Fall 2013 Rads

FierceBluebird · November 2013

I am in extreme pain. Walking into that room and lying down on that table is like knowing a hot iron is about to leave scorch marks. It gets harder every day.

I haven't used cornstarch since skin opened up. Earlier in treatment it helped to keep material from sticking to skin.

wyo · November 2013

oh Bluebird- I am so sorry sorry to hear you are in extreme pain- that picture does speak louder than words. Does you RO meet with you weekly and check you over?

I know sometimes the thought is to "tough it out" but that would include adequate pain control and assessment of the risks/benefits of continuing treatment-

Please keep us informed and know that you are your own advocate and best judge of what is right for you

Bounce · November 2013

Hugs to all the ladies having a tough time.

I can't believe how little the docs seem to be involved in protecting skin or giving advice.

How is a person supposed to continue their daily activities? Everything must cause pain!

Hang in there ladies.

Love

PRB1956 · November 2013

Hi there...I had a lumpectomy 4 weeks ago and am trying to decide if I want to continue down this path with radiation or just do a mastectomy. I am very fearful of radiation, but I am also afraid that some cells could get left behind with a mastectomy.

Has anyone here been part of the 15 treatment protocol? If so, did you tolerate it well? Also, my simulation isn't until Nov. 25th. I'm not sure how long it takes to get things going after the simulation, but if it's 2 weeks after that...it will be 7 weeks since my surgery. Has anyone asked what the optimal time to do radiation after surgery is?

Lastly, Bluebird that looks so painful! I hope they give you a break from treatment!

wyo · November 2013

Hi PRB

I have a diagnosis similar to yours and also had lumpectomy and am doing radiation as we speak.

16 total treatments (15+1) and I have completed 8 so far. I am tolerating it very well in my opinion. Some soreness in the nipple area but skin is intact- some itchiness and redness at time.

Things move pretty quickly after the simulation- once you have your tattoos and CT scan they schedule the dry run then start the actual treatment the next day after dry run. That was my scenario- I had to wait a few days between SIM and dry run but they would have done it the following day- it was my schedule issue.

Hope this helps

denilynne · November 2013

Good morning all of you brave ladies,

Bluebird, there seems to be a serious lack of compassion. I know that whoever set up that rad room, didn't place the faces & mummies there with any malice, just lack of thought about the frightened and anxious patients who would have to look at those items while they are getting zapped!

PRB1956, the time in between my lumpectomy and radiation was 8 weeks. I believe the optimum time is 6 weeks.

I wish everyone and stress free and upbeat week!

Gracers55 · November 2013

Bluebird,

Not too graphic. The picture is worse that you describe so I'm glad you sent on. I feel badly that you have to suffer so much. I hope this week goes better and the boosts don't cause too much more damage. I agree, you should not have to look at that stuff. It's hard enough. Why not say something now?

Love to you all, Gracers

summergal · November 2013

Bluebird - I'm so sorry that you are going through such hell. I hope today is better. Good God, you, more than anyone, deserve a break. Keeping you in thoughts. Warm and very gentle hugs.

denilynne · November 2013

I second that summergal. Seems like everytime Bluebird turns around it's sonmething else.

MsPharoah · November 2013

Bluebird, remember the name of your machine???

"The machine in my treatment room is called a Mthr F@#$#!!!) "

What a beyotch he is!! I hope you gave it the finger today!

Love and hugs, MsP

denilynne · November 2013

Haha! What do you know! My machine has the same name! I hate that S. O. B.

:O

honeybair · November 2013

bluebird, don't know how you mange to take this torment. Glad you posted that photo. I am so sorry that you are having to endure this. Will your treatments end soon?

Sandymomto3 · November 2013

bluebird...I do not know how you have managed this far. You bring a new meaning to cancer survivor. Prayers for a better day.

