APRIL Rads Anyone?

Bettelou-Oh my gosh a wedding in the middle of everything you are going thru... you go girl! Congrats! I think that's great!

Donna-I have those meltdown days. This whole things is a rollercoaster ride. One day I feel horrible and an emotional wreck, then the next I want to party! aha.  I also get silly commetns like "why are you so tired" or "what do you think is making you feel so bad?" ... ugg!

Lainey-It's so normal to feel that way you do before any test now.  I'm sure your mammo is going to be 110% perfect, but stressful I am sure too.  Just go in there with gusto!

I have my simulation on Monday, how long did everyone's take?  Do you have to lay still on a hard table for very long?

Hi everyone,

I finished dd ac/taxol 01/16, had bilat mx 02/24 and will be starting 25 trts of rads mid April. I go for my ct and simulation on Thursday. It's going to be a little bit surreal for me as I use to work as a clerk in the radiation therapy dept where I'm going. I'm told I'll get VIP treatment but I'd rather be on the other side of the desk!!

Bettelou congrats on the honeymoon!!!

Donna, I definitely have meltdowns, I find they happen more at night when I'm alone!

Lainey, I think we're entitled to be nervous before all our tests now, I'll be praying that you have no problems.

Here's hoping that everyone's rads are a walk in the park!

Hugs,

Linda

Susan,

Actually it's called a CT Simulator: CT Simulation is the most accurate process available to localize, define, and reconstruct, in 3-dimension, a patient's tumor. This process identifies the tumor along with the normal tissue surrounding it, allowing the Radiation Oncologist to design a treatment plan unique to each patient's anatomy. It enables the Radiation Therapist to map the resulting treatment coordinates with a high degree of accuracy.

As far as I know it's different from an actual CAT scan machine. Hope that helps. I wasn't sure myself as I only booked the radiation treatments not the simulations.

Linda

Hello to everyone.  I completed 4tx of TC on March 6 and am scheduled to meet with my Rad Onc on April 1 with a CT scan to follow the meeting and then simulation on the 7th with first treatment starting April 8.  At least that's what I think is the chronology (my chemo brain is really making things like this difficult).

Linda--Thanks for explaining about the CT scan.  I had an inital consult with my Rad Onc before I started chemo, which I thought was a bit premature, and when the nurse called to set my April appointment, she was talking about all of this stuff as if I had recently seen the doctor and knew what she was talking about.  Seriously, I had to have her repeat the info while I was writing it down a couple of times and then she realized that maybe I should come in earlier for my appt. on the 1st to talk to the doctor again.(gee...ya think?)  At this point I don't know how many tx's I will be having so I was a little confused when I was being scheduled for the first one.  My PS on my 3 month follow up earlier this week suggested that I ask the Rad Onc if I was a candidate for a 3 week regimen twice a day versus the once a day for...whatever amount of time.  So when I was told that I would be starting on April 8th for once a day tx...well, I was a little put off since I felt like I didn't even have a chance to discuss what was already determined.  But maybe I'm jumping the gun a bit.

Can I ask everyone here a question?  I understand that getting past chemo is the usually the hardest part of the treatment, especially if you just have the radiation to complete afterwards.  For those of you that had the TC/21 day treatment cycle, this week was, theoretically, one of my "getting back to normal" weeks.  But this week has been the hardest mentally with freakouts about radiation/fear of the future and days where the first half of the day I felt pretty good, but the second half of the day hits me with  crazy fatigue and chemopause.  It's frustrating.  Has anyone else experienced this after their chemo was completed?

Also, my regular onc hasn't mentioned tamoxifen to me.  Today was the last of my weekly appts. with him and I'm not scheduled to see him again for another four weeks.  What exactly is the protocol for those of you that are/will be on it?

Whew...okay, I feel like I've cyber blabbed enough.  I'm glad that I found this thread and here's to getting through rads!  Let's DO this thing!

Catherine

Eadsla-I "freaked" out when I went for the mapping for the rads. I don't know why, but I had such an anxiety attack I thought I was going to pass out.

My simulation took about 1/2 hour. I just laid in the position, they lined everything up with my tattoos and took a few x-rays. I start the real thing Monday morning. They recommend 100% Aloe Vera and Dove, Ivory or Caress soap.

