January 2010 Rads Start

ellen57

Good luck to those of you who are just starting or in the process of the rad treatments! Since I am done (two weeks today- YEAH) and missed these discussion boards while going through, I read back through Dec and Jan. and reflected quite a bit. One thing that I noticed  was never mentioned and such a huge relief for my skin was doing a Domeboro Soak. It is purchased at a pharmacy, comes in little packets of powder that you mix with water. I think it was 2 packets to two quarts of water which I kept in a zip locked baggie in the refrigerator. When I was itchy, sore or had blisters I would soak a baby wash cloth or gauze pad in the cold water and lie it over the affected area. Instant relief! I think it also cooled down the 'hot flashes' that have become unbearable... any one else? Any remidies for that? I am concidering acupuncture- that's desperate! Just what I need, to add 2 more Dr. appointments to my week........

sophie305

It's been awhile since my last post...been dealing with these post-tx SEs.  I too have the Domeboro soak the center gave me on my last day, and it's about the only thing that provides any relief these days.  I'm red and blistering on my chest wall which hurts the most, and have several other peeling red spots under my breast that scare me in anticipation of their becoming worse.  The weekend was the worst in SEs I've experienced through this whole journey.  I'm going to call the center this morning to see if there's something else I can be doing to enable healing.  Good thing yesterday was bright and sunny and my bestest friend made me get dressed and go out to a great a capella concert in Oak Park...it was good to get out and do something other than work! 

Best to all....one foot forward, one step at a time...

Scoobydoo

Done with simulation and tatoos.  They were definitely not as bad as I thought.  Didnt hurt at all.  So I am very happy about that.  First rad txt is tomorrow at 10:50.  I received 5 tatoos.

Anita

unklezwifeonty

I'm so glad you are over this hump Anita. Tomorrow will be even easier than today.

1rarebird

Something to look out for---

My radiation center uses ink pens (Sharpies) to outline the edges of the fields where the radiation is applied to my chest wall.  They also put on small tattoos at the intersections of the lines for future reference points if needed.  Since the ink tends to fade, every couple of days they refresh the lines with more ink.  This has worked fine until last Friday when they put four 1" square small pieces of clear adhesive tape over some of the intersections where the lines meet. I guess this was to help preserve the intersection of the lines. But over the weekend apparently the tape's adhesive caused irritation to the treated skin underneath and itching was a problem, even though I could get some relief by applying Radi-Guard lotion.  I mentioned this situation to the techs this morning before treatment number 26.  They said they would take the tape off so my skin could "relax" and stop itching.  Sounded OK to me, but when they pulled off one of the tape patches some skin came with it. Oochhhh!   There was some slight bleeding and now I have a burning sensation at that place and the Radi-Guard is not helping much.  I am disappointed with this turn of events since my skin had been holding up well with only minor itching.  My doc said last week he was very happy with the way the skin was reacting.  But it appears that even if the skin is not peeling or blistering, that doesn't mean it is not fragile and easily torn.  So If your techs pull out a roll of clear tape and start towards you, I'd recommend questioning them about whether it is really necessary.  We have enough pain with this cancer stuff already.

bird

unklezwifeonty

Ouchie, thanks for the tip Birdie!

AsiaYM

11 down, 22 to go.

1rarebird- thank you for your post, I need to watch out for that!

Hugs, Karen

chinup

I will be starting rad soon...no date yet. But I will be having a double mastectomy with reconstruction. Haven't met with anyone yet for dates. I will be having rad under armpit because nodes had cancer. Not sure if I can have surgery first or rad. I think I will have to have rad first. Anyone with simalar situation???

missmelis1

sophie-sorry to hear your SEs, hopefully you're on the mend now.

I finished boost 6 out of 10 today. The area is pretty red already. I'm crossing my fingers that it won't get too much worse. I really want to finish by this Friday. The rest of breast is just tan now.

cookiegal

Ellen 57...yep that's the trouble spot...good tip on the boob hugger.

I am feeling better. Still tender with some zings, but that darn blister has healed.

The fatigue is odd, it comes and goes. I will be fine for a few hours then CRASH BOOM ZOMBIE.

Sadly this happened during a very nice expensive dinner Saturday night. Then I was great on Sunday, then I had a spell again today.

It's not like being sleepy...it's like my mind and body just shut down.

