March 2009 Rads Group?

Vegetable/Sandbag, I mean Catherine... yes, that is adorable about you and the kitty!  

Now about the Tamoxifen, check out these two studies:

Buchholtz Medical Group cites Susan Love's Tamoxifen Side Effects Study 

Breast Cancer Prevention Trial 

The critical point of these two studies in terms of side effects is that the placebo group had the SAME side effects!  Except for the hot flashes and vaginal discharge.  So there is every reason to believe we'll be the same bitchy pre-menopausal people we are or would be anyway for the next 5 years.  There are other studies that say that if you have the hot flashes then the recurrence risk is even lower.  So when we embarrass ourselves in a public schvitizing sessions we are going to be HAPPY because it means less chance of recurrence!  

Yeah the mental fatigue does provide a bit of a vacation and yes the nights do come with weird thoughts.  That's a good time for Xanax or similar, like a cuddle with the kitty.

Yeah on the one hand I never took so much as an aspirin, like maybe one or two a year.  I got a couple years on you, so my period has become a royal pain, and i started having to take some motrin or advil, but again, maybe one small package a year.  During RADs I ended up eating them like M&Ms.  But on the other hand, I do have to take Nexium, and I take vitamins and my doc just told me to take some iron... so I figure I will just through the Tamoxifen in there, everyone says its a small pill.

Just in case the weight gain becomes my fate, I am doing all possible to lose as much as I can before I start.

When you got all this, I will tell you about the Zometa.

Far out your bday is the 28th!!!!  Now I have friends with bdays on the 28, 29, and 31st!  But I gotta tell ya you have to do SOMETHING on the actual day. Its enough to get phone calls and a card or a gift or soemthing, you don't have to actually have visitors but do have contact with a human somehow.  PM me your email and/or phone #?  And/Or I will mine, and I have AIM, just to say hello and mark the day.  Trust me, its important for your sanity.  On another thread a gal tried to do what you're thinking and it really bummed her out.   Mine was similar again- my bday was Thursday and I got with people on Sunday, but if I hadn't had some little contacts on Thursday, it would have been rough.

You'll make it to the brunch- as long as there no more emergencies like the cat.  If you are again, like me, you will probably get there around 3pm.  But I had to organize the kid and it was hot and humid... so you might make it earlier. 

Hi Gang..haven't posted for a bit because I was out of town and did not even look at a computer.  Congrats to all who have recently finished rads!

Rachel and Catherin, love reading your posts...they brighten my day.

So...here's the thing...I got through chemo without any real problems (ya lost the hair and all but no big deal), got through radiation without to many issues and while I did have skin breakdown, it certainly was no where near as bad as some of you experienced...what's with this post treatment FATIGUE!!!!!  Man oh man..I am eating really well, working out, my sleep is no worse than it was prior to BC.  I have always been a very high energy kinda gal..and now..I feel that I could sleep 24/7.

Worked through both chemo and rads and NOW I feel that I could take months off and just sleep.

Jeanne, my breast never looked bruised but 3 weeks post chemo it was still tender and swollen. And at that point the one spot where I burned (under my arm) was still red and stinging quite a bit at times especially toward the end of the day.

By the start of week 4 after rads, the swelling was gone and all but the last little part of the burn (less than a square inch) was healed. I could wear a bra comfortably at that point but I still couldn't sleep on my stomach because the breast was still slightly tender. It took about another week for the last little bit of burn to heal and the last of the breast tenderness to go away. My burn was only 1st degree - no blistering.

Putting antibiotic ointment and hydrocortisone ointment on the burned spot helped and I kept moisturizing the rest of the breast. I also took a bit of anti-inflammatory (Aleve) which helped the pain, swelling and tenderness. 

Martha...bubbie...I was wondering how you were doing all the work you've been doing, the meetings...  Seriously, your updates on Facebook (which I've been on from bed most of this week) left me really impressed that you had all this energy.  Of course I would rather you had managed to avoid the whole fatigue thing, but I feel a little less the slug...okay not really, but at least a little less lonely in the land-o-slugdom.  Plus you dealt with major bureacracy this week.  Mentally, I would have been like: "Eh...you guys figure out the paperwork.  Yeah, sure send it to me whenever..." 

