Winter rads 2014-2015

Professor50

I wanted to just note that "it gets worse before it gets better" is true but you shouldn't think it is going to be a disaster. To me it was like the damage was on the inside and it was working its way out. My first few weeks (really a long time in the process) I had just like nothing happening and even joked with my RO: Are you sure you're doing something? He assured me they were. I felt pretty good throughout and was just waiting for the other shoe to fall. I guess it never really did, at least not in terms of some of the really bad experiences folks have had. It was tender (especially under my arm) but not that bad. Right now I am nearly 3 weeks out and the area where the boosts were is still a perfect oval of red compared to the rest of my boob. Otherwise I am getting back to normal. I strongly recommend putting comfort first in terms of bras and clothes. A tank top with "built in" support that is very soft is a good option.

For all of you who are just starting out, I will be thinking of you and sending my best wishes. It is weird journey and the every single day of it is wearing. But you can do it. I know you can!

PS I agree dacre. One of my best moments was putting on regular deodorant!!!

CassieCat

I've done 14 of 28 regular treatments, so halfway done! 7 boosts after that, though. I'm getting pink and can clearly see where the rads are hitting me. I'm itchy near my clavicle, but hydrocortisone (1%) helps. My tech is very sweet. She's calm and professional but also friendly. I like her a lot and her temperament puts me at ease. I've learned to relax into the treatments. I'll take each good day my skin has to offer me and cross my fingers that it won't get too awful.

As for clothing and such, I've found Coobies (terrible name) comfortable after the MX and through rads. Some days I just wear a camisole with a shelf bra. I'm only an A cup on the non-MX side, so I don't need much. I just don't like going without anything.

shelleym1

Hello, thanks for the welcome! I met with the radiation oncologist today and I qualify for the 4 weeks of radiation instead of 6-7. I was shocked! I will have three weeks of regular radiation the one week of boost to the tumor site. I am relieved it is a shorter course since I have to drive 1.5 hr each way to get there.

WheelyGirl

Why no deoderant.  My MO didn't say anything about deodorant so I am assuming the techs will tomorrow but what is the reason?  Does anyone know?

Beachbum1023

Hi WheelyGirl, some deodorants have aluminum in them. Bad mix with rads. I use Aloe after. But I am so thankful it is winter

magdalene51

If you use straight deodorant it shouldn't be a problem, but antiperspirant contains aluminum which you don't want to have where it will be radiated.

Last main boost today, then 3 smaller ones to the tumor bed. The end is in sight.

Beachbum1023

Sorry for the confusion, my chemo brain is working better than I want it to. Off to rads! I hope my old brain returns soon. LOL

aj103014

WnderWoman -- I am about 3 weeks out as well. My aftercare instructions were to continue to moisturize everyday and continue with the calendula lotion for the first week, After the first week I could switch back to my moisturizer of choice, but straight out of the shower moisturize everyday. My follow-up is in 20 days. My skin faired really well and is starting to look more normal, but it is taking its time. I was so excited to use regular deodorant again.

Today was the first snow day that I didn't have to drive to treatment. I'm a lefty drove to most of my treatments alone and had little difficulty, but did find that in the bad weather/traffic that I tended to tense up and get sore. My drive home was almost always during the evening rush and took 45-60mins to get home.

My BS scheduled an MRI for June, 6 months post surgery, I had a benign biopsy on the right so he wants to check both then. I don't think until then I will be able to feel like I'm finished with all of this. I felt much better when I was at the doctor's everyday and several people were checking in on me. Now I'm struggling and trying to remain kind to myself and give myself some time to get back into full swing.

mqt64

Beachbum I am so sorry to hear your news! ! Don't know what criteria they use. I can only imagine your disappointment. You can do this. We'll be waiting for you when you finish dancing in our stompers. The combination xylocaine/ hydrocortisone cream really does help. Maybe you can get some.

ladyb1234

Windgirl, I felt the same way about my techs and RO. They have made the daily treatments so much easier. I plan on getting the group a thank you cake. I brought cake, cookies and coffee for the Chemo nurses and they just loved it. Especially the Peets coffee and cookies. I also gave them a thank you card.

