Summer 2013 Rads

Heart2930

Sciencegal-like GoWithTheFlow said the only thing I have seen like that is the plastic they use to create forms, but it s white at my center. Did you get tattoos? Maybe they are using this instead? How are you doing? Not as bad as you envisioned?



Welcome to everyone just starting out!



My skin seems a little better today in the areas that are not broken down. Not quite as red. No new breakdowns overnight either. Yipee! Seems like the smell is almost gone too. Just started tamoxifen this morning. Kind of waiting for something bad to happen. Nothing yet. Ok......so it's only been 4 hours.....



Happy Weekend! Healing vibes and gentle hugs to all.

GoWithTheFlow

heart, glad you don't have any new breakdowns and your skin isn't as red today.  Hooray for those small things!

I'm off with a friend to get a mani/pedi in red for the 4th of july!  Have a great day everyone!

encyclias

Sciencegal, what you are describing as gold chainmail (lol) is a form of bolus.  They have a photo of one at Google images.  It's actually very pretty.

I had asked my RO if I would need a bolus, and he said no since I hadn't had a mastectomy, and explained a bolus was to put some 'insulation' between the beam and the internal organs since there was no longer any breast tissue/fat to protect the lungs and heart to some degree.

sciencegal

Encyclias thank you! As usual the wonderful girls on this board have more practical info than the medical techs or doctors at my place. I could not have a standard bolus because my tumor was so large- 9 Cms (yuck) so it makes sense that they could use that gold skin bolus for the entire breast mound. It is indeed beautiful, I feel like I am going to a disco haha. I used to have chainmail earrings like that in high school.



Heart, so happy to hear that you might be rounding the bend and starting to heal a little. I really appreciate you sharing your journey- lin as well. Although your results really scare me, I know what to expect if/when the skin gets bad. And knowing that after all this it can start to heal is really useful!



I study regnerative medicine in our lab, so I do know that the skin stem cells will migrate into the wounded area and start doing their best to repair damage. I was just wondering if, after being hit day in and day out, there are any left to migrate there! Sounds like there are.



Thanks to all for sharing your journeys.



And good luck to all of us just starting out, we are in this together!

AnnieLane

Well, I've had 20 of 25 treatments now and am thankful that my skin is doing so well. My incision (which I was thinking of as a scar, but looks more like an incision again) from lumpectomy stings and I feel internal pain in the lumpectomy area also. I have a red rash in some areas, but I think it could be so much worse.  I'm glad I'm almost done, because it's getting miserably hot here in South Texas now and sweat definitely doesn't help the skin situation.

sciencegal

That is good news Annie! I hope your final treatments are okay too. Good for you, yay.



My mastectomy scar stings for about two hours after the rads. I was wondering if it was an emu oil allergy, since I put that on right away, but there is no redness or anything else. (is emu oil really from emus???)



Thanks for posting that - guess it is part of our "new normal" huh?

GoWithTheFlow

I was told by my PT that emu oil does indeed come from the body of an emu.

ldesim

Heart glad you are seeing improvement already! From what I understand SE's on Tamoxifen take awhile to start... I am two months in now and so far so good.  

The chain mail does sound pretty.. I'll have to look it up.

Orchard auction sounds like fun! Hope it went well.

AnnieLane

Yes, emu oil is from the body of emus and being an almost-vegetarian and an animal lover, I had qualms about buying it, and still feel a little creepy about using it. I try not to think about it. I'll probably never buy it again, but I'm not opposed to using or eating animal products from humane sources when there is real benefit to human health (in this case my human health.) Of course I have no idea if those emus were treated humanely. I only bought one 4 oz bottle and I've also been using aloe gel, the cream my treatment center gave me, aquaphor, and samples of prescription biafine left from when my husband had rads for skin cancer awhile back.

My RO said the stinging is from the radiation.

sciencegal

So interesting about the emu oil- thanks!

Annie I bet you are way healthier than I am, being vegetarian. GOOD for you!

I think this one small animal-based expenditure is well justified. Emus are super huge, one of them can likely give us a lot of those tiny bottles of oil. I thank them.



A wonderful woman Pmd me and said she was using miaderm lotion only and her skin did well, and the ladies in her waiting room who were using aquafor or other petroleum products had fried skin. It makes sense that petroleum products would intensify the rads (i am thinking of lotion vs oil when suntanning...).

I know we wash it off before rads but maybe some stays under the surface? i am very interested in this. I have aquafor, for later on, but am inclined to not ever use it now. Just the emu oil after rads and miaderm or calendula lotion at other times.

