SEPTEMBER 2008 rads group

nancy258

pattyk, thanks.  Yes, we're close!  You'll beat me by a couple days.  I'll finish the boosts Tuesday same day as Kim.  When I got up this morning I noticed my sore spots looking a little less raw and a little more dry, so I hope that's a sign of healing on the way. 

You're right about the support this board has given me.  As great as my husband has been, it's not the same.  He always asks how I'm feeling when I get home from work, but I can kinda see his eyes glaze over if I go on too long or in too much detail about my obsession with all that is cancer and radiation and everything that goes with it.  So I try to keep it short and find other more interesting conversation to give him a break.

PrincessS, congratulations!!!

princessS

Thanks girls!  It's going to be really weird today @5pm when I'm not at radiation.  I actually have to go back to making dinner now, my wonderful husband has been doing it for the past 6 weeks.  (Weekends excluded).  My skin feels fine and I even wore an underwire bra yesterday, that's how fast the skin is healing.  I made red velvet cupcakes with cream cheese frosting and brought them to the techs.  But there was a new girl and one of the regular ones.  The only thing I want to pass on to all of you still going through this-I think I had an easier time with all of this due to 1)Silvadene and 2) exercising the whole way through.  I look forward to continue reading and following the rest of you as you finish!  It really did go by so fast.  Now, on to the next hurdle.....jumping on the tamoxi-train:(

roberta37

vhqh - that's awesome and I'm sure you will keep surprising them.

princessS - I'm with you on the exercise - I've been trying to do 25 minutes a day and have to push myself when I'm really tired but it does seem to help.  I am feeling the fatigue more right now so I'm not sure if I'll keep that up to the end.

Only 7 more to go for me (28 total).  I'm pretty red right now and event though I'm not really itchy it does bug me under/near my arm.  I just keep putting on the cream and next week I think I'll be without the bolous (sp?).

Nancy258 - I think it's really overwhelming for the people around us and having a place like this to turn to for us gives them a break.  Nobody can understand better what we are going through than those going through it also. I certainly had no idea what this journey involved.

  

NancyD

Go, V! Knock those mets back to NED, where they belong. You're halfway through the WBR...and only dealing with a litle fatigue. That's super! With all those wonder drugs you're taking, I'm sure there will be very positive results all the way.

So what are we all doing for Halloween? I'm still thinking I'll dress as Uncle Fester from the Addams Family. Not enough hair for anything else :-(

My daughter wants to be Poison Ivy and I'm supposed to help her with her costume, so-o-o off to look up what she looks like (not the Hollywood/Uma Thurman version).

Makratz

Nancy258 and Roberta and I'm sure several others,

I completely agree with you that this board has made our journeys a lot more bearable.  You all have been so helpful to me!  This is a GREAT place to come to when you are down in the dumps, don't feel like venting to your family/friends, or are worried and don't want others to worry more because you're worried....does that make sense??? Probably not but I bet you know what I mean.  Thanks so much to all for listening and sharing what we are going through. 

PricessS - I love that you call it the Tamoxi-train, I will be climbing aboard next week.

NancyD, Have a blast on Halloween.  Post some pictures for us to check out!

redheadace1 - details please!!

vhqh - keep surprising everyone, you are in my prayers!

3 more boosts to go, then I'm done! 

redheadace1

Hey, there. So I went to see my oncologist Tuesday. Before I even met him, at the beginning of all this, I heard people rave about him. One woman told me, "He is a saint." Well, after Tuesday, I'm inclined to agree. Even though he was running an hour and a half behind, it was ok, because he and his assistant spent at least an hour with me! I went in with a whole long list of questions and concerns about the Tamoxifen, and my boss (who is an MD) went with me for support.

Just in case any of you is dealing with any of these issues, here were the things I asked about, and what he said:

Concerns about Tamoxifen:

I have a huge fibroid that may or may not need to be surgically removed. I asked whether the Tamox would make it grow. He told me that Tamox does not make fibroids grow, but that they can appear to be larger because the tissue that surrounds them sometimes thickens.

I have vasculitis in my legs; I was worried about clotting. He said that clotting is more of an issue for older patients.

I have severe depression and am reluctant to go off Wellbutrin.  He said that Wellbutrin might interfere with the Tamox, so I'd probably have to switch to Effexor.

I have a lot of testosterone. He said the Tamox would have no effect on that.

I have narcolepsy and severe fatigue. In fact, I'm on disability because of it. The fatigue will definitely be an issue with the Tamox.

I also have a tendency toward high blood sugar and high cholesterol. He said the Tamox would not effect my blood sugar, and that it probably would improve my cholesterol.

He discussed all of this patiently with me, admitting when he didn't know something (so rare for a doc to do that), and checking into things for me. Ultimately, he was concerned about the possibility of mood change and the fatigue. He told me he thought I could manage it if I was closely monitored.

You all can see what a physical wreck I am! So many issues to consider. 

After we discussed all this, I asked him if he thought I should take the Tamoxifen. He told me that quality of life issues are very important, and that since I had a very low grade, small DCIS that was completely removed with lumpectomy, he wouldn't push me to take the Tamox. However, I have enough of a family history that we decided to do the BRACA testing. If the results come back positive (which I doubt they will), he will want me to take the Tamox. If not, it's up to me. We're not sure that the benefits would outweigh the drawbacks in that case. 

So, assuming the test comes back negative, I could conceivably choose not to take the Tamoxifen. The problem is this: I'm the type of person who, if I don't take the Tamoxifen and have a recurrence, will pound my head on the wall and berate myself for not taking the damn stuff! Argghh.