It's really hard to explain the fatigue to people, I find.  Mostly because if I'm out with other people I want to enjoy their company and enjoy the time in as normal a state as possible...which takes a lot of energy.  The old me had a lot of energy, I discovered.  Even on the phone, it's like a switch goes on and I sound like I have way more energy than I do.  Then when the call is over...zoink...where's a pillow?

Jeanne--Sorry to hear about the bruising and pain.  Maybe a few times I have noticed a sharp little pain in my breast...but it's over by the time I recognize it for what it is.  But my onc told me that might happen as the nerves that were radiated start to heal.  If you're three weeks out from rads, you should be having a follow-up with your onc fairly soon, right?  Hopefully they can let you know what's going on with that.

PurpleMe--See, the fact that you worked and worked out during chemo and rads is amazing to me.  I think I actually atrophied since I started chemo in January.  I also think there's something to the rad-brain versus chemo-brain...or maybe they're both just linked to the whole fatigue aspect.

Ooh, also on this site, I can't remember where I read it now...but one of the articles linked the feelings of completing treatment to post partem depression so if any of us are feeling a bit disengaged...like moi...that cold be part of it.  I've never been one of those "misery likes company" (LOL like who would ADMIT to that even if they were?), but knowing that there's a reason for feeling this low energy and disconnected...and that others are there too?  Well, it helps mentally because then I'm less prone to beating myself up about it.  'Cause trthfull, I've been a total slug all week.   Lately at night I get put out at the thought that I have to get up and brush my teeth and moisterize.  Isn't that pathetic!

Wow...now I'm really tired.

Catherine

Hi ladies.  Don't everyone throw their mouse at me but I feel great.  The Tamoxifen doesn't seen to have any side effects other than the hot flashes and night sweats.  I guess those are side effects but I've gotten used to them through chemo.  My gyn called my onco to recommend that I have my last ovary removed so it looks like I'm not done yet.  I told my gyn that I wanted it done asap.  I need to put this behind me.

Happy birthday Catherine.

Nelia48...I'm on Arimidex as well and so far no major SEs.  I am getting the hot flashes - some through the day and definitely in the evening.  I've been blaming it on the coffee I have in the morning.  Keep saying I am going to stop drinking it to see if it makes a difference but I sooooo love my Starbucks!  It would be interesting to know if there are any "no coffee, tea or soda drinkers" out there who are on Arimidex and if they are having the hot flashes.  Think I will post this question on the Arimidex thread and see what responses I get.

I've noticed that my boob and the scars look fantastic.  I can hardly even see the scars.

You are right about the fatigue.  Of course, people think you should be as right as rain now that everything is "over".  Took a sleeping pill last night - had a FAB sleep and today I feel so much like my old self I can hardly believe it.  Certainly do not want to live on sleeping pills that's for sure. 

Stay strong!!!

Well, dang nelia 48...while I was kinda hoping (althouth not hoping very hard LOL) that giving up the coffee would have made a difference with the night sweats...I was also hoping that it wouldn't make any difference.  Ah..I am so conflicted when it comes to my coffee... .

All I can say, is that the folks who don't get that it's not "over" just because treatment is finished should just put a sock in it.

nelia, I don't blame my friends for expecting it to be over because I too keep expecting it to be over.  My measly little lumpectomy and RADS is nothing compared to your treatment, and my RADS were over on the 8th of May and today I slept until 230pm again.   Like, in one way, it's over.  In another, it's not. And in another, it's not.

It's over in that I dont have to see a cancer doc in a long time, and even then I expect it to be nothin more than hihowareya and zometa.  I don't have to think about cancer.  But I do.  Preparing.  And still getting terrified over one thing or another, sitting up all night reading studies, forums... I just HAVE to know.

It's not over in that I do have to do the hormone thing, Tamoxifen and Zometa.  And I should be grateful, as my triple neg sisters have a couple years to face the wheel of fortune, with no free passes.  (Triple negs remind me of the Galaxy Quest scene where they run through the "chompers")

And it's not over because it's cancer.

