Fall 2013 Rads

LisaSp

Bluebird: Sorry they are adding yet another thing to your time. Can you ask someone for a very clear explanation of why this is all necessary?

Imamom, congrats on being fully radiant!

Tx 7; all is well but there is a bump where my port used to be. Checked in with the nurse she didn't know, so she told me to call the people that put it in. Hopefully it's just scar tissue, but it's only been two weeks...

peacestrength

Hi Ladies - I have only 8 more treatments to go Next week I'll receive 5 boosts to my incision line to include the drain tube scars.

FierceBluebird

Has anyone gotten a good explanation for the scar boosts? Drain tube scars? Really? I guess that's because they are in the field of the mastectomy scar?

At least one of the rad opinions I got, they did not do scar boosts. Where I'm at now they do, but it makes me wonder how necessary they are.

denilynne

This is what I was told about boosts at the scar(s). When the surgeon removed the tumor and/or involved lymph nodes, they might have touched the sides or edges of the surgical site possibly leaving cancer cells there. Make sense? I'm not a breast cancer specialist so I don't know.

Rainyday13

Those of you who are doing gated breathing, are you wearing the special goggles (glasses)? I put on the glasses and there is a screen with a yellow narrow line and a thicker blue line on top. The yellow line represents my breathing because I can see it move up and down. They tell me to hold my breath and the yellow line moves into the blue area and I have to hold it there for approximarely 15 seconds. It's not hard and works really slick. They tape some kind of device to my stomach that detects the breathing. Just wondering if amyone else is using that..

FierceBluebird

From what I've read the newer machines are compatible with the goggles. It's actually good I'm not using them because I'm colorblind. Makes me wonder if I'd be able to see the lines well.

Spent this evening making pure aloe gel. Super proud of my Ninja blender which powderized vitamin C tablets! Super excited to have plenty of aloe vera leaves since I just brought my plant in from the summer outside.

Not so excited to make an entire jar of it and use half just covering my breast, underarm and clavicle! It was too much work to do that again!

Mr. Stained glass turkey knew all along.

cider8

rainyday, that's exactly how my gated breathing was done.

karibari

Rainyday - I am doing the gated breathing, but no goggles. I will ask about them tomorrow. I had the somewhat dubious distinction of being the first patient in the USA to use the new ABC machine from England. As far as I could tell the only difference was the monitor and the sound effects. But the techs were super excited about it and took lots of pictures. Treatment took longer than usual as they made lots of adjustments, but the breath hold actually seemed more efficient to me. Usually there is a pause from when I hit my threshold to when the machine ramps up and delivers the beam. With the new machine, it's nearly instantaneous from when I hit the breath hold. When we were all done, the techs gave me a gift card for a 30 minute massage and a Starbucks card. I didn't think I deserved that - but they were very happy!

Bluebird - I am excited about your homemade aloe treatments! I bought some aloe leaves yesterday because I didn't feel like the aloe gel I bought at Walgreens was doing the job. But I didn't think of blending them - I just opened it up and squeezed the goo onto my skin. I am doing the Father Romano aloe juice to drink as well. I love the power of aloe!!

ItIsWhatItIs2013

Tomorrow is my last treatment (rads).....  

Good luck to all..,,, its totally doable!

LisaSp

Bluebird: What a pretty kitchen and turkey!

FierceBluebird

Thanks Lisa! 

Karibari, I haven't heard of the father Romano juice. I also made an "aloe shirt" to wear. I took an old soft. T-shirt and soaked the area over my burns with aloe. After wearing it last night, it really helped! I feel so much better today. Hung the shirt up to dry and its ready to go to put on again after today's treatment.

Itiswhatitis, woohoo!  Time to celebrate!

peacestrength

Bluebird - Regarding my boosts: I was informed that breast cancer can appear in scar tissue - this is why I am receiving boosts to both areas (incision line and drain tube scars). This is my unique treatment for stage 3 bc - I also got a second opinion who stated the same for me.

7 more to go!

McKatherine

boost and bluebird - you ladies are cracking me up with tales of crazy nurses and uniboober!

Bluebird- I had doses for my drain sites all through treatment (28 doses), only 25 doses to my supraclavical nodes, then 4 boosts to my mastectomy scar.

I finished yesterday and am taking my crazy nurses's advice to rest all day today! Just wish I wasn't fighting a cold (But I'm glad it didn't hit while I was in the middle of treatment).

Can't remember who asked but I'll second the experience that your skin starts healing soon after the doses stop. My back (where the supraclavical beams exited) quit being pink just a few days after those doses stopped, and the lines from my chest wall doses are already starting to fade.

One more song for the playlist - Rolling in the Deep by Adele. It was playing when I got my pet scan and I've connected it with treatment several times since then.

Gentle hugs to everyone! Hang in there radiant ladies.

Bounce

Mr. Stained Glass Turkey Rocks. I want him. I bet he knows a lot.

Rads suck big time! I had a little pity party for myself after treatment No. 3 today because I had discomfort bordering on pain yesterday afternoon (after 2 treatments!) and I freaked out. No-one seemed to care this morning when I asked them about it.

