Summer 2013 Rads
Comments
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Hi,
I've just finished my 23 regular treatments and today I start 10 boosts. Has anybody had different reactions with the boosts? I am assuming it will just be harder on my skin in the targeted area, but I'm not sure what to expect.
Thus far my skin has held up with calendula cream, and I'm not very tired, so have been able to work, care for kiddos, etc.
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Happy today because I am moving on to boosts!! The end is finally in sight. Five boosts and rads will be done.
Idesim...we are 5/6ths done!!! YES!!!
Heart--I will see my doctor tomorrow but a tech mentioned something called "polymem" for the raw underarm skin, or any raw skin. Meanwhile, I am slathering on the emu oil and radiaderm and sleeping topless with the little pillows they gave me when I had my mastectomy under my upper arm to prevent skin on skin contact.
Blackcat2012--I have bolus every day also, 25/30 done as of today. I have made it this far by moisturizing with calendula, emu oil, and now radiaderm throughout the day and lately once during the night also. I am a teacher and I am off work right now so I can moisturize every two-three hours all day long. My treatment is at 8:20am. I cannot wear a bra (ouch!) and I am a uniboober so I have been wearing camis with loose cotton tops over them. Lefty is a borderline 36C so not too big to be braless--as long as I don't go jogging! Ha!
Gentle hugs to all
Linda 25/30 -
Yea Lin!!! So happy for you!!! Seems like it will be forever before I'm that far along. 3 down, 25 to go!
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Heart, no.. but it it getting really uncomfortable. I have been wearing a tight(ish) tshirt under my clothing.. that way I can keep the Aquaphor or Radiation gel on all the time.
What do yo umean by breaking down? Mine is rough and almost purplish.
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Idesim and Heart--My skin is rough, very sore, and almost purplish for several inches near and under my arm, too. Or as my husband says, "I've never seen skin that color"! I feel best slathered with hydration and topless cuz anything really hurts when it touches me. A friend wants to take me out to celebrate when I am done next Wednesday morning, but I may just want to crawl home and take off my top. Arghhhhh!!!! I'll ask my doctor for any ideas when I see her tomorrow.
GoWithTheFlow--You will make it through with a little help from your friends! I have that song on my mind as my daughter gave me some "Rockabye Baby" CD's with songs by famous artists, including the Beatles. Soothing music for rads! You may have very little reaction to rads. Sending good thoughts to you and your skin!!!
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So sorry for all of you folks with the skin soreness and pain. I will hope and pray that you all feel much better soon. The skin under my left arm is getting a little red and sore so I am using the Aloe Vera Gel and Radiaplex Gel more often. Just 4 more treatments to go though as I am in the study comparing Canadian RADS to American. I got chosen for the Canadian version where I get 15 treatments total and boosts simultaneously. HUGS to all!
Carolyn
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Thanks Lin. 3 down, 25 to go. My RO said after 13, the will "remap" me to prevent over radiating in any area. She does seem to be very good, guess they just didn't realize they needed to tell me what they were doing every step of the way.
Once a week I will meet with the RO (other than her coming in during radiation to check my positioning), and once a week they will take more xrays. So far so good. Skin is a little dry, not sure if it's because I haven't moisurized that area since before surgery, or from the rads.
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Idesim- Ok this is pretty graphic so anyone who gets queazy please skip this post.
By breaking down I mean the skin is gone. I have figured out the pattern now so I know when that is going to happen. For about a day before it happens the area I am going to lose is super red and kind of shiny. Then I usually wake up the next morning (my treatments are at 3pm) with the area being crazy itchy. Not just regular itchy. By the time I get undressed for bed at night the skin in the super itchy area is gone. Sometimes you can see where it peeled away, sometimes it is just gone. The area now looks like and feels like a skinned knee. It is just raw and either oozes fluid or sometimes blood. I am super careful not to scratch so I am not scratching it away during the day. This has happened to the whole under breast crease (except about 1 inch) and it is starting to happen under my arm.
My apologies to anyone who read this and got grossed out.
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Oh Heart I am SO sorry. Are you almost done, I hope?????
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Thanks Sciencegal- Almost done. Today is my last whole breast treatment, and then I have 5 boosts. The boosts should not hit these areas as hard. My RO did give me the option to take a break earlier this week, but with only 4 whole breast left I just wanted to be done.
I hope everything is going well with you and everyone else who just started. Gentle Hugs to everyone!
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Good! I am sending out healing vibes for you. I hope the boosts are okay and you are DONE without further suffering. Ouch!!!
