MAY 2009 Rads

Hi, ladies!  I too am post menopausal, but have been for years - due to ovary removal in 1997 (hyst. in 1991) due to endometriosis.  As I'm E/P positive and HER2 negative, I think I'll be doing Arimidex following rads.  I was on estrogen/testosterone for the last 2 years, which is what I think contributed or boosted my chances of getting bc.  I stopped taking them immediately on the day I was diagnosed, which was a bummer only because I had not been on any hormones for a long time, I had trouble with se's, and this one made me feel great.  So, I was bummed but not surprised I started right back in with the hot flashes.  Try black cohosh - it's what I use, you can get it at the drug store or grocery store.  I take it once a day, because I don't get the severe night sweats anymore, but you can take it twice a day (I used to) and it does help, and contains absolutely no estrogen or estrogen-like substances (like soy does).

Thanks for the compliments on the photo - I love my pony-tail hat.  Its so easy on the weekends to just pop that sucker on and I've got my ponytail back!

For me, going back to work wasn't an option - I had to for both monetary and mental reasons - I need to be busy - otherwise I go nuts!!  Plus, as a marketing manager, I've got several projects I'm juggling at once, although chemo brain has slowed me from a multi-tasker to maybe a dual-tasker!!!

Bold....I will have my second infusion of Herceptin on Thurs.   The first one left me aching really bad....just the day I got it.  By the next day I was fine.  LOTS easier than the chemo. 

Getting ready to go for my second round of RADS.......

hugssss

LOL....ivorymom....that's what I said about the tats too!!!    I made it 49 years without a tattoo.....then had to get cancer to get some!   Maybe I'll get brave and get a real one now......lol

moonwolf.....I'm so glad you posted this.  I seriously thought I was losing my mind.  I've had two rads and I'm getting very sore and tender.  Most people don't have this until at least half way through.  I thought it was just my imagination. 

Last night when I rolled over on that side......it felt like my skin was being  pulled....it was so tight.

I guess everyone is different with different types of skin.  I kinda thought I would end up being one that it bothered really badly.  I've had different things goin on with my skin all my life (eczema, dermatitis, hives....that kind of thing) but I thought it would be much later than this.

Genia

Still waiting to hear when I start. I had my planning session a week ago yesterday. They called and told me they hadn't forgotten about me, but were waiting for the doctors to come up with a plan. That makes me nervous -- like maybe there's still more cancer there than usual, even after all that grueling chemo?

Hi, all.  Had my sim this morning and it was completely uneventful, with the exception of I now am tatooed too - and thought I'd never get one, let alone three!  The only one that hurt was the one closest to my chest bone where the skin is really thin - and it only stung a little.  Set up for my first rads on May 12 - they said it would take the longest, and from there we'll shorten up the times.

My rad onc said to use aloe vera gel every night, nothing on before treatment.  Make sure your antipersperant does not have aluminum - I switched to Arm & Hammer.  They also said mild soap for the breast area getting treatment, like Dove or something mild and gentle.  Also, the underwire bras might cause rubbing pain or if the bra is too snug it might hurt the treated skin, so guess I'll be looking for some non-underwire bras to get through treatment with.

Getting port out on Friday - cannot wait.  My rad onc, who is part of the trio of doctors caring for me, was very sympathetic and upset for me that I had so many issues on chemo - he said he's never seen anyone get so many side effects and complications, so he's well aware of how sensitive my body seems to be to things and I think they will be very much on top of anything happening side effect wise with the rads.

Talk to you all later!

Just got the call: I start rads tomorrow. I was told they'd give me a sample of deoderant they recommend. As for moisturizer, they recommend a vitamin E and collagen creme available at Sam's called Gene's.

Bold, I hope your consultation went well.  I was nervous before mine too!

Texas, good luck starting tomorrow!  I have my simulation next week and the doctors told me that I would start rads a week or so after simulation because they have to do a bunch of calculations and work to figure out your treatment once they get the information from the simulation.  I don't think it means anything bad.

Genia and Moonwolf, hang in there.  I hope your skin issues stay manageable.  It does sound like rads has dramatically different effects on different people.  I'm worried because I am fair and have D cups (I hear the side effects can be worse if you have bigger breasts).  But who knows ...

Speaking of D cups, does anyone have any suggestions of comfortable non-underwire bras for bigger breasted women to wear?  I got a couple at Walmart for the lumpectomy (and also got a couple of sports bras without wires) and I'm hoping they will be good for rads too but not sure -- maybe I will need something looser?

I am nervous about rads but keep reminding myself that it is only for a few weeks ... hang in there everyone!

ivorymom;I know you're anxious-but you're right- I'm eager to get it over with too.Yup that hormone rollercoaster can make you crazy, ask my long suffering husband.Good luck with your first appointment. I'm sure he/she will be excellent. Mine is great.Let me know which drug you're randomized to.We can compare.

lisalisa: Yes, I'm taking it once a month! Are you in the study? Maybe we're getting different dosages. Otherwise one of us is getting overmedicated! When do you start? I'm starting sometime this week as soon as the study researchers mail it to my oncologist.I'll let you know what dose I'm getting. The study protocol says 4 mg.I had to go to dentist too- part of study requirements because drug has possible side effect of osteonecrosis of jaw.My dentist says very rare and usually associated with dental work. So your plan to do all you need before you get the drug is good one.Love your picture too. Your little girl? So pretty.

