April 2010 Rads Group

I am not even sure I can write this down.  I went for my 9th treatment yesterday.  I have been in pain since day 1.  I was in serious pain all weekend.  I thought it would lessen by Monday.  It did not. I was quite upset when I got to the center which is very close.  I am single and live alone.  All they tell me is that radiation doesn't cause pain.  I was crying and ask for pain medication and referral to there pain center.  My docter had not told me she was going on 2 weeks vacation which made me  more upset.  I saw the other rad onc. and  he said he was completely stopping my radiation and I could make an appt. for 2 weeks for a check up to make sure all side effects had stopped.  I asked him if he realized that I would be facing a 35% return of my cancer and he just said that the rads was causing me pain and walked out of the room.  Does anyone know what to say?

Wow.  Can you insist on speaking to the head of the Dep't?

I'm on day 5.  I thought I'd meet with my rad onc, but she was out and I also got a stand-in.  I've been feeling weird since day 1 also, which keeps getting worse every day.  I'm not where you are pain-wise, but I'm very frightened I might be soon.

Mostly I feel swollen and weird, like if this keeps up I might explode - and the nipple is sore, the whole breast is tender, the scars hurt if touched, occasional shooting pains, etc.

So I discussed all of this with the Dr., who basically said that once you start you have to force yourself through it because the alternative is mastectomy.   I also asked her about taking various vitamins and supplements and using various skin creams, and most important here, whether I could take Aleve or Tylenol or some such.  She was fine with that.

Do you want to/do you think you can force yourself through more rads?  If so, I'd recommend being a pushy bitch and forcing your way up the supervisory chain so you get pain meds and can continue.  Call patient relations, call the head of the department, go back there and refuse to leave until you speak to someone with more authority - do whatever it takes.   I often think we're really on our own with this stuff, and sometimes we have to fight to get what we need.

At least find out if they plan on resuming treatment after 2 weeks, and what effect stopping will have.  And make sure they're giving you the right treatment, not the treatment designed for someone else....that's all I can think of right now.

I'm soooooo sorry this is going on.

Edited to add:

Or what Redsox said.  She's probably more reasonable and less of an emotional wreck than I am at the moment. 

Thanks, Binney, for the hug and words of encouragement.  I saw the PT this morning and she measured and wrapped the arm, and said it's still mild at this point.  It was a relief to get up this morning and find that it hadn't gotten noticeably worse overnight.

I'm trying to remind myself that if it's not curable, at least it's manageable - and not life-threatening. I'm seeing the lymphedema specialist Thursday.

One thing that impressed me was how this was handled by my rad onc and the technicians - I had been scheduled to see the doctor after the Tx, but the techs got me in to see her right away, and she was incredibly kind and saw that I was going to need some time to process this, so my schedule has been pushed back a week.  No one displayed even a hint of impatience about the disruption in the schedule, so I think I made a good decision when I selected my rad onc.

Off to have a cup of tea and take some deep abdominal breaths! 

Hi...

I'd like to join in.  I start rads Thursday.  I finished chemo in February and then had node removal surgery in March.  I went yesterday to get mapped out...no tattoos at my place either, just lots of sharpie marks. 

I'll be looking forward to getting through with all of this! 

I

Willheal - I seem to be having x rays about every 4th treatment.  My tech is the same every day and he has a photo of me up on the screen when I walk in.  We are the only ones in the office at that time as I go at 7 am.  

So sorry about your long distance caretaking.  I had both parents in hospice here near me and cared for them until just a few months ago.  That is a really hard road to hoe.  You just never seem to get a break.  I was CONSTANTLY dealing with new caretakers, nurses, services, meds, etc.  I adored my parents and did it with love and more love, but it was really hard on me and my family.  I send you all good hugs and lots of strength.  I wish I could send you a few more hours in the day that had energy in them... 

Katie 

Apparently I get x rays every 7 days, started last Weds and had the first x ray today (Weds).  Or after every 5th treatment, if you look at it that way.

I don't always have the same techs, in fact sometimes the tech that gets me on the table isn't the same one that gets me off of it.  It does concern me.

I was badgering them with 'who am I' and all that at the beginning, but I stopped.  I guess I was afraid to be too much of a pain in the ass and piss them off.  I may have to resume badgering them, because, really, the rotating staff thing is freaking me out.

There are three treatment rooms, though it seems as if only two of them are equipped for the type of rads I'm having.  And it's definitely a converyor belt, everyone's nice enough - but there have been some scheduling f-ups and other issues.  For instance, my app't is at 8:30 am.  I was not called this morning until 9am, and then there was a big backlog in the changing area.  I didn't get finished until 9:30.

Supposedly the head of something or other left as of Friday, and (I guess intentionally) scheduled large numbers of people for 8am, so things are all f'd up.

At least the robes are nice.