Carol, I thought you were on Tamoxifen- so it's Arimidex?  

Again, I can't blame my friends for not knowing it's not "over" because I didn't know it before I got cancer.  They always say so and so "beat cancer", "fought cancer for X years" etc in the press.  Even in that interview with Melissa Etheridge Stone Phillips says "so now are you cancer free?" and she tries to tell him but ends up saying she is cancer free "in every detectable way".  So I am.  So was I after surgery before RADS.I had a PET scan.  But then the PET scan can only find cancers larger than 1cm.  So if I have cancer on my bones or liver or brain, it could still be there, just smaller than 1cm.  I don't know but I'd guess a cancer that is 1cm on my brain would be a very bad thing.  And so would 1/2 a cm.  Or 1/4.  Even in my boob again.  And then we don't say to them "well once you have cancer of any kind you never actually know if its gone" because we don't want them to look at us funny for the rest of our lives. 

I tell my friends that as far as I know it's over, that everything I did after surgery was to prevent it coming back and that I will start the hormone drugs in September to also help prevent it coming back.  I usually also tell them what the % chance it will come back is.  That shuts them up.  Then I tell them the Tamoxifen will probably give me hot flashes, at which point they always name a friend or themselves as example of how normal that is, and how well they will handle it.  I tell them if I have a hot flash then its a sign that the chance of recurrence is even lower, so while we're sitting together sweating and peeling off layers in public, I'll be celebrating because it means less chance of cancer.

And then there's the part where I no longer give a shit if it bothers them  

nelia..I echo Rachel's comments about crap timing - calling your sister late on Friday so she has to worry all weekend.  Fingers crossed that it turns out to be nothing.  Hope for the best!

Rachel - yep on Arimidex..only prescribed to post meno chics...lucky me LOL.   Like you I figure if it gives me a better chance of not having a reoccurence then "bring it on". 

Hope everyone is having - or at least trying to have - a great weekend.

Carol

It's like on one hand if the news will be that the doc just wanted you to come in earlier because they have a golf game on Thursday you'd kill them - but wouldn't have time because you'd be so happy for good news, and if it's bad news, ya can't kill them because you need them.

There was the BRAC gene test results they promised to give me the good news immediately if they had it but would hold off over the weekend if it was bad news, instead she waited until after the weekend and 2 more days to give me the GOOD news because... she... forgot... and didn't look at her notes.  Even on the phone when I called her about something else and she said Oh, I have your test results do you want them?  I said yes, and she still hesitated and said, do you want me to give them to you over the phone now?  All that when she knew the results were good.

I could snap her neck and drink her blood.

I have finished radiation treatments, but, I still have some discoloration, kind of red, where the 12 boosters were given.  Has anyone else had this or does anyone else have this?  My radiation oncologist said it was common.  I thought it was still just some burn, but, he said it was called hyperpigmentation.  HELP!  I just need to know I am not the only one!  Thanksssssss! 

Nelia, I'm sorry about your sister.

I haven't been tired after radiation. I've been really lucky with it. Even during radiation, my energy level was pretty normal. Perhaps not having hormone treatment helps.  I hope that the tiredness ends soon for those who have it. 

Jeanne, the area around my lymph node scar where I burned has stayed dark - it is more red than brown.

Hi Kristi- it was really good to hear from you!  Yes, working out feels good, it doesn't seem to be doing much regarding my fatigue but oh well.

Hello, I finished my Rads in April(tax day to be exact). I am still tired, not sure if it is the tamoxifen, the Effexor XR, or allergy season. I just got over a sinus infection and all I want to do is sleep.

Rachel, yes I think my computer is on Tamox or something stronger, it froze 3 times on yahoo mail. It was going slow on Myspace and Facewbook too. So far this site has been good today.

I have not been on the site for a few days, ihave been busy trying to geet my house somewhat in order. School is almost out and I can not wait to be away form work. The women I work with are so catty it is pitiful. I thought all that stop at a certain age. One girl always ahs to have a drama and the other is just a two faced witch. Maybe it is all me and it is the tamoxifen talking , who knows.