Debonthelake: The days will go fast until you get the simulation.Glad to hear you're not on that hormone roller coaster. I'm guessing you'll get Herceptin to help with your triple negative? I have dry run Friday then start on Monday. I'm getting anxious. Worried about fatigue and burns. Rejoined my health club today to push myself a little harder. I've been doing treadmill for half hour 5 days a week and yoga 1 or 2 times a week to get ROM in shoulders back( I had axillary node dissection along with bilateral MX.)and general return of flexiblity, which had gone to heck from laying around for a few days after each chemo and after the surgeries. The club is literally on my way home from the medical center where I will receive rads- so even if I'm dragging I'm going to stop there and do something- even if it's just a few laps in pool. I miss my aerobics classes. I'm hoping to get back into some of the easier ones soon.  

I'd love to hear from anybody who does not get much fatigue as we all go along with the rads and anyhints for keeping it at bay.. Thanks!  

Hi Rad sisters:

Went for consultation this morning. Was there for 3 hrs??? Anyway I have to have a mammogram tomorrow at 1:30. She wants to make sure there is no cancer. (great) I have my sims on the 21 and start rads on 26. Looks like I will be one of the last ones finished just like chemo I started the 29th of the month. The good news is that I will benefit from all your wisdom. One interesting thing is I had a micro met in one of my nodes. This seems to be a bit of a gray area with radiation.as whether to zap it or not. They will put it to a vote at the tumor board for there recommendations. I am kinda sad about the fact that I will have  discoloration on my chest from the radiation. My tumor bed is the top side of my breast so I guess it makes your skin permanently darker. Bummer! Also she told me that I would have scar tissue in my lungs that I will forever have. Just keeps coming. My nails are getting worse everyday. I hope to hold on to some of them. Herceptin on Monday gave me diarrhea and I am swollen two sizes. However this to shall pass. Thanks for letting me vent. I try not to express my diatribe of negatives to family and friends. They have enough on there plates worrying about losing me. (which is silly I am not going anywhere.) I have to say it was kind of weird talking about recurrence today like it could happen. I have repressed the thought and would like to keep it repressed. I bet cha that the mammogram is going to hurt as I am not completely healed from a giant lumpectomy. OH BOY! Remember when your mom said if you do not have anything nice to say don't say anything at all. Well I guess I would not be able to express all this junk. I still think that this is going to be a breeze compared to chemo.

Peace

Hi, everyone,

Sims is on Monday.  I've had fair skin that was allergy prone and rash prone my whole life. I burn easily and used to get sun poisoning as a child.  I know I'm going to burn.  But, I've done it before. I can do this.  

My husband says there is some research that is indicating that regular exercise during radiation helps decrease the fatigue.  I'm planning on going the the health club frequently during my radiation.  I'm a bit afriad of the chlorine in the water irritating my irritated skin.  So , I think I'm going to pass on the pool.  I did read somewhere that if you want to get in the pool to protect the area with vaseline.

We'll get through this.

BOLD,  so far I've lost 2 fingernails and I'm sure most of the others will follow. It's awkward trying to do things, and not too attractive, but not as bad as I imagined either.

Cruise4life: I've also read that exercise helps to combat the rad fatigue. I keep pushing myself but I'm not even close to being over the muscle fatigue caused by chemo. Or the water weight gain, which my nurses say is probably from the steroids. I'm also going to insist on a bone density test and cholesterol test before taking estrogen blockers -- I don't want any surprises and I want to know where I'm starting from.

Today's the day: as soon as I find out what kind of deoderant my radiation oncologist says it's okay to use, I'll post it here. Maybe y'all can ask about it?

Good morning: Texas: was there a nail underneath? Was it the entire nail or just the tip? I was told to use Toms deodorant. She wants me to stay away from alcohol in products (not to drinks).

Mammogram today is going to hurt! I still am tender. YIKEES!!!!!!!! I had all the pet ,cat bone dog, scans prior to chemo. All clean. Except for a little problem in lower back old injury. And a few lesions on my liver which everything seems to think is normal for my age.( Margaritas?) Not cancer related but still is a little freaky.

Did any of your rad Dr. tell you that you will have permanent scare tissue on you lungs? I hate that.I am repeating myself sorry. American: They found the micro met in my pathology from the Sentinel node biopsy (SNB) that was performed during my lumpectomy. They can be a displacement of cells from original biopsy or from surgery. Or heaven forbid indication of the cells leaving the tumor-site and traveling through the body. Gulp! It is gray area for radiation, some believe that you treat it as node positive and others treat as node neg. The ultimate decision is mine. I was also told that it would not effect my overall survival. What does that mean? I am guessing that it means that they consider recurrence and survival different. Oh I hate this.

I am feeling better every day 24 days from last Tx. Still do not have my taste back but energy is coming back for sure.

I hope everyone has a wonderful day. I'll check in after mamm.

Peace

Bold, my doctor told me that about scar tissue on lungs.  So did a family friend who is a radiation oncologist.  Both said it is very minor and shouldn't create problems in the future.  I hope they are right!