I realized that before surgery I felt fine and I expected to wake up after surgery with drains and pain and in hell - and instead I woke up without any drains and the doctor had given me a numbing injection after surgery so there was very little pain. And then I just expected to get better and slowly but surly I did.

With rads it is different. I expect to get worse and worse but don't know how bad it will get. I see some ladies sailing through and others really struggling. Its early days yet but seeing as my boob is hot and sore and not happy either in or out my bra I feel worried.

So I decided not to fight the crappy feeling after treatment. I took myself back to the waiting room (which was empty) and sat in a quiet corner near a pot plant and had a little pity party.

Then after I acknowledged to myself that I felt sad for myself I started to feel some wriggling in my pockets and realized some of you had come along with me and were demanding Starbucks and donuts for the pity party. I think one of you might have been playing a very small violin.

So I pulled myself up by my socks (my daughter says I should pull myself up by my bra straps!) and went off to work where I was too busy to think or worry about the pain - which thankfully isn't there all the time - it comes and goes.

I figure all I have to do is survive the next month and a half. I have been dusting with corn starch only, as instructed, but on the weekend I am going to use cream.

I think I have the local equivalent of Aquaphor but would like to make sure.

Can anyone please check if these are the same ingredients:

Aqua, Petrolatum, Cetearyl Alcohol & Sodium Lauryl Sulfate, Mineral oil, Methyl, Propyl, Butyl, Ethyl Paraben & Phenoxyethanol Citric Acid.

Is this sh*t safe to use with radiation?

And by the way - thanks to my daughter this is what my nails look like:

Seeing as I never wear nail polish its a bit of a shock to my system!

Hugs

MsPharoah

Good Morning McKatherine and ITisWhatITIS.....

Congratulations ladies! You made it and now it's time for you to shine!

MsP

JeriGrace

Bounce, love your attitude and agree that donuts do seem to make things better. The small violin had me laughing out loud! Here's what my Aquaphor tube lists for ingredients: petrolatum (41%), mineral oil, ceresin, lanolin alcohol, panthenol, glycerin, bisabalol.

denilynne

Congrats to McKatherine and ITisWhatITIS! You made it! I can't wait until I am D-O-N-E! But if they give me a bell to ring or anything like that, I am going to bust someone! I just want to walk out of there quietly and put it BEHIND me and never think of it again.

Bounce, would you please send your daughter over here to give me a manicure just like that? I love it!

What do your pains feel like Bounce? Today, was my 8th day. I have had shooting pains in my boob like someone is taking an ice pick to me. They don't happen all the time but seem to be more intense right after rads. Not many of them either. It's probably just nerves regenerating, who knows!

Radiation is an emotional trip isn't it? I'm good on Mondays but as the week wears on, things get worse. The anxiety comes creeping back.

Back to work for me now, thank God I have a job. Keeps the mind busy.

 

Bounce

Hi JeriGrace! I live a few thousand miles away from the closest Starbucks but a girl can dream. Also I haven't touched sugar or white flour since August so just the thought of a donut has me going Yes, yes yes!

Thanks for the Aquaphor ingredients - I see yours doesn't have parabens which makes a lot of sense. I am going to check with the Nurse if that is the cream she meant?

Last question about Aquaphor - which company manufactures it?

Thanks again for the ingredients.

flat13good

I am a fair skinned red head and I worked full time also I did not have trouble till about 20 or so treatments and I had to stop after 22 for a week so my skin could heal from the blisters a little before I had the last 11. I scheduled them late in the afternoon so I would leave work early and go to my treatments then home to rest. Aquaphor and lose men's t shirts worked to help save my work clothes form the messey Aquaphor.

Bounce

Hi denilynne

I hope this isn't too much info but here goes - My breast feels heavy like its pulling down. I feel lopsided. Sometimes it feels like there is something deep behind the nipple swelling and causing pressure. The nipple gets itchy and then stops. The part where my arm attaches to my body in the front aches for about 10 minutes at a time and then stops.

The hard part around the scar which was just starting to soften up is getting hard again. Sometimes I feel tingling like after getting sunburned.

And my fingers on my radiation side feel "funny".

Besides for that I am doing great. 3 down 22 to go.

Seriously - all I have to do is get through one treatment at a time.

And yay me - I rode my exercise bike for 20 minutes tonight even though I thought I was going to melt.

Before I got cancer I used to hang clean washing on the exercise bike until I had time to fold it up.

And that is what I resent almost most of all about cancer - it has forced me to exercise.

jbdayton

Aquaphor is made by Eucerin. I have found it at Walgreens ($12.88) and CVS. I think just about any drug store carries it. I even saw it at Walmart.

MsPharoah

Bounce, your daughter sure knows which finger to put the radiation symbol on. Love that manicure. LOL. Sure wish I could wave away all the early problems you are having and all the stuff you have given up already. I resent everything about cancer.

You will soon be shining brightly, radiation in your rear view mirror and you can stick your freshly manicured middle finger out the window at it.

