AUGUST 2009 RADS

kawee

My sister finished her rads a couple of months ago in Las Vegas.  Her breast didn't burn at all.  She said it was a little darker.  She had no side effects other than that.  The rad onc told me that I would be getting 28 with either 2 or 5 boosts (wonder if that's about the burning).

 One week down.  I feel a little tired, but better than I did.  My breast is sore on the side.  Wonder if it's from reaching over my head during the treatment?  So far my breast looks fine.

What's biafin topical emulsion, they told me 100% aloe vera gel.  I know they all tell you different things, but I'm open to other products.  Where do you get it?

O3132W

ravenruth:  I am currently taking the 3 week radiation (16 treatments)  First you have to be a candidate.  Such things as small breasted, small tumor, clean margins and negative nodes.  This program was not offered to me until I requested it.  First I asked my surgeon and she said that I would be a candidate and then I spoke to the radiation center onc. and told him that this is the program I want.  He approved and I got started.  This AM I had my #9 out of 16 and so far so good.  My breast is not pink yet and other than being a little tired I am not experiencing any other s/e as of today. I also slosh lots of Biafin Topical Emulsion (prescription) on my breast after treatment.  My treatments last about 15 minutes in and out.  Once a week they make an xray proofing location for extra caution which adds 5 minutes to treatment.  Each treatment gives me 2.67 units (grays) equaling a total amount of grays of 42.72 which is less than the 50 grays for the 33 treatment plan.  As my surgeon told me that the results of shortened or standard are the same you might want to discuss it with your rad onc.  Luck to you   Cathey

kawee

My sister finished her rads in Las Vegas a couple of months ago.  She idn't burn at all.

One week down for me, no redness, strange soreness on my side, maybe from reaching over my head during treatment. Starting to feel a little tired (weak).  Maybe stress, seems a little early.

 They won't give me tamoxifin til I'm done, said there was some evidence the rads don't work as well if you take it before.  Isn't it amazing all the different opinions.

They also told me to use 100% aloe vera gel on my breast.  Where do you get Biafin Emulsion?

O3132W

Kawee: Biafin Topical Emulsion is in a tube and is via prescription.  Ask your rad. onc for a prescription.  Luck

ravenruth

Thanks for the information 03132W, unfortunately I have large breasts, does that mean I will not qualify? All my margins were perfect and I too was told to stop tamoxfin (I only did 3 or 4) till the radiation stopped. Mine was 1/8 inch or 3 ctms. (also non evasive- in the milk ducts) Do I wear deoderant on the day I get marked up before radiation begins?

kawee

03132W - Thanks for the info.

BetsyBuzz and Lori - One week over.  Do you guys feel tired.  I really do.  Feel heavy and lazy and want to just rest and sleep. Hope it doesn't get worse.  Breast doing good tho.  Don't want this fatigue.

O3132W

I have been told that I should not wear any deoderant on either breast while doing radiation due to some ingredient in it that is bad for radiation.  I guess there is some kind of deoderant that does not contain a harmful ingredient but it is very expensive.  Your rad nurse would be able to give you its name and where you can buy it.  I choose not to wear any until rad is over. I do however smear on my breast twice a day the Biafin Topical Emulsion that my rad onc prescribed for me. Even this Emulsion must be washed off at least 4 hours before a radiation treatment.  It is water soluable and easy to remove and not sticky,  It really feels good and goes on easily.

 Friday was #9 with 7 to go and so far I am not even pink but I am beginning to feel tiredness in my legs.  But I have not hit the wall yet from fatique.  Maybe next week. Hope not.

As far as the qualifications for the shortened rad, your rad onc should be able to decide if you are a candidate.