I'm also dealing with elderly parent caregiving, Mom's created a tornado of problems for me to deal with.  I am completely overwhelmed.

Today in rads I listened to Los Pacaminos - an English Tex-Mex band.

Yesterday was The O'Jays Greatest Hits.

Truthfully, I don't know what's happening during the time I'm being treated.  They line me up. then they do something from the left, then put in a wedge and do something; rotate the beam, do something from the right, then put in a wedge and do something; then put in the boost contraption and do something.  I don't even know what kind of equipment I'm being treated on.  I do know they know it's me, beause we recognize each other, and because there's a computer screen in the room with the equipment that has my name on it.  I'm always in the same room and on the same equipment.  No robes. 

Hello, everyone.

I had my first treatment today.  Although I've only been to the center for a few appointments, my experience there has been good.  My heart breaks for those that are having a difficult time.

On the subject of lotions, the center gave me Xclair cream.  Since I just started I can't judge its effectiveness yet, but it has no scent.

For some reason, my boob hasn't been as weird today as it has been in the past.  Maybe I'm adjusting to this?  Hope so.  Time will tell.

It's just so weird to go day after day and have absolutely no idea what's going to happen to you, but having the sense it's not gonna be good.  At least I have this sense of dread and impending doom/pain/swelling/shrinkage/redness/itchyiness/blistering/pain/oozing..who knows what!

Anyway, when I spoke with the rad onc yesterday, I asked about lotions - because I hate the smell of the Calendula lotion they gave me but was afraid to use my Aveeno stuff because it contained alcohol and I didn't know if it would be "approved."  She basically said to go ahead and use whatever worked for me, that there were no real rules about which lotion to use.

I think maybe I'll use the Calendula on treatment days and the Aveeno on the weekends.  See how that goes. 

I have finally joined you

My planning and simulation was on tuesday but they were unable to do the first radiation as the planning was too complicated.

So the first session was yesterday (Wednesday) and second this evening.   So far it is okay, but uncomfortable on the arm affected by surgery, which still does not have a good range of motion, despite lots of physio.

 I am still exhausted from final chemo (just over 2 weeks ago) so not sure if thre are any radiation side effects yet!

Hello ladies!

Today will be my 3rd zap, it should be my fourth but the machine broke on day 2 .  As far as skin care I am using Lily of the desert aloe vera gelly 3 to 4 times a day. Once in the am if I get up before my 4hr window, again immediately after treatment, dinner and bedtime.  I also plan on using Bag Balm once or twice on Friday or Saturday.

I am also fair skinned (too much Polish), and I felt the effects on the second day. My breast was warm and slightly red.

I was also told to avoid hot showers ((CRY)), use unscented Dove soap, wash the area with my hands not with a washcloth and to avoid deoderants with aluminum.

I have also experienced some soreness but I honestly think because I am only on my 3rd zap it is from stretching the chest muscle.

I don't have lymphoma but I thought that this video http://video.about.com/lymphoma/IMRT.htm  gave a decent explanation of my rad. procedure.

Good Luck to everyone- I hope you had a great day

Just got back from my 2nd tx.....and it went much quicker.  I was told they were backed up yesterday and taking xrays took longer.  I waited about 15 minutes before I got paged, went into dressing room to change into gown and when I arrived at the treatment room, I was called in almost immediatley.  It took no time at all to get me positioned and zapped.  I counted in 1000's while being zapped and it lasted about 12 seconds on one side and 10 on the other...still seems long.  I was given a sheet on Radiaition Treatment Do's & Don'ts.  Here are a few:

Do not scrub or use soap on treated area...Pat Dry.  Hmmm.. not sure about this, I feel I need to use some type of cleanser on my armpit.

Avoid creams, lotions, powders, except for 100% aloe vera gel Fruit of the Earth. 

Do not shave underarms or use deodorant except for Tom's of Maine.

May continue to take a daily vitamin, but no large doses of Vitamin A, C, E.

Do not apply any heat to the treated area...Jacuzzi, heating pads/blankets. 

My breast itched today.  Bah.

And I was barely awake and forgot to bring a CD, so I Iistened to the Jaco Pastorius they had in their collection.  RIP, Jaco.

Ended up in a conversation with a lung cancer patient who was lecturing me about healthy eating and supplements and positive self-talk and all that.  She had been a long time smoker and is still continuing to smoke.  At least one of her parents died from lung cancer fairly recently (can't remember which parent it was).  I told her I'd be much more interested in her advice after she quit.

Finally started this past Monday. I had not healed enough from my surgery to begin. Now I am petrified that things are going to open up and they will need to stop and I will need a mastectomy!!! New path report says there is a tiny bit of cancer there, but they are saying I don't need a mastectomy, just continue with rads. Does this make sense to anyone? I am sooo confused. Also, they are saying the margins are clear. How can the margins be clear if there is still a bit of tumor left?!! Anyone...HELP!