Spring 2014 Rads

Debzjourney14

I am supposed to start rads wed.(tatoos and run through tue) tonight i noticed a small infection at my incision sight.  Will they put off my rads until it heals?  They said i was healed so well, then today I noticed a little red area and when I put something on it it ooozed a little white stuff.  

flagirl

Fightbc I had a couple of really good days then I'm down.  My fatigue comes and goes in waves.  Tonight I can't sleep I'm in pain, muscle bone aches.  Took a Tylenol waiting for it to kick in.  I am hoping this passes soon getting tired of being tired.  Maybe I should talk to the dr and see if he will run blood work now rather than wait for three months.  I started taking my vitamins again, especially immunity and lung respiration since I have the pneumonitis.  It seems to be helping my lungs recover, coughing has subsided a lot.  Hugs to all. I guess this what the dr meant when he said that radiation is much worse than chemo and it takes time to recover.

simplelife4real

Hi All, 

I finished rads 4 days ago.  28 full-field and 5 boosts.  I felt fatigued during the boosts and for a couple days after rads finished.  Yesterday, things were noticably better in terms of fatigue.  My skin is peeling at my collar bone (which was my only hotspot), otherwise things are just a little pink and dry feeling.  I've been using Miaderm and Emu oil a couple times a day just to help moisturize the skin.  I've had occasional stabbing pains in the boost area under my nipple.  Nothing major, just enough to remind me that I've been zapped!

Radiation seemed to really irritate the nerve damage  from my ALND.  Now that rads are over, I'm happy to say the nerves are calming down and my arm feels much better.

For everyone that has had an ALND and rads to the area, please remember to build up strength and activity in the affected arm slowly to avoid LE.  We are at much higher risk of getting it.

Redheaded1

Debsjourney---be sure to ask to have yourRO look at it before they zap you with the rads. Best to have the doc aware of it.  Is your surgeon giving you anything to treat it?

Debzjourney14

My MO nurse called and they want to see me Wed, (even if RO prescribes antibiotic, tomorrow) I cant get in til then and they wont prescribe it over the phone.   If I run fever or it gets worse, I am supposed to go to ER.  I am hoping my rads wont be postponed, but I know they may have to. :-(  thanks for your comments.  I never expected this after 6 weeks!

have2laugh

Light at the end of the tunnel getting brighter!! 5 more boosts after today and although skin very sore in two spots, I see the rest of skin calming a bit. Glad I cut back one day at work this week-made it to the park with my little girl this afternoon. First time in almost a month I felt up to it! My advice to ladies at start or midway, if I had to do again I would not have pushed myself so hard to go back to work so soon and keep up with fulltime work schedule. If possible- reserve your energy for family and friends and cut back as needed at work. If you need a day or here or there, take it. It can be hard to stay ahead of fatigue if you try to do too much.

lyzzysmom

i am seeing my RO  on thursday for the first time and my MO for the first time next week. I took a week off after my lumpectomy, actually only 4 working days and the company dealing with that they said it would be short term disability. They are awful to deal with.. Now I have received a form for FLMA. I am going to take it to the RO on Thursday although I do not expect the daily rads to start for a month and have no idea how well I am going to be feeling during that time.My job is stressful. Also I do not know what will happen when I see the MO so I was thinking of doing another copy for him to complete too, although I think they will just be occasional visits and hormones.  I was wondering if anybody has any experience of having multiple providers for their different treatments and if they had to do multiple forms or if they just got their primary care physician to pull it all together.  The paperwork is the only thing that has really made me cry so far.I am tired and I find it much harder to deal with than the diagnosis and surgery. My primary care sent a return to work letter after the surgery and I keep faxing my pathology reports to the company that administers claims and then receiving letters that they do not have the necessary documentation. I am hoping a fax from my surgeons office will shut them up on the short term disability. I can live without pay for a few days but just hoping they don't do anything that could mess up my insurance coverage. My last fax cover note ended with "PARTIAL MASTECTOMY. THAT SHOULD BE EASY TO UNDERSTAND"  A certain manager told me these people were known for being brutal. Now I am ranting.... 

