Summer Rads 2014

gavinsgrandma

Hi Ladies, I had my 21st and last regular radiation treatment today, and tomorrow I start 8 Boost treatments 29 all together. My RO felt I could handle a higher dose because I had BLM with delayed recon, so no breast tissue to go through and I am away from home for the treatments so it shaved about a week off for me, 29 treatments rather than 33. I am feeling pretty good ( great compared to chemo) some burning and discomfort on my clavicle area, and my armpit and lots of itching. My RO gives me Eucerine to put on and they gave me an Rx for Silvidine  cream I think but the pharmacy won't have it in for a day or so, one of the tech told me to get Hydrocortisone cream and a friend gave me some Aquaphore, what has helped you all the most?

Shary

Sunshineinky

Shary I'm using silvadene at this point.  I have an open area under my breast.  It really seems to be helping and it definately helped ease the pain.  

I hope they get it in quickly for you! I have 2 more whole breast and 8 boost.  I'm about 45 minutes each way from my center.  I could not imagine going away from home to have rads! Bless your heart! 

jbokland

Amelia- hugs sister!  

Greeting from Saratoga Springs, getting ready for our wedding on Sunday!  

Rosiesride

amelia123...don't worry about the tattoos! It's just a dot, mine are so tiny I was even asking if they had to do some over!  Only one on my chest is visible to me...I think I have 4?

I had lymph node involvement so radiation is also done on my upper clavicle...up by my neck and between my shoulders...RO will tell you exactly where rads will be directed...very precise formula!!  Techs can also be asked questions...So ask if you are not sure where radiation will occur.

My tech team is awesome and also right on schedule!  It's waiting for the doctor on doctor day Monday that pisses me off!  40 minutes for a 30 second glance on the first visit to say, "looks good"...I will be sure to ask about that on Monday!  Otherwise ,like sunshineinky, I am in and out in 10 minutes....thank God! 

Today, during rads, I am going to say the rosary using my fingers instead of the beads ( any Catholics on here? Lol)...so I can gauge the amount of time it takes.for my rads......plus I will get get my prayers in!! Lol...I really need a distraction!  Rosie

Curlyq1974

OK... I have had it... yesterday was another 3 hour radiation appointment... an hour  an half waiting for my turn... and actual hour on the table.  AN HOUR!!!  I thought this was suppose to be quick... i thought chemo was the going to be the worst part but this is going to break me.  I sobbed last night.  I get upset thinking about it... what is wrong with these people!!!  I have a GIANT purple X on my breast for them to line up the machine... 3 tattoos, and a GIANT purple line on my arm and they still can't seem to get me lined up in less than 15 minutes... It cannot be that hard!!!  I'm so frustrated I cannot even begin to explain.  Just thinking about having to go today makes me want to cry!  I feel like everyone else is sailing thru radiation treatment and I am struggling at every turn.  I never thought my summer was going to be spent in the radiation department!  It has to get better, right?  Thank  you again for listening... and for all the feedback.  I just wonder if it is me?

gavinsgrandma

Sunshineinky, Thank you for your answere, I hope they get the Silvadene in today. They said they would call me when my Rx is ready and it sounds like it will help. I was wrong yesterday my Boost treatments don't start until Monday, they were just getting things ready for the change. I am staying in our RV in a really nice RV park that we stay at a lot and I drive 1/2 hour to my appointment, I am there less than 15 minutes and 1/2 back, my appointments are at 7:30 AM so I am back early and have the whole day to do whatever I want😄 It has not been to bad but I am ready to be home. How many more treatments do you have?

Curlyq1974, I cannot believe they keep you there for so long, that's crazy, I get taken right in and I am on and off the treatment table in under 10 minutes or less. Why on earth does it take them that long to line you up? An hour on the table is ridiculous, did you have to keep your arms up the whole time? I pray today goes better for you.

Shary

Sunshineinky

Curlyq your situation just sucks.  There has to be a better way how do they see any patients if they are that slow? Is there another treatment center near you? 