Anyway we did go away for the weekend,very low key, it was mostly fine. No way am I going to Vancouver.

Glad so many of you are doing well . YEA!

one-L

snuziq,wasn't that snow something?  Glad to have you here with us.  I hope your first tx went well today.  I am 18 down and have no SEs yet, I am just waiting.

anita, glad  you made it through the simulation and tattoo session OK.   It goes by really fast, at least faster  than chemo.  You will do just fine.

onty, you are getting there.  Started after me and will finish before me, now that just isn't fair.  lol. Hope all is going well.

1rarebird, I have had a clear little patch they put on the first day of radiation.  So far it has not caused me any discomfort,  After I had my lumpectomy, my incision came open and we had to keep it taped and I will probably carry the scares from that for the rest of my life.  Hope it heals with not marks.

hello chinup, I can't help you with your question, but welcome to the group.

melissa, good luck to you on finishing this week.  I know you are ready to get this over with.

cookiegal, gald you had a good weekend away and hoping that big red will heal soon.

I finished #18 today.  Still not showing any signs of SEs.  I know it is coming, but when is the question.

Hope everyone had a good weekend and got lots of rest.

Juannelle

unklezwifeonty

One-L,

Well, you and I know that life ain't fair....  why did we have to get this beastly disease... Anyways, don't forget I am being toasted on a higher setting!

one-L

Onty, OK, I guess that is correct about the higher setting.  I can't have it all, low dose and fewer treatments.  I just want it to be over.

Scoobydoo

Bird -  Oh wow that sounds really painful!  Thank you so much for giving us the heads up.  I will definitely stop them if they even think of putting tape on me. 

DaylilyFan

I am so sorry about the SEs some of you are going through!  I had paint pens and (at home) Sharpee touchups with a few clear round sticky patches.  Most of the stickies fell off at some point, but on my last day, the rad tech warned me not to try to wash or rub the last bits off.  Baby oil, only! she said, because the skin is going to be very sensitive even if SEs were mild.  I must say stuff came off my skin easier than my underwear!  

To anyone just starting, the plain Tom's deodorant w/o fragrance did subdue odor for me, and I found some corn starch with grapeseed oil at Whole Foods that I used in the armpits and under the breast to help control moisture.

Happy Trails!  

Kim09

Chinup - I thought that surgery always proceeded radiation.  You will have to meet with both your surgeon and the rad onc to know for sure what the order will be.

jakhope

I am 11 down and 24 to go. I just realized this Wednesday I will be a third of the way. I get pink, sore under the arm and take off my bra when ever I can. So far not too bad. I will see my oncologist Wednesday to discuss the rest of my treatment, looks like Arimidex. 

ellen57

Here is a strange question- it seems like you all have had a lot of interaction with your oncologists. I had 2 lumpectomies and then interviewed oncologists and radiologists. I chose the ones I was the most comfortable with. I only saw the radiation oncologist that I chose 4 out of the 8 times I had the check ups. That was disappointing- I chose the center that was less convenient because of her reputation and then felt like I was being passed off to other doctors. She was not even there for my 'graduation day' when they gave me a certificate. I only ever saw the oncologist during my consultation and then to discuss the results of the Oncotype DX test. (NO CHEMO!!) He spoke about what my drug choices were and what he would probably put me on. He scheduled an appointment for me to return about a week before I would finish with the radiation. He cancelled that appointment. Then I made one for last week (a week after I had finished) and he cancelled that. Now I have one this week. My question is how often do you see the oncologist and what happens when you go to them? I think because I didn't have chemo it is different than some of you who talk about seeing your oncologists during radiation? How often once you start the 5 years of drugs do you see the oncologist? Do you have a nurse assigned to you to call for questions about SE? I am almost more nervous about this part of the journey than the surgery and the radiation (

snuziq

1L - the snow was crazy.  Last Thursday several of my coworkers took a break and built a 7 foot snowman.  It was awesome.  I got to throw snowballs at my boss which was probably the best part!

My treatment today went well but was really long because they did the blocking and the treatment in one.  Other than that it was relatively easy.  I'm crossing my fingers that it stays that way!

unklezwifeonty

Ellen,

If the doc is not seeing you, fire him/her. You deserve better.

DaylilyFan

Ellen, I have similar questions about the next step, as I just finished rads, no chemo.  I met the med onc before I started rads to go over the Oncotype test results.  She was leaning toward tamoxifen instead of AIs because of my osteoporosis but wanted to look at my latest DEXA scan results before deciding.  

