What to expect from treatment and ways to cope with side effects.
Posted on: Jul 27, 2007 06:21AM
CarrieDee wrote:
Figured I would post this as a separate topic so people wouldn't have to dig to find out the information.Posts 121 - 150 (225 total)
Jul 26, 2009 11:56PM nj09 wrote:
Hi Lee,
I ordered the Jeans cream you suggested- starting my radiation tx in few wks... how frequently do you apply it- is it ok to apply before the treatment session? ( i read somewhere not to apply anything on the skin before the therapy session....)
thanks
Nj
Jul 27, 2009 01:43AM Leah_S wrote:
Usual recommendation for any cream/gel/lotion you use is not to put it on for at least 4 hours before a treatment, and to wash it off carefully before the treatment.
Leah
Jul 27, 2009 08:16PM katie1727 wrote:
Hello, I was diagosed with triple negative bc 11/2008, had modified radical mastectomy, 1/09 on right breast, with 2/9 nodes, tumor 6cm, Stage IIIB had chemotherapy and just finished 36 radiation sessions. I used My Girl's Radiaiton Cream. I wanted something natural, as I cannot use petrolatum products or mineral oil, which are in most creams purchased at over the counter drug stores. I did have a good bit of pain, as I was getting a large dose of radiation. My skin is just now beginning to peel. I used the cream three to four times a day, but not for 4 hours before my rad session. It is really soothing. My doctor has been very impressed with my skin. If you're interested you can purchase it at www.radiation.com I highly recommend it!!!!!!!! I did try aloe vera, but it didn't worked as well as this cream!!
Katie
Jul 27, 2009 08:28PM kk69Z wrote:
I also used the silvadyne and biofine. My radiologist gave them to me, but I'm sure somewhere along the line I paid for them. The one was to put on my breast like 6 times a day and then the other one I didn't use until I started getting really red underneath breast. That was about when I was on treatment 25. I forget which one I put where, but they both worked excellent. I used to wear one of my husbands hankies (folded it quartered) in my bra so the creme didn't get on my bra and clothes.
Jul 30, 2009 10:38PM drmel wrote:
I posted this on the August string as well. My doctor recommended X Clair cream. It's an rx and costly. I am red and only slightly itchy on day 16. No peeling though. I'm curious about whether my nipple will go back to it's original size and color. Does anyone know the answer to this?
Jul 31, 2009 09:33AM donnamariem wrote:
I was given biafine and betamethasone. I was to begin the biafine the second week and the betamethasone the third week. Both 3 times daily 20 minutes apart. The nurse had a great idea...take an old stocking and fill with cornstarch, tie a knot on the end and after applying the second cream, dab the area witht the cornstarch. Feels wonderful, especially in the underarm area. I keep it in a ziplock bag and carry it around with me. Today will be #19 and I am only a little red.
Jul 31, 2009 11:47AM Eldub wrote:
I tried many different things (Biafine, Aquaphor, My Girls Cream, etc) but what actually WORKED was Calendula Ointment (Boiron Brand, Homeopathic). It's widely available at health food stores and such - or online. It's very simple - just petroleum jelly and calendula. There was a large double-blind study that showed it much more effective than Biafine. Since Petroleum jelly is listed as the "active ingredient" in Aquaphor, I figure that's gotta be ok. My Naturopath recommended the Calendula Ointment - he was aware of the study.
If I had it to do all over again, I'd use just the Calendula Ointment and maybe some Alra Therapy Lotion or RadX (the latter 2 are creams, so absorb better and are less gooey than the Calendula Ointment, and they seemed to also help). At about tx 16, the rads nurse told me I was likely to end up with blisters, given how red and tender my skin was already (I'd been using Biafine and Aquaphor up to that point). But once I started using the Calendula Ointment, my skin got progressively LESS red, despite the ongoing rads treatments. (Rads doc wanted to know what the heck I was doing to cause such dramatic improvement! I told her - and gave her a copy of the study.) Skin didn't get red again until the very end - and still no blisters, etc.
Now that I'm 3 months post-rads, I'm using and liking the My Girls Cream as a nice daily moisturizer on the radiated area. But it did nothing at all for me during rads.
Good luck to everyone!
Linda
Aug 1, 2009 09:45PM Snappygoddess wrote:
Eldub ... I used the Calendula tea application and aquaphor and have been very fortunate that I have only gotten a dark pink with no blisters, no breaking of the skin and very little pain or discomfort! I asked my Naturopath about the Calendula ointment and she said she wanted me to only do the Calendula tea therapy first and then the last few weeks I can use the ointment too. The tea therapy and aquaphor have been a godsend!! My rad techs were very impressed with how my skin was holding up too. Have done 28 rounds.. only have 5 boosts to go!!