What do you all think? I think what I might end up doing is checking into a low dose of Tamox, if I can (someone posted a study about lower doses being just as effective, but I forgot to ask the doc about that). Then just see how I do. If things get rough, I can always quit, right? 

Anyway, I have a month till the BRACA test comes back and I see him again. He says there's no reason to rush the decision. So I guess I'll just read and think and listen to what the people on this board have to say. I'm probably going to put this post on the general DCIS board as well, to see what kind of feedback I'll get.

So many decisions to make!

I'm glad to be done with rads, though. But my breast has been hurting more since I finished. Really sharp pains. Anyone else having this?

V--I'm glad to hear you're doing so well.

Sorry for the long post! Hope everyone has a great finish to the week.

Thanks,

Ace 

P.S. I thought this was encouraging: He told me that in the near-decade he'd been practicing here, no one had died of a blood clot or contracted uterine cancer as a result of the Tamox. 

mzmiller99

Ace,

Woo Hoo!!  It sounds as though a huge weight must be lifted from your shoulders!  The lower dose of Tamox sounds like a good deal. You won't beat yourself up one way or the other if it is tolerable for you and strong enough to do some good.

I went off Zoloft for Effexor.  The pharmacist insisted I had to be weaned off one before I could start on low doses of the other.  Not so good.  There was a week or so when I was just about ready to do something regrettable, with all of the treatment, work, and family stress.  Try not to do it that way, if you can.

Have a much happier weekend.

Susan

princessS

Redheadace--Thank you for sharing that info.  I am just waiting until they call me for my appt. w/the oncologist, obviously I'm not pushing for the appt. and just waiting for them to get a hold of me.  Sounds like you have a fabulous dr.!  Please let us know what else happens.

nancy258

Roberta, I'm amazed where this journey has taken me.  I'm learning every day.

Makraz, right on.  Makes total sense.

NancyD, I'm going to a Halloween party tomorrow night.  I have a fake mustache, hat and a bandit mask.  I'm going to wear a long trench coat with a bunch of snack sized bags of Fritos pined to the inside and go as the Frito Bandito...LOL

Ace, you have a lot to consider.  In a visit to meet my onc before rads he said he would be okay if I decided I didn't want to take tamoxifin.  However, my DCIS was large and high grade.  I feel really lucky to have caught it early and be in the position I'm in.  My mother and a cousin both died from breast cancer, but I haven't had BRCA done, yet anyway.  I'm kinda dragging my feet on that.  My 29 year old daughter has been on me about it.  But with or without BRCA, I've already had it once.  I also would bang my head against the wall if I decided not to take it and it was the wrong decision.  There's just too much at stake.  I never want to go through this (or worse) ever again.  I've decided I'm going to bit the bullet and take it and try to deal with and monitor any side effects.  If I run into any major problems, then I might rethink it.  You have a lot of unique circumstances that you'll have to weigh.  I think at some point, the answer for you will become clear to you, and you'll know what to do.

TexanCupig

Good morning, y'all.

Ace, it's good to know that your onc hasn't seen anyone die from blood clots or got uterine cancer from tamox!  That's a load off my shoulders!  Other than that, I don't think I've really had any serious SEs; except, my hands are a little bit stiff in the morning, when I get up, and I think I had a twinge of depression, when I first started taking it.  What I'm wondering though, if my fingertips are still numb from the taxol...

Congrats, princessS!

Well, I went to surgery, yesterday, and got my port taken out!  I feel a little bit sore, and my skin's a little itchy, because the doc said not to take the dressing off until tomorrow!  The spots that are getting radiated...THEY ITCH LIKE THE DICKENS!!!  My doc said to take either the pain meds I have, or ibuprofen, since the itching is a pain response???  That, I didn't know.  My armpit started peeling, so now it looks like the color of the preview, submit, cancel buttons to the right.

Today, there's going to be a luncheon for us native women, who've had mastectomies, so I'm kinda stoked about that...my chance to take a lil' break from the hospital scene, if only for a minute...Then a friend of mine wants me to go with her to AFN (Alaska Federation of Natives), so we can watch Eskimo dancing; I can't wait to go see them...I only wish I knew how to eskimo dance!

Anyway, happy Thursday, y'all!  I only have 8 treatments, including this morning's!

NancyD

Well, I couldn't find a drink for patty, so I came up with this

And because we don't want to drink that much on an empty stomach, here's a Patty Cake in her honor:

 It's a kind of cupcake made with lots of extra stuff to make it light and fluffy.

Enjoy! 

KristyAnn

Only two regular rads to go before boosts(5 of them) and I cant wait for them to stop bombarding this itchy rashy place tomorrow! Im hoping the 5 boosts dont start a while new area of itchy rashy!

Anyone know how much time is recommended between the end of rads and having an oophorectomy?

Kristy

dancemom23

Two thirds done today.  I'm really starting to get red.  I've heard you all talk about the trouble under your arms, and I never saw or felt anything there, so I just assumed mine wasn't in the range.  Last night it showed up, bright red under my scar.  I'm thinking the next week is not going to be easy sailing like it has been up until this point. 

I'm having trouble sleeping, or at least staying asleep.  I'm exhausted first thing in the morning because by the time I get out of bed at 5:30, I've already been up about an hour and a half - don't know why, but my internal clock has been waking me at 4:00 every morning for the past few weeks and I can't get back to sleep.  I'm glad my kids are pretty self sufficient, but even though the oldest can get herself and her sister where they need to go, I don't rest until they are home, so I am generally up until at least 9 or 10, so I don't think that it is because I am sleeping too much.  Tomorrow will be the first day in a very long time that I don't have to get up for anything, but I bet I'll be up bright and early anyway. 

Hope you all have a good weekend!

Chris

pattyk

Thanks for the drink and the "patty" cake!