March 2009 Rads Group?

kristifromsandiego

Hi guys,

Unfortunately I am also joining your group, however I do not start until March 17th.  Thank you all for giving me info on the process.  It is nice to see a few of you from the other chemo thread.  I am so happy that many of you did not have to go through chemo, what I have been told is that radiation, though it is not fun, is going to be a piece of cake.  I hope they were right.  I understand it is cumulative and that you will be sore and tired but it is manageable.  After a mastectomy and 6 TAC chemo treatments, I could use something that is not that hard. 

Question, how long is the mapping appointment? What hurts? How quickly did you start radiation after your mapping? 

I wish you all good luck.  Kristi

Brenny

I did the simulation on Friday -- I just found the whole process humiliating.  The techs were fine; however, why the digital pictures??  And although I knew there would be small tatoos, what is with all the magic marker grid lines???  I can't believe there isn't something better.  I go back for a practice on 3/6 and then start 3/9 for 30 tx.

I guess just another reason not to look in the mirror as I go past -- bald, fat, scarred, and now we add magic marker ....glad I don't have a husband or boyfriend now because I just couldn't deal with anyone else seeing me like this!

Ah well, put on my big girl panties and deal with it.....

NancySchoen

Kristi.... The mapping or simulation appt was about 45 minutes. The hardest part for me was holding my arms up over my head to hold on to the little bar. I had not been able to move my left arm or lift for more than 6 weeks so this essentially was the first time I had my arms above my head. I have a total of two tattoos ( yes they did hurt when she did them). I also have five x's . Three on my breast and one on my left side and one on my right side. Yes, they use magic marker. They put special hypo allergetic clear tape on mine so that I can shower and not have to worry about removing the marks. The marks are so it will be easier and quicker to line you up when you go for rad. They did take two digital pictures with a regular camera of my breast the women explained to me that this was a second back up in case for any reason the marks were to disappear before your first treatment. She was very nice and did not make a big deal out of it. I also wondered if this was a way to keep track of what your breast looked like at the beginning of treatment and if they would take another at the end of treatment.

I had a CT scan on 2/17 and then the simulation ( mapping) on 2/19 and then the dry run were they do x rays to double check all the measurements on 2/23 and started my first treatment on 2/24. It all was very quick and they had all the appointments scheduled on the day I saw the radiologst and the oncologist which was on the 2/17.

I was very anxious for the first radiation because like anything I am nervous about the unknown. I did fine. You lay on the table and they have you take your arms out of the gown and they very carefully line you up to the marks that they have made on your body. You have your hands over your head and are holding onto the bar above your head. They put a triangle pillow under your knees for comfort. The actual table is very hard. Once you are situated they leave the room and then you must stay perfectly still with no movement until it is done. In my situation the machine starts out on the right side of my body for two fairly short radiation beams. It then moves over the top of me to the left side where my cancer was and it does two longer beams. Then I am done I think the whole total of getting on the table and the treatment takes maybe 10 minutes.

I had my 5th treatment today and I am doing very well .I saw the doctor and he was very pleased no reddness and everything looks good. I will tell you that I think part of why I am doing better is that my primary doctor has increased my anti depression medicine as I was having a migraine almost everyday for two weeks. I finally feel normal. Plus my BP was sky high and he increased that medication also. I was so focused on the cancer that I was not aware of the other issues untill the oncologist suggested I see my primary doctor. I must say that the  other thing that happended was that the oncologist had me go for an endoscopy for pain in my stomach/esophgus area and I have yeast infection from all the other medicaiton so now I am taking medication for that but I finally feel good.  Hope this helps. Nancys

dianef

Thanks for the tips on the bra's  I will go this weekend.  I also  wear comfy sweat pants and put the gown on.

Caren thank for the encouragement....you are almost finished!!!!

Today was not as bad as i had anticipated.  So 32 more to go!!

XOXO

Diane

kristifromsandiego

Nancy,

Thank you very very much.  You really helped me understand the process.  I think that information is key. I really appreciate it.  I found your last comments really interesting because like you I also have a throat issue.  It feels like I have a lump in my throat.  I am on a anti acid pill because my oncologist thought it was because of that.  How was the endoscope.  That scares me also.