70charger · November 2013

Blurbird. Thank you so much for the picture. It gives me great insight as to what I have to look forward to. Please heal soon so you can put this hell behind you. Soft hugs P.S. You give me much hope as I see you have beautiful hair. Love the highlights.

swellrider · November 2013

I am so sorry to hear of all the various problems. We seem to do things quite differently here in Canada. My clinic is an hour and half drive from my house but has 8 different machines for radiation. Appointments are only 15 minutes - they are extremely efficient and getting your comfortable, set up and then out of there. We seem to complete our treatments in half the time. I am having 16 whole breast treatments plus 4 boosts. I have had 10 so far. We are not allowed to use any oils or aquafor but only water based moisturizer - aveena is often recommended. My breast is red and a little itchy but not burning. I was anticipating much more damage. Today I received instruction on how to apply saline compresses to make the skin feel better but I don't really need it yet. I am impressed so far in how everything is progressing. I hope that some of the new rad ladies will have the good success I have had so far.

FierceBluebird · November 2013

Thank you everyone for all the kind words. I do think treatments can be different and each person's body handles radiation stress differently. Some people sail through with no problems and others like me are slowly cooked into red lobsters.

MsP, I have had numerous problems with all phases of my treatment. This must be from choosing a happy harmless log-in name like Bluebird. I'm immediately changing my profile name to Beyotch! ha..ha..

No radiation vacation break for me. RO today told me I might as well keep going and be done. Even with open bleeding. But he promised to keep me well fed with pain pills so I'm holding him to it. I just have to get to my appointment and home again before I can medicate. Told family today that I won't be able to do Thanksgiving this year and plan to stay home and chill. I'll send hubby and kids to his family's house. Too much moving and travel for me at this point.

Trying to find burn gel sheets and no one in this area seems to have them.

Four days to go!

MsPharoah · November 2013

Bluebird, so very proud of you for giving your machine the middle finger today. You are so very radiant!

Keep shining, sweet songbird!

hobbesla4 · November 2013

Bluebird: Hoping for the best for you this week. Positive thoughts that the pain will diminish and that you won't need the pain pills too much longer.

Summergal: Hope your treatments are going better so far this week.

I begin radiation tomorrow. Still sore from my re-excision. Hoping to have a positive experience with things. Praying for us all to have an uneventful week. My regards to all of you.

wyo · November 2013

Bluebird- I agree- you don't have to do the thanksgiving shuffle this year- let yourself relax and heal from this ordeal in some peace and quiet.

My Machine is named Primus- I really don't hate it I actually like it and here is why- its zapping me and if I didn't know the cancer was there the first time I could not fight it. Now I know its here and I say- well bring it on and get any stray cells hanging around and zap-em all!

ItIsWhatItIs2013 · November 2013

Bluebird

I teared up when I saw your pic.... im soooooo sorry that it has gine so badly for you! This may nit helo you much right now, but when you are done, it heals soo fast! Be careful to keep from infection! I dont know how to make things better rightnow other than know you WIL get better!.,, and it heals faster than you think....

My thoughts are with you

Lorrie

McKatherine · November 2013

bluebird - gentle hugs to you. I promise that once you're 4-5 days out from your last zap, your skin will AMAZE you with how fast it heals. My original field even started healing while I was still getting the boosts. I'm exactly two weeks post last zap, and other than a little painless peeling (with wonderful, healthy skin underneath) you can't even tell that my foob was splotchy bright red a few weeks ago.

Happy radiant vibes to you all!

honeybair · November 2013

When I went in for treatment yesterday, one of the techs came out and informed us that there was no power to the machine but to hang around awhile as they were hoping to get it running again. After a 30 minute wait, we were sent home, but I did enjoy visiting with some of the patients who have sessions near the time of mine. I am disappointed because Tues was to be my graduation day. Oh well, things happen. I think the corporation that owns this center needs a new machine. They keep having problems with it. It also has me wondering, who inspects these machines to make certain they are working properly? I have seen signs on mammography machines but none on these radiation machines.

summergal · November 2013

Hi, all. Many, many thanks to all of you who have encouraged me over the past week regarding my gated breathing set-up and initial treatments. I do want to say to anyone whose RO may be recommending gated breathing, that I think my experience was not the norm. I truly think it has been the result of a team that is mostly brand new to this method...neither they, nor I, understood that we needed to experiment with a number of different levels of breath hold in my initial CT sim. They really knew very little about me and I didn't know at all how to proceed, so I got "heroic" and took in too much of a breath to sustain during treatment. I do think someone could have pulled the plug earlier last week and admitted we needed to go back to the drawing board...instead of putting me through four days of disaster...but we have all learned (which is the point of doing anything new for the first time).

