Fall Rads 2014

Susug

puffin, that is the exact same scenery picture that's on the ceiling in my treatment center. 

Puffin2014

Susug: wonder how many infusion centers around the country have that same ceiling panel? I do like it.

Beachlady28

Hello to all,

I am rather new to this site, only sent a few inquiries so far. Here is my question: I am 4 weeks post surgery for lumpectomy and sentinel node removal.  I am still very sore although it seems to be just a bit less each day.  I still get the stabbing pains for which I take Tylenol and use a warm compress.  It is particularly irritating where the underarm incision is because the seams of shirts rub there and the bra rides up I that area at times.  The area is very sensitive and bending over particularly is bothersome.  Here are my questions: When does it stop hurting?  And how am I to start radiation on this very sore area when I read about burns, skin peeling, blisters and oozing?  Sounds to me like more pain will be layered on top of existing pain and I will not be able to handle it.  

Anyone have this problem and how to solve it?

Thanks a bunch!

PontiacPeggy

Beachlady, it DOES get better.  Honest!  Just takes time.  That damn underarm incision is a royal pain.  It will settle down to being just annoying soon.  Make sure you are stretching and doing the exercises that you BS has recommended.  Loose clothing and braless-ness are good  It does seem to take forever for all the annoyance to go away.  Bad girl is fine!

I had no burns, skin peeling, blisters or oozing.  Most of us don't.  Certainly had a bit of redness and "tan."  But it was nothing.  Used a bit of Aquaphor on it that that was that.  You'll do fine.

Make sure you update your profile to show what treatments you've had.

Puffin2014

Beachlady: I finish my rads on Friday and my skin is fine too, I've been using Vanicream 2-3 times a day. Another week or two and your incision should feel better.

Gilesmt

hubermel, I use to walk 3.7 miles every other day before all this happened. But I had three surgeries, chemo which knocked me out and threw me aside, with that I got lymphodema and have to fight lovely blood clots in my lungs for several months. So I had done nothing for weeks but go to the bathroom. So when I started rads I started to go to the gym, actually it has been 4 weeks I guess, the first week I could not even make it around the trak. Now I am up to two miles with 2 lbs weights in my hands. 

I am jealous of all you who get to look at flowers and mountains during rads. I will ask, but I don't think there is anything above me, but I wouldnt be able to see it anyway, so I just see the blur of grey.

Psalm34-4

Hello ladies, congrats Pegg and any others who have finished rads! I started my Rads tx last Monday, 10/20/14, and am to get total of 33. So far everything is going just fine I think.  I find the radiation stuff cool, don't like why I need it, but fascinated learning about it. I don't have any scenery at mine either, but I am so busy watching that thing rotate over me and counting the clicks, I dont think I would notice if I did have scenery! Amazed at how quick the actual treatments go, as I understand, once a week I will get Xrays, and once a week I will see the RO, but on the other 3 days, I was in / out in about 15 minutes. Staff has been super nice. I have been using an aloe cream at night after shower, have Aquaphor on hand for if I need it, and my RO gave me a clear gel like lotion to use, but havent yet. My RO said no lotions / creams 4 hours before rads, no deo except recommmend "Crystal" which I found at Walgreens. It's a mineral block, you have to out a couple drops off water on it to rub it on.. neat.  On my weekend off from rads I used my regular deo, but I guess would leave that off then too if I develop any irritation.

Whew what a journey this is.. it's hard to believe, looking back, how much has already happened since my diagnosis in August. To all the newbies, hang in there girls... it's  a wild ride, but definitely doable. I bet you find strength you didnt even know you possessed! 

God bless you all~

Jaimieh

jealous of getting to look at pictures. Mine has a clear ceiling that I keep telling them they need to dust. Lol. Apparently it is getting a rehab in January and I hope to never see it again. 

I am in my final week finally. I am getting boost or coming as my RO likes to call it. It takes me longer to change into the gown than it does for the treatment. The boost are super quick. 

