March 2009 Rads Group?

Anonymous

Cleared for rads simulation on 3/11!  The drain came out yesterday.

Thanks for all the descriptions. I have a feeling I know more what to expect.

Bette

SusieMTN

When they do a simulator(???) does that require that you not eat breakfast?  Just got a weird message on VM.  Thought she said not to eat breakfast.... I have seen the radiology Oncologist what have you guys found to be the next step, is there something with a CT scan, guess I wasn't paying attention or it is Chemo Brain. 

bluedasher

Susie, the simulation didn't have any fasting requirement or food restrictions.

Mary22

I just finished my first week of rads. I got very sick after my fourth treatment, is this normal?

sgrimes

bette, congrats on getting the drain out!  and on being cleared to start. 

mfgibby - i have done 8 rads now, and haven't been sick. from what i've heard and read, rads should not make us sick.  i'd talk to your doc next time you see him or her,though.

hope everyone is having a good weekend!

dianef

I am getting my tattoos this week.  Glad to hear they did not hurt.  I finished my first week of tx.  WooHoo!!!!!

Nelia````I have not heard of the hyperthermia treatment.  What is that for?

Diane

nelia48

Diane, my tattooing didn't hurt either, as I'm completely numb in that area from the surgery!  I did have some tattoos put on me when they did the CT scan and simulation -- One on each of my sides, just below the ribcage, and one on the center of my belly.  I thought that was it, but when they started radition, they seemed to need three more up in the chest area.  Didn't hurt at all.

The hyperthermia treatment heats up the area that is being radiated.  Takes about an hour.  They heat the area anywhere from 104 degrees to 107.  Feels about as hot as a hot shower.  Supposedly, heat weakens cancer cells, and therefore the radiation is about 30% more effective, so they say.  The radiologist at my cancer center says he is the only one in Florida that does it as it is not cost effective for places to do this because of the time it takes and it requires someone to be with you the whole time.  I consented to it only because they said it wouldn't hurt.  I thought I could always quit that part if it got too painful, or too time consuming for me.  I've had two treatments like this so far.

I haven't burned or blistered yet.  Just somewhat tired.

Cora

FLMel

Is anyone's breast feeling leathery? I've had four treatments and the skin feels different on the breast getting the rads. Should I put on lotion? I've been rubbing in aloe (from my plant) once a day but that's it. Maybe I should use something else?

bluedasher

FLMel, I think perhaps you need more aloe or more concentrated alow than you are getting from your plant. Also you should probably be using a moisturizer.

The rads nurse told me to put on pure aloe jel 2 or 3 times a day and to use a moisturizer 2 to 3 times a day. They could be put on at the same time. Calendula can be used in place of the aloe. She also told me to wait for a bit after putting the gel or moisturizer on to let things dry before getting dressed to avoid yeast infections.

They gave me a list of moisturizers to use including light, medium and heavy.  Eucerin Aquafor is the heavy one and other of people including Niela have mentioned being happy with it. My long post on the previous page mentions some of the other ones.

I think most rad oncs don't want you to put anything on the breast for the two hours before radiation. 

I'm on a business trip this week and start rads next Tuesday after I get back. Before I left, I picked up the aloe vera gel, mild soap and Aquafor so I feel prepared. I'm not sure about aloe vera gel vs calendula - the pharmacy where I went didn't have the latter.

Mamie2

Hi ladies... I think this is my train.... I'll have to catch up with my reading next time... i haven't even begun and i'm tired. Waiting for my radiologist to call me back.

caligrlof68

Hello Ladies...I guess this is also my train. I met with my rad onc today and will most definitely be getting rads....6 1/2 weeks worth. I go back on the 23rd for my CT sim, and will start rads a few days after that if my mx incision is well healed. They gave me a booklet of information and a very thorough list of what I can/cannot use on my skin before rads. I asked him about Emu Oil and he said that or Aloe or Aquaphor....seemed very open to anything as long as it didn't contain metallic compounds. He also said they would provide a deodorant for my rad armpit...luckily for me, because I don't want to smell like a homeless man during treatment!!

Anonymous

My simulation for tomorrow is now cancelled, because I have to have surgery on Friday to remove my expander and generally clean out the surgical area. It probably will look like swiss cheese with all those seromas.

What happened is that I ran a fever and developed more fluid around the expander after the drain was removed last Thursday. Tom and I had to make an emergency drive to Hopkins in Baltimore, MD to see the PS. The PS talked to the rad onc and it was decided the expander had to go.

The surgery will be 15 days before the wedding. I may have drains still. If so, I will buy one of those fancy white pouches you collect money in to conceal them. Maybe I will wrap the tubing with white ribbon? There is absolutely no room under the gown to conceal drains at the top, and it has already been altered.

Life goes on. Today we applied for our marriage license.

