Winter rads 2014-2015

InGodshands

Hi Yikes,

Yes I had my SIM yesterday. I cried pretty much the whole time from little sniffles to full blown tears. Embarrassing but true to how I feel. I was told to start with 100% aloe vera gel the first week or so and move to aquafor as I needed it. I looked for the aloe vera gel but haven't been able to find 100%. Everything has some sort of preservative list of ingredients or dye. Does anyone know if that matters or where to find the good stuff?? And I have all of the markings drawn on me so won't using these products make them wipe off? Argh

Pita119

InGodshands,

Don't worry about the markings washing off...they redraw them as they need to. So far I've only used the Aquafor. #13 down today...7 to go. Very tired and starting to get sore but I'm only a little pink. But who knows if that will change when they do the 5 boosts.

yikes1

Hi InGodshands,

I was told to use ONLY the brand Fruit of the Earth, Aloe Vera 100%gel.

no color added.

I just want you to know - it does have some preservative and other yucky sounding stuff, but after spending over two hours one night in a store looking at many, many products I just had to give in.

Products that advertised all natural had tons of ingredients.

This gel product is clear. I do not know where you live, but it was available in a small, 2 ounce size at target, a bigger size in local grocery store, and looks like available at walmart.

Other similar products had tons of more stuff in them.

I ended up ordering from Amazon because they had larger size (24 ounces) and it came with a pump --- the pump is the thing. After one time of trying to get it out of the 2 ounce size I could not squeeze it out. It is a gel and just did not come out.

the pump has made it easy to use. It is possible that you could put a pump from something else in the smaller size sold (I think 12 ounce).

It is cooling, easy to apply.

For me the aquafor ointment was difficult to spread on my skin.

BUT - I am not sure it will not wash off your markings.

I have tattoos.

yikes1

just to be clear - I do not know if it exists, but this gel is not 100% aloe vera, and nothing I found was. they all had some type of preservative.

it is 100% gel. Some reviewers on Amazon felt that was misleading.

Beachlady28

Hello to fellow New Jersey Pita119 and all other rad sisters...Need some advice here...Today I got 22 rad treatments done out of 33. Have very sharp shooting electric stabbing like a knife breast pain. Nurse and Doc both say it is normal. How can this be normal? Pain is not normal!!!!! Rad techs say the nerves are irritated in the breast from radiation. Did some research to find that Neurotin and Lyrica are helpful. Today's Doc was reluctant to prescribe it. Anyone using these meds? Will see my regular Rad Onc tomorrow so if anyone has any info before them I would greatly appreciate it.
Hugs to all !

yikes1

Hi Beachlady28,

I asked about this yesterday, and was told it was nerves also.

Today was #18 for me.

As far as I know, Neurontin and Lyrica take a while to kick in - so may not even be helpful.

I may try tylenol or motrin if needed.

I had similar type pain after my surgery as well as now.

Pita119

Hi Beachlady28,

I've had sharp, shooting pains since my lumpectomy which the BS said was normal due to the nerves being disturbed and could last for up to a year I have found on days when it's persistant, ibuprofen seems to help a lot.

labelle

One down as of this afternoon, only 29 to go.

I spent half of last night crying, called into work today, made my husband go with me. I so did not want to do radiation and still don't, but here I am. This just sucks. My RO said not to use anything unless, until the area becomes inflamed. Basically he seems unconcerned about skin/side effects, but I don't have any choices for another RO unless I'm willing to drive 1+ each way every day and I'm not, as I need to work, at least most days. I'm slathering the area with coconut oil every night anyway-rads in the afternoon, and I shower in the morning, so there won't be anything on my breast at the time of treatment. I'm Paleo, so coconut oil is good for EVERYTHING, LOL. My incisions are healing nicely, too bad radiation will probably mess with my surgeon's good job. Ugh.