 Sorry to hear about the yeast infection and the stomach stuff, this whole thing is a drag. 

Thank you again  Kristi

jessee54

fishbride - I think those were my permanent tattoos. I did not get any other markings tho, no sharpies...just the 3 tattoos.

I've always worn a sports bra. it seems to be the best support for me and I like wearing all cotton. However, at the moment I only have one that fits right and it's wearing out fast! Time to go bra shopping.  Why the camisol? is that supposed to protect the skin more under your clothes? I work out of my home so I'll probably just wear loose t-shirts till I have to go out and meet clients.

Juli50, yeah, my neuropathy continues to bother me, it's soooo uncomfortable! I'm also still fighting fatigue from the chemo, although I'm 24 days out. It seems to be a VERY gradual healing process. I had to shovel snow again today (this time DD had the flu ).  So just when I thought my energy level was good this morning, the shovelling totally wiped me out. 

My rad nurse said the skin problems usually don't start until the 14th tx or so. She said that seems to be the magic number....."magic"???

I wish I had some magic right now to make this all go away for all of us. I can see why lots of women call themselves "warriors" after all this!

Jessee 

NancySchoen

Kristi... I am glad that the information I gave you helped. I would advise having an endoscopy. It does not hurt at all as you are asleep. The reason I say this is that the pain I had sounds very similar to yours. It was hard to swallow and the pain never went away it was always there. I think I had it for a while but I had been on so many pain meds I did not realize it until I got off the pain meds. The reason I say this is if you do have some type of infection it will not go away on its own. My gastro dr. gave me Clotrimazole. This is the first time since mid December that I do not have pain. I am also taking zegerid which helps to keep the acids down. All the stress from bc and the antibiotics and pain meds is what causes this problem. My doctor said it was good that I came in to have the test. The got me in the day after I called. Be sure to tell them you have bc and you need to see the doctor asap. You should not have to have that pain along with everything else we are going through. I must admit it does help to deal with thing when you do not have pain. Good luck.

I agree with Jessee I want some "magic" to make it all go away. I don't know about any one else but I feel my whole life right now revolves around doctors, rad appts and the worry of it all.

Diane... I orderd my bras on line at Her Room as I did not feel well enough to shop at the time I needed them. There is also a bc catalog from JC Penney. The bras came in two days and I did not have to deal with traffic and stores.

I do not know about any one else but I seem to be very germaphobic lately. I do not want to be in large groups where I could get the flu as I do not want to risk being sick and trying to do rads. This probably sounds crazy. I also am a firm advocate of plenty of hand washing. Does any one else feel this way?

Nancy

TorchSong

Hello all!

About the cotton bras/camisoles/loose clothing--we were told in our radiation class that we shouls weatr clothing that wasn't tight and that would breathe, so air could circulate on the skin. This is supposed to help keep it from getting irritated and breaking down. I think that's why some women are also told to avoic underwire bras during radiation  tx (since it can't be because of the xrays--you don't wear your bra when you're actually getting the tx).

I'm not quite sure what I'm giong to do; I haven't been comfortable with the cotton bras I've seen so far  I don't know if a camisole would work under the clothes I usually wear (shirt/blouse or turtleneck with sweater/vest). I guess I need to investiagte them, as all I think of when I think of camisoles are those light floaty things that have a sort of shelf bra and then go down to the waist.

Guess I'm going to the mall!.

karen43

I'm starting 6th tx today. I did notice my skin is starting to darken on the treated side now. I saw the rad onco yesterday after tx. He showed me the CT planned tx areas. Mine starts out wide with lower doses of rads to the whole breast area. Then it moves in further each time gradually increasing the rads until the final 3 strongest doses directed only at the tumor site. Knowing all this really helps calm my fears about lung/heart damage. Nancy, the rad onco nurse suggested I take an antidepressant. What are you taking?

nelia48

Sorry I haven't been back recently!  I had my first radiation treatment on Thursday, then had the hyperthermia treatment on Friday.  Supposedly, my cancer center is the only one in Florida that does this.  It takes about an hour.  A 9 x 9 box that has a plastic bottom is filled with water.  It heats up from 104 degrees to 108 degrees.  You lay flat with this on your chest for an hour.  Boring, but didn't hurt any.  No hotter than my shower water and I didn't really feel it much.  By the time it was done, it was pretty red -- like when you get out of a HOT tub of water.  They rush you over to get your radiation.  Supposedly, the radiation is 30% more effective when the area is heated first. I did not know that cancer cells weaken when heated.  I will get this "hyperthermia" treatment 2 times a week.  Yesterday, I went in for my regular treatment (#3) but all the computers were down and they told me to skip this one and come back today.  Wish they had called, as it would have saved me a trip.  I'll be so glad when this is over.   What an interruption in EVERY single day for 6 weeks!!!  But I do thank God for all this, for sure!