Aug 1, 2009 10:03PM Mouser wrote:
After i developed an allergy to Radiagel (which i liked very much for the first 3 weeks) my rad onc explained that he recommends Radiagel rather than a fat-soluble lotion because if the fat-soluble cream is not washed off completely, it may aggravate burning. Radiagel doesn't do that. So he recommended water-soluble "goop" (my word) -- but if you have rxns to Radiagel, don't use it!!
Also, because your irradiated skin is more sensitive, avoid anything that's given you problems in the past (fragrance, in my case). And just because someone else had (or didn't have) problems with some gel or lotion -- you might. We all react differently to rads!
finally -- be sure to report any skin breakdown, rashes, etc as soon as they happen -- don't wait until your next appointment with the rad onc, the way i did! Infections and skin breakdown get worse quicker than you'd think ...
Aug 2, 2009 06:53PM kane744 wrote:
When I was going through radiation (completed 4/09) my nipple was soooooo sore. One of the techs got a small paper cup, cut the bottom out and told me to put it under my tee shirt. OK, it did look odd but provided so much relief not to have anything rubbing against it. Also, none of the recommended creams gave me much relief. One day I stopped at the hospital pharmacy and asked to speak to the pharmacist there. When I explained my problem, he said he'd call around to different cancer centers to find out things they might use that he could compound for me. The second one I tried worked like a charm. Don't know what was in it, but perhaps it might be helpful to speak to a pharmacist.
Aug 4, 2009 02:55PM - edited Aug 4, 2009 03:18PM by whippetmom
I am not undergoing RADS but I was researching the radiation induced dermatitis issue for someone and came across an article about an Italian study showing that a glass of wine daily during radiation treatment signfiicantly reduced the untoward dermatological side effects, based on the beneficial aspects of polyphenols. It was just in the news last month.
http://www.reuters.com/article/lifestyleMolt/idUSTRE5602AV20090701
Published in this month's International Journal of Radiation Oncology....
http://www.redjournal.org/article/S0360-3016(09)00090-X/abstract
[NOTE: The amount of wine consumed is important - one glass appears to signficantly benefit and two glasses reduces the benefit.]
This comes after the 2008 studies which revealed that reservatrol in red wine could ameliorate the adverse effects of radiation...
I know that wine or alcohol in general has been contraindicated by many in the professional field - for BC much less during cancer treatment...but it is an interesting article and study and so I just wanted to share it with you brave women undergoing treatment.
Aug 5, 2009 01:05PM - edited Aug 5, 2009 01:06PM by Rose_wood
My radiation oncologist swore by Aquaphor. Unfortunately I was allergic to the ingredient lanolin alcohol. Apparently, the oncologist had never had a patient react to Aquaphor, and I had to be my own advocate and read what others were using at this site until I found 100% aloe gel and hydrocortisone cream to work best for me. Why they kept telling me not to use deodorant or talc or products with fragrance and then give me something that wasn't 100% pure was beyond my comprehension. Read and understand the ingredients, go online or call a product's 800 number if you need more information about a product.
Aug 8, 2009 06:28PM Bethie1 wrote:
I've been using Aquaphor vaseline based ointment, and it's working wonders.
Aug 9, 2009 11:48PM earthandie wrote:
Snappygoddess - what exactly are you (were you) doing for the calendula tea application? Is calendula tea readily availalbe? I've been having issues w redness and soreness - allergic to many products including tamanu oil - which got rave reviews by the person who recommened. Currently using aloe gel and calendula cream, but need something additional. Thanks and congrats to all who have completed this portion of the journey~
Aug 11, 2009 05:05PM Bethie1 wrote:
Hey gang!!! Well I didn't finish rads 8/4 as planned. I had a breakdown of my skin, so they gave me a week off. I finish finally tomorrow 8/12
Aug 12, 2009 12:25AM O3132W wrote:
BLIZ: My rad onc gave me a prescription for three tubes of Biafine emulson. I will take his word for it that this is what I need but the pharmasist at CVS is happier than I am. Three tubes of Biafine cost $209.00. Wonder what in the world is in it- gold? After my insurance pays their part my cost is still $50.00. I have just had my #1 rad treatment out of 16 (shortened rads). I sure it works to keep me from breastburn. Cathey
Aug 12, 2009 12:52AM Eldub wrote:
Toffey - I realize the My Girls' Cream has Calendula in it - that's why I got it. But it had no effect on my burn. (Don't get me wrong - I like the texture and smell. And am using it as a nice moisturizer now. But it had no effect during radiation in my case.) The Calendula Ointment actually has a homeopathic dose of calendula in it - that is, it has LESS calendula than the My Girls. But it worked a lot better on my skin - eliminated the burn almost immediately.
