June 2012 Radiation Rads

Hi Denise!! I will follow you anywhere my friend, right into radiation!! My start date is June 25th so you will again be my wonderful barometer just ahead of me. In case in interests anyone else, I will be having my exchange to implant surgery before rads. So we will all see how it goes for me.

I have Aquaphor, Emu oil, and Palmers concentrated cocoa butter ready. Also, have Tom's of Maine deoderant which is aluminum free and recommended by my center to use during rads. I live in the next town over from the company if you want to try it Denise. I can mail you some. Just pm me.

(Raising my glass) Here's to rads being the "easy" part of this journery...

Popping in to say hi, but won't be starting until mid/end of June. Will be back...



Jenn

Hello ladies, 

I'll be starting rads on June 4th--got my tats and will go for a dry run on the 1st.  I think I am doing 25 rounds, but it may be 28, not sure yet.  

I got the deoderant edict, but am told that I can wear underwire bras if they are comfortable, so we'll see what happens.

I'm already using a cream called My Girls, b/c it's a local business and my physical therapist recommended it. We're kind of curious to see whether it helps at all to  apply it for several weeks prior to the start of rads, so I'm doing that--I figure it can't hurt, so why not?  

Hi all,

I will be sure to update as I progress,I do know how much strength I got from the info before chemo,somehow doing rads doesn't seem as frightening to me.Though I may be totally underestimating what I may have as permanent damage,but we can't think that way.We need to believe it will all be over soon.      

I think I will also invest in some emu oil as it seems to be good to use all around, but It think I am going to wait and see if I have any problems before I invest in anything else.I bought stuff for just about any SE I saw on these threads for Chemo and now have a med cabinet full of things I thankfully never needed. But thanks for all the recommendations.

Also one thing they mentioned to me was that doesn't matter whether you are fair skin or  dark.Being light doesn't guarantee you will have burning issues and being dark doesn't guarantee you will not.

Are any of you doing the hormone therapy also.My Onc wants me to start Tamoxafin in 2 weeks but I thought it would be after rads.Any of you starting during rads?

Hi all

I am going this WED  ( 5/16) for appt. I THINK I am starting partial breast irradiation in June, but I am having second thoughts.  This is the left breast and I already have impaired lung function. I know partial should be less SEs that  " full on"  , but I still can't stop thinking of the possibility of ending up on oxygen before my time.  I am 54 yrs old.

 Is there anyone else here with pre existing issues?
I SO wish they would just use the PROTON radiation, but I already know they will not.  Virtually NO SEs with that .  (sigh)

akinto When I went for my tats they also went over everything that was going to happen and the why in detail.Don't know for sure but I would assume this will also happen for you and I am sure things will come to you as they are going over everything.Also gave me a folder with all the info I would need.Some immediate concerns would have to do with where your tumor was and how radiation may effect your organs  especially if it is on the right side ,what to expect for fatigue and skin reactions,what they want you to use for creams,deodorants, soaps,bras,what they allow for supplements or vitamins. I was not concerned with the tats but one ended up being smack center of my chest that will show with any low cut tops or bathing suit.It is just the size of a pencil point but it is black so it looks like I have a black head there so not happy with that.I also wanted to know what percentage I would now be in for recurrence after adding this to surgery and chemo.

Purple32 I was also going to do the partial in January and had the port placed during surgery,but I went to the RO for his scans and found it was to close to my ribs.Didn't want to cause any permanent rib damage and mine is on the right so I worry less about heart and lung damage.At least with the partial if it recurs you can get radiation again in this breast.I don't think you can with the complete.I have never heard of the PROTON radiation I am going to check this out on line.Though I am sure if it was an option where I go it would have been brought up.

Momof2 I am 52 and still awaiting the flashes,I find they only seemed to be there the first week after TX.Need to go to my GYN end of month because I should have been into Immediate Menopuase but still spotting.So with my luck this will be the next thing to remove.I also heard the flashes are intense on the Tamoxafin and don't want to deal with this at the same time I am dealing with Rads so I am going to present this argument to my Onc when I see here end of month and see if I can delay.Also going to look up Effexor and see if I can use this if needed.

Hi Imlola

I went for my appt. Go back MON for tats and will have 1 week of APBI in mid June. 2x a day.

I asked about the protons and though there is a current study there at MassGeneral for those who have undergone matsectomy, I was told that they perv. had a study for those with lx and results were not good. It was " not enough" and also there were SEs  she said  . Not sure , but yes, do look up protons. In any case, I cannot have them.

I was also told there " could be " a  very slim chance of a problem ( fx) to the rib with the APBI , but so so slim ----and almost no direct rads to lungs. SO...... I said yes- what else could I really do ?