Thoughts??

regbeach

I have been using Miaderm on my mother 3 times a day and (knock on wood) her skin looks fine.  Maybe slightly pink in the crease after rads. She gets accelerated Canadian regimen which is more grays per visit but less cumulatively. She is at 11/17.  I recommend Miaderm.  You can order it on Amazon.  I use Prime shipping which is usually 2 days and have gotten it in less than 24 hrs.  On second tube now but we put it on generously.  As long as you use it at least 4 hrs. before rads, you don't have to wash it off either.

karynhelen

Happy Weekend Everyone!

Thank you all for your suggestions.

I started Rads on Wednesday and after the 2nd treatment I noticed redness and even a little itching. I was thinking it was just my imagination. At least the itchiness. But today my breast is really red, my nipple is really dark and sensiive, and my breast is hot to the touch. I saw the nurse on Friday as I was leaving and she took a look and said that she didn't think it was an infection and not to worry about it.... Not worry? My boob is red and hot after 3 treatments and I have 27 more to go... (last 5 are boosts)..Has anyone else experienced this so early on? I didn't expect this until about the 10th treatment. 

It's been 108 degrees F here in Cali and I sooooo want to swim, and use deoderant...  Ok, done bitching. I know it could be so much worse and I am thankful I didn't have to have Chemo. 

Big hugs to you all and I hope you are all having a very relaxing and healing weekend. I'm continuing my treatment, from this moment on, believing that no matter what happens, we ALL can get through this. This is so very doable. The Booby -Q's the red hot boobies, the discomfort and even the really bad reactions... THis is ALL temporary... And in the long run, this is a good thing for us.

Again, big big hugs!

Karyn

BTW, my doc and nurse recommended Calendula gel and Aloe Vera gel. My husband is a natural products chemist and a chemistry prof and said thought that was a great call!

IamNancy

I used aloe gel during the day and aquaphor at night - I did ok - little burny but bearable.. now I am at boosts and have 3 left - had to switch to silvadene cream last week because it was getting really burny-especially under my arms..I am very red and sore in spots..but hope it doesn't get any worse... I felt like the aquaphor was wonderful - it is sticky though but thats why I used it after I got home from work with an old t-shirt..

slv58

Hi Nancy, I know your a little ahead of me in treatment-I had to stick a LX in there after chemo!, but want to ask you how your eyelashes, brows and hair are doing? I lost 95% of lashes and brows by mid April while doing taxotere and have been waiting for some signs of regrowth- instead yesterday I lost the last few lashes I had coming up to 8 weeks pfc. My hair has started to regrow around the sides but I'm still pretty bald on top-whats with that?

Karyn thanks about tip about calendula gel. I start rads on fri and was really not given much info, so I appreciate everyone's suggestions. I did ask my RO about emu oil and he said no because of it being an oil (like putting butter on a burn=ouch) but so many women find it helpful -does your husband have an opinion on that? I think I'm going to buy a small bottle to try anyway-and calendula which I have used for other skin issues with good sucess.

Hoping everyone's boobies are enjoying the rad rest this weekend!

Anonymous

slv58~~I'm 6 weeks pfc, and like you my hair has been coming in on the sides, but barely anything on top. I hear that from a lot of people though. My DIL told me last night, that our hair always grows thicker on the sides & at the nape of the neck even without chemo. I got so aggravated with the Male Baldness Pattern, that I buzzed my hair again last week. We'll get there soon.



Blessings

Paula

ldesim

Slv.. my hair grew back the same way.. the sides and back were coming in and very little on the top.    I too feared it was not going to come in.   That was not the case, it just appears to be slower for some reason.  I finished end of Feb and have about 1 1/2 inches back and sides and about 3/4 inch on top!  As far as eyelashes, eyebrows.. I did fine until my last week and then they all fell out. I had them back by mid April.. so about 6 weeks.  

slv58

Thanks everyone, it is reassuring I'm not going to have to don a robe with a rope belt to go with my new hair! I am a little worried about lashes as I haven't had any for about 10 weeks, I will try and be patient! I hope my concerns don't seem trivial-I'm just so tired of thinking and dealing with all the SE of cancer, I just want to feel like my old self again!

GoWithTheFlow

SLV, I lost a bit of eyebrows and a few lashes before my chemo ended.  In the weeks after chemo, I most of my eyebrows and all of my lashes.  Last week I noticed they are short, but my lashes are coming in thick (at least they look thick because they are short).  Eyebrows are coming in too.  It was like they weren't there one day and were there the next.  I finished chemo May 8

IamNancy

slv58 - my last chemo was 4/17... my brows have fallen out, started coming back and fell out again ..now they seem to be coming back but sorta thin.. eyelashes aren't much better but they are so short its hard to tell.. haie on my head is about 1/4 inch all around looking like that soft fuzzy hair baby chicks have..not enough that I can feel comfortable without a wig but just enough to make the wig slip all over the place.