I did peel In My super clavicle area and my underarm looks like the lady in the movie something about Mary but I am feeling okay. Some days I am exhausted and others I am completely fine. 

PontiacPeggy

Jaimieh, Yippee having only 1 week to go.  That's fantastic.  Sorry that you've had peeling and crappy underarm SEs but very glad you're feeling okay.  I think we are all exhausted.  If the treatment doesn't do it to you, then "just" the mental trauma of having to go through dealing with this lousy disease will do it to us.

But we persevere and get through and manage to come out fine.

Hugs!

bride

davida58,

I also have Sjogrens, although I have few symptoms. My rad onc started me on PT as soon as I started rads to address any possible issues. I do have problems with freeing my shoulder blades and my chest and armpit are amazingly tight. PT is helping greatly!

Thanks to all who responded to my earlier post. I have 3 rads & then 5 boosts and I'm done, yea! Skin has held up beautifully but the damn tape does itch. Despite Magic Mouthwash, I still get a sore throat -- it eases within a few hours, thankfully.

As I said before, I've found radiation to be the easiest part of my almost year long treatment program. After rads, all I have is 9 months of Herceptin infusions and a whole bunch of PT. It does seem to get easier to handle. I hope everyone who is worrying about rads or struggling wit the side effects can find some comfort in knowing it really does eventually end.

bride

Generation3

I've had 23 of 33 tx so far. Had no issues for the first 12tx, then started to  get a mild rash over my right clavicle area. Since then it has continued to get really red, almost a burgundy color and just started peeling this evening after my shower. Also something I haven't seen on these boards  yet. I have an itchy raised red rash on my right upper back.(the same side I'm getting treated on) The area is about a 3x4 inch square. I was totally surprised to see this. I didn't think the radiation went all the way through and out the back. I thought the rad beams went just through your breast and just far enough into your chest to get your lymph nodes. If it does go all the way through is my lung getting damaged??? Thoughts anyone...... Wendy

davida58

Bride

Thank you!! While I am saddened that you also have Sjogrens, reassures me that Rad didn't cause you additional problems sjs-related.

Not sure when they start Rad on me. I have post-op Fri, then Med Onc on the 11th. I think Rad will probably start after Med Onc appt?

So far no problems with range of motion post op

bride

Davida,

After my surgery my ROM seemed pretty good, especially after I got those nasty tubes out. In my case, I had an ALND and when the three vessels that feed into my nodes were cut, they sort of merged and created a lump that reacts much like a ganglion cyst -- but you can't smack it with a heavy book. So the PT has to harass it until it breaks. Since I have IBC my surgeon wanted to be very thorough and she was. Even though I had a 100% response to chemo, my surgeon took most of my minor chest muscles and in doing so left my pectoral muscle really tight. Still, it is resolving.

I checked more on my rad onc's recommendations for dealing with Sjogrens. Not much you probability don't already know: if you're not using a RX mouth rinse, biotene dry mouth rinse is very effective. And watch your eye lubrication, rads, especially in the cooler, dryer weather, can worsen dry eyes. My rad onc also suggests yoga or PT, though she is adamant about balancing that with the fatigue (I've had minimal fatigue).  The other bit to note is that chemo increases your risk for cataracts and that risk increases in the presence of Sjogrens. But basically, she said that rads shouldn't worsen your sjs.

Let me know how you're doing, okay?

bride

davida58

bride

As far as the sjogrens, I've been on evoxac, restasis, hydroxychloroquine, etc since dx March2013.

At this point, chemo is not a recommendation for me, thankfully. Unless something different comes back from pathology.

I had lower plugs put in my eyes couple of weeks ago which has been helpful.

Thus far, my rad onc says the only risk is scarring on top of left lung. Not sure I like that part - but then it's all relative, isn't it? Risk vs benefit.

I am supposed to hear from RO this week. Nurse Navigator saw me in hospital and she said RO will be doing 3D rad therapy? Is that better? I'm still trying to wrap around BC diagnosis so can't quite wrap around the differences in Rad treatments

bride

Davida,

I'm glad you get to skip chemo! And you sound like you have your sjs well in hand.