Shary, I'll be done July 9th! I only have 9 treatments left.  1 whole breast and 8 boost.  I'm seeing light at the end of this long tunnel! 

rettemich

Curleyq, when you go in Demand to see the supervisor. Don't even let them touch you until he/she can figure out what the h*ll is going on. You are not alone I have had a few nightmares too. Son into your pocket I go. I will be the one screaming "get the supervisor"

Lisaj514

curlyq, that is absolutely not the norm, far from it. Yes, it should be quick. They obviously have a scheduling problem, or a technical problem. Go early tomorrow and talk to the rad dept mgr or facility director. Unfortunately your place is poorly managed. Something is definitely wrong.. AND ITS NOT YOU!. Are they new at this, brand new technicians, poorly working machine? You should NEVER wait an hour and half or be on the table an hour. If they have your marks right you should line up on the table in a few minutes ( mine takes usually less than 5 minutes to line up my tattoos and marker lines, sometimes less if I get on there just right and they don't have to tug and shift me) and your whole treatment should be a few minutes (less than 10? Ladies is that right?) depending on how many areas you are getting treated. I have 2 fields treated for 20-22 seconds each so the active beam is only on for 40 seconds with a few seconds for it to change positions. You may have more but never an hour to get it all. How many fields and figure out how long you should actually be on the table. Can I ask where are you being treated? Please don't continue like this. Make some noise, be heard, make it an issue for you and for the next patient. Is everyone else in the waiting room having the same issue. Talk and ask. Please let us know. I hate this for you

Crazywabbit

the past two days I have been taken back as soon as I check it. Positioning takes only a min or 2 once I get my head and arms settled into the mold. just a slight tug on the sheet under me is about all I need.  I know i am positioned pretty well when I lay down, as long as my hips and shoulders are flat I line up.  Maybe they  did not have you positioned flat at simulation and hard to recreate it each time. I agree with the others you need to speak to the unit supervisor. 

Rosiesride

crazywabbit...you mentioned that you were stage 3 ILC with lumpectomy ...I am stage 2b treated like stage 3 ILC and also kept my lumpectomy...I was at peace with my decision when I made it..did lots of research as well as 2nd and 3 rd opinions and tumor board...I think there are times we may question it , but I believe anyone diagnosed with bc and battling it will always have doubts....maybe?  Anyway...it's tough all around isn't it?  

Curlyq...hope your situation gets better...I would switch RO if that was a choice!! I can't imagine being on the table more than 10 minutes...or waiting...my team is punctual...the doctor is another story....good luck Hun!!  Rosie

rettemich

Sunshine, Woohoo we are on the countdown. 4 whole breast and 5 boosts. How are you holding up are you healing at all?

Sunshineinky

Rett I do believe I'm a bit better! One more whole breast and 8 boost for me! I'm so excited I may cry! 

rettemich

I know the feeling. One day at a time.

Crazywabbit

feels like I just got hit with a Mac Truck tongiht.

Yesterday I was a bit tired and went to bed about an hour early, today I am exhausted since about noon.  I go at 3 for my rx (#19/33 today). I was feeling pretty proud that I was not very  tired  and wham it hit. I just woke up on the couch where I fell asleep watching the TV.  I got up to warm something for my DH to eat and now I feel like I need to go to bed 3 hours early.  Anyone else get hit with the fatigue suddenly?  And I have that tight throat feeling again on the radiated side  tonight. Yesterday it lasted for a few hours and went away. Hopefully it will go away again today.  Will mention it at Doc visit tomorrow.  

Dog will not like going to bed this early, she will be getting me up at 4 AM to go out.

Lina999

Curlyq1974, that is horrible!!  I am in your pocket too. Demand to speak to someone. Daily rads is difficult enough, the actual treatment itself should not anywhere near what you are experiencing!  

Congrats to those of you who are almost done!!  I am thinking of you. I am officially one third done myself, YAY!  

jhodro

Curlyq: maybe we need to do a sit in at that place. Protest the stupidity. Please please please don't stand for it. I can't believe they think that length of time is ok. It is not. I really hope it improves for you!!! Good luck!!

ohiofan

Last rad tomorrow!!!

 

Sunshineinky

Woooo hooooo Ohiofan!!! I'm happy and JEALOUS lol!! 9 more for me! 

Barbara mine hit exactly like you described.  I was really tired on a Friday evening, woke up Saturday morning and basically slept all day.  I think mine hit about treatment 16 however I'm on treatment 25 and I've got a sudden burst of energy! I hope it carries me through! 

Curlyq1974

Everyone that is nearing the end of treatment - Congrats!  It is inspiring for me to read your stories.  Yesterday's radiation treatment went much, much better.  I still had to wait about 30 minutes for my turn, but the original tech that lined me up and did the simulation was there.  I nearly cried when she asked how it was going.  I was honest and told her not so good.  She got me on the table, had me lined up in no time and out the door.  I thanked her about a million times.  I'm still going to talk to someone about my experience.  It was better yesterday, but no one should go thru this.  We go thru enough!!  Thanks for listening.  Prayers for all for minimal side effects and a great day. 

jhodro

Congrats, OhioFan!!!