These is a large Phase III randomized trial that showed that calendula ointment worked better than Biafine for preventing radiation burn: http://jco.ascopubs.org/cgi/content/abstract/22/8/1447
No, I don't sell the stuff - in fact, there are several brands out there. I bought it from the nearby food co-op. I just wish I had started using it from the beginning, and not spent so much money on the other things (that didn't work) before that.
Linda
Aug 15, 2009 01:04PM earthandie wrote:
Eldub - I was having big trouble with my skin - started on Miaderm - felt good took the heat off, but i was allergic - then swithced to combo of many things including aquafor, Chinese burn cream, aloe skin gel and calendula cream. After not much relief, 1 wk ago i switched calendula cream - homeopathic - and my skin is improving greatly
hang in there everyone ~
Aug 17, 2009 11:53PM - edited Aug 17, 2009 11:57PM by otlady49
Aug 25, 2009 07:16AM Irishred wrote:
Curious, I had had 15 of 35 treatments, my skin is already very red, breaking out in small bumps and had two blisters yesterday. So I guess, (since I am a redhead and fair skinned) that I am going to deal with a lot of skin issues. Does any know if Zinc Oxide is and yes or no for the skin problems we have during rads. I was remembering how greast Butt Paste is and wondering if it could be used.
Aug 25, 2009 07:23AM Irishred wrote:
I posted this info in another area but think it might be helpful here also, After two weeks the itching was getting really uncomfortable. My sister, who is a nurse, told me to take a huydroxyzine (which she takes) for the itching. Within 5 minutes, the itching stopped completely. Its prescription but is for itching of the SKIN. My rad techs were clueless on this one. So I keep them on hand and only use if really necessary.
Aug 25, 2009 08:20AM O3132W wrote:
Hi all: I have been taking hydroxyzine prescribed for skin itching for many years. My family doc told me that it was a great allergy pill with almost no side effects. It comes generic and is not expensive and is also used for anxiety. Mine stops itching and has a mild sedative which helps getting to sleep Luck Cathey .
Aug 27, 2009 09:01PM MTG wrote:
Hi. I'm going for my simulation early next week and was wondering if anyone out there knew the advantage to using the creams before radiation ? Lots of the sites selling the creams suggest using them 1 -2 weeks before rads. (Of course, they've got an economic incentive.) But, I've also seen that many women posting on these Discussion Boards suggest it as well. Any clue as to how/why use before radiation is helpful ? Thanks !Sep 2, 2009 12:10AM Irishred wrote:
Well Hell, when I went in Last Friday for rads, the doc said NO, come back tuesday, so I went in to day and he said Hell Hell NO come back thurs and if it isnt better, we will wait till next monday. Its mostly my underarm. Its been really red but now I am pealing ( not like regular pealing) but about 10 layers of skin at a time. SUCKS I just want this done. I have been using, Miaderm, My Girls Radiation Cream, Hydrocortisone, and just got the 100% Pure Aloe Vera that I ordered online. Today when I was leaving one of the techs looked at my underarm and said" Did the Dr give a rx for Silvadene? I said NO, she had a look on her face like he should have, I said to her, Well if I need it take care of it. She backed right off and said No it will be ok. Lord I hate hospitals . Good luck to you all.
Sep 2, 2009 03:00AM - edited Sep 2, 2009 09:23AM by MTG
TCoffey - I dont know if your product does or does not work, but either way (perhaps most of all if it does work), I dont understand why you pretend to be simply a user of My Girls Radiation Cream rather than being honest and telling us you're actually the founder and owner of the company called Radiant Life that puts out My Girls Radiation Cream. It seems almost as if you're trying to fool us all. Lurking on this site to answer any and every question about a cream and itching, burning or redness with a plug for your product. Almost as if you're using our pain to make a profit. If My Girls Radiation Cream works any where near the way you claim, why not not disclose that this is your baby ? Speaking just for myself, if I can't trust you, the owner to be honest enough to fully disclose your ownership, it makes me question whether I can trust your statements about My Girls Radiation Cream and even question the product itself.
Sep 3, 2009 04:53PM - edited Sep 3, 2009 05:04PM by Eldub
Does anyone know how to report someone to a moderator? (I'm not sure that reporting individual posts would help in this case, as these posts are mostly written to hide the fact that TCoffey is selling a product.) This type of advertising, sly as it is, is still a violation of the rules of conduct of bc.org.
Sep 4, 2009 02:16PM - edited Sep 4, 2009 02:55PM by Eldub
TCoffey - I certainly have no objection to you sharing your experience. However, if you are going to mention My Girls Radiation Cream in a post, then you are obligated to mention that you sell it. Not doing so just makes it look like your are talking up your product to generate sales - which is a violation of the user agreement for bc.org.
If you want to talk about your experience and not mention My GIrls Radiation Cream by name, then no problem.