3D external beam radiation is the gold standard now for most BCs. I imagine that within a few years, radiation done with antimatter and/or nano particles will become the new standard. Hopefully, none of us here now will need it.

bride

Imheretoo

Generation3, I'm very curious to know what your RO tells you about the upper back rash, if you get a chance to ask.     I would imagine that, if it is due to the radiation, if they had to aim it in that way in you to hit all necessary fields, they did it only because  they'd seen on your CAT that the rays (or whatever you call them) would go above the level of your lungs and heart.  You'd think they would have warned you though, if they were aiming in that way and  you could really get effects there, so maybe it is not directly due to the radiation at all...      Could you possibly be slathering the moisturizing lotion on your back too?    Maybe you're allergic to that??????     

But hmm--- I just noticed that also bride mentioned issues on back and shoulders---

(In me, they told me the rays are only going from the rib side to middle side of my breast, and vice versae, but they don't need to specifically target any nodes in me.)    

Blownaway- Just want to thank you again for telling me the word "bolus" to explain that thing they're putting over my breast.    I looked it up on Google, and now it all makes much more sense.    (At first I was making a mental confusion, thinking bolus meant they were doing the "boost")   I wonder if I'm always getting that bolus thing because my breasts are very small, and so tumor was basicaly sandwiched between chest wall and skin and there's just not all that much else there to irradiate. (??)    So far, I've done 4 treatments and they've put the bolus on me every day.    (The things I find written about bolus use just talk about using it after full mastectomy-- and I had a quadrantectomy = breast conserving)

I'm confused about all this talk of click counting.     My machine just clicks twice, one right after the other, then buzzes, then moves to the other side and does that again.    

Blownaway

Imheretoo - They use the bolus on my every time also, exactly over the scar from the lumpectomy. I have fairly large breasts (implants) so I don't think "size matters" in this instance. They are just trying to direct the rays closer to the skin right where the bolus is placed.

Jaimieh

Generation3 Rads to the superclavicle goes thru to the back.  I actually had a field that they radiated from the back.  I hope it goes away soon.  

Down to 3 more boost........sighhhh... I am mostly looking forward to sleeping in.  My appt is at 7am everyday so I am getting up earlier than normal. 

Imheretoo

Blownaway, was your bolus something small that was set only on top of the scar area?   They're putting something over my entire breast.    (although to be honest, I don't get a good look at it, because I'm lying still-- actually I don't see it at all, just feel them put it on)

Blownaway

Imheretoo - I know what you mean, my head has to be turned to the other side but you can ask them to show it to you. My bolus is sort of kidney shaped and is about 3" by 1-1/2". They tape it over the lumpectomy scar area.

StrongEnough13

Hello all, I've been reading this board off and on for a couple weeks, making the transition from the chemo board, as I start radiation treatments today. I'll get my profile updated soon, need to ask some questions this afternoon. I've been there a couple times already, getting set up and simmed, and my ceiling has black panels with pinholes in them and twinkling lights behind the panels, so it looks like twinkling stars.  It gives me something to do looking for patterns to the twinklings. My machine is a tube that I get moved into on the table. I've bought aquaphor and calendula cream and some non-underwire comfy bras.  Anything else I need to know, last minute-like? I've read the beginning and the end of this thread, but there are a lot of pages to get through!

PontiacPeggy

StrongEnough, my RO said not to use anything like Aquaphor before my rad treatment.  Afterwards is fine.  And, frankly, I didn't use it until after #19 when the RO! noticed that I had started punctating (redness in hair follicles).  I've never been uncomfortable.  I was happier going braless.  You might consider that if it is appropriate for your life.  As a retiree, it worked for me.  I had ugly ceiling to look at.  I was not in a tube.  The machine moved around me.  I posted pictures around the 15th or 16th if you want to wander backwards and see them.

You'll do just fine.  You've been through the hard part with the chemo.  Rads are a snap, IMHO.  HUGS!!!