I stole an idea I read somewhere (maybe on another thread here or another site) and bought scratch off lottery tickets- 24 $1 ones for reg radiation days and 6 $3 ones for my boost days. Will scratch one off every evening after my daily radiation treatments. I won a free ticket already, on my first day. Yeah! I plan to save any winners until I'm finished w rads and then cash them all in and hopefully treat myself to something in the end with my (maybe) winnings, LOL. I think it is a fun idea anyway.

Nomatterwhat

I know what you are saying labelle.  I had #21 today and I still don't like it any better than I did on day #1.  I had enough of the demands of the job today and not getting anything done on my lunch hour and actually took a 2 hour lunch today.  It was so nice to be able to do something besides radiation on my lunch hour. 

InGodshands

Thank you Yikes and Pitafor your help I will look for that brand of gel. I have heard of fruit of the earth before ... Maybe used it in years past but can't remember now. I wish the RO's office could just provide us with the products they want us to use. Would make it easier even if it's only a small detail in the big picture of all this breast cancer trauma. Labelle, I really like your lottery ticket idea. I hope you get lots of winners.

SandyLovesLucy

Ingodshands and labelle, I cried on the table at my first session when tne reality set in that I was really getting radiation. I guess I got it out of my system because it has gotten easier. The techs are all female and they make me very comfortable. I heard that lottery ticket idea too and meant to do the same thing. I've had 13 sessions already but I guess I can do it retroactively! I had 12 weeks of Taxol. When the nurses said I would lose my hair I told them I would have to be all about earrings and lipstick. So I bought myself a cute pair of earrings for each of the 12 weeks! We've got to treat ourselves well through all of this.

My doctor gave me Natural Care Gel. It is very light and non greasy and so far my skin is holding up well. It does have several ingredients that I can't pronounce so is definitely not 100% aloe! I'm also using corn starch. I've retired the underwire bras for now and am wearing stretchy, Bali "Comfort Revolution" bras.

I'm feeling more fatigue now in week #3 and am also getting some zinger pains. I'm not sure if it is nerves regenerating, radiation, or the seroma that is still uncomfortable. But all in all I am grateful for feeling pretty well so far. Wishing the same for everyone here.

Hugs, Sandy

yikes1

SandylovesLucy,

Did your doctor really give you this gel? If so, that is great because going out and finding some of this stuff is not easy!

SandyLovesLucy

yikes, yes they gave the tube to me. After I had my sim appointment, the nurse went over skin care instructions. I got the gel and a pretty powder puff to use to apply the cornstarch. They also give out lovely pashmina shawls, donated by a local business. The cotton gowns don't provide good coverage on the front and since there are men as well as women in the waiting area, it is nice to be able to cover up with the pashmina and not having everything hangingout!

yikes1

SandyLovesLucy,

Wow - I want to be treated where you are treated! That sounds like such a nice, beautiful touch. I am so impressed and so jealous. I do get hot chocolate.- but when one reads the ingredients I am not so sure that is a great idea to drink.

Did anyone ever look at a package of swiss mix? Scary stuff, especially in a place that treats cancer patients.

Is the pashmina shawl to take home? Maybe I misunderstood.

I asked about my gown, and was told it really was designed to be worn the opposite way, sort of opening in the back. Either way it does not stay closed.

I want a powder puff! Today was just not a good day for me.

eileenpg

ingodshand=Aloe vera gel at GNC stores. Bought it today it was $1.99 for a tube. I think 99% not sure. In other room and too lazy to go get it. My RO recommended Aquafor or any cream thats for dry skin. He said it really made no difference. No aloe from plant. Too much bacteria.

eileenpg

Aloe vero GNC 99% pure and organic.

SandyLovesLucy

Eileen, thanks for the info on the aloe gel.  The stuff I got is described as specifically for radiation dermatitis.  I'm not sure if any of the "mystery ingredients" is medicinal or just preservative.  I'll ask my doc.

