Winter 2013-2014 Rads

lindacam, Congrats on being finished with your treatments.  I imagine you will not miss the long drive. Very happy for you and hope you will have few SE!

gilbert, Thank you for your input and for the suggestion of the B-12 injections. I have liquid B-12 at home; it worth it to give it a try. Thanks for reading and replying to my post. I will find out more as far as fatigue goes when I return to work on the 6th. Right now it's not too bad, but feel sleepy in the afternoon and pretty wiped out by 7:00 or 8:00 p.m. even when I have slept in. At times during the day my energy is pretty good, though.

Cari, I will have to get the book "After Breast Cancer".  Sounds like a good read after what we've been through.

Happy New Year! -- pray this year of 2014 will be a healthy one for all of us and good things to come.  Stay positive. I know sometime it's hard, but we will get through this. Thank you for this discussion board, TeamKim and everyone.

re: Aquaphor & clothing - I haven't found it to stain anything yet. I've used it before putting on cotton Tshirts & pjs & occasionally bras. Any residue washes right out (& I wash everything in cold water). Of course there isn't a ton of residue to get on the clothes. The nurses at my radiology office warned me that Aquaphor is sticky & messy, but it soaks right into my skin. Heck, I started using it on my elbows, they get so dry in winter

Hello ladies,

I had a lumpectomy on Dec. 17, 2013, which included removal of sentinel node that showed no cancer cells (I was told this immediately following my surgery). Previous to my surgery I knew that I would have RO. After further pathology tests, the following week my surgeon told me there were microscopic cancer cells in this node, and my medical onc would make the decision as to whether or not RO would be my only treatment. My first appt with MO is not until Jan. 16! I feel like I am back to square one with once again not knowing if my cancer has spread! 

I just needed to let you know that I will be starting RO soon, but at the rate this is going, it might not be until February!  What an opportunity to learn patience!  Hope to be a member of your RO group soon, although I never thought I would be saying that. Best wishes to everyone in our sisterhood and God bless!

P.S.   I am told that for now I am Stage 1 pending MO appt. The waiting is nearly excruciating.  

Thanks TeamK!  This was my first post and it's good to know theres another warm body out there who understands. Yeah, I thought I knew the plan, too, but when it changed it took my breath away. I guess it would be wise for me to remember that I  should know the plan, but it is subject to change. I think it's called "rolling with the flow", but its easier said than done!  MY PLAN is to TRY  to focus on all the goodness & blessings in my life, putting one foot in front of the other each day, as usual. With a little help from God & my family, maybe the next two weeks will go fast!  Thank you for caring and sharing! 

onerunneralwasyrunner, my RO recommended calendula cream, which I will be ordering from Amazon. In the meantime I'm using generic brand of Aquaphor the doc gave me  which is very light and not as thick as the one you purchase in the store. 

annika12, welcome! You will find a lot of good information on this thread. Sorry you have to be here with us, but glad to have you. Everyone on here is very supportive and open to share their experiences.

Can anyone/everyone share -if you know it- what the dose of your Radiation will be/is/was? Whole breast dose and number of fractions; boost dose and number fractions?

 I have had contradictory info from three different RO docs and I am sooooo confused and anxious as I try to decide where to go for best chance for no ( hopefully) recurrence and lower risk early/late side effects especially to my arm nerves.

One doc told me he'd advise 5040 in 28 fx to Whole breast with 16 boost in 8 for total 35 fractions for total 6640. Another who read my path reports said he'd go with 5040whole breast and just 1000 boost ( total 6040); at another center, a doc who was well informed about my pathology and reviewed slides said he'd advise 4500 whole breast and 1600 boost for total 6100 dose..... ; a family friend said 4700 and 1400 boost is what her center uses as standard "unless close margins".....

Thanks everyone for your help. This was my first post on the discussion board and I so appreciate the input and knowledge. I posted at 1 in the morning when I couldnt sleep. After hearing from you all, I didnt feel so alone. Then sleep followed . ...zzzzzzzzzzz............

Hobbesla4 - Congratulations! That's awesome. You did it!!!

This fatigue is making me one lazy, grumpy soul...and I'm almost three weeks post infusion!!  Anyway, I'm less than a week from my first "lighting up" and I'm so ready to get this show on the road.

Hole in One:  Bone pain...nasty stuff.  Mine just started about two weeks ago and it's in the hip and knee of my left leg and it just won't quit.  Last night was the first night the pain woke me up from sleep!  I hope mine goes away in another couple of weeks!