So...I went in again yesterday for one more CT sim at the new level of breath hold (this is after having been pulled out of the CT machine on Friday because my physical system was just completely out of control). I was VERY nervous and until the moment I got there, was thinking, "I'm just going to tell them I'm doing regular rads." But I asked to speak with the physicist and one of the head techs before even getting undressed. They were very kind and understanding and reassured me about how much time I would be in the CT machine, how long I'd have to hold my breath, etc. I agreed to proceed with it, and with their very encouraging attention, the CT sim went very well...(aka, I didn't throw up!)...I even held my breath for 45 seconds at one point. I am normally a mentally strong person. But the past week had physically and emotionally weakened me so much, that I was afraid to even go back to the hospital and do another CT sim. But afterwards, my relief was instant and immense. I knew I didn't want to quit...but I felt very vulnerable.

So I am proceeding with gated breathing at my new breath hold level, which I find much easier to do, and will still result in benefits to me...and hopefully others who will be offered this treatment in the future at our cancer center. My new concern is how much radiation I will be exposed to with the daily x-rays, as the physicist told me that they will take pictures every day that I do radiation. Anyone have any info on that? Sending loving vibes to everyone.

kirklandgal · November 2013

summergal - I get 2 xrays every day with my gated breathing - one before the do my breast field and one before they do my supraclavicular field. They subtract the amount of radiation in those xrays from my total dose - so it is counted. So, you don't have to worry about getting any extra radiation due to the xrays!

I'm sooooo glad your center worked with you to figure out a better way to do your breath holds! It's terrible what you had to go through to get here but hopefully the rest will seem easy comparatively! Hang in there!

Bluebird - I'm so sorry you're having such a hard time! The picture definitely tells the story better than any words can. You're amazingly strong!

FierceBluebird · November 2013

Summergal, hang in there! Gated breathing for lefties is the newer technique. Too bad we had to be guinea pigs. But in the long run hopefully it will pay off for us and others who learn from it.

Thanks Stacie!

Three days and counting! Shifting my focus from healing my skin to just getting through the next days. Bring on the lidocaine and drugs!

summergal · November 2013

Thank you, Kirklandgal and Bluebird! Feeling so much better about it today. That's so good to hear that they adjust the radiation to compensate for what we get in the daily x-rays. One less thing to worry about! Bluebird - sending good vibes for everything. Almost over...almost over...almost over....

kirklandgal · November 2013

I have been feeling lightheaded and short of breath for the last few days. I was at my MO yesterday and she said it's probably radiation pneumonitis then we went on to discuss other things. I will be seeing my RO tomorrow and will ask him about it - I feel like I'm about to pass out. Is anyone else having trouble breathing?

FierceBluebird · November 2013

Stacie if you feel like you are going to pass out, have someone take you to DR or call911

I was told radiation can cause shortness of breath or a dry persistent cough, but you should not feel like passing out or you are not getting enough oxygen. You'd think your MO would have said something if he was concerned, but if you are feeling worse get checked. Hugs!

Jo6202 · November 2013

Bluebird, you are so brave to post your picture so we know what you are talking about. I am so sad for all you have been through. Surely they must be concerned about infection and would want your skin to heal. Gentle hugs and prayers for you. :-(

wyo · November 2013

honeybair- if you are concerned about the inspections/preventative maintenance on your machine you should be able to ask them to show it to you When they are inspected by their accrediting agency they go over all the maintenance and service records with a very fine-toothed comb- that said these machines are tempramental and do have down-time like MRI and CT scanners- the more hours on them the more service time they tend to have.

summergal- glad you found your balance with the gated breathing technique and all is going better.

kirklandgal- its funny you mentioned this- I have had a few times when I am walking or doing yoga where all of a sudden my breathing feels like its having resistance- I thought my bra was too tight but its the same one I have been wearing since surgery..... anyway it does seem to resolve and only lasts less than 5 minutes or so. I am going to pay more attention to this now.

Fall 2013 Rads

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