MARCH 2010 Rads Group
Comments
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Charmaine - I am using the Jeans Cream (it was recommended to me by the onc. nurse) and SO FAR, so good. No burning or irritation...just some minor pinkness. I'm just starting week #3 today, so it may be too early to tell, but so far it seems good.
Have a good day :-)
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OMG the testimonials sounds great!!! I too am going to ask about this sooner than later....Thank you Charmaine!
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Posted this on the February board as well, but you guys seem much more active.
Today is my last treatment. I'm baking brownies for my rad team. They were wonderful.
Don't feel much like celebrating, though. My husband's 19 year old coworker was killed in a car crash early Easter morning. My husband works with his grandfather and mother and father as well. Sad day.
My husband and I are going to Disneyland in a couple of weeks. Maybe we'll feel a little more like celebrating then.
Mary
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Mary - Your news is both so great and so sad, but I'm going to focus on the first. CONGRATS ON BEING DONE & KICK IT IN AT DISNEYLAND!
Looking forward to SLAM DUNK #20 this afternnon and also getting prep. markings for when boosts start next week! Red, puffy, and peeling left breast but hanging in, it's manageable with the Biafine.
My official bday was end of March but was in no mood for celebrating and am SOOOOOOOOOOOOOO looking forward to our celebrating it at month's end when I am D-O-N-E!
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Hello,
I am currently receiving rad treatment (20/33 done). The skin is doing ok and I apply 100 percent aloe vera on it. The condition worsened more last week. My main issue is the swelling, muscle and bone pain! Does anyone else have these problems?
Michelle
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Hi ladies,
I hope everyone had a wonderful weekend off! I'll have my 11th treatment this afternoon and am tolerating it well so far. I haven't noticed any SE except for a slight full feeling in the radiated breast. It's early though and I'm worried about what's to come. I've been very diligent about using the cream my onc prescribed (XClaire) 4 - 5 times a day and going without a bra as often as possible. When I do need to use one I wear the post-surgery bra they gave me at the hospital. It's very soft and loose. I also try to keep the folds dry with corn starch and use a hair dryer, set on cool, to dry under my arms and breasts after showering. I'm interested in hearing what others are doing or have done to help lessen the SE of radiation.
Raili - I've seen your posts and understand your anxiety. If you can't speak to your radiation onc, you need to call one of the other doctors involved in your care and ask for a mild sedative to help you get through radiation. I hope things get easier for you very soon. Good luck!
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Hi Everyone,
Michelle, I am a ways behind you (11/25 done), but have had swelling pain and some muscle pain starting about #3 - nothing too bad, just uncomfortable particularly in the afternoon. My skin doesn't appear to be an issue... so far. I asked about the swelling and muscle pain, and no one (nurse/doctor) seemed very concerned.. it just happens to some people was the impression I got. It does seem to help if I consistently (a few times a day) do some yoga-type stretches with my arms, stretching the chest muscles out.
Was anyone prescribed "Radiagel"? - it's like a very expensive prescription aloe gel. I'm using it, but feel like it's one of those things that drug companies are just plain making money off of. I keep using it since there are other un-identifyable ingredients that might be doing some good. But, it doesn't dry well, so it's always tacky and sticking to my bra. AND.. it has parabens in it. Isn't that one of things we're supposed to avoid?
So .. good Monday morning to all. Let's hope for a easy, lowish-stress week for everyone!
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9 down however many to go. Still no side effects worth mentioning.
I looked at the website for the Jean's cream someone mentioned. The ingrediants seem to be nothing more than aloe vera and vitamin E---thats what Tocopheryl Acetate is according to the internet. In that my doctor told me to avoid vitamin E, and the price is pretty high [2oz for $21 versus the calendula creme my doctor recommended which is $10.50 for 2.5 oz AND which is working very well] I won't be checking further.
I did want to say one thing which is not directed at the particular item mentioned but just in general: whenever you consider buying something you find on the internet, remember that the fact that a website has great testimonials doesn't mean there really are great testimonials. Anyone can type anything onto a website and unless problems come up --people are injured so authorities step in or someone finds they are claimed as being a reference when they aren't-- no one will ever know the difference. Before shopping the unknown on line [particularly anything connected with cancer because the sad truth is there are lots of people perfectly willing to take advantage of cancer patients with false and specious claims related to cures and the like], check just as hard for complaints and where medical things are concerned, always talk to your treatment team before you shell out your money. That concludes my consumer education piece for the day.
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Happy Monday afternoon to all of you. Going to my rad #13 today. Starting to see redness under my breast, so considering wearing my shelf tank tops for the remainder of my treatment so I can avoid any further problems. I also bought an aloe vera plant. We had a glorious weekend with the kids, coloring and hunting Easter eggs, and then bought a few Japanese maples to plant in our yard.
Hope all of you ladies are doing well. Slam dunk it today! -
SLAM DUNKED #20 today (woot woot, in the 20s now) and also got marked up for boost. Actually slam dunked 2 gowns today, because they made me put on another gown after I'd changed and before they'd mark me for the boost, so I'll call them gowns #20a and #20b.