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I had my CT simulation yesterday (June 19) and I will start treatments on June 27. I will get the usual radiation plan of 5 days a week for 6 weeks. The last week will be boosts. I did have the chance to join in studies of accelerated treatment or partial breast radiation, but I decided to go with what is known to work. At the simulation they made a body form for my left shoulder and arm to be able to place me exactly the same each time. They marked me with semipermanent markers - no tattoos. I will also be holding my breath to increase the distance between the radiation and my heart, as I will be doing left breast and I am small-breasted. For those who have not had simulation, there is no pain as the machine doesn't touch you, but you will have to lie perfectly still and not talk for a rather long time. I couldn't see a clock, but it felt like about 30 minutes. I have some pain in my left shoulder from arthritis and it hurt to keep my arm up and behind my head like they want. When I was finally allowed to move, I couldn't bring my left arm down without using my right arm to move it. The actual treatments will only take a few minutes, so it will be easier than the sim.
They didn't say anything about prescription lotions or creams, so I will ask the RO next time I see her about that.
Best wishes to all the others in this thread who are doing rads during the hot summer.
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So, yesterday I got "hit up" by the social worker who wanted me to fill out a form about being "distressed". Then she sat across from me smiling like I had something to say. Creepy.
Today, the nutritionist was waiting for me when I got changed back into my clothes. Now she had some good info for me that helped during chemo, so I was interested.
Apparently, I've lost 6 lbs. in the last two weeks. Not good according to her. to me, it's great. After gainin during chemo I'm happy some weight came off. Now some of that could have been swelling from my surgery 4 weeks ago, so it's really not a big deal, but she seemed to think it was.
I'm not dieting or trying to lose weight. I've been listening to my body. Eating when I'm hungry, not eating when I'm not.
I just can't WAIT to see who wants to meet with me tomorrow. /sigh/
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GoWithTheFlow- I had to fill out a form about my worries and concerns on my first visit with the RO. I met with the social worker during my first week of treatment. I agree with you, kind of creepy. She just sat there waiting for me to say something. Of course I am stressed. Of course I can't sleep. I've got many legitimate things causing this right now. But I don't really have a lot to say to her about them unless she can fix them. Which she can't. She suggested all sorts of support groups. I am not really a support group type of person though. This board is my support group. I really don't need anything else.
However, with that being said...now 5 weeks into treatment I actually went to see her. My husband and I had put off getting our advance directives done forever, and she provides a free notary service so we can get them done. She was still a little creepy during this visit though. A lot of silences like she was waiting for someone to start talking.
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Glad it wasn't just me. And while you are in treatment, especially rads which you have to drive to every day, who the hell has time for support groups? I want to get the hell out of there so I can use what precious energy I have to do something with people I love.
And I agree, this is my support group too!
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Carolyn--Great that you are almost done and your skin is intact. It will be interesting to see if America adopts the Canadian regimen in the future.
Please don't worry about being too graphic, Heart. The beauty of these boards is that we can spill our guts and receive the love and warm thoughts of others who understand and who may be going through something similar. I have some skin breakdown going on also. Yesterday some clear fluid. Today missing skin. My doctor gave me a medicated gauze to go with my Kenelog cream and the Domeboro compresses which you can get at Walgreens. My boost is hitting one bad area but not the rest. Strange how the bottom half of my chest looks red/tan while the top half and under my arm is flaming red and feels like little cactus spines have taken hold. I get the bolus for the boosts, too. Drat! I thought I'd be done with that! Four more boosts.
I feel for you, GoWithTheFlow. The support groups weren't for me either. This is my support group! And last week there was a flyer up in the rads women's changing room advertising a survivor/patient breakfast for Saturday morning. I cannot imagine a daily radiation patient wanting to spend Saturday morning at the cancer center. Isn't Monday-Friday enough for us? Sheesh!
Extra Gentle Hugs
Linda 26/30 Four more for us, Idesim!!!
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Well, got accosted by the social worker again today. She thought I didn't look good and looked really tired. ( huh.....really!?!?) asked me if I wanted to talk. (Nope). Finally had to tell her I am tired because the skin breakdown is keeping me up at night. She asked me if I wanted to see my nurse. (Nope, the nurse has seen my skin) More weird silent eye contact. The whole time I am screaming in my head for her to go away. I know I am being a b%!?%, and I know she is just trying to be helpful. Think my temper is getting short. Well anyways.....she finally leaves, but she tells my nurse to see me after treatment. So treatment took forever today. I really don't mind my nurse, doctor, or my radiation therapists checking in with me if I look bad. I am just not up to the creepy silent eye contact thing from the social worker.
On the upside though.... All whole breast treatments done. Yeah! Only 5 boosts to go. -
Ok.... I'm done complaining now. :-)
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Heart and Lin, very sorry to hear about your skin breakdown issues. Hope it doesn't get any worse over the last few treatments and that you then heal quickly.
Don't think I'd be too thrilled about a social worker in my face either! I have just enough energy for rads plus work - but that's it!