MsP

Jo6202

Bounce - my RO gave me a bottle of special cream he wanted me to use and there were two different kinds of parabens in it. I said I wasn't going to use anything with known cancer causing ingredients especially ones that act like estrogens since my tumor was estrogen positive. I said I would use 100 percent aloe ( found at Walmart) and Aquaphor and nothing was said but now at every visit with nurse or doctor they ask if I'm still using aloe and Aquaphor. Go figure!

Itiswhatitis- congrats on finishing tomorrow.

We have a donut place in our local town called Cops and Donuts. It is known world wide. Hummmm donuts and Starbucks. Oh forgot I am trying to cut sugar out of my diet! I will dream about them while getting rads tomorrow :-)

Lav

Hi ladies after a long weekend back to treatment no.16/30. Basically started the second half of my treatment.

Bounce I get that pain too that sharp shooting pain that makes me yell owwww and take my breath in. Docs told me its ok to take tylenol for it. I dont know if some of you have had your breast swell up like oh so way bigger than the other breast? My husband always wanted me to get a boob job but I would have preffered to get both of them bigger!

Ive started turning all light brown n rexdish around the radiated area and from last thursday have been down woth a very bad case of wheezing and a cough. Doc says one of d side effects is a cold but no cold for me this is so much worst. Has anyone whose been receiving rads to the left breast had this problem? Hes made me stop any sort of physical activity until next week as he says it could just make it worst. Isnt our lungs on d left side? Other than that its doable d fatigues become worst so he suggests I stop working. Has anyone ever felt that if they had just a little bit of sugar u get a searing pain at your breast site that was operated? Or am I just being paranoid?

Im suppise to go see my pneumologist if my asthma doesnt become better by d weekend..... keeping my fingers crossed!

denilynne

Bounce, that heaviness you feel is one of the SE of radiation. As for your arm.....has anyone checked you for signs of lymphedema?

Also, I wouldn't worry about too much information in this forum. Actually, I think the more information, the better. Gosh, my heart goes out to you. You have been through hell and aren't even on the way back yet. My goodness, you are only on treatment 3. I have to give you tons of cudos though. You can still joke about the situation.

MsP, it didn't even register with my which finger the radiation symbol was on! LOLOLOL!!!! Too clever and Bounce is just the perfect person for this particular manicure. By the way, I resent everything about cancer too. It's dehumanizing.

Lav, I have been getting those shooting pains that you spoke of. Today has been particularly bad.

During whole breast radiation, the top sliver of lung gets radiated.

Can someone tell me what the connection between sugar & breast cancer/surgery is?

 

Jo6202

Bounce, I just read recently about lymphedema and how you have to be careful about the amount of pressure you put on the handlebars of bikes because it can cause lymphedema to rear it's ugly head. Maybe riding your exercise bike is putting too much pressure on your arm....just a thought. May want to check with RO before continuing.

Paddle

Hey Everyone! I finished rads on Oct 9th. Just wanted to give all of you with pain a new potion I used and haven't heard mentioned on here. It is called Water Jel Burn Jel. I have used it for years for minor kitchen burns. It contains Lidocaine 2%. It was enough to get through my walks where the under arm rubbed while I walked. Also, calmed the zingers inside the breast. The numbing effect lasts for 3-4 hours. It is sold on Amazon...it comes 25 packets to a box. I am a small "A" cup and could get 3-4 doses out of a packet. I know it cost less than $20.00, which included shipping. Sorry, can't remember the exact cost. Please read all the info before ordering...it can't be used on open, or weeping skin. I was super red, but had NO skin breakdown. I did not OK it with my RO because I didn't think of using it until I was done with whole breast tx. I used it that night and continued through boosts, but used none on the boost area. It is water based so it washes off easily, so it could possibly be used on weekends. After boosts it saved me from what I am sure would have been lots of pain! It was nice to know that I had a way of controlling pain that was topical instead of having to take yet another pill! Hope this works for you...NONE of us should have to be in pain.

Good luck oh Radiant ones! Paddle P.S. It also takes away the itches!

ItIsWhatItIs2013

ItIsWhatItIs2013

Bounce...

About midway through my rads, I had the same sensations with my arm and worried abiut lymphadema. Dr checked it out as okay and to just watch it... it went away after a couple days.... I hope the same for you!

I see you only had 2 nodes removed.... theyvwilk tell you that you are at LOW risk fir lymphadema..... but keep an eye on it.., especially if you notice swelling.

This thread is great! Where else can we hear the facts if how we are feeling from others whi are actually going thru it & not go7ng by what a text book says we "should" be experiencing

Gracers55

WOOT WOOT!!!!! Congratulations to you. I have two more boosts to go. I've had a bit of redness and dry skin but not too much more. I was told to use only aloe gel so I slather it on and cover the area with a piece of cut up tee shirt so my bra does not get guncked up. I understand with hypofractationation the SE's may hit a little later. No matter... I am confident I can deal with it. So far radiation has been a cakewalk compared to chemo. Love to all of you. You are all amazing!