Fall 2013 Rads

Hi all-

Lorrie, sorry to hear about your loss.

Wyo, my mom is similar to you but they gave her the full dose of rads 7 1/2 weeks I think.

My mom has a pretty bad rash or radiation burn so she had to stop the rads for a bit. She is on the boosts and wants to finish so badly and get it over with. She hopes her skin can make it through the last week.

Does anyone know any exercises for keeping the area stretched so it doesn't tighten too much after the rads?

Lisa Sp...i also have a port,and my oncologist said he is gonna have it taken out,when i finish my 12 weeks ,1 day a week tax.Before i have my radiation.I have 5 more tax to go.He seems to think i got blood clots from it.Who knows....i take coumadin.Was wondering why yours was coming out...it has helped me,especially the labs,my veins ,dont want to work sometimes.Will be so glad when i can see hair on my head...lol my head gets cold,anyway,thanks for posting....Kay

Bluebird - I agree with Rainyday13, fire them! You aren't a guinea pig. They need to go back to school and get it right. Rads are stressful enough without incompetent people administrating them. I applaud you for standing up for yourself.

My rads, with special breathing, took no more than 15 minutes and that included changing, talking, set-up, rads and putting on lotion. Something is definitely amiss here.

Please keep up posted.

(((BIG HUGS)))

Bluebird go for it! Its just ridiculous what they are putting you thru. Id go for the first two options. Dont stop getting yourself cured because of such inexperienced peiole and you should write that letter to save another person from going thru what u are.

Hows your skin holding on? Mines turned all d dark and swollen n sore. Hope the weekend break gives my skin sometime to heal before d next sessions.

Take care and best of luck!

ItIsWhat-

I am so sorry to hear about the passing of your mom. ((hugs)) to you.

Cakes and rainy day, the lube your talking about is a bolus? (To increase skin rads?)  The place I'm going uses a wet towel.  

I also am getting lots of quadrants so I wonder if that takes more time? Breast, axillary, clavicle.

Thank you everyone for the support. It's one thing to tell my husband what a miserable experience this has been, but you ladies know what I'm talking about and it gives me hope that a "normal" timeframe is possible!

I think rads experience is different for each of us. When my auntie had her rads it was like a spa. She had her own special robe they gave her, she brought in the music she wanted to listen to, had a locker and changing area............. I, on the other hand, sat in a small waiting area with other cancer patients waiting to be called. Went into a room and changed behind a curtain and placed a hand towel over my chest. On the table I went and into my mold for about 8 minutes. I had at leasts 4 areas zapped. I was done in a total of 15 min or less. Everyone is different.

Bluebird - The loob for the boob or creaming as others call it, is just Aquaphor, Radiaplex, aloe or some soothing cream or lotion gently applied after radiation to help the radiated area feel better.

This site has been such a comfort to me as I was going through my rads. I can only hope I am paying it forward.

bluebird, that really is a difficult scenario. I am being treated at MD Anderson and doing the gated breathing. The software for the gating on my machine did have some problems. It happens. BUT. They did not have me lay there while they figured it out! The one time it messed up while I was on the table I was on the table for less than 10 minutes. They had me get up and put me on another machine after a short wait that had gating. This facility has 6 machines, though. A couple other times I was assigned to the other machine but got back to my original machine. The waits can be very frustrating but I believe it is beyond tolerable to be on the table that long. Your RO won't like it. If it doesn't bother him, well...I'd start walking. I'd start wondering about the techs, too. X-rays are once per week. I had 11 fields and it took 25 minutes. Maybe 5 extra minutes for x-rays. Some of us have a more complex treatment plan and it does take longer. When I had rads on the other side it did only take 10 minutes.

I had to have my finished, gorgeous, profylactic, skin-spared, immediate DIEP flap breast removed to flat as possible to treat this round of cancer. Not quite like a failed flap, but similar. I can relate. It's a lot for you to go through and it is NOT too much for you to demand better treatment. Let us know how it goes on Monday, bluebird.

Thank you so much! I feel stronger this Monday than last week thanks to this wonderful forum!

Cider, your information is truly valuable since I have no frame of reference for how long or what to expect. I know everyone's treatment is different, but my gut is telling me this is wrong. Just like my failed flap. I went in every week sometimes 2 & 3 times a week for a month telling them something was wrong before they took me seriously. 