Found out yesterday I only have to do 30 rads rather than 33 - every little bit helps! -
Caitlin61- that's great about the 30 instead of 33.
Lin43, Cmbernardi, & Idesim- you're almost done. Yeah! -
Heart that sounds horrible!!! You poor thing..thats a nightmare...hopefully after today the worst is over for you. I started my boosts today and luckily my incision area has held up well.. no more armpit torture for me!!
Also luckily, I haven't had any social worker or nutrionists breathing down my neck.. I have no patience for support groups either.
I have to say, this went by a lot faster than I thought it would
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Caitlin--three less treatments will give you a big smile at the end. So happy for you!
Heart--no worries about your behavior toward the social worker. You don't have to appease anyone, least of all someone who should be good at reading social cues and understanding how treatment and side effects wear us down. So glad you only have the five boosts left! I took Percocet last night because I was tired of being tired and unable to sleep because of pain. I hope you can get some rest tonight and over the weekend.
Go Idesim! Let's rock these boosts
Gentle hugs!
Linda 26/30 -
Monday (day before last treatment) I notices weird little freckles all over and now they are covering my whole radiation area and my poor nipple is burnt/itching/swollen/dead skin and just awful feeling. This only started when they started the boosts last week. Maybe this is because I chose the 20 treatments but man o live OUCH! Make sure when you get to the boost period you really really take care of your skin. I didn't use any aquafor and I'm paying for it.
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Heart your description of the social worker is so funny. I know they are trained to listen, but not with creepy long silences. Geez!
This is my support group as well- which I attend at home, in jammies, with my little dogs in my lap. I agree - who wants to be att he cancer center any more than necessary??
Hang in there!!!!
Sending very careful hugs! -
Heart - oh wow- I hope your skin recovers quickly..I didn't know what they meant when they said about skin breaking down...
dr said on Monday he didn't think I'd have my skin breaking down - its sore, itchy and burny but today should be the last of the regular treatments ..next week is the boosts which they say they only focus on the tumor area..
Funny how you all felt about the social worker - I thought it was just me..one called me, one came to see me while I was waiting for rads.. I thought, why now? I might have needed something before chemo but at this point (rads) I felt like I just wanna get in and out and get this over with..I felt irritated at the social worker - she was nice but made me feel like -oh poor you, what can we help you with.. LOL
Here's well wishes to all of us.. especially those of us who can see the end of all these treatments nearing!
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My radiated side is sore to lay on now. I guess it's a little pink but it's hard to tell. BUT, it feels "stiff". If I touch it, it feels really dry and stiff. Normal? Just wondering. I've been using the radigel from the RO, but wondering if I need to switch off with aquafor too. They told me to ask for it when I needed it and I think I want to make sure I"m moisturized along with being gelled.
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Well this is all so new to me and its interesting to read all your comments... This coming Tuesday I have my first consultation appt with the Oncologist about radiation treatments. I've been wondering how it will make me feel .
I'm thankful to have this website to look at so I don't feel alone in all of this.
One good thing for me is so far I don't have to have chemo . Just radiation. And a lumpectomy . So I guess I'm very fortunate . It's still scary though ...... -
Welcome Goldycat. The girls on this post are great. I have learned so much. Congrats on not having to have chemo. YAY for you!!
Gowiththeflow the tightening is the "contracture" that almost always happens. It is expected (but not welcome, I know). It is from the skin trying to heal. Keep moisturized!!!!
Heart I hope you are doing ok today. Nearly done.
I was awake freaking out in the middle of the night and posted to see if anyone came through rads withOUT major problems. About ten women wrote back saying just pink skin or mild sunburn. Gives me hope! Fingers crossed for all of us just starting out. And healing thoughts to those who are almost done.
((((Hugs))))) -
I got some aquafor from the ro after my appointment today. Started my day with Pt. I can't say enough about that appointment today. My range of motion is much better than last week even though I hardly had time to do many of the exercises. She helped stretch under my arm a bit more, then worked on tight areas on my sides and back. I felt like a new woman. Went to Walmart and picked up a bunch of cotton tshirts and tanks to wear (like $5.00 each in pretty colors). Had my 5th rad, which went well. Ready for a nap now and nothing is scheduled for the rest of the day. WOOHOOO!!! Bring on the weekend and sleeping in.
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New to the board, it is so nice to know I'm not alone on this crazy roller coaster!
I was diagnosed with dcis in may, lumpectomy in June and radiation scheduled for July. Have been pushing for bi mast but keep getting told this is too aggressive. I find out today if I will need rad even if mastectomy due to dirty deep margins. Anyone else decide on mast when lump and rad recommended? I'm scared of sneaky cells creeping around!! Want to evict these bad tenants! Haha
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