Beachbum, not good on the extra treatments.

Quiggy, raising my viritual cocktail back at ya! Cheers and congrats!

Fionascottie, congrats.

Bippy, congrats again!

sybilskelton, braless is not an option for me either while at work. The gravity and jiggling while conducting meetings or making presentations is not the attenion I want (big smile). If I could hide behind my desk most of the day I might consider it. I found the supportive camis the most comfortable for all day. The sports bra still rubs and begins to get irritating for me at least. I did take a suggestion from one of the posters to ware a t under the bra to reduce the friction. It works

Finished treatment 17 today and met with RO. I explained my issues. She indicate most of what I was experiencing is expected at this point. She expressed reducing friction is important and went over her concerns. She takes good notes as she asked me about everything we discussed last week and what I sent via emails or called about on the advice line. Now that is an attentive RO. The mouthwash for the throat soreness is wonderful. Numbs immediately. more than half way done. Woot! Woot!

windgirl

Quiqqy - thanks!

Also, the cake idea sounds great. I think I will go with that

kayfry

WheelyGirl, I have to drive 40-45 minutes each way for treatment. I'm also in PA and getting the shorter protocol at Johns Hopkins, Baltimore. They don't call it the "Canadian" plan but rather hypo-fractionated something or other. But anyway, I will have 19 treatments total, the last 4 boosts, and I'm happy to say that today I had number 1, so only 18 to go! My techs are super-nice and the treatment was quick, as everyone said it would be. They are playing Beatles for me (totally copying, but loving listening to John Lennon "Imagine" today). My problem, as I said yesterday, is that my right shoulder is killing me in the overhead position I need to hold for treatments. RO today said we can't adjust that position at all, that maybe I need to get the shoulder injected, which had already occurred to me. But I'm trying drugs first

Today after treatment I got the recs re skin care, all of which I'd already gotten from being here, but interesting what the product of choice is at Hopkins, one I'd already found and purchased after researching way too much online. It's called Miaderm, was developed by radiation oncologists, and the active ingredients are calendula, hyalonlurate (sp?) and aloe vera. Came home and slathered it on, but I was given a small sample that I can carry in my purse (refilling at home as needed), so I can put it on right after treatment. It's not quite as greasy as Aquaphor, pretty nice. I can use Aquaphor if I like, but they like this better. So far I'm wearing the stretchy one-size-type bra, hoping that will work out. My RO showed me my treatment parameters on the computer, and I was very happy to see that basically there's no radiation to my heart, and only the very, very most minimal to lung (RO says will have no detrimental effect). She said she is very, very happy with the plan.

We're supposed to be getting a big snow tonight and tomorrow, planning and hoping to get to my treatment which is in the middle of the day, which in this case may be better than earlier. This winter needs to go away now so I can make this trek every day! Next week I get to switch to morning, which I prefer. I hope I'm lucky with the SEs. Everyone tells me I should do well with my anatomy, etc., but time will tell. Best to everyone on this journey!

kayfry

Another vote for Coobies, which is what I wore 24/7 after my Lx and what I still have worn much of the time while waiting to finally get to rads. I don't need much for support, but if I go braless outside I feel as if I'm walking around in my pjs, not good! Well, after only 1 tx I guess I can't be sure I'll be able to get through the month with this plan, but hoping to.

chrissie29

Wheelygirl-my RO told me same as others have posted about deordorant having aluminum and causing scatter with radiation, but she said studies have been done where this didn't happen so my Mayo Clinic ROs are not limiting use of deordorant. 

gemmafromlondon

Too right about being able to use deodorant again! As I had trouble with the axial scar I had three months without and it may be winter but ……. and it is a great relief to get back to normal. The very last problem crossed off I hope. Keep going ladies - it will pass. All the best.