Laying on the table in a contorted painful position  for over two hours is simply not going to happen anymore!  I could hardly bend or move my arm all weekend it still hurts so much. Tried to keep up with my PT  excercises but -dang!  Yowza!

I must be the unluckiest doctor picker out there. 

Good luck Lisa! My first rads treatment is at 1pm today. They called me and asked if I would mind backing it out one hour, one of their machines is down. OY.

Just finished rads 13/25 and saw the RO. she said I am still looking good but the pink is starting to deepen so she prescribed the silvadine cream to begin daily use.

Now at the LE physical therapist office for a 2 hour appointment this afternoon. I am starting to feel some tightness so hopefully this will help me get back to full ROM.

Hope everyone has a positive experience at their rads today especially bluebird.

To those healing good wishes for you too.

Those just starting I am in your pockets.

Have a great week my friends.

Well, my first radiation treatment went fine. Several x-rays, then the 'light field' was overlapping my healthy breast. Two docs came in to assess. They said ok for today but from tomorrow on, tape the healthy breast out of the way. Dang things are always interferring one way or another! Heheheee! The techs were very kind to me and made sure they covered me back up for most everything. That meant a lot to me.

Anyhow, it's nervewracking......so many firsts and waitings in this journey. I am normally a 'cup half' full kind of person but this diagnosis really hit me hard. Now it seems, I can only think about the worst. I wonder if it's because I have had it so easy? The whole process hasn't changed my life too much and compared to you other girls who have had mastectomies, reconstruction, radiation and who knows what else, what I have isn't a ripple in a puddle. Why am I thinking the worst? To tell you the truth, I even feel guilty because it's been physically easy for me. Emotionally? That's a horse of a different color!

Bluebird, I pray that things get better for you. Lord knows you have been through so much already. At the very least, they should NOT be treating you like you are stupid! Who knows your body better than YOU???? How about a little compassion and how about they treat you like a PERSON and not a case number!

Lisa, how did your first appt go?

Thank you MsPharoah for the best wishes. I love these discussion boards. No one understands better what we are going through like you girls. This is the only place where I feel like I can vent and really say how I am feeling. Just because I have had is physically easy, doesn't mean that it's been a picnic in the park. You girls understand that. Thank you so much!

Jeannine, I hope you feel better. Sounds like your RO is right on top of things.

Rainyday, you have had a hell of a time too and I pray that things get better for you too. I hope things get better for all of us. I hate living in fear and anxiousness all of the time.

HUGS

Denise

Good luck to all those just starting and thank you to mrsP and those further out helping to pull along the rest of us! You truly are a lifeline!

 Dr. did not return my call (yet) but someone talked to my techs today. They were a little cooler than normal and I told them I left a message for the Dr. and that I was unhappy with my treatment length but I did not blame them, just the equipment and table time. I let them know I could only do 30 minutes. (More time for Xrays understandably) I could tell they were a little upset and said "we're doing the best we can". I said I knew that and it wasn't their fault. But the room was a little chillier than normal and that room is pretty cold if you know what I mean! It's just so frustrating. I don't want hurt feelings and I truly think it's the old machine that isn't set up properly for gating. But they hustled and my treatment was done in 40 minutes so I'll take it! 

LisaSP and Denilynne, had my first rad today also. I was in and out in ten minutes. Hope they continue this way. If I was treated like Bluebird, I would be out of there so fast. How did it go today for you?

Rainyday, consider acupuncture for that nerve problem! I've been doing is since shortly after starting rads. I initially had some sharp zings from the rads, but nothing since. The more I go to acupuncture ( once a week), the more I'm sure it's taking the pain and discomfort away.

Glad it was more tolerable Bluebird. Still no fun to deal with defensive techs though. This is all hard enough.

I was happy though that I was able to be "up" and chatty again. Not how I feel on the inside, but the way I'd prefer to be in front of them. I did ask about the red dots on my skin - I can see all the little hair follicles are getting red and was concerned it was a beginning of something angry. The tech said "well, actually it will ALL get red - sorry". Oh well. At least it doesn't hurt right now.