Yikes, the pashmina was presented as a gift so yes, I'm keeping it! I remember feeling jealous when I found out they brought out a lunch cart for chemo patients at some of the hospitals near here. My center offered cold drinks and cookies.  I don't think I'll ever be able to eat another Fig Newton again!

CoyoteNV

There seems to a rather wide range of opinions about what gel, cream, ointment to use on radiation affected skin.  My RO gives out sample size Aquafor and Miaderm  and says he has more if needed.  He also says there are lots of things that will help. Most of them have been mentioned here.  No alcohol and no perfume. He suggests using something when it becomes helpful.   I mentioned when I first started, that his office has only seen one case of blistered skin in the last year and a half.  Unfortunately I am not the only one around here that has had radiation and those I know who have gone to this clinic, have had the same light side effects. 

It actually appears that in general most of us Winter Warriors are having a fairly easy time so far.   I read some real horror stories before I started this.  I was terrified that my skin would turn black and crack like a burned hotdog on a grill.... or do what my Mom's did in the 1970's. Her chest looked like she had been in a house fire for the rest of her life, however, she did survive BC.  She passed away in 2007 with Alzheimer's disease at 87.   I will miss her forever and I'm sure each of you understand that. 

This is really an unrelated but related statement of something I read. I'm paraphrasing it, because I don't remember where I read it or who wrote it. Either way, it has condensed to this unforgettable thought in my mind.

 "No matter how much time we have with the people we love, it is never enough."  

 Okay, now I'm a mess. How quickly we can go from a discussion of skin care to dropping tears all over the keyboard. 

Quickly moving on..... Big adventure today!

Hubby is making the long drive with me today so we can go grocery shopping at the other end at the most fabulous grocery store.  (We have a basics only store here.)  It is raining on the desert this morning and there is a distinct possibility we may encounter snowflakes when we go through the higher elevations. Yahoo!  Gotta pack my boots and gloves and put cocoa in the thermos!  Believe me, around here we go TO the snow because its not coming to us. 

Guess this post runs the emotional gamut.  Have a great day my friends.

PoppyK

Hugs, Coyote! Hope your day goes well.

I have been told that in general, fair skinned women experience more redness, blistering, peeling and so on with radiation than those with more pigmented skin. I'm wondering if this is the experience of the ladies on this thread. I have olive skin and am hopeful that I won't encounter too many problems with rads, especially since I recently completed chemo. If any of you want to share about this, I would appreciated it.

PoppyK

MagicalBean, Your description of your breasts as knee slapping 40DDs made me laugh! I have a friend who calls hers "Belly Blankets"!

CoyoteNV

Poppy- I started rads right after chemo too. I was Tired - note capital T - but that was chemo se. I think really really bad skin reactions are in the minority but scare us all to pieces. Do we really want six weeks (more) of pain and agony? I'm pretty fair skinned and never deliberately tan. I really have had no issues other than a bumpy itch and a pink armpit. Both of those are survivable. It kind of seems as peppople with sensitive skin before are the ones who have some issues. Am I wrong?

Pita119

Hi Poppy,

I have fair skin as well & so far, I am a little pink but that's about it as far as skin issues go and I just had my 14th treatment today. Now, I am a little sore which the RO told me is not uncommon with radiation.

