! Zap! But I know how it is when you've gotten yourself ready for things to start and there's a SNAFU. That happened to me back in March when I was getting ready to start chemo. All I can suggest is to internally chill, but keep an external aura of irritation so they take you seriously and react accordingiy. (See Roberta's situation)
Angels, are they giving you your boosts along the way, like weekly? I thought they were usually done altogether at the end. (Come to think of it, I haven't heard any mention of getting boosts, Maybe I should ask.)
#14 in a few hours. Wow, I'm almost halfway through my 30.
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Rock: For me there was 2 months between chemo and radiation but I had my bi-lateral mastectomy right in between. Not sure if that is part of the wait. I don't really understand the wait actually. I have just resigned myself to the idea of it being 9/30.
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Hi Everyone,
My place has 2 male techs (one does all the simulations) and several females. There is a private restroom with lockers and a private dressing room with lockers so changing is always private and they give you a little key to wear for the locker.
I may not have treatment today- they called and are having some kind of computer problem- IM Bummed since now my finish date goes out to Oct 31- I really dont want to go into November (mental issue) so I hope this does not happen often!
Kristy
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Morning y'all...2 down, 31 to go...I think I'm feeling a wee bit better about getting these treatments now...BTW, I have one male tech and two females...Unfortunately, I really don't have issues with people looking at my body...to me, it's not like they haven't seen a body before?!?
It seems like the weather is trying to clear up a bit, so that helps me emotionally, but I miss being home!!!
I do have a question...did any of y'all feel like your skin was sunburned after the 2nd treatment? My collarbone feels like it's been sun or wind burned...
Anyway, I hope y'all have a great weekend...
Take care and God Bless...
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Hi Nancy,
I have a total of 5 boosts, they are giving me 1 a week on Wednesday (so i get my reg tx earlier in the morn and the boost in the afternoon)... then the final two boosts in the last two days after my reg 16 rad zaps.
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princess - I feel the same way in the evening. But to be honest, mentally I've never been much after 9pm, so the conversations have been getting quite comical. Last Sunday, I asked my son to set up the ironing machine. Another one was to get the groceries out the garage (we don't have a garage). The kids just laugh and make do.
Last night I went to a time management class with my sister and the speaker was talking about how time is not equal to money and asked if anyone had ever been really sick because most people would not ask for more money, but for more time - that time was equal to life.That really stuck with me.
So, tomorrow instead of cleaning the yard, we're taking the kids and going to a local festival. I've also made a deal with myself that on every Friday I buy a new tube of lipstick (the cheap stuff) or nail polish and use it over the weekend.
Here's an idea for the one's with a long drive - we use audiobooks (from the library) on long trips and it really makes the drive go by pretty fast.
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20 Down - 15 to go!! YIPPEE!! Three more weeks and this year from HELL will be over. I am getting redder - itching is ok - as long as I use Benedryl gel. One thing I should point out that I have not seen written here - please put your lotions, creams, etc on your BACK!!! The radiation DOES go through you and you will get burns or redness on your back. I have that and some on the top of my shoulder (weird). Fatigue is definately a factor - more so on the days they use the Bolus - that is every other day. Not sure why but I have noticed that. I only have ladies that work with me - but honestly - at this point - chemo then mastectomy then this - well - I have pretty much gotten past who looks at me - I figure they see it all the time. Some of you have mentioned Boosts - I will get those at the very end - in fact I believe there will be 5 of them.
Hope everyone has a wonderful weekend - we're headed to Nashville to start looking for a place for my daughters wedding - have to book that EARLY to make sure you get what you want.
Hang in there everybody - EVERY FORWARD . . . . . BUT SLOWLY. Stephanie
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#21 down today, some fatigue and quite a bit of redness but I started using aquaphor and an aloe gel last weekend and the tenderness has been much better this week.
Had a busy morning getting an echo, CT and bone scan prior to radiation, even though I didn't have a set time for radiation the techs were right there holding the door open for me when I walked in! It's a small satelite cancer center and I really like it, the main center in the city is just too big and busy for my tastes. I have 2 female and 1 male tech, one of the females just came back from an extended leave so for the most part the male has been in there. Like someone else already said, I'm getting so used to baring it all that I have had to remind myself to finish buttoning up my shirt before walking out of the dressing room. It's kind of funny but I am not nearly as selfconcious about the unreconstructed mastectomy side as I am about the good "natural" side.
My radiation doc has been very insistent that I'm not stage IV because no biopsy was done and the met wasn't seen on the prior bone scans, I wonder what she'll say about todays scan as it lit up much more brightly. I'm also curious to see what the radiologist who reads the scan is going to put in his report since he has repeatedly ignored it in the past when it was only faintly seen.
For those who worry about the time between chemo and rads, it was 6 months for me. I finished chemo in February, waited 3 months then did scans to see if I would remain stable, finally got the mastectomy done July 1st and started rads in August. I'm actually about 1 week away from my 1 year anniversary!
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Jane - Looks like we are starting the same day under similar circumstances. My post chemo echo came back different from original and now need to see a cardiologist for approval to do rads, additional tests to follow. I had 3 different symptoms that I am hoping will revert back to normal, also hoping radiation will not make it worse.
Rock - starting rads 31 days after chemo, but the rad onc also indicated 4-6 week is the standard window. I totally get your frustration to want to get on (and over) with this.
My center has private dressing rooms, coed waiting rooms, women only nurses doing the radiation.
Jean
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