If your product is really that good, then women who use it (and don't sell it) will rave about it, with no conflict of interest. As MTG said, the fact that YOU are the one posting raving reviews makes me suspicious about the value of the product. Your conflict of interest is obvious.
I believe that you should either edit (to acknowledge that you are the founder and seller of the product) or delete all of your posts that are raving about My GIrls Cream.
I hope that is clear.
Linda
Sep 5, 2009 12:26PM - edited Sep 5, 2009 04:56PM by MTG
TCoffey - It's not that complicated: Sharing information about Calendula is GOOD. Deceptive marketing practices and misleading us all is BAD.
When you write things like: ""Best cream that worked for me on relieving the stinging, burning and itching is My Girls Radiaion Cream" or "It took My Girls Radiation Cream ...to stop the itch and get rid of the red burning skin" - and fail to advise the women here that YOU OWN THE COMPANY, that is - at the very least - MISLEADING and DECEPTIVE. You're not advocating Calendula, you're marketing your own product. You're giving yourself free advertising and not disclosing that you profit from the sale of My Girls.
When you write things like, "The Hungarian Cream that I bought last summer is the best" , that's either frighteningly close to a major fib or when you say "Bought", you actually slyly mean buying the rights to US distribution or buying the formula or buying outright ownership of the company rather than simple buying a tube.
And best of all, when you write: "Here's another breast cancer survivor's comments using My Girls Radiation Cream, a calendula based cream that fights burns heals wounds and lessend pains" THAT'S PURE INFOMERCIAL. Only in this case, unlike advertisers on tv, you're not paying for the advertisement. More importantly from my point of view, there's not that little tidbit advising me and the other women who read and rely on your comments that "THE FOLLOWING IS A PAID FOR ADVERTISMENT" or other helpful disclaimer that's let's us know that what we're about to see, read or hear isn't simply helpful information or one woman's opinion, it's Information + Commercial = You're making money here. It's pretty appalling how many of these so-called testimonials you've posted on this Board.
If, as you write above, you're "sharing information" and going to "share with others who are going through this to be helpful", then I suggest you also share the fact that you own the company that sells My Girls. I'm pretty certain that those of us who going through this will find that little nugget of information to be helpful as well.
Sep 5, 2009 01:03PM j414 wrote:
MTG - well said re: My Girls Radiaion Cream. It's the equivalent of a securities analyst enthusiastically recommending a stock, without disclosing they are a majority shareholder and stand to profit if people purchase the stock. In SEC parlance, that would be F-R-A-U-D.
Anyway, I had a great system by the third week of radiaton. I'm very fair skinned and was bright red, itching and beginning to peel w/in 15 treatments. My doctor was a little surpised and wanted to stop for a couple of days, but I wanted to push on. I had tried acquafor, but it made the itch worse, but my doctor said it was one of the best ointments to moisturize and heal the skin. So, I started using it again, but first I put on a layer of cortizone cream, then a thick layer of acquafor (especially around the nipple) and then I covered that mess with two xeroform bandages and wore a sleeveless ribbed t-shirt over it (no bra) and then a sweater/button down shirt on top of that. I did this immediately after my radiation treatment, wore it all day (replenishing the acuafor after 6 hours) and then removed it at night, gave my breast some air, and then put the whole mess in place again right before bed. My breast was literally saturated in goop 18 hours a day - and the redness significantly subsided over the course of a weekend. I finished radiaiton about two weeks ago and my skin is (shockingly) almost back to normal. It's only slightly tinted at this point, no itch at all - and I'm still doing this same routine (and will contiune to do it until I follow up with my radiologist in 2 weeks). The xeroforms are a little pricey, cost me about $40 a week, but I guess a good gauze, saturated in the acquafor will work too. I would reccomend the big tub of acquafor - it's really inexpensive, about $19 (and that's in manhattan) and I'm still on my first tub. Also, (suprisingly) acquafor washes out of clothing quite well. I just scrub the area with soap before throwing it in the washer and the oil stain disappears. At a certain point, I was also using an ice pack, which was 1/2 ice, 1/4 water. I never put it directly on my skin - just placed it on top of my t-shirt and left it there intermittently throughtout the day. That also helped a lot.
The key thing is to moisurize all day and do not scratch or scrub with soap. And if the itching is even slightly annoying, slap on some cortizone - it will help a lot.
Sep 5, 2009 05:15PM MTG wrote:
J414 - I love the idea of your system. Makes perfect sense so that rather than absorbing into our cloths, the goop goes exactly where it's supposed to go. My only question is: do the Xeroforms retain the radiation "heat" as well the lotions so that we'd be increasing potential discomfort ? What's your thinking ? Will have to research xeroforms since I don't know where to find them.
Found out yesterday that my radiation starts September 16th so I'm doing all my shopping in advance. Thanks.