LMVerna

Hi Poppy,

I have medium skin. I am fair but I tend to tan more than burn. I did well but have recently started having skin reactions now. I just finished dose 22. My RO recommends not using any skin care products until you start showing reactions. I did well for very long but recently have gotten red across the treated area, a few red bumps in the cleavage area with a little itching. My worst area is my side/armpit which has turned dark tan with a little brown patch. It is uncomfortable at times. I have used aquaphor when my skin started getting pink and have just started silvadene in the armpit area. Just today I started with rib pain and feeling tired. My doctor did expect me to show more skin reactions since I have had a mastectomy and have tissue expander in place. She explained that since I don't have breast tissue to radiate, they need to concentrate on the little bit of tissue that is very close to the skin so sometimes the skin gets hit harder. I started radiation just 1 week out of taxol so I was tired when I started and then got energy back but now tired again. Can't tell if the tired is from radiation or just doing too much getting ready for the holidays plus having my mother in the hospital. Probably just running myself too much and now I am feeling it. Its hard to concentrate on yourself when you have to be a caretaker for another too. It is helpful reading everything here and commiserating with people going through the same thing as you. I will be finishing before the new year which will be nice--wish it wasn't over the holidays when two of my kids are home from college but what can you do. It will be over soon and then just have to finish taking Herceptin until August and undergo my reconstruction surgeries. This too shall pass.

Nomatterwhat

Hey Poppy!!!  I can tell you that being very fair skinned and not able to stay out in the sun for more than 30 minutes at a time or my skin looks like a tomato, this radiation has been extremely hard on my skin.  I finished #22 today and if it weren't for the silverdene cream my doctor gave me last week, I would probably be blistering and peeling by now.  I keep the area moist and even wrap it when I go to bed at night. 

KatieC12

I'm fair skinned, never tan, and the redness showed up under the breast after treatment #10, the rash showed up after #13. It's manageable, but there are times I'd like to claw my chest, mostly in the evenings. Christmas lunch at work today - that was really enjoyable and fun.

CoyoteNV, I lost my mum 21 years ago last week. It doesn't seem like that long, and I think of her every day. She lived with Parkinson's Disease for 23 years and was an inspiration to me. My journey is small in comparison.

Birdgirl11

I am medium light skinned and tan fairly easily. Finished #18 and I'm quite red but thanks to being numb from surgery have little pain. Some itching on my chest area, but only occasional. I started using aquafor and calendula ointment since day 1, once in the morning and then again after treatment in the afternoon. Can definitely see the outline of what area is being radiated.

There is actually more pain and tenderness inside and feels better with a very supportive bra on, plus the occasional zingers that most everyone else has as well.

CoyoteNV

Great disappointment yesterday - not one snowflake!  We had sprinkles of rain off and on the whole way. I'm not certain how the weather forecast came up with snow, because it never did get below 50 degrees.  I think I over dressed.

Today is the big day - my final radiation treatment. Yippee!  I'm thinking that the 28 day plan worked out pretty well, because too many more days and my skin might have seriously objected.  I got the idea that the RO's each have their own opinion about how to spread out the grays.  We all end up with a similar number, but divided over our personalized (or pre-determined) plan. My RO had said at the beginning when we discussed a 3 week plan that he did not prefer that, but would accelerate the program to that if that was the only way I could do it because of my distance away.  It meant the same grays over 15 days that I received in 28 - as in 2x daily.  He did accelerate it to 28 from a more standard 33.

I have an entire month before I start my check up routine with MO, RO, PS and surgeon - and probably my Primary also.  I also might be seeing a lymphodema specialist.  I am grateful for all of them.  They are each very caring people - as are their staffs. They are all very professional in their work, but you can tell that they care and want everything to work out.  I do have to say that if this is a road that I must travel, I have been blessed to have encountered these individuals on my way. 

Party week-end. 

 

eileenpg

Coyote=YEAH YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am 3 down and 32 more to go. Happy Holidays and enjoy. By the way if I never see snow again it will be too soon.  Love living in Florida

SandyLovesLucy

Coyote, Congratulations on completing this phase of treatment! Yahoo!  It is great to hear that you have done quite well through radiation and have such caring people on your medical team. I feel the same way about my team.  I hope you have some serious fun planned for the weekend to celebrate.   Thanks again for starting this thread that has brought such terrific women together.

CassieCat

Hi ladies. I'm not doing rads yet but likely will down the road so am reading and learning from you. A friend who had rads for a different cancer mentioned calendula cream. Anyone have any thoughts on that?