There are many sites that descibe lots of details on the 3 week radiation treatments  One can be found on this site which will tell you about it.  Luck

fmakj

Ravenruth - I had my simulation unexpectedly (right after meeting with my onc) and I was wearing deoderant then.  They did tell me not to wear any deoderant at all during tx timeframe, but did say that I could wear the Crystal brand (even suggested the spray on that takes a bit of time to dry - but no rubbing on!). I believe it is the aluminum in regular deoderants that can affect both the rad tx and your skin during the txs.  Ask your rad techs and they can suggest what your Dr. allows.  I also use "Glaxal Base" moisturizer 3 times a day and was told that both of these products had to be applied no later than 2 hours before tx as they needed to be fully absorbed into the skin before tx. I have had #17 of 30 and am a little pink but both incision scars are getting pretty itchy.  Itchy! Itchy! ITCHY!  LOL!

Helen-Jackie

hi marybe

I am confused as to why u are stage 1V.. there were no lymph nodes involved in your case so u sound like stage 1..what am i missing

ChrisC433

My experience with rads sucks so far.  The machine is so unreliable.  I've been there 6 times.  Had to come back later in the day twice, wait an hour once, and then the last time they canceled.  It's bad enough going everyday, but worse when you don't know the outcome.  I'd go somewhere else, but there isn't anywhere else close by.My last treatment is now the night of the rehearsal dinner.  This sucks!!

Helen-Jackie:  I think it is automatically stage IV with mets.

Take care all

Chris

Helen-Jackie

Hi sherry35

I too live in toronto, but currently  being seen at PMH. I live much closer to sunnybrook so i was goingt o ask the rad onclo on monday if i can do the rad at sunnybrook. I still want my file at pmh though

how has your experience been at sunnybrook... are they quick, knowledgeable staff, do they as soon technology as pmh...do u recomeend anyone in particular..

regards,, how are u doing , u didnt write for a while and even thought i dont know u i was reading your story ,,,but couldnt continue as u semed to have stopped. really hoping u are well. anyone else know?

sherry35 you can send me a private message as i know our experiences with names etc should be kept confidential.

elimar86861

I've been reading that the areas that usually get the skin burns are the breast crease and the armpit.  What about the nipple?  What about the incision scar line?  My scar is still tender from the surgery, plus the skin was kind of squeezed together when I got the stitches.  (A wedge of surface skin had to be taken.)   Are the incision areas likely to get the skin burn too?  Fmakj (above) did write that her scar lines are getting itchy.  Is that pretty common?

jancie

I have only done 5 rads so far and I am already fatigued.  Don't really know if it is all due to radiation treatments or me just being stressed out but today I pretty much stayed in bed.

I asked my radiologist about the 3 weeks versus 6 weeks rads and how do they compute who gets what treatment.  I was curious because the chemo killed my tumor (shrunk it down to nothing) and I had no lymph node involvement.

The doctor told me that some radiologists will do the complete radiation in 3 weeks but they will give you a stronger dosage so in essence, you get the same amount of radiation in less time but according to her (doctor) she preferred to do the radiation over 6 weeks as it was less damaging to the skin.  I will get 5 weeks of whole breast radiation and the last week will be booster radiation where they radiate a certain area of my breast only.

I was also told that they will continue to weigh me weekly as most breasts do get larger when you gain weight and they want to make sure they are still pinpointing the correct area.  This is also one  reason they are doing weekly x-rays if I understood her correctly.   The doctor wants to make sure that she is hitting the target area and it is a doublecheck feature.

My nipple is already tender but I was told that was to be expected as the nipple is extremely sensitive.  I guess no different than when I would lay out in the sun without a top on - but I always made sure I put plenty of sunscreen on my nipples.

I am having such a hard time getting up in the mornings since I started radiation and I have only completed one week so far.  I can only imagine how I am going to feel by week 3.

fmakj

Hi All!  I was told that the main areas of irritation will be the scar lines (which mine are very itchy right now), the crease under the breast, the nipple and the area between the breasts (but a little higher).  The worst areas for skin irritation (drying, peeling, possible blistering) is the crease line under the breast and axilla (probably due to rubbing).  So far I have had a sore axilla scar that has subsided and now a very itchy breast scar (probably because it is in the lower inner quadrant).  I too had a wedge taken, so there is a very definite indent where the lumpectomy scar is.  I keep every thing creamed up well 3 times a day and can pretty well function normally usually with a nap mid-day. Today is #18!  Be Well All!