Completely agree with 3monst regarding testimonials, particularly on these boards where we are all so vulnerable and sharing. Sometimes they sound more like informercials from people who own the company than from actual innocent BC people like ourselves. Therefore, I only use what my Dr. tells me and @ $21 for a little 2 oz thing, no way would I try this jeans cream. 100% aloe or Biafine -- that's it and truth is some people will burn, some won't, and some will be in between no matter what, just genetics and past environmental factors.
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I had treatment #10 of 21...nearly half way there! As it was a school holiday for Easter Monday, my DH and 10-year-old daughter came with me for the first time, as they've always been in school (DH is a teacher). Anyway the technicians were wonderful and let them come into the treatment room while the set up was being done. I thought it was a good idea for my daughter to see first-hand rather than wonder and think about the unknown. They both found it very interesting and I was glad they were allowed in. I also took my DD to the wig shop last December before I started chemo and they let her try on a wig.
I did the slam dunk today too!!
Sherri
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I paied attention today and figured out one reason they want you to ware the gown. They use it to adjust your positions. At least that's what they do at MGH. They don't want you to move around on the table for them. They pick up the gown and move you around. If you don't have anything on, then they don't have anything to hold-on to move you. But of couse, I guess you don't have to ware it, you can just lay the gown on the table flat for them before you lay down.
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iamomei - when I was going for my radiation treatments up to March 30th when they finished, that is exactly what they did with my gown too..
CharmaineTo all: for those of you that got dark or bad burns, did some of you get burns in the area of your areola and nipple and of the burns in this area has it started to peel? Of you's that got bad burns, has your breasts started to swell much, my right breast has swollen quite a bit and I so hope the swelling goes down soon. (as very uncomfortable)
Charmaine
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Happy Monday - I had my 19 treatment today and I'm holding up pretty well. I was told at the end of my session that the facility I go to each day will be closing for construction 4/15. They are transferring my mold and my records to their other facility about 40 minutes away. The techinican was offering me the available time slots and mentioned that they were going to cut my treamtnets short by 5 treatments. My oncologist prescribed 28 treatments with 8 boosts. She said that the last 5 treatments the dose would be increased to justifiy the reduction in treatments. I was upset and asked that nothing be done with my chart until I see the doctor tomorrow. I feel so upset I have gone this far and I want to complete the treatment the way it was prescribed. Do you gals think I have the right to feel this way or should I be happy with the increased dose. What is the dose doesn't agree with me. I feel they should have discussed this with me before asking me to commit to a new time slot at another facility. I can't wait for this to be over with. I did that slam dunk today and thought of everyone of you. Hope you all have a great weel. Kathy
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#24 today. I have bad burn under breast...I'm using cornstarch and trying to put a tissue under breast to
help with irritation. I only have to work one more day this week...and 2 more rads this week....
Leaving for Washing D. C. Wed after treatment with my husband on a conference...I'm tagging along
so hoping my breast heals before I return to rads on April 12th....I am so looking forward to
2 days doing whatever I want at the motel while my husband is in conference and we will site see on
Wed & Thurs eve.....Cherry Blossom Festival is going on so should be beautiful..
Prayers to all having side effects...........
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Had my 13th treatment today and I asked my rad onc about Jeans cream, she said she has heard so many wonderful things about the cream but told me she thought in her opinion it was way too expensive and to stick to 100% Aloe and aquaphor for the scar and areola as it was just as good and the complaints she still gets who are using Jeans are = to aloe/aquaphor.............
Irishmom I too would feel like I would want to stick to the recommended treatment as that is what they originally planned. Ask them why you cant do that somewhere else......and good luck!
I was told today that they need to do maintenance on the machine tomorrow and asked for a earlier appointment but I cannot do it, so it looks like a day off for me....however I do know that I have to add it to the end! OH WELL, I am going to enjoy the day off anyways!
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Hi, the only cream I was told to use is called Glaxol Base. It's an over-the-counter cream and I got a very large tub of it at Costco for under $15.00. It's really good and I've had no trouble so far (knock on wood). I know of other women in my area using it, too, and have had no problems. It's recommended for radiation and laser treatments. I think it's available in the US. Here's a link about it:
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Denise-
I too had a bad burn under my breast. I tried cornstarch, aloe, aquaphor......nothing seemed to work. Then, the rads nurse gave me some wonderful gel burn pads that I could apply to the area under my breast-they are called Carradress. Ask about them next time you go. As far as I know, they are not available over the counter. With the burn dressings, I was able to continue my treatments and the area healed in about 1 1/2 weeks.
I wish you the best of luck with your burn-I feel your pain.
Mary
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Irishmom; i would be upset also. It just seems common sense to me by increasing the dose in a shorter time span would cause one to be more apt to burn. Remember back when we sun tanned, we went out for short periods of time and built them up so we wouldn't burn. Don't know, just thinking.
18 down 15 to go. I have a red rash under my arm and between my breasts that didn't go away this week end. Irritating but livable. what IS bothering me more is the lump of scar tissue under my nipple. My tumor was at the bottom of my breast and the surgeon went in under the nipple to get it all. The lump has swollen and has become very tender with shooting pains. Any one else with this?