My next appt. with her is in 2 weeks and I have been writing down questions to ask that I would never have thought about without this wonderful community.  These include testing for Vit. D and , side effects, monitoring risk of uterine/ovarian cancer.  I think a nurse practitioner works with her--something else to ask!  If there's anything else I should ask, I hope someone will let us know!

Unk'onty is right, it sounds like that doc is too busy.  Can you discuss this with your gyn and ask for a recommendation? 

Scoobydoo

Yay!  I had my first rad txt and it went fine.  I actually could feel the radiation in my breast.  Seriously.  It wasnt painful or nothing like that.  But I could feel the pulse.  Sounds weird I am sure.  #1 down, 34 more to go!!!! 

Well I am bra less and wearing a soft cotton t shirt.  I put cornstarch under my breast to alleviate any friction. 

Anita

precioustime

This evening will be #12 down and 21 to go!!! I can say I am 1/3 way done!!!  I still have a sore throat and was given a prescription by RAD oncologist last night to take before I eat to help with swallowing food.  She thought for sure it was from RADS until I told her I also have a runny nose and cough to accompany it?!?!  Who knows--right? 

Hang in there ladies-- This will Soon Be DONE!!  OVER WITH!!!   

Loretta 

cookiegal

Ellen, are you at MSK? It could be that you just hit the onc during a really busy time. If your center has patient representatives or a nurse navigator, I would start with them and explain your concerns.

Sometimes you just need to be a little bit of a squeaky wheel. Sometimes I feel like my onc is a bit rushed, but I have great faith in his medical judgement.

If bringing the issue up is not helping you may want to consider a change. I LOVE my ps, but her receptionist is the WORST. Sometimes the problem is the support staff.

AsiaYM

12 down, 21 to go!  still little tanned, no other SE yet. I could see the outline where's been zapped.

unklezwifeonty

8 down, 13 to go. Also had the sim for boost in face up position today.

RedheadPam

Ellen - I saw my onc a week after each chemo tx, so that was once every three weeks.  I see my rads onc every week. I will go back to my onc after I am finished with rads (only 9 more zaps to go!!!!) to go over what drugs I will take, and my surgeon's office just called today to talk about a follow up appt. My onc's nurse is fantastic about taking calls to talk about SEs.

Bird - OW! I am sensitive to the adhesives used in tape, so I can totally sympathize. I have marks all over my chest,too, but they never used tape.  They refresh my marks every day before my tx, but it's not with a Sharpie.  They use some kind of body paint with a little brush.  I found a Sharpie the same color of purple that they use, and they said it's ok to do a little touchup myself on the weekends.

Today was tx 24 -- 4 more regular treatments and then the 5 boosts to go. I'm seeing a little tanning under my arm, and my left boob is pink and a little spotted - some are freckles, others just like a light rash. No pain or swelling, though. The nurse gave me a sample of something called Miracle II Cream to add to the tea spray and steroid cream. It has a variety of natural oils, and should be soothing. Keeping fingers crossed that "Pinky" doesn't get any worse!

SoCalDawn

# 2 done today. I can already feel the tingle akin to having spent a little too much time in the sun on my neck, of all places, and tenderness at SNB site. Although the tech swears skin tone has nothing to do with skin reactions, I don't see how it couldn't. I hope none of this means significant reactions later but will faithfully slather all things aloe, calendula, aquaphor and go commando as much as possible. I am worried about "the fold" underneath the breast given the lack of "perk" and D-cup size. Are any of you finding corn starch better/same as just a cut up piece of soft t-shirt placed there? Or any other recommendations for that area in particular? Cheers, ladies!

SoCalDawn

Redhead Pam...can you tell me more about the tea spray? I can imagine it very soothing and less irritating to apply...How often are you applying and before/after other topical creams? Thx in advance!

ellen57

SoCalDawn- under the fold was the only place where I had any trouble during the regular rads. It broke down during the last 2 weeks- I used Cortizone 10 which helped only a little and then was given a perscription that worked great. I will check if I can find the name of it to give you later. I put that on and then covered the area with a thick surgical pad. Then I wore a tight cami or the Shower Hug so nothing bound under the breast. Such relief! It did heal as soon as they stopped the regular rads and went to the boost. Good luck!