Fall 2013 Rads

Hi, everyone. Okay, I'll admit it - I've been lurking on this board as I get ready to start rads next week...promising myself that I'll go back and read every one of the posts here so that I'll learn all of your secrets for getting through treatment...but this has got to be the most active (and one of the most caring and loving) threads on this site!!! I can't keep up with you! Anyhoo - I had my CT sim last Wednesday and they told me they'd call me in 7-10 days with my rads schedule - so I have about a week left to read everything you've written, and I fully intend to.

My RO asked me if I wanted to be the first patient at our hospital to try the gated breathing (aka "deep inspirational breath hold") rads method, so I jumped on board. The CT Sim took about an hour and 20 minutes (with arms up over the head in the form the whole time), in and out of the CT machine, so the techs could get everything right for this first attempt at this therapy (I look at it as a shakedown cruise). My fingers started to get tingly and at the one-hour point my left shoulder was really uncomfortable - dealing with that became a "mind over matter" event, except for one tiny moment in the machine where I thought, "I have GOT to move my arms!!!" But that, too, passed, and my tattoos were mostly a non-event (I realized that my right side, where I had two nodes removed, is infinitely more numb than my left, where I could actually feel the tat needle going in). I have always been a non-tattooed person, and now my husand thinks I'm "badass" because I have these six little black dots! He doesn't know I may eventually turn one of my four-inch lumpectomy scar into a flower!

Bounce - Hope all goes well for you today on your first rads treatment. "You've got to go through it to get through it." As Mlulu always says, we are in your pocket. You give so much support and love to all of us on these threads - hope you can feel it coming back to you bigtime today! Hugs.

Otterlike - I'm curious about why you can't take Wellbutrin while on T? My Onc didn't mention that to me.

Bluebird - You're doing gated breathing, too. I've read a couple of your posts and am sorry you've had such a rough time. I welcome any thoughts you have about this treatment as I begin the same thing.

Has anyone had any throat or swallowing problems during or after rads? I scared myself this morning reading stories about this.

Okay, here's my addition to the song list - "Invincible" by Pat Benatar? Hugs, all.

1 down 24 to go (may have boosts during last five or added on at the end - doctor will decide).

RO says not to use any cream - "nothing helps" is how he phrased it. Thanks for the encouragement.

Radiation Nurse who I met today is a very sweet nut job but a nut job none the less.

She has an opinion about everything.

She told me to be really careful with my arm on the nodes side - no blood pressure cuff or needles etc. I told her the surgeon said I didn't have to worry about it as only 2 nodes removed. She asked who my surgeon was. I told her. She said: "Wonderful lady. My best friend. We eat lunch together everyday. I am right and she is wrong." She also told me not to lift more than 2 kilos with my right hand/arm.

I started to write things down when she started speaking and she told me to stop as EVERYTHING is written down for me on a hand out. Tried writing again and she stopped me again. Later on at home looked at the hand out - most of the things she spoke about weren't mentioned!

Told me not to use any cream. NONE. NOTHING. But to dust my booby twice a day with corn starch.

I asked her if I could use Vanilla Pudding (it comes in a very similar packet here.) She was not amused.

Why are you gals all using nourishing creams and lotions and oils and I am using drying corn starch!

Because my nurse is a nut job and that is her opinion which has now been served to me as fact.

Good thing I am old enough to know the difference.

I will be using the corn starch for a while - but from tomorrow I will be making discreet inquiries to find out if there is perhaps a second nurse whose opinion I might hear.

The nurse is actually a very nice lady - she told me to consider her as family from now on. Really? That's what I need now? Another crazy relative.

From tomorrow I will be starting to ask my techies some serious questions. Lets see if they are up to the challenge.

I hope the techies understand more about radiation than me because from what I read today about Sievers and Grays and Rads - I would have thought I should be dead already and yet I am obviously very much alive.

Do you just take the total amount of radiation you are getting (for me 60 Gray) and divide it by the number of treatments (25 for me + 5 boosts - so 25 or 30?) to work out how much radiation you get each day or is it more complicated than that? Anyone know?

Hugs

Bounce, my facility also recommends cornstarch during the day and then creams at night. I haven't started the cornstarch yet but I'm using Aquaphor several times a day. Ok so far but I've only had 4 txs.

Hi Kruise!! What I found was that the healing started in the non-boost area before the boosts were done. That was a bit of a happy surprise. I hope that is what you experience.