Flo
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I hope everyone had a relaxing long weekend and a nice time off from rads.
Usually on the weekends my skin heals up a bit and recovers from the radiation the week before.
After these 4 days off I thought I would have extra time to heal up before I start again tomorrow.
But no....tonight I am feeling a real irritation from the burns - upper rib cage (under my breast area if I had one) and under arm being the worst of it.
Just 4 more rad tx for me - can't wait for this to be over!
Gentle hugs to all!
Marie
Marie
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#5 today-29 to go! Still teaching and trying to get over a nasty throat, chest virus thing. Checked today with my secondary insurance that I have had for over 10 years-"Cancer Policy." Never any claims before. After some reimbursement all bills from lumpectomy returned stamped, "Not Covered." Rep said under policy only covered for radical mastectomy, not lumpectomy! Totally blew me away. How can this be possible? Anyway, all good so far with radiation. Counselor told me to regard radiation as my friend and partner in the healing process. "Embrace it," she said. Ok-good buddies now with healing process. Anyone had this insurance issue? Glad I have good primary insurance, but why did I pay all these years for cancer policy?
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I only have a minute, so this will be quick -
No more slam-dunking for me, because they changed their minds and are allowing me to wear my own t-shirt into the room instead of the gown!!! I am so relieved!!! The gown really ISN'T necessary. Xiaomei, I think they use the gown differently at the facility you go to - where I go, the gowns are worn tied in the back, so when you lie down, you're not lying on the gown. You actually have to untie the gown, take your arms out of the sleeves, then get the gown out of the way... and you're lying on a sheet that the techs tug to position you correctly. So, I'm still lying on that sheet that they tug on, but just topless in my jeans, with no gown at all. So much better.
I still cried buckets yesterday, over seperate issues, but I'm getting lots of info about therapists, support groups, etc., from various people... so it will be okay... it's just rough right now.
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Raili,
So good to hear things are going a little better. Have to say, my place is like Xiaomei's---the gown is open in the front and they use it to tug me around on the platform however they have a sheet or blanket to lie on as well.
Raili, what you describe has me scratching my head as it doesn't make sense at least not when the rads are for breast cancer. Why on earth would you have the stupid gown open in the back? I would agree that in your case, I'm not sure why the gown. Glad they finally agreed.
Hang in there and don't forget to administer your dark chocolate 3x each day along with the lotions!
editted to add, Day Ten done.
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Today was #7 for me - the skin in the middle of my chest is starting to get a little itchy and red -my onc said to use cortisone cream on the area...anyone else have a SE like that? I wonder if it will get worse as my treatment continues. So far, my treatments have been very easy...I'm in and out in about 15 mins...sometimes even quicker.
Raili - glad your techs are finally going to let you go without the gown. I thought of you this morning when I was getting into my gown...I wish they could at least give us prettier gowns to wear than the ugly hospital gowns we have to wear.
I hope everyone has a great afternoon!
Liz
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mommaof2, yes I definitely have that se and my onc had to finally prescribed something stronger because I tried cortaid for a week and it did nothing only got worse. Started with the new meds today so we'll see if this will work....if it doesn't I'll have to take a oral pill.......more weight gain according to the onc. I only have 10 left so I'm hoping to hold out.......
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cabmom - you say that the cortisteroid cream for you did not work. Did your RADS Oncologist then prescribed you Silver Salfadiasine? That is what I was prescribed when I thought I was reacting to the cortisteroid cream, but then I really started reacting to the Silver in a big way... and have gone back to the steroid.
I guess you can say I am healing around the nipple area where it was also really burned (it is really peeling in the area of the areola and I was told that is good as there is new skin from under the burn coming in) but the underarm is the area that is still really burned badly and that is gonna take some time to heal.
I wish you luck with your healing.
Charmaine
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Charmaine, the onc told me to use Cortaid over the counter first and it did not work, then today he prescribed Hyrdrocortisone Cream USP, 2.5% and I've only used it twice so not sure how this is going to work but hopefully it will because I don't want to take any more oral medication......I think I'm just tired of medicine. I'm only a little pink on my breast so I'm doing ok in that respect.
Hope that something works for you soon........
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Cabmom, I am trying the hydrocortisone cream again and alternating it thru the day with the Aloe Vera 98% gel that I purchased at the Health Store...
The burn in area of the areola and nipple is peeling quite a bit and someone here where I live told me that is a good sign (started to dry out before it started to peel). This person told me when the burn started to peel it meant it was healing... so hopefully bad burn under the underarm will do same thing (that burn is taking a long while to start healing. I am nearly a week post radiation therapy.
Charmaine
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Charmine, I've been using EMU oil for the burn and it's working great...only a little pink!
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I've just officially joined last week but have been reading everyones posts for the past few weeks. It has helped a lot to know there are others going through the same treatment and having the same issues. This experience has made me see that I'm actually braver then I really am and so are all of you. I had my 10th treatment today, 23 more to go.
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