Smrivr:  The side effects from Taxol have been crazy for me.  I started with a crusty, bloody dry nose.  Then progressed to pain when I urinated and thought it was a UTI but after two samples tested both came back clean and told it was a side effect of the Taxol.  On top of all that, around week 10 of Taxol, I started breaking out in a rash starting on my hands and forearms.  After going to the dermatologist, he took a skin sample and sent it off to see exactly what it was.  The path report came back positive for chemo related rash.  It has just started going away on my hands but it seems to be taking longer on my arms, back and legs.  About two weeks ago, I started have pain in my left leg (hip and knee) - another wonderful side effect from Taxol.  So...today...the nose issues have started to clear up, the pain when going to the bathroom is still around but not as intense, rash is still visible on my arms, back, chest, and legs but getting better, and the leg pain is quite debilitating.  Oh, and also have neuropathy on the bottom of both feet.  Nice.

I hope you aren't experiencing any of these but if you do...soldier on, you will get through it!  My mantra has been this whole journey has been "It is what it is."  And...I'm alive to testify!

Hobbesla & Barbola, Congrats to you both....if you check back in, lets us know if towards the end of tx, if you had any blistering or skin issues...

BethF7,  My last infusion was 5 weeks ago...the bone pain really eased up on week 4- 5. Your symptoms are exactly what I was experiencing, also had a slight rash, MO asked me several times if it felt like I had a UTI...still battling the fatigue, my Taxol was 4 dose dense. Mo suggested breaking the last tx into thirds, 3 weeks, once a week...I opted for the full dose, was wanting to get on with it...still stressed out over the pain & nightmare of the chemo...Rads are easy, but my fatigue is depressing...it will get better...

I have lots of questions and hope some can be answered here.   I had my simulation over two weeks ago; when I didn't hear from the hospital, I called Thursday morning.  In the afternoon, I received a call to come in the next day for verification and my first treatment.  But I had a surprise waiting for me.  Surgery was Nov 26; Rads started Jan. 3  I was supposed to be done before Feb 5, (more on that later).  My surgeon said I would have three weeks of radiation and they said the same at the simulation.  But when I came there on Friday, they had me scheduled for five weeks (which runs over my deadline).  I was also told I would be getting a slightly higher dose because the normal length is seven weeks.

First question--does anyone know the criteria for choosing length of time for radiation?

Second question--has anyone had two doses in a day?  The tech said to meet my deadline they might have to do that?

I am confused and frustrated over this whole process, especially the waiting as others have mentioned.

hi all

I finished rads the day before thanksgiving so happy to give you the "skinny" on that experience from one person's lens.

I had 16 total treatments which was called the "Canadian" protocol by my RO.  I would go monday-friday and saw the RO once/week and had x-rays once/week.  The nurses asked every day about my skin and provided written info on what products to use/not use etc. 

The treatment itself took less than 5 minutes- takes more time to dress and undress.  By the end of the first week I did not even tie the back of the gown to walk to the machine lol. 

I did not feel anything or have any skin issues during rads- I did develop this very strange itchy rash the last day of rads and it lasted about 3 weeks and I treated it with steroid creme prescribed by my MO. It was annoying kind of like poison ivy is and just on the top of my radiation field and down my sternum on the radiated side- weird.

To me radiation is a head game- I say that because when the machine started whirring I visualized all these radiation beams targeting my surgical area and just zapping the heck out of everything.  Some people really hate the idea of something you can't see or feel but to me I created an image of bright white healing light covering my treatment field and finding and getting rid of any "stray" cells after surgery.  

The techs can be impersonal they treat lots of people for lots of things all day but the good ones reassure you, make eye contact and respect your privacy when exposing your skin etc.  

I did not have fatigue issues to the point it affected my daily activity and my doc said I might feel it more afterward which was true- the first couple weeks after treatment I made really sure to get enough sleep and try not to run all over the place with the holidays.  

I started Tamoxifen 2 weeks after finishing Rads and just finished my period which did seem shorter than usual but not really lighter flow (hope that is not TMI) I am thinking maybe if enough estrogen is blocked I will stop having periods but I was having hot flashed early this fall before diagnosis and have only had a couple since )-: 

Whoever said if you eat "normal" you feel crappy sounds like my experience.  I wanted to have an omelette, hash browns and toast the other morning after my 2 mile walk- oh wow I felt like I was dragging around a cement ball all day- I have cut back on carbs which I love and for some reason eating protein seems to make me feel less sluggish and "perkier".