I don't have the guts to change out my wigs. I have a "going to work wig", a "weekend wig" and a wig that I wear when we go to our special restaurant for dinner. One time, I made a mistake when we went to dinner, and the hostess went on and on about how she liked my new color and do!!! Then next time, I am back with my old drab "hat". Gladly no comments were made. My hair is growing now and it will be some time before I am out of the wigs, so I have time to figure out how to make that transition.

I know that many/most women really agonize over chemo-induced hair loss. For me, hair loss was only important because it robbed me of my privacy. If I had to be bald my whole life and get back my sense of well being in return, I would go for that in a minute!

Shine on ladies!

MsP

Hello,

I will join in a behalf of my wife who starts next week. I will have to read through this thread to catch up. Im sure we have many questions that can be answered by some of you that have started.

Kirkland Gal - I am impressed that you learned all that about the doses - I had no idea. And I didn't even think to ask.

I agree that nothing has helped my very fair and sensitive skin avoid the constant sunburn feeling. And my nipple is definitely on fire all the time. My RO said to use aloe 3 or 4 times a day, but I don't even feel that good cool feeling I get with a normal sunburn. I asked for a prescription cream (now I can't remember the name - chemo-brain still in effect) last week and he said he didn't want to give it to me unless the skin was breaking. I'm going to insist on it tomorrow because now it has started itching too.

I like all the ideas for the playlist - wish I had done that for chemo!!

Finished 24 of 28 today, then 5 boosts next week. I am anxious to finish - I am so tired!!

<hugs> to everybody - I am filled with gratitude that you are here to listen/support/share/laugh/cry!

HI Denilynne, I can relate to the grouchy and irritable. My husband is trying hard but driving me crazy. I was thinking about joining a local support group but they meet on Friday mornings which is when I have appointments. Some days I just want to scream. I hope once I start the rad I will not be as anxious, at least I will know what it feels like. Not knowing is never good for me. Thanks for your reponse.

regarding care of arm post surgery: even if you 'only' have sentinel node dissection, you are still at risk for lymphedema. Surgeons typically downplay the risk, which really annoys me. You can get LE from MX alone, chemo and rads. Depends on the person, technique, dosage. It all seems vague to me. Check out the lymphedema board here or the Step Up Speak Out website for more info if your doctors did not tell you about risks and precautions.

I'm done! I brought my techs a beautiful candy and nuts platter which made them reslly happy and had a nice goodbye with the coffee shop register girl at the hospital!

I was humming the song "what doesn't kill you makes you stronger" throughout my last treatment. Has that been added to te playlist yet?

Good luck to all the ladies starting or in the middle... Stay strong!

Yours truly,

The fully radiant imamom.

Imamom! Congratulations on achieving your radiance certification! As a radiant lady, you exude love, joy and good health more brightly than ever before.

Love, MsP

Imamom, congratulations! You are truly radiant :-) Best of luck with your hormone therapy.

Congratulations Imamom!

Yahoo Imamom! Great sense of humor too!

Cakes

Congrats to all those finishing up! I need to remember that it is possible to finish!

Had another breakdown today. They told me they want to make a mold of my breast to create a plate for the boosts and it would add another 15-20 minutes to my table time. The fasted they've been able to get done is 35-40 minutes so that means it will be another hour treatment day. It's just too long. Did anyone else have a mold done so a plate could be made for the machine? I am very close to telling the doctor that I've had enough. I am debating if I want to do the boosts.

Summergal, the gated breathing can be done with voice command. They place a cube on your sternum and the physicist can tell you when your breath is in the proper position. I hear him say, "ready" then "hold". If you haven't started yet, I would do some breath holding exercises. I have to hold my breath for 30-35 seconds on some of the rads. It can seem like a long time if you aren't used to it. I am glad that I was given the gated breathing option, but I don't know if I'd go with an inexperienced team like I had! I was a true guinea pig and it took them two weeks to get their acts together. I finally had to tell them they had 30 minutes and then I was getting up to leave. That day and every day since they've worked very hard to move quickly. I've yet to actually get a 30 minute session, but 35-40 is doable.

Today was day 17 and I am so sore. I have an eschar (3rd degree burn) from my flap reconstruction and it is starting to feel crusty and soft at the same time. It's really freaking me out. I'm worried the fresh skin will peel away there and there will be nothing underneath. I plan to make fresh aloe gel today. I am too sore to put a top on. Anyone who comes home early today is in for a rude awakening! Watch out for the red uniboober!

Cynthia- are you getting your treatments at The Center? I'm 4 tx behind due to the machine being down.