Heart2930

Just wanted to send you all a quick update since I know what Linda and I are going through had a lot of people worried about their skin. I am now 10 days out from the whole breast rads, and 3 days out from the boosts. Today I actually feel fabulous. I did not wake up in pain with skin adhesions. No pain at all, and no adhesions. The raw spots seem to be healing. Still sore as I move around, but not really raw spots. The one under my arm is actually scabbed over, and the crease is just not as painful as it was. Yipee! There is definitely hope for everyone who has started breaking down, it just seems to take about a week or so to start getting better. Everywhere that was red has started peeling, but that doesn't hurt at all. I have stopped using the aquafor since that seems to make the skin adhesions and only use the aloevesta now, so maybe that helped.



Nothing horrible from the tamoxifen, although it does seem to make me a little dizzy and light headed. I sort of feel like I have medicine head from cold medicines, and all of a sudden I have so much energy I am kind of wired today.



Wishing everyone peace and healing over the weekend!

GoWithTheFlow

so happy for you heart!!!!!  thanks for the update.  My biggest concern is dealing with this while visiting friends/relatives.  

caitlin61

So glad to hear that you're doing much better Heart!

karynhelen

Slv58, hubby hasn't opinion about Emu oil. Since Doc only recommended Aloe Vera and Calendula, that's what I opted for. BTW, cool tattoo.... but I can't get a good look at it. What is it? 

As for lashes and eyebrows.... I haven't had chemo so this hasn't come up for me, but I do have very short, whimpy lashes so when I heard of a product called Latisse, (www.latisse.com) I spent the money and tried it. It worked! Amazingly, within 3 weeks I had long, full, thick lashes!

Ask your docs if you could use it. It is very expensive, so, I found the SAME product, different name, for $10 a bottle... Careprost. Google Latisse vs Careprost....

It seems that Careprost is used for gloucoma and they noticed lash growth as a SE. So they got a patent for the SAME drug specifically for lash growth.... ??? Not sure exactly what the story is, but I use Careprost on my lashes and they are long, full.....

Run it by your docs and see what they say..

Big hugs!!!

Karyn

P.S. Here's a link about Latisse post Chemo....

http://cancer.about.com/od/chemotherapysideeffects/a/latisse.htm

Youtube Video comparing Latisse and Careprost...

http://www.youtube.com/watch?v=Cf62bhHgUfQ

sciencegal

Thanks Karynhelen, I will check that out. I saved the hair on my head with coldcaps so that I could hide my cancer due to my work, but still have very few lashes and brows coming in. Drawing them on daily and in this heat they roll down my face when I am walking around campus LOL. VERY attractive.



Heart, bless you for coming back to weigh in that as bad as your skin problems were, they are starting to heal. I am so happy for you and that does really help us who are fearful. I have nightmares that my skin fries and my implant falls out! Those are a lot of fun. I also watch too many horror moveis, I admit....



THANK you for the update and congrats on waking up in less pain. YAY!!!



Hugs to all

ldesim

Heart I'm so happy for you!!

slv58

Hi Karyn, thanks for the update. That's a henna tattoo I got at the relay for life marathon I attended. Unfortunately, it has faded away, but it was cool to decorate the somewhat bald noggin!

karynhelen

Fyi, ladies, and if any gents are here too... my husband is researching active principles of emu oil. I'll let you know what he says. He's a great chemist, and really up on natural products... He has also taught many a class on making soaps, lotions, hand creams, lip balms etc.... I trust his chemical knowledge...

If you are using Emu Oil, what brand are you using and where do you get it?

After 3 treatments, my 'sister' is flaming hot and even seems hard, sensitive to the touch. I have to carry it around on my arm to be comfortable....    Anyone else had this so early on? I am concerned.... 

Hugs to you all,

Karyn

karynhelen

slv58, I love your noggin! You rocked the tat with grace... And I'll be posting info on Emu Oil....

GoWithTheFlow

kary, I've had 10 and had a bit of a burning feeling in a few spots on friday but seemed better today.  my only pain is under both arms from where the drains were after surgery, and two spots on my incision.

I got my emu oil at Amazon.  http://www.amazon.com/gp/product/B0009C182I/ref=oh_details_o06_s00_i00?ie=UTF8&psc=1

karynhelen

Thanks Go... it looks like the product you get is almost like a lotion? Is it greasy like oil?

Karyn