Bow1965

Wendy, I too have a bumpy rash on my back behind my rad shoulder. I did not ask about that, but the clavicle rash explanation from my oncologist made sense. The beam for the nodes is actually coming from behind on me - when I raise my arms up the radiation comes between my arm and neck from below, and the collar bone reflects the beam and gets "burned" so to speak. Does this make sense? Maybe that's why we get rash on the back. I did ask about my lung and heart - and yes, my onc said they are brushing my lung with radiation, but not my heart. The nodes my onc wants to treat are not just under the armpit, but all up into the neck & arm. I checked out the lymph system pretty extensively with my lymphedema prevention therapist who I worked with after my surgery. It's really quite fascinating. 

StrongEnough13

Thanks, PonitacPeggy!  I did see 2 or 3 people had posted pics of the radiation room, and none of them look like the machine I am using. I'll ask about that today. 

Yes, since I work from home, braless is an option for me most of the time, but I need them to wear to and from treatments and other times I go out, or if we're expecting company. Luckily, people usually call or text first!

I'm expecting this to be a piece of cake, compared to chemo, but I'm not fully recovered from my last round yet (2 weeks ago tomorrow), so starting out already tired... I hope it gets better before it gets worse! 

PontiacPeggy

StrongEnough, here I wore a sweatshirt to and from my rads, or a heavy denim shirt.  Not always an option in nice, warm AZ  

I'm sorry to say you will not be less tired with radiation.  It's different but you hit a wall all of a sudden and that's all you can do.  I was exhausted when I went into rads.  I finally was able to get rested but the fatigue still lingers.  Very strange.

Whatever type of machine your center uses, it will do the trick for you!  HUGS!!

tucker3

Hi Everyone!! Tomorrow is my final (16th) rads treatment and I can't believe how fast the time has gone by. My skin is pretty good. I have been applying the RO recommended Glaxalbase cream 2-3 times per day and try to go braless whenever possible. I'm pretty comfy wearing my cotton t-shirt around the house! I had to laugh at Gilesmt's comment about requesting treatment for the other breast because of how much smaller (and harder) the treated breast has become. I do feel fatigued sometimes but I have also recently began an exercise program to start to build up some muscular strength and endurance. I think the exercise actually helps. My RO said that I could expect the skin SE's to continue for another week after treatment ends and that recovery from the fatigue will take quite some time. I can be patient! Thanks to everyone for sharing your experiences, your good humour and your wonderfully supportive messages. You are the best and I wish you all good health and happiness. Hugs, Tucker 3

PontiacPeggy

Just a thought, Ladies. I finished up my rads 1-1/2 weeks ago. Since then I had not done any stretching of my SLN arm. Why would I? I had had absolutely no trouble with it (other than the incision being a pain). Well, yesterday my underarm felt tight and was bothersome. So I stretched it good. I should have been doing it sooner. It was tight. It did loosen up right away. Apparently, I need to do this regularly and that had never occurred to me. So now I will do that. You might want to remember to stretch that underarm regularly too.

Jaimieh

Peggy mine is tight so I have been making sure I stretch my arm and side out as much as possible. I really don't want to add physical therapy appts to my schedule. 

As anyone noticed their treated breast getting any smaller ??

Runnergirl36

Hello All,

I had my first treatment today. They offered me "Canadian style" option and i took it. Basically means 20 treatments instead of 35. My center recommended Aquaphor and my friend went through it at the same center two years ago and that is what they recommended for her and it worked great for her. Good Luck to all. 

Generation3

Jaimieh and Bow1965

Thanks for the info about the rash on my back. You are right, the radiation goes straight through to my back. I saw  my RO today and she confirmed that for me. My treated breast does seem to be  getting smaller. I guess this makes sense, radiation kills cells, both good cells and bad cells. Good thing the cancer attacked my bigger breast.

Strongenough13, 

I found rads to be a piece of cake after chemo, although I did start rads 3 months after chemo was done due to needing a second lumpy to clean up the margins. I think you'll find it much easier. Good luck!