I don't know if I will have to pay a co-pay everytime I go. If so, that will be another $640 out of pocket. Breast cancer sure is expensive.

You are so right. I am so greatful to have the insurance. It makes you wonder how the insurance companies stay in business. My bills alone to the insurance company have been astronomical. Without the insurance I don't know what I would have done.

My rad onc is an NIH researcher and says despite lots of studies, no one moisturizer shows a better result than the other.  She said the moisturizer that works best, is the one people use. In general, she also said choosig one with the least amount of ingredients is also a good idea in general.  Otherwise, just the typical aloe, vitamin e, etc.  IAll that said,  have heard about emu oil (big bird oil), and on drugstore.com they have an FSA approved moisturizer called blue emu.  It caught my eye because it is one of the few FSA approved moisturizers.  Anyway, there are several reviewers that evaluated it, and they all loved it.  I'm not sure if I'm going to try it or not as it is a bit pricey, and I may just be falling into the trap that my rad onc tried to steer me clear of (don't buy expensive moisturizers, they don't work any better), but .... it seems like it gets good reviews.

My rad onc also said that the reaction is more related to how you treated your skin when you were little. If you baked in the sun when you were younger and damaged your skin layers, then you will likely have a lot of red, itchy skin.  She also said that since my skin is mostly numb after the mast, I may not experience the pain/itching, but still need to use a moisturizer.

BTW, below is a link to a book that my rad onc gave me. It is NIH's pub of radiation therapy and you. 

http://www.cancer.gov/cancertopics/radiation-therapy-and-you

Donna - I hear you!  I go along fine and then crash also.  I think it is (for me anyway), you assimilate one thing and then they throw something else at you- cancer or otherwise.  Face it, we are under the worse stress we have probably ever been under, and when you are very stressed it only takes little things to set you off.  I think we are all doing great and are true warriors!  hang in there-  Oh by the way, I start rads in April also.  I have an hour drive (one way) to get to the radiation place, but I guess I will be strong and do it.  Tami

Good morning everyone!

I finally felt somewhat normal yesterday, 2 weeks post last chemo.  This afternoon going for my simulation, I'm so tired I hope I don't snore on the table!

Good luck Elaine, let us know how it goes!!

I discussed the whole lotion/cream/oil thing with my rad doc this morning and he said not to use anything until I get more of a sunburn look and then pure aloe is the best thing.  I talked to his nurse and she said there is an aveeno unscented lotion that is good - the more natural the better.  They don't want you using anything with alcohol in it because that will make your burn that much worse.  I'm bummed because I can't use my Bath and Body Works body wash so I guess I'll try to find something unscented - Dove sounds like what a lot of you are using.

I did my first Relay for Life this weekend - living in Florida we do it before it gets too hot.  I don't know if any of you are involved but I am an advocate!  ACS has done a lot for me and I wanted to give back.  So my team made our goal and the entire Relay made $5K over goal so it was successful even though we got rained out at midnight.

4 days of radiation and doing good.  I guess further down the road it gets a bit more difficult. 

God bless all of you who have gone through chemo and now have to go through radiation.  You are all angels!

Donna

I had my rads sim today.  I sit here all marked up with black Sharpie marker, but I am so glad to be at this point in the game!

Results from PET scan came back clean!!!   YAY!  No cancer anywhere!  Like it could live through the chemo that has practically killed me....but still you worry!

Yes Donna, I had a "relief meltdown" during sim today when Dr. told me PET scan was good!  I still have the nasty steroids in my system from chemo, so it doesn't take much to set me off!  I cried hysterically.  They sent me over to a woman who is a social worker who works with cancer pts.  It felt good to talk with her.  We are burned out.  Many of us have been fighting this monster for 6 months or more...we're tired, it IS depressing, it has sucked some of the lifeblood from us.  I am tired of having to be strong and pretend that I am feeling OK, and that I'm not worrying to spare others.  I need a frickin' VACATION!!!!!!   And I plan on taking one as soon as I not feeling the chemo as much.

Love to all,  Carol

I had my first treatment today also. No big deal.  But kind of scary when you walk in and see that big giant machine!   I already feel tired but I know it's all in my head it because I've been reading about radiation fatigue.  Surely it isn't starting already!  I wonder if it could also be just anxiety or depression about the whole cancer thing.  Seems so "real" now....