Curlyq: glad it was better, but I still think they should do better than a 30 min wait for something you have to do EVERY day. Good luck!!!!!!

Sunshineinky

Today is my last whole breast radiation treatment.  My 8 boost will start tomorrow! 

I'm happy dancing! Have a great Thursday! 

Curlyq, glad it was better but 30 min is still just too long! 

Rosiesride

Yey ohiofan!! 

Sunshineinky....woopwoop! It seems like you just started, so I hope mine goes that fast...even though you probably didn't think it went fast!  I am only on #4 of 36...boo!  My last 8 will be boosts so I think those are faster!!  

Crazy wabbit ....I also go at 3:00...thought that would be a good time so at least I could do fun stuff in the morning!  It's a 40 minute hike to treatment...I still am low on energy so I will be really down and out when rads fatigue hits!!

Have a great day...with minimal side effects!! Rosie

rettemich

crazyrabbit, It has not been an ongoing thing, thank goodness, but I got hit like that a few times. One was on a Sunday had all these ideas of grandeur of everything I was going to do that day. Couldn't even keep my eyes open. Basically slept all day and all night. When I talked to Dr. she said that was normal. And I was lucky it wasn't worse. Hang in there.

 Curyq, so glad to hear it went better. But that is not acceptable don't ask to talk to someone Demand it.

Sunshine, Woohoo on the last leg. Did they do a sim for your boosts? They are going to do a setup tomorrow after my regular treatment. My RO is going to be there. Next Wednesday is first of boosts, it's suppose to be 113 that day.

Congrats to all that are done!!!!!

Crazywabbit

talked to RO today, my boost will be with the same photon linear accelerator I am using now. just concentrated on surgery bed. will not involve axilla but will be concentrated on the nipple area and just below, which is already getting tender. Sim will be the same day as a treatment so I am still on course to finish on the 16th. 

Fatigue not as bad as yesterday, yet.

Sunshineinky

Barbara... I understand the nipple.  All the color came off my areola! I've been assured it'll grow back.  

They took extra pics today and I'm all set to go for my boost starting tomorrow!

Crazywabbit

Sunshineink, starting boost, great,  means the end is very near.  

count_it_all_joy

Checkin in.     I started my boosts on Wednesday - 10 total, only 8 more to go.  They said it will not be any greater dose than I've been getting, it just won't be to the whole area.  Thrilled with that - for some reason, I thought they increased the intensity for the boosts.  So far, I've been pretty pink and a little tender/warm to the touch for the last couple weeks, but no serious discomfort.  I keep hearing that can change in a flash the last week, so I feel like i'm just waiting.  tick, tock, tick, tock…   I'm feeling the fatigue, too, but also sleeping really poorly, so it's kind of hard to know which is actually making me feel so tired! 

I'm having a lot of pain in my hands at night, and nearly 3 months out from chemo.   Saw my family doctor, and he had blood drawn to check for arthritis.  Also put me down for a thyroid panel, liver numbers, check my bit d, and I can't remember what all.   6 vials of blood, anyway.  After having labs every week for months, I'm curious what my numbers look like now.  Probably a wreck over all!  

How are you post-chemo ladies holding up these days?  Are you still struggling with anything, or does it feel like your body has rebounded?

Rosiesride

hey count it all joy...I am only 4 weeks out from last chemo...super heavy legs..thighs especially...tingly numb feeling in feet and hands... I am hoping it gets better!!  

I am only in my 5th/36 rads...also going to pt 2x per week during rads...trying to walk in community pool for 20 minutes 3x per week....slow moving though!!  I should finish rads august 12...then hope to feel strong enough to go back to teaching kindergarten!  Kids start august 25th ish...hope I have the energy for the first few months of k which is draining anywayWITHOUT  treatments!! Rosie

Amelia123

I am 10 weeks out from chemo.  I feel like I've recovered from that.  When it was over, I was more exhausted than during the actual chemo.  That lasted about 2-3 weeks.  One of the worst things was that my brows and lashes fell out AFTER chemo was over.  That was a slap in the face, as I thought maybe I snuck through without that happening.  Guess the joke was on me!

Since then I've had my exchange and feel pretty recovered from that.  Much better than TEs!  Today I go for my rad sim.  Getting a bit nervous after reading these boards.  In my head, at the beginning of all this, it seemed like rads would be the easy part of the entire treatment but now I'm not so sure.  My appointment is at 10, so I'm off!

Rosie, good luck with your rads.  I hope you are full of energy for those Kindergartners and that it all goes smoothly.