Who likes the choices we get ?  The only thing that makes us able to "choose' them it to know the alternative -  strong chance of recurrence.

Thx for asking, Denise. The MO said arimidex - dont like this AT ALL as I have osteopenia and have broken several bones. She ordered a bone density and said if they are ' too thin' she will consider adding fosomax. Hmmm....nope, dont think so. I believe I will insist on the nasty tamox. which she said will not be as effective for me due to the fact am POST meno.  Again---no lovely choices, just keep reminding myself of the alternatives.

 Best of luck to all.

Imlola

When you look up effexor, pls look up SEs of effexor and/ or ' trying to get off of effexor'.  To the best of my knowledge it must be taken daily.

Purple32 Thanks for the great info,I also had a LX so not a canidate anyways.Can't do internal because of location and rib damage so I guess traditional is my only option.

 Denise After what you posted here on Effexor I think I will look for an alternate when and if its needed.I haven't yet started the Tamox or hot flashes so more time to research. 

Have a great day all 

Ok ladies I already have my first question, I read a comment about a soft bra to wear, are there any recommendations out there?

Infobabe - Thanks for the great info, just so happens I have to go to Penneys today so I will definately check out the bras. I already have the silky pj's but having such bad hot flashes and night sweats since this put me into menopause and the steroids don't help. Do you take steroids during radiation? or any drugs?

Popping in to say hello - and thanks to Denise for starting this thread.  I'll happily follow you and Momof2 and Jennifer anywhere! 

My final chemo is this Thursday and I go in next Tuesday for mapping and tattoos.  I'm pushing for an early start date to my radiation as I want it done as quickly as possible to give me some recovery time in August before school and internship and job start up with a vengeance.  So I plan to start as early as possible in June.

Thank you for the advice about lotions - I have a feeling I'm going to need them as the AC and Taxol have done a number drying out my skin, which also tends to burn quite easily.  I've heard a couple of people suggest pima cotten tank tops as an alternative to wearing a bra (I've always hated bras and am using every excuse I can find to stop wearing one now).  I've had a couple from Eddie Bauer in the past; they're super-soft and wondefully non-irritating.  I've learned that JCPenney's apparently carries them (far less expensive that EB) so I'm going to go check those out this week.

I will see you all again very soon!!

Back now with a plan!



Planning CT session and tatoos on Tuesday 5th June. Then treatment start on Monday 18th June. 28 days - full breast and axilla with concurrent tumour bed boost. Finish on 25th July!



She (RO) had mapped out three choices the other week and I knew she preferred the "traditional" 33 days or the 28day concurrent. I preferred the "Canadian" 16days (why do more than you have to!) or the 28day concurrent. So we agreed on the middle one - she's happy and I'm not happy, but really I know I'm going to cry throughout however many days it is and won't be happy with any of them.



Rads actually scare me a hell of a lot more than chemo, particularly since we now think I GOT breast cancer BECAUSE of excess diagnostic radiology as an adolescent! Because of this med history discovery in recent weeks I am now considering a full BMX next year...



I politely refused the extra-clavicular radiation even though she wanted to do it (1 positive sentinal node - no clearance so no idea if anymore were positive) and to her credit she really didn't push. I've read the studies on likelihood of recurrance there versus potential permanent side effects and I'm not happy with the cost/benefit ratio (I'm a researcher and follow the stats). My DH came along and he asked what would be the treatment if I did recur in that nodal area and the treatment would be radiotherapy - so it makes sense to not do it now and to only do it if and when necessary!



So glad DH came along - he has tended to downplay EVERYTHING so far so even though I had told him the side-effects of radiotherapy I know he was thinking they would be minor and temporary. "Oh she'll have a sunburn for a few days" I could see him thinking... Having the RO clearly state the potential severity of the fatigue and burns, and the long term effects (spontaneous rib fractures, lymphedema, breast shrinkage and fibrosis, permanent lung scarring, secondary cancers) made him really pay attention thank goodness.



So, I went and was brave and sensible and smiled and nodded even though inside I was screaming NO NO NO NO and just wanted to have a toddler tantrum :-) Cancer sucks!



Jenn (hoping you will all hold my hand and talk me off the ledge on this part of my treatment!)

Hi Ladies - I bought a really thin hook front sport bra at Walmart made of cotton that I thought looks comfortable, I hate bras and usually take mine off as soon as I get home. I still want to check JCPenney for the zip front but I have such hot flashes and night sweats I don't think I can wear pj's either. I'm kinda waiting for a consult before I buy creams. I do have Remedy skin repair cream that they use at hospitals. At this point I don't know where I'm even getting my radiation for sure.