WheelyGirl

Good luck to all of those starting and continuing treatment today and Congratulations to all who are finishing today!  I have my first of 30 at 2:10 today and have to admit I am so nervous about all of this because of my damaged heart.  Still don't know what my options are with that, was suppose to have  cardiac MRI Monday but apparently the machine was down so they had to cancel.  Dr. did say I am stable and they will get me rescheduled as soon as the machine is working again.  Just trying to keep calm about all of this radiation and potential damage to heart and lungs.  Breast Cancer treatment sucks!

CassieCat

Good luck, WheelyGirl!

dacre

Today is the first day of boosts....5 all together...so 2 this week and 3 next week....then maybe never again!

to Professor50: I can't wait to use deodorant again!!! This is what I posted yesterday on my FB account:

This may be TMI for some...but I'm not forcing anyone to read! Last regular radiation treatment today....followed by 5 "boost" treatments....hopefully DONE!!!

Here comes the TMI ! Cannot wait until I can actually use deodorant again!!!!

The responses I received from my friends were amazing:

Me too. Pew! Just kidding.m

just be happy its not mid July

More TMI....I don't have any hair to style, but I still have to shave my legs....what the heck!

Oh you are a riot!!! Thanks for sharing!

Yeah! Your last treatment! Why are you shaving your legs in Winter? You usually wait to Spring!!

Because if I can finally use deodorant again I might as well shave my legs!

that's just not fair. If you're gonna lose your hair, it should go from your legs, too.

Guess it doesn't work that way....b/c I still have the chin whiskers....LOL

Nooooooo! Not the chin, too! Now that's downright unjust. I'm adding that to my list of questions for God about things on the earth plane that MAKE NO SENSE.

If you are able to talk with her directly , please give her my #phonenumber....I have a few questions also

You're all hysterical. Love you, Darcy!

don't forget to take the braids out of your leg hairs before u shave them.

It's the little things that mean the most : )

Hopefully this conversation will bring a smile to someone today! It's just as easy to smile and laugh as it is to cry. Trust me, I have the crying thing down pretty well. But I still love to smile and laugh! If I can't make fun of what's happening to my body...then who can?

Have a love filled day everyone!

kayfry

Funny post, thanks for the laugh. I'm pleased to say that I just accomplished #2 of 19, despite having to drive the normally 90-minute commute in the middle of a snowstorm! On the plus side, there were way more parking places once I got there, since obviously many people stayed home. Also, the treatment today was so short, my shoulder barely even had time to protest. I guess it'll be that short except once a week, when they take pictures, and even then it's barely longer. Now that I have the routine down, it should be in and out in 15-20 minutes, just that drive is the killer. I slathered on the Miaderm lotion before I got re-dressed, and soon I'm off to shovel snow and maybe get a little work done at my desk, too. And a little exercise on the elliptical in the basement. I'm hoping I can simply outrun the fatigue monster, haha. Next week I can get morning appointments, which will help a little in terms of schedules.

Have a good day, everyone.

gemmafromlondon

Take care in the snow Kayfry - sorry you have such a drive for rads but they will pass quite quickly and then - wow! so much time to get on with life! All the best.

kayfry

Thanks, gemma, I can't wait for that day. I should make clear that the 90-minutes is round-trip, really only 40 minutes each way if I get lucky with traffic. It still gets old very quickly, doing it every day. I'm so glad I only have 19 treatments.

mqt64

WheelyGirl, you got this! Hopefully your time will fly by with few side effects. My last of 30 treatments is tomorrow and it's hard to believe. Just remember to be easy on yourself. Some days will be better and others worse! You're never alone with this wonderful group of ladies.

I'm going with the cake idea. I make one called a Turtle Cake with caramel, chocolate chips,and pecans in the middle. It's easy because it's so rich that you don't have to ice it.

Kafry, you make me tired just reading what you plan to do! Best wishes for an uneventful rads experience.

Beachbum, you're in my thoughts today. Gentle hugs.

quiggy

Yahoo dacre! I finish my last boost on Monday, you and I are pretty darn close to the finish line! Congrats sister.