Cora

CindaD

Hello everyone,

It's funny how tx is different across the U.S.  I wasn't told anything about wearing lotion or deodorant or an underwire bra, all things that I wear of course!  I go for a dry run on Thurs, so we'll see what they tell me.  I too am very tired of breasts, cancer, doctors, tx,baldness and feeling tired and fat!  Can we just GET THIS OVER WITH AND MOVE ON?!!!?  That's my rant for today! I'm sorry for all of you ladies whose  dh aren't being supportive. Mine has been, but I think he is now tired of it all and thinks I should be back to normal. I really believe that if you haven't lived it, you will never really understand it. Now I'm going to try to be productive at work.  Are any of you considering participating in the biphoshate ( I know I didn't spell that correctly) study?

Have a great day.....the finish line is ahead!

Anonymous

I am still coping with my reinserted surgical drain, praying that it comes out when I see my PS on Thursday. That would put my simulation on March 11, the same day as the final fitting for my wedding gown!

The rad onc says I can have one day off and stretch the honeymoon to Monday. Am I crazy in planning a wedding in the middle of RT? But life goes on, and Tom and I want to be together to face whatever challenges may come.

Have a good evening, all

Bette 

NancySchoen

Karen.... The anti depressent that I take is Effexor it works well for me and I do not have any side effects from it. Other wise I would be in a crying mess all the time. Plus I had migraines for two weeks straight I had worked myself into so much stress. I think it is something they should offer to all cancer patients. Or at least some type of medication that helps us to relax a little better.

Bette: GO FOR IT! You should get married and start your life together and have some joy in the middle of this crazy bc tx. Good luck on Thursday.

Nancy

dianef

 Hello to all

Bette``you do what is best for you.

Nancy``Thank for the tip for ordering the bra on line.  Good idea.    I am also on Effexor,  The only side effect I had was nausea, but it has stopped.

Diane

karen43

Thanks for the info, Nancy. I am having a hard time relating with some of these issues people are posting. My rare bc does not respond to any known chemo drug. I feel lucky not to have gone through chemo but scared too. There's no proof rads work either but since I also have dcis, I'm trying to be on the safe side. Also, your description of the rad tx procedure was exactly as I had experienced it since my bc is on the left also. Oh yeah, when I posted about the hair falling out I did mean armpit hair!

sama710

I'm on this train now too!  Thanks for starting it, TorchSong.  

Finished 6 rounds of chemo (TC) on Feb. 10th.  If my cell count is ok next week, I'll get my port out March 11, simulation on the 13th (btw, that number is supposed to be lucky for women, unlucky for men - so it got a bad rep), then start rads around March 18.  I'm up at 4am because of hot flashes/night sweats -- will have to check out the forum on that.  Like the card says, I'm still Hot - it just comes in flashes now!  

Thanks to all who are posting your radiation stories -- great to know what we might expect. I'm so grateful to be done with chemo that I hope rads will be a piece of cake in comparison.  We'll see, won't we!    

Anonymous

I don't know... but I've got big boobs (44 DDD) and there is no way in Heck that I'm gonna go without an underwired bra when I'm out in public! Regular soft cup bras won't support, and sports bras create a uniboob, which at my size, looks like something out of Frankenstein's lab. My underwires ARE cotton, though, and when I am in the comfort of my own home, it comes off. 

What about you, ladies? 

nelia48

Sama710,  I finished my 6 rounds of chemo Dec 3, but my oncologist says I have to keep my port in for at least 2 years!!!!!  I have to go have it flushed out every 6 weeks.  He said just in case there is any return of the cancer, etc.  My sister had to keep hers in that long, too, when she went through it.  Wish I could get it out.  I hate that thing.  Mine was nothing but a hassle.  The surgeon who put it in, did it too deep and they always had so much trouble getting the needle in it.

I'm also up all night with the hot flashes and sweats!!!!!  All day long, I'm freezing cold, and I'm in Florida!!!  Then, I go to bed and the hot flashes start.  I think it's the Arimidex.  I keep trying to take it earlier in the day so that maybe it's out of my system by nighttime, but it hasn't changed a thing.

Went for my third Rad treatment yesterday.  Ended up being re-tatooed, exrayed  again, etc.  Took forever.  Today I get the hyperthermia treatment again, so that takes an hour.  Don't know how much of that I'll be able to stand, as I'm started to feel some irritation along the scar line.  I'll try it again today.

CindaD

theprettiestmess:  I'm wearing my underwire unless I'm specifically told not to, and then I'll probably still try to wear it.  No way I'm going to work without it!  Bad enough I have to be here bald!

Anonymous

My last chemo was Feb 18 and my rads simulation and tatoo are set for Mar 18.  Not sure when actual rads will start, although I suspect end of March.  I bought some of the Jeans Cream to help with the "burning" - from what I hear it is supposed to work very well. The only side affect I am concerned about is the potential fatigue.  How bad does it get?  I am sked for 30 sessions which includes 5 boosts.

kayhawk

I had my planning session today and will start my 35(?) sessions of radiation on 3/16.  I was told to start Tamoxifen after the radiation.

TorchSong

Hi Kay--you and I will be twins! I start my 35 doses on the 16th too!

Martha

karen43

Nelia48, I had surgically induced menopause 3 yrs ago. I was put on HRT (premarin) about a month later. Since the bc dx the docs won't prescribe it for me anymore (even though my receptors were neg). What you are describing is exactly what I'm experiencing now without the hormones. It's very possible that it's not the Arimidex causing your symptoms.

BooBee

Welcome Purple!!

bluedasher

CindaD, I think I'm going to do the bisphosphonate clinical trial (SWOG S0307). I've signed the papers and I see my dentist tomorrow to see how he feels about it.

Also, tomorrow I have my CT and simulation. Thanks to those who have posted about their experiences so that I'm prepared for magic markers and digital photos.

nelia48

Bluedasher, I just recently went through the simulation and a PET scan.  Also the CT scan, etc.  LOTS of magic markers on me.  The simulation took time, but I appreciated them getting it right.  The tattoos didn't hurt like I thought it would.  I look like a bull's eye for target practice today as they drew more lines all over my chest.  Hoping for great results with you!   Cora

buddy1

Hello everone, I am 3 weeks post op bilateral.  I start chemo next week My tumor was 2.2 cm 2 of 11 nodes positive.  My Surgeon is telling me I do not need rads.  I was wondering how many of you have a similar situation.  From everything I have read, rads is extra insurance that it is all gone.  Has anyone else had bilateral ,similar tumor size and node envolvement.  I am grade 3  thank you so much

bluedasher

I had my CT simulation today. It was similar to what Nancy described but there were some differences.

First one of the receptionists took me to the changing room and explained how check-in for the visits would go - because people come in every day for short appointments, it is different than in other departments of my HMO - they have a self check in where I can type in my name or swipe my plan card. Then I go back to the changing area where there are lockers for your stuff and chairs to wait until called. Arrival is all very self service. She also took a picture of my face.

I met with the rad onc so he could answer any questions I might have. We discussed the 3 week intensive rads, but he said he didn't want to use it on me because I'll be on Herceptin and there isn't research on the combined effect on the heart of getting Herceptin plus higher doses. So I'll have 30 treatments like many others here.

Then came signing the consent form. 

The tech took me back to the CT machine - on the way we passed the treatment rooms which have names: Tranquility and Harmony rendered in English and Chinese above the door. I know they are trying to make the treatment environment nice, but its a bit much for me. 

The tech double checked which breast was to be treated (uhh - the one with the scar). She emphasized that they try to make the position comfortable to make it easier to lie still for treatment. We tried several of the ready made head rests they had to see if one was comfortable for me. The head rest is what positions me on the table so it has to position the neck and head closely. The neck bumps on all them were too high for the back of my neck to be comfortable. So she made a custom one for me. They have a block of material to which she adds water and she then formed it around my head, took it out to do some more shaping, put it back to make some final adjustments and I had my own head rest. There was also a standard leg rest behind my knees so they could be comfortably bent. And she put a big rubber band around my shoes to keep my legs still in postion. 

The room is kept at a temperature to keep the machinery comfortable - rather cold for a half dressed woman. She put a blanket over me when I said I was cold and once my arms were in place above my head, she covered them with another blanket. It was still rather cool but not bad. She pulled back the blanket from the breast whenever she needed to see it. 

Once I was all set in position, the rad onc came in to mark the area again checking with me on which breast. He used some kind of pen but with a thinner tip than the usual magic marker. The tech taped wires to my scar and to the edges of the area so they would show clearly on the CT. 

Then the CT scan was done. Also pictures were taken - one from above and one from the side. I don't remember which was done first. My tech had a different explanation than Nancy's. She said that they want to record how one is set up on the table so they can check that they do it the same each time.

The last thing was putting in the tattoos. I mentioned that others had said that it hurt and the tech said it would hurt a little but less than getting a shot. She was right. Two I barely felt and the worst one was less than the prick of a shot or starting an IV. There is one between my breasts and one on each side. She said they use the ones on the sides to check that I'm level on the table. I didn't think about it at the time but in the past I'd heard that they use permenant tattoos so that if you ever need radiation again for something they can see from the tattoos what got radiation before and shouldn't get it again but these wouldn't work for that. They are right-left symmetric. Each one is just a little dot. I can barely see the one in front and haven't managed to spot the two side ones in the mirror.

When she did the tattoos, she also took off most of the pen marks. She missed one little mark but unlike others, I never saw my breast all marked up.

Last thing was a visit with the nurse to talk about breast care. Normally they would do that at the next visit when they take the X-rays Nancy mentioned but I asked to have it today so I would know what to buy. 

I'm to use pure Aloe Vera Gel  2 to 3 times per day. They suggest either Fruit of the Earth or Trader Joe's. Or I can use calendula instead. Also a moisturizer 2 to 3 times a day. They can be put on at the same time. Neither should be used 2 hours before treatment. She said it was important to let the skin dry before putting on a shirt to avoid getting a yeast infection. There is a list of moisturizers to choose from. I already have the Eucerin Daily Replenishing Lotion which I bought for chemo dry skin so that's what I'll start with. If it doesn't do the trick I can switch to Aquaphor.

For  soap they suggest Dove bar or liquid or Basis Sensitive Skin.

And they prefer no deoderant but Tom's of Maine is allowed.

nelia48

Bluedasher, my experience was about the same as yours with the simulation.  The only difference was that each patient has their own head mold made which also has where the arms go above your head - that even your arms are in the mold right.  They had these huge "pillows" full of little styrofoam beads.  When they got me just right , they used a vacuum and sucked the air out of the pillow, making a tight mold around my head and arms.  That's what I lay in each time I go. 

I really like the Eucerin Aquaphor cream.  I'm on my 6th treatment now, and just a little red.  I have the A&D ointment here, and also the Aloe Vera.  I'm using Ivory pure liquid soap to wash with and was told only to use corn starch under my arms, etc.  Works pretty good for a while. 

I did have an unpleasant experience yesterday.  I had the hyperthermia treatment (where they heat up the area for an hour before radiatiation).  While waiting for the radiation, they took my weekly vitals.  My blood pressure was up to 195/110.  I've never had high blood pressure and not on any meds.  They made me stay for over an hour until it went down again.  They asked if I had anyone to take me home, and I said yes (but I didn't really!!!).  I just wanted out of there.  Now I'm worried about that!

CindaD

Bluedasher, I had a friend of mine who is a pharmacist at the hospital check out the trial.  He said it looks really promising and he would do it if he were me.  That's what I was waiting for.  I see my  onc. next week to sign up.  He said the meds have mininal side effects.  The thought of mets scare me more than the original cancer, so I'm going to go for it.

I had more tattoos yesterday and I didn't feel them at all, I think it depends who tattoos you.  I start Monday and go to April 22, WooHoo, can't wait to get started so I can get finished!