I actually feel quite calm in comparison about the rads but even lorazepam is not helping with the beaurocracy.Yikes!

have2laugh

lyzzy'smom-

Paperwork is a pain in the butt! I literally have spent days on phone with my insurance company. I did have 2 FMLA forms one from surgeon and one from radiation oncologist. RO did not complete until first visit at start of rads but they are very familiar with this forms. Ask for intermittent FMLA during radiation in case you need to miss a day here or there. They will be happy to do this for you-just bring forms with you and they will fax. In terms of short term disability-STD-I had to use two weeks of paid time off until short term disability kicked in. But I did inquire at my work that I could still access extended illness bank at work for any FMLA time needed during treatment, which includes intermittent FMLA. They consider all related to one illness or incident. This helps because you rarely can access these banks rather than using regular vacation/sick time. So even though two separate forms only one incident-for me important for reason I just stated and also if I had to take anytime during year for any other follow up treatment- I wouldn't be required to use two weeks time again before STD kicks in. My boss did not know this I called HR myself so if you think you may not be getting the correct info go up the ladder. Good luck!

lyzzysmom

Thank you so much! I think I will fax one to the surgeons office tomorrow although I do not have to see her again until next year (hopefully) but I think they will be happy to fill anything in for the days I took off and I will also take one to the RO as I expect it will be a few hours a day including the travel and I will have to see what he says about the odd hours we can be called that plays havoc with our sleep. Half our team is already burned out and had to cover me for a week.  We got bought by a large corporation a couple of years back and a lot of things like helping us with things that go bump in the night and dealing with benefits got out sourced. We used to have an HR dept in the same building but no longer... 

Dogsneverlie

WOW - missed you girls!  With bringing Bentley home and caring for him I have been OUT OF TOUCH.  AND, my last treatment was on MONDAY MAY 12 so you can see how far behind I am!

Hope you are all doing well with your treatments.  I found that what really helped me was how often I used the lotion and I stuck with the Eucerin through the entire treatment.  Fatigue kicked in - that is very interesting and just starting to feel better.

Our little Bentley is much better so I am feeling especially blessed. 

I meet with the "pill doctor" on May 29 at 8:00am...........guess it's time for me to visit the "after treatment" section of this wonderful site.

Redheaded1

Well ladies, today is my last Rads----After the shitty weekend and the meltdown I had over the burn on Friday, my wonderful RO spend an hour with me and my pseudo mom next door (80 yr oldretired nurse) talking me off the ledge.  I really wanted to either quit or do a treatment yesterday and then take a break till Thursday , but no---my RO said that would be wasting both treatments---and we were not going to do that.  She said I could skip yesterday and do Tue/Wed if I wanted. She promised me I would be amazed at how fast my skin would recover once no rads being taken.  So, I took my treatment yesterday---and after being an hour late, the machine stopped and I had to wait another hour while it got back up.  But I got to visit with two other gals and we compared burns and I felt better after seeing Tami's brown spots, and she felt better after seeing my deep red all over and the other gal told me she had actually had blisters.   Monday's Burn is a little bit worse than Fridays--and now todays will be on top of it.  My underarm area is starting to feel like the under boob area, where skin rubs skin and I don't know how I will cushion that area- any suggestions?

 I did figure out a neat trick for the under boob stuff.  

 Take a roller gauze, and start winding it around your index finger (not so tight that you can't get your finger out, then gradually pull out the finger and keep winding towards end until you get a roll that is long enough to make a comma shape long to cover area.  Cut it off and tuck it under there---- If you have wet desquamation, when you remove it, just unroll it until you have clean gauze and cut off and dispose the soiled piece.   

I tuck this under my breast, put on my t-shirt, then my bra on top of the tee shirt. 

Redheaded1

Dogsneverlie-Bentley looks so happy to be home...such a loved old puppy..... I see my MO for the pills on 27th at 8:30!

Debsjourney--Good luck--surprised if they don't say the surgeon needs to treat it.  Usually they want to start your rads by 6 weeks post op. (if you heal in 3 wks, they sometimes start then).  You will be fine----they see this stuff daily and they know how to take care of this.  You will be amazed at how easy the rads are--you just lay back and think good thoughts while the machine does its thing.  Just take good care of your skin every day.  I've whined a lot since Friday, but I got down to the last 3 before I really had a issue, besides the under boob stuff. But that's what I get for having the big girls......HA.

mz_mes

Congratulations to all of you who have finished.

Happy to see everyone moving on and anticipating whatever comes next.

I'm on my boosts now and so ready to be done.   Redness all over treatment area but not too bad and tightness under my arm.  RO told me to stretch and work out.  Key is to keep moving.  

Sunshineinky

Hi ladies my first radiation treatment starts today!! The only thing I've been told to use is 100% aloe fruit of the earth.  I'm concerned because I've used it a few times and it doesn't seem to moisturize. Do any of you have suggestions? My breast are large and droopy lol so I'm really concerned about that and my nipple area! The techs I've met have assured me I'll be fine but I'm a worrier by nature.  Oh and did I mention I have to start my tamoxifen today??!?