Beach

4 more boosts to go and my rads are finished .  My tx plan was 16 tx plus 5 boosts.  Have a square of redness from under my arm to the middle of my chest, but no broken down skin, and have areas of itchiness but nothing too severe.  My scars don't seem to be affected at this point, but I do have sensitivity issues and twinges of pain in my nipple and surrounding area....... unfortunately, it is part of the area receiving the boosts.  Fatigue has been a factor through this, but I was pretty wiped out prior to starting rads due to a bad reaction from chemo and still dealing with some extreme se's, so it's hard to tell what's causing the fatigue. 

Overall my rad experience has not been too bad at all..........I hope this will be the same for all of you!

Sandy     

ccbaby

My radiologist is taking a lot of time getting my plan worked out. He says it is 'very involved' It has been a week since my SIM and what really worries me is that it has been 7 weeks today since my last chemo. I didn't think you were suppose to wait over 6 weeks? I called his nurse telling her my concerns about that and she said she would talk to him about it. Looks like I will have to join the September rads group at this rate.

jancie... I asked my radiologist about the 3 week course too and he said it is only for very early stages.

elimar86861

ccbaby, I was just thinking about you and wondering how you fared rejecting the tattoos?  I'm doing fine with my green Sharpie marks.  I had to draw them myself for one week between the sim and the "dry run" that is X-rays for positioning.  They said I was right on with the marks.  Now they will do them every day and I might have to only touch them up on weekends.  Easy, peasy.  For my very first Tx, here's something I wrote earlier today:

"Well, I have to say radiation is pretty BORING!  Yeah, I went to my first actual Tx this morning, now 32 more to go.  Oh joy.  Stay tuned for upcoming episodes like, "what treatment # will she abandon her bra?" and "honey, do these blisters make my butt look fat?"

My treatment room has one of those lighted ceiling pictures of a meadow with wildflowers. It makes me itch just looking at it.  Back in the day, I was camping on a small island with some girlfriends and we decided to walk around with our tops off (like guys are pretty much free to do.)  Well, so much for equality.  The mosquitoes now had more places to bite us...We had our tops back on in ten minutes time! 

Oh yeah, and my treatment room has a "peep hole" in the ceiling.  I asked them if it was a porn camera.  They said it was another laser to line things up.  I swear I better not see any of this on You Tube!

ccbaby

Elimar...They are suppose to do my tatts this week when I go in before rads actually start. That is when I will refuse them. They marked me with a blue sharpie last week during my sim and put tape over it and it is still stuck on really good. I am just waiting for them to call me back and tell when I will need to come in.  Hey, I will look for you on You Tube! LOL

kawee

Today I told the tech I was tired, he said I needed to eat alot.  (Well, that's a switch).  Said you burn lots of calories trying to heal from rads.  Maybe all this misery has a hidden benefit--  WEIGHT LOSS and eating alot!!  Who knew. 

ccbaby

Kawee...That is what happened with me during chemo...I ate a lot and actually maintained my weight the same all the way through. I hope the same happens for me during rads.

lemonjello

I am so not happy with rads.  First of all, the waiting room is always a bummer.  Nice people, but there is always somebody there for a recurrence...and it bums me out.  For them and for me.  Then the fatigue is bad for this 65 year old body and it comes around six hours after treatment and then i sleep so sound i get insomnia thru the night.  I hate the daily thing about it, i hate the table, the sounds, the sharpie marks all over, even if it is only a few minutes.  I swear its aggravated my asthma, made my throat dry, pained me in the ribs, and given me a nauseous feeling afterwards.  I see the doc every Tuesday.  The doctor and techs are just the nicest and most professional, the facility is top notch. 

