Post Radiation Recovery

I started rads (25) a week after last Taxol and felt better every day.  Taxol had beem completely and utterly EXHAUSTING but I did exist through it.  I had no skin issues until day 24 when had a very slight pinkiah, day 25 was a slight bit pinker but basically nothing to worry about.  The morning after, I woke up to entire irradiated area 'open'.  The deepest of my burns were up the aide of neck and under arm around to back which were really deep (have 'nice' scars to prove).  Vicodan handled the pain and thamkfully the deepest (under arm and around to back) were in an area where there is nerve damage from mast. so they weren't that bad pain wise.  I never developed any infection even though the area was quite large and was there/open for months.  I'm allergic to Sulfa so Sulfadene/Silvadene was not an option.  I had a huge tub of aloe vera plants and completely destroyed it using it.  What finally got healing was Domeboro soaks.  According to what I was told (or as I understood it),  while you do want to moisturize skin, there comes a point with damaged skin that moisturing can discourage healing.  Drying can be called for.   My burns showed up early March and last scab came off June 29.  There were no signs of any healing until I started Domeboro soaks and almost immediately healing was obvious in the less deep burns but the deeper ones followed.

I did burn VERY bad and in a way I hate to tell about it as there are ao many who are petrified of burning because of the 'horror stories' they've read/heard.  A few - VERY FEW of us - do burn bad but there are many different options to handle it.  It's been over 4 yrs since that time for me and the only thing I can say that I'd do different than I did (had I known at the time), is to have started the Domeboro soaks sooner.  Of course, everything done should always be cleared by your Dr before doing anything.  It was my Dr'sq RN that came up with using the Domeboro soaks but he approved.

In the time since rads (burns healed), I've had NO issues that might be rad associated.  We are each unique!

There are times that I 'argue with myself' as to rather or not I should tell my experiences.  There are so many who are petrified of what can happen with rads and have heard so many horror stories about what can happen.  Yes it does sometimes - but not for most.  I happen to be one that it did happen to. I try, to best of my ability, to present what happened with me as positivel as I can - not as something to fear, but be prepared for IF it happens.  If I had it to do again, I would in a heart beat  - the only thing I'd like to have been able to do differently is to know about and start the Domeboro soaks sooner.

Have you had your Vit D level checked recently?   Many of us are low in Vit D and that can cause a lot of issues (tiredness, fatigue, depression, blahs, etc.).  It is not usually run with routine blood draws unless specificially requested.  I've had to be on mega doses of Vit D for over 20 years to stay in normal range.  Worse in winter when I have to also use my lightbox.  The farther north we live, the more likely to have problems with it.  Just a thought.

I had 4 weeks of rads with boosts in February.  Had some burning under my breast but it was manageable.  Have been in physical therapy for cording by my arm which causes aching and tingling down my arm.  That has improved quite a bit although around my ribs and armpit, it's still achey.  The PT does tissue massage where the hard scar tissue is.  Had a lung CT (long story as to what triggered that), some scarring on my lung, a little fluid around my heart, and have had a cough that started a couple months ago.  Rad onc doesn't believe it's related but it's not a type of cough I usually get - sounds more like a smoker's cough than a deep bronchial cough.   .All in all nothing earth shattering.  The problem is the fatigue...neverending fatigue and it's been 5 months already!  Being an active person, it's driving me batty to have to take so many breaks to sit or lie down and want to do something but can't.  Had my thyroid checked and it actually had drifted high which ironically can cause fatigue.  Endocrinologist lowered my thyroid dose a few weeks ago, but I don't feel any different.  Still crazy tired.  I had to lower my treadmill workouts because sometimes I had to just crash on the floor afterwards and the entire next day I was exhausted.   The physical therapist had me change from 30-40 min.at regular speed three times a week down to 10 min. at a reduced speed five days a week recently.  I didn't know you could still be this wasted 5 months out from treatment.  Usually I'm running around doing things.  It's a struggle to get dressed and go out anywhere.  Wonder if age at treatment makes a difference or if it's the same no matter how old or young you are.    It's more of a frustration than anything else.  I can live with writing my daily schedule in the dust on the furniture. :-)

RaiderGirl - Different Drs will tell us different things.  I was approved by my Chemo Dr and Rads Dr to take my Vit. D, Super B Complex and potassium.  We are unique and they are different.  I have dealt with SAD (Seasonal Affective Disorder) for years and especially during winter (when my TX was), I need D suppliments and my light box to keep it under control and keep D levels close to 'normal'.  I have also taken B Complex for years and it was also approved.  1/2 way through 12 weekly Taxol, my potassium levels plummeted and it was added and still have to take it - apparently an odd, ongoing SE of Taxol for me but not all.  Calcium was also approved as I was already osteopenia.   I was given approval to use fresh garlic in cooking but not dried.  Vit C,  multivitamins and antioxidants were not along with several foods.

We are each unique and there is no "One Size Fits All" when it comes to what is right for us individually.   We need to talk with our Drs to find out what is appropriate for us with any issues we might have other than our BC only.

I am finishing up rads boosts next week...I would like to start on supplements and vitamins to get things back on track...I was also told vit. E,c,a...to stay away from...I need to be told what to take!!  Think it's time to see nutritionist...Rosie

I waited until I'd been on arimidex for several weeks before I took anything more than my vitamin D.  I know this was being overcautious, but what the heck.  I and any little leftover cancer cells had done without the vitamins throughout rads, so why not wait until the anti-hormal stuff had had time to establish their cancer-hostile environment.

I will have  my last radiation treatment on 8/25/2014.  My doctor was concerned I would have a hard time with the radiation because my skin tone is very fair.  While I've had some soreness and itchiness it hasn't, so far, been terrible.  I haven't had any blistering although I am starting to peel in places.  I used Calendula cream (Boiron available through Amazon) from my first treatment and I still use it now as well as Hydrogel.  At one point, in the middle I had a problem with clothes rubbing against my skin and used (with my doctor's approval) cornstarch to reduce the rubbing.  The cornstarch worked really well and did a great job of reducing the chafing.  I did start to have some fatigue at about the 4 weeks mark an had to cancel my Pilates sessions, but I hope to start them up again soon.  I find the fatigue fluctuates.  One day I'll be fine and the next I feel exhausted..it also seems to fluctuate during the day too, but it is far from debilitating.  Overall, I have to say the radiation treatments have been far less painful than I thought they would be.  I know there's a possibility that my skin may still have an adverse reaction post-radiation, but I hoping not!

Update 9/13/2014 - The first two weeks after I finished radiation where not so great.  The skin peeled down to raw skin which bled at any touch.  Oddly, as long as my breast didn't get bumped or brushed I wasn't in pain.  I keep using good wound care procedures, keeping the area clean, putting on wound care lotion and covering the area with a sterile pad (due to the bleeding).  Now 3 weeks post-radiation I'm all healed!