I'm looking forward to healing and trying to not think about my boobs for a while. LOL

I know we're not gonna magically be normal after the last RAD but it's a start in that direction.

quiggy

A while back, we had some discussion about when we are considered cancer free.

I researchedand found nothing definitive. I asked my RO, she said she and her colleagues don't say "cancer free" because there's truly no way to say that with certainty. She said they call it "no evidence of disease" or NED.

According to my RO, as I finish radiation, I will be NED.

Beachbum1023

Hi everybody, I finished 28 rads this afternoon, with 5 boosts to the tumor bed left. Last night I had horrible shooting pains in my armpit. It woke me up it was so painful. Any of you had that happen? I tried to get meds or something today and they told me to take Ibuprofen. WTH? The pain was unreal. The skin is very dark/red. Any ideas?

Thank you! Have a great night.

quiggy

Hi Beachbum1023, sorry to hear you're in pain. I had similar issue last friday, armpit to the nipple was on fire and shooting/throbbing. I had a meltdown at radiation tx , refused the tx and demanded pain med(embarrassing scene). Got meds and cried myself through Sunday. By Monday, all was better again. The pain levelled off too.

RO still thinks it was odd and said so in a way that let me know she didn't approve.Screw her!

I hope they give you pain meds. Your pain is real and you should not have to tolerate it.

Hugs

WheelyGirl

mqt64 - Thank You and all of the other ladies on this board for the support!  Yeah, 1 down and 29 to go...my husband laughed when I made an X on today's square on the calendar as soon as I walked in the door.  The techs are very sweet and answer any questions that I have and always tell me before they touch me since I can't see anything that is going on.  It was very strange laying that still for that long, todays appointment took about 40 minutes but she said tomorrow will be a breeze, I should be in and out in 10 - 15 minutes if I am a good girl and lay still like I did today.  I thought about whichever one of you ladies who said you loved when you heard them yell perfect, I almost giggled when my techs said "perfect stay just like that". 

Dacre and Quiggy - I can't wait till I can say I have my last boost on Wednesday!  It will be here before I know it.

Question when should I start putting lotion on, I asked the tech and she said I don't need to do anything right now it will be several days before I notice anything but from what I have been reading here the techs are not always right.

Beachbum1023

Quiggy - Thank You! I thought I was losing my mind last night, the pain was unreal. All I could do is fan it with cool air, and slather on more Aquaphor. My RO thinks that Aquaphor is like a miracle in a tube. So far all it has done is destroy my new sheets and my clothes. WTH? I think Vaseline would do the same, nothing! I begged for meds, and nothing! So I can break into my codeine tonight, I keep a stash from the other side effects. I swear the pain gremlins were shredding my armpit with a grater. Hard to deal with especially since my armpit is all over now. Some on the arm, some in the pit, some on my side, where do I shave?? Now I have boosts, right on the scars, and it is all over. They laid out a circle for the boost, almost the size of a grapefruit. Makes me wonder how the scars are going to hold up. I asked my tech today where he was recruited from to work there, death row?? He said Taliban, and we laughed like crazy. Hating this.

farmerma

It's always nice to be able to laugh during this process. It's been a running joke with my techs that they have such an easy job. I seem to always situate myself in just about the perfect spot, they hardly have to make much adjustment. I joked yesterday that I was going to make it harder on them by not trying so hard to get in the middle of the table and just the right positions with my head and hands. So one jokes "So who is this patient and what are we treating today?". The other says "Wasn't it the prostate?". To which I replied, "Well, good luck finding the tattoos down there!". We all had a nice laugh. On the easiest days, I'm in and out of there in 10-15 minutes. Today is #9. Crossing them off each day, just like you, WheelyGirl!

gemmafromlondon

Sorry you guys are having such pain - that's bad luck and I feel for you. Grit your teeth and let the Taliban operatives finish their mission. We are all cheering you on.

Someone asked about when to put on cream. Aloe Vera is lovely and I started twice a day right from the beginning of rads. I found Aquaphor revoltingly sticky and hardly used it at all. Keeping it for my feet now!