O3132W

lemonjello:     I know just how you feel.  My 72 year old body suffers each and every day.  My back just breaks from that hard hard table.  I try as hard as I can to relax but I can feel all my muscles like rocks and all I can think of is ":is it over yet?"  Lately I have been counting the sounds during the treatment.  5 sounds on my left and then 3 sounds on my right then I know it is over for that day.  At first the arms just about go numb  but that is getting easier. I also see the doc every tuesday after an extra long treatment including xrays to check positioning.  Tomorrow I have lots of questions for the rad onc.  Small cough with dry throat?  Why are my blood sugars high (I am diabetic)  Pink but not red yet.  I am doing the shortened 3 week radiation and had #10 today and 6 to go.  I should be finished a week from Tuesday.  I dont want to think of whats next.  I guess we have no choice but every so often we can vent.  Luck Cathey

LoriR

Hello August Rads - I have a question I hope someone can answer - I am only 6 rads in and there has suddenly appeared a large (dare I say it) lump right underneath my lumpectomy scar.  Is this normal - I see Rad dr. tomorrow for my weekly visit with him but it is worrying the heck out of me now.  something tells me that he told me to expect this but I can't remember - I probably had chemo brain when I saw the rads doc.!  UGH I hate BC

peg119

I will be starting rads tomorrow, August 25th and started Tamoxifen tonight.  I have DCIS, stage 0 but strong family history.  Had genetic testing but won't know results for another month.  I had to change the appt. which is why it is so far out.  I have had two lumpectomies to get a clear mammogram.  Not looking forward to rads or meds but don't think I can take the risk of not doing either.  Everyone tells me I will get very tired about mid radiation.  I am doing 6 weeks.  I am going to try and continue to work full time but we will see.

jancie

Lori R - could that lump be scar tissue?  The tissue and skin around your lumpectomy area will tighten up as you go through rads which is one reason they like you to wait 6 months before reconstruction.  My breast is a little bit swollen after 6 treatments and in reality, I like it lots because it is swollen it looks perkier and my nipple is up higher.  I only remember about 50% of what the doctors tell me and they don't seem to mind if I ask them the same question each time I go in there.

kawee

LoriR- I have a long hard lump right underneath my scar.  I can't see it, but can feel it.  By the way, are you tired yet?  We started on the same date.  I would like to keep in touch with you so we can compare notes.  By the way, my tumor is pretty much the same as yours, only 1mm.  Very small, Stage 1, Grade 3, no involved lymphs ER/PR, HER2 positive.  The tumor board decided no chemo for 1mm.  It was DCIS with the 1mm invasive.

LoriR

Janice and Kawee - I am pretty sure it is scar tissue because it is Right under my green sharpie "X" but I am headed to the doc now so we shall see...  Thanks for the replies

Kawee - I don't seem to be too tired yet.  I am getting lazy in that I haven't been keeping up with my house work like I should- I have a sink full of dirty dishes and I would have Never had them sitting there like this before - on the other hand I ran a 10 mile race on Saturday so - go figure???  We do have very similar dx - with being Her2 + - I am surprised you didn't have chemo? are you getting Herceptin?

BetsyBuzz

LoriR & Kawee - Today is treatment six for me. I also have a lump next to my scar. I will ask when I see the Dr. on Thursday. I am getting my port out today!! Yippee...it's been bugging me lately even though I loved how it saved the digging for my veins through chemo.

My scar is a little pink..no red tissue yet. I'm keeping my fingers crossed.

Peg- I'm working through rads too. I worked through chemo...albeit part time. Just pace yourself and don't push too hard. Give your body rest if it needs it. It's not a mind over matter thing...listen to your body (something I humbly learned through chemo).

Betsy

Shedua

Hi Everyone,

I am a new member. I wish you all the best in your rads.

Shedua 

sherry35

hi everyone,

had treatment #13 of 25 today.  I don't know if i overdid it on the weekend or if I just got hit with the fatigue bug today, but i came back from tx and slept for 2 hours.  I also feel a little nausious (SP?). Did anyone else have any naseau with rads?