Redheaded1

Sunshine--you got this---as you can tell, RO's are all across the board as to what they tell us we can use.  Abide by your doctors decision but don't be shy about speaking up and letting them know what your concerns are---saves  a ;pt of wasted energy worrying.

Just ask your nurse if there is a more moisturizing crème that is acceptable and see what they tell you.  Many of the ladies here used only Aloe and had good results---  I wasn't told to try aloe until the end and then ony to relivieve burning feeling in my skin.  and my RO only wanted us to use Aquaphor, Eucerin, Cetaphil, Calendula, Miaderm, Castor Oil Paks (nurse would give instructions to use, if you chose this)  or prescription s of Biofine or X-clair.  I chose the X-clair, which was an expensive route (2 tubes 64.00) and they were small tubes.  I am on tubes 9-10 now and only doing 28 treatments.  Well pleased with the product, didn't have any burn that lasted 24 hours until my 26 treatment.    but it does stain your clothing, and stains won't come out of my target wife beater t-shirts and my Walmart sports bras--will toss them all once I am back to good ol me.

lonnie713

miaderm is awesome.  One tube has lasted me since the start of rads and I only have 4 more treatments left.  I use it two - three times per day.  I ordered three tubes thinking one wasn't enough.  Not sticky and doesn't damage clothing.  Order it online.

Sunshineinky

Thanks for your suggestions!! I'll have to check out the miaderm.  I'd actually called our local pharmacies to see if the had it but no luck!

lonnie713

sunshineinky....I have an unopened 4oz tube of miaderm.  It's yours if you want it.  I will gladly mail it to you.  I only used two of the three that I purchased.  I keep one in my purse and use it right after rads before leaving the treatment center and the other in my bathroom to use at home.  Feel free to send me private message.  That goes for anyone who wants it.

lonnie713

unopened still in plastic wrapping.  

VintageGal1111

Hi Dogneverlie

Oh that's right! We are/were both doing rads in Dover. I had #23 today. I am beyond red, I am burgundy. My chest looks horrendous but the RO said it is *appropriate*. Of course when my MO & the onco nurses saw it when I went in for my Herceptin they all said I need rx cream. 

I was hoping the aloe would help. The Aquaphor & Eucerin contain a petroleum product which I had a bad reaction to. (painful rash)

Beautiful doggie!

VintageGal1111

Sunshine

 I got Miaderm on Amazon $36. You can buy it from the site also. I am using it sparingly after my allergic reaction to the Eucerin & Aquaphor, just slathering the aloe on. And I am burned crisp.

Sunshineinky

Thank you all.  My 1st treatment went okay.  I must say I was really freaked out by the machine hovering over me. I'm scared of the burn anyhow and my techs didn't help when they said of yes, your breast are large expect to get raw.

 I also just swallowed my first tamoxifen.  I'm surprised I've not had a panic attack yet!!! 1 down 32 to go!

VintageGal1111

Be warned this ain't pretty!!!!  My chest this week rad #22 (dark red) I had bolus yesterday so it is worse today. RO says it is appropriate, yes red but no sores or wounds so no rx cream needed. Some how I have to get through this week & next....

Sunshineinky

Wow vintage thanks for the heads up about what may be coming.  Is it painful? Also what does bolus mean?

lonnie713

Wow vintage, that us bad.    Each persons reaction to rads will be different.  I have been lucky. 

Sunshine when you get the miaderm, make sure you clean all other products that you are using off of your skin first before applying it .  My RO said use only one thing at a time.  This way if you break out, you know what caused it.  Good luck to you.

VintageGal1111

Sunshine

 the bolus is a gel pad used on me every other day. It goes across my left chest & from what I understand it disperses the radiation all across the skin rather than aiming at a certain area.

Sunshineinky

Thanks for the explanation! I had seen it mentioned but I just had no idea what it was.  My understanding is I'm receiving "traditional" radiation.  Whatever the heck that means! 

Anneb1149

Hi everyone

VintageGirl- I look very similar to you but even more red. In fact, the rad tech called me "Barney" yesterday - I am closer to purple. I was getting the bolus every other day, then the RO changed it to once every 3 days. Finished last full treatment yesterday, start 5 boosts today- targeting a much larger area than I thought, from the center of my chest to at least midway under arm and will have bolus every day. Haven't had much pain, but last night ended up taking 3/4 of a Percocet, 1/4 at a time through the night. Only the fact that it will be over in 5 days keeps me from running away to a padded cabin somewhere.

Anne

VintageGal1111

Thanks for replying Anne! I figured I would have a reaction & burn. Just the kind of skin I have. It is good to know I am not alone!!!!! :>)

lonnie713

I too get the bolus every other day.