Bette 

jessee54

Hi everyone,

I finally had my first rad tx today. I am doing whole breast both sides. It took a little while because they had to do some extra films, I guess some came out fuzzy. Other than that, it was real easy. Relaxing, actually. You just lie there and let them do their thing. The total time today was about 45 min.  My only complaint was with those stupid "johnnys" that do not seem designed for human bodies. Honestly, with all their knowledge you'd think they could design some that at least stay closed in the front!  We have to walk through a public area after changing (another dumb idea), so I just hold my clothes in front of me tightly...one down, 32 to go...

Is anyone halfway through or almost? Do we need to start using the aloe and aquafor immediately?  I couldn't find 100% aloe locally, it had phosphorous and citric acid, so they don't want me using that. Guess I need to make a trip to Trader Joe's.  They did give me a large sample tube of the Aquafor. That was nice.

Other than that, I'm sitting here, braless, wearing a baggy long sleeve T with a short sleeve baggy T over that.  Figured I'd get into good habits right away.

Bette, I'm sorry for your troubles.  I hope everything works out okay, and congrats on the license!  Something wonderful to look forward to!

Nelia, is the hyperthermia treatment still based on theory? I've never heard of it either. I'd love to hear some numbers on that.

Hugs,

Jessee 

dianef

Welcome caligrlof68 & mamie2

I agree with the other ladies  you should use a moisturizer.    I have had 7 tx.  I use aloe and Vita Kara lotion 3 x a day.  I am having good luck so far.

Diane

bluedasher

Jessee, I was told to use both a moisturizer and aloe vera gel (or candula) 2 to 3 times a day from the start. The nurse said I could apply both at the same time.

I think I'll use Aquafor for the moisturizer since it was on the list they gave me and many here seem satisfied with it.

Mary22

Thank-you sgrimes. I did talk to my doctor and he said it was probably for all the anxiety. The day I got sick the machine went down and I had to wait an hour with three children ages 4-8-11. They were getting antsy and I was upset because I was late for work. I have been good since.

NancySchoen

BetteLou..... I have been where you are with the surgery and the infection etc it stinks. I guess we all do what we have to at the time. I am glad you got your marriage license. I would focus on happy thoughts of the wedding. I am sure you will be able to hide it some how. Just remember no one will know but you. They will all be so happy for you they will not see it.

mfgibby..... No wonder you got sick. If I had to wait an hour I would be anxious too. It must have been hard with the childrten I hope that never happens to you again. Can one of your friends keep the children for you when you go to treatment? It is so hard to just go for treatment it would be more stressful with the children.

I just had number 11 today. My skin is doing fine. It is interesting that every center is so different. I am not allowed to put any lotion on at all. I have been using  Johnson and Johnson cornstarch to help with the odor as that is the only thing they want me to use. Actually if you put it on enough times duuring the day it does help. I keep a small container and make up brush in my purse.

Is any one else feeling really exhausted? This started on my 9th rad tx and now if I do not take a nap I get sick. Of course for me that is because I normally have migraines and being tired triggers them even when I am not having rads. So every day I end up sleeping for 2 hours. The doctors said that I must listen to my body and rest. That is hard for me with my A plus personality that wants to be doing something every minute. I am exercising in the am and that has helped.

Hope every one has a good day tomorrow. Nancy

karen43

Nancy, wanted to check in today and see how it was going since we're on the same schedule. I am getting red and the nipple area is getting sensitive now. Today's tx seemed to last longer so I think I got a bigger dose. I was ready for the break this last weekend and I'm afraid it's going to be even worse this coming weekend.

I did find a deodorant at our local health food store that I'm using (Queen Helene Aloe Vera). It seems better for me than the cornstarch for controlling odor. The clinic gave me aloe gel to use every day and I'm also using Eucerin or Cetaphil once daily. But nothing 2 hrs before tx they said.

As for the fatigue, Saturdays have been bad the last couple weekends. I just don't want to do anything but sleep in and then laze around the house. But come Sunday I seem to be recuperated.

Anonymous

HAPPY BIRTHDAY, SAM!! ( Woorus )

Mamie2

Is it a good sign when you call the radiology folks and ask them if they scheduled you yet and they say, "You're appointment is 2:30 today, didn't anyone call you? That was Monday. So I finally met my radiologist and he gave me the choice if I wanted to do the shorter version (Canadian) or the standard version. I chose the shorter. Then he said something about IMRT. Gals. I have to go look that up. I need to go to bed cuz my simulation is in the morning. I hope everyone is hanging tough. Today my breast surgeon says i'm good to go til December!! YAY!! That's after he asked me what my plan is to prevent recurrence..... rads, arimidex, healthy eating and exercise....(and a few supplements) (Thanks Fishbride!)

NancySchoen

Karen,,,, It is good to have someone on the exact same schedule. I noticed that Monday I had a little more energy. I wonder if that is because on the weekend I just relaxed. It must just build up all week long so that is why on Saturday we are so tired.

I have number 12 today. So I am still maintaining my skin fine. No breaks etc.

Hope you have a good day. Do you work outside the home? I do not as I am 57 and I work with my husband at home on a business that we have here. I can't imagine working , having children to watch as many of the other women do on the list. I have limited having the grandchildren over to 2 hours because that is about the max I can do before exhaustion sets in for the day.

Nancy

CindaD

Hi everyone,

Yesterday I asked my rad onc how they blocked out my heart, my chemo wasn't the heart damaging kind and I want to keep my heart healthy.  He showed me my tx plan on the computer, it had a cross section of my tx area and the beam goes right, and I mean RIGHT in front of my heart, I don't move during my tx, now I'm going to be a statue!  It freaked me out a little, otherwise no worries.  I can't wait to get my life back!

Brenny

Just my first week of 25+5 boosters; however, our facility encourages you to bring your own robe if you do not like the ones provided by the center.  I have a cotton 3/4 robe that I take in my bag along with my aloe.

Mary22

Nancy I wish there was someone. My family is in CA,MI,TX,FL, they would help in a heartbeat. My friends have young children that go to a different than mine, they did offer to help. My husband has to work and his employer will not let him come in late and stay late to make up his time and his family is too busy. I just deal with it one day at a time and say to myself "It's all good" the kids have been wonderful.

SusieMTN

Well, this is my train so I am jumping aboard!  I had CT scan and  tatoo's yesterday (too numb to feel them), and will have my simulator on Tues the 17th and start radiation the 18th. 

Does anyone here have sensitive skin under normal conditions?  I get contact dermatitis at a drop of a hat so most if not all creams will cause a rash.  I usually use plain organic coconut oil from Whole Foods for dry skin, has anyone use something like that?  I assume as long as it contains no metals it will be OK.  I will check with the Radiology Oncologist but thought I'd ask you guys first. 

karen43

Nancy...I am getting red & the nipple area is sore. I went to the store to look for camisoles to wear and notice my breast seems to be drawing inward around my lumpectomy scar. Anyone else notice that? I hate this more each day.

My husband and I own a small business too. It's not home based though. He got an outside job 2 yrs ago with good benefits and good insurance (thank God) but that left me to manage the business on my own. He works avg. 50 hrs per wk. It has been rough on me with the economy & all these health issues. I have a 21 yr. old daughter who helps me ALOT and a 10 yr. old daughter too.

I was reading another section earlier about rad creams used. I think I might look for the calendula products to see if that helps me.

NancySchoen

Karen.... I have the same thing around my scares, I had two separate surgeries. The skin is drawing in where they took out the mass. I agree with you about hating this more each day. I have had a few melt downs lately of just crying as it all seems too much.

I have two boys 30 and 35 who are married. The one has three children two boys and a girl. My other son has one boy and a little girl to be born on the 16 of June. He is in the Army and will be leaving for Iraq in May. So that has not helped my stress level that is for sure.

I have just been wearing loose cotton t shirts at home. That seems to help as I find that if nothng is rubbing against the area it is better. I can't imagine having a little one at home and working you must be pretty tired.

It is interesting that you mentioned the economy, that in itself is a stressful situation. Our business has suffered from the current circumstances. It is no wonder I take effexor.

Hope you have a good day today. Are you feeling exhausted? Nancy

lexie4040

Hi Caren,

I have a condo in Estero  Fl. but could not go this year because of my bc.  I have 2 more chemo treatments left.  Thanks for this site because I start 33 rounds of rads after.  I'm more worried about the first time lying still for 45min. or so because I don't like to be closed in.

Jan

Anonymous

Well! I had my CT and markings done, complete with three tiny dot tattoos! I go back for xrays and the complete simulation on the 19th in the evening, then start rads on Monday the 23rd! Hurrah! My personal train is scheduled to leave the platform!! Woot Woot!!

thegoodfight

Hi Jan, or should I say hi neighbor.   Where is your Estero condo?  I am in The Cascades on Estero Parkway.   Maybe we can get to say hi one of these days,   Jot down my number, so you can give me a holler when you are here.............239-947-2994.

About the rads..........................try not to worry, it really is not that bad.  Today I had #33 out of 35, I finish Monday...............yipee!!!  My skin now has gotten a tad uncomfortable under the arm at the SNB site, but I am hanging in there,

I do not remember the  having to lie still that long for the tattoos and sim and the treatment themselves are usually around 10 to 15 minutes, so very doable.

do not send yourself into a worry tizzy, we usually imagine things much worse than they turn out to be.   You just need to concentrate on finishing your chemo, the rads will fall into place

Come on down and visit............................Caren

PS   Where is home?   I am now here full time and love it!  By the way, the cancer care is also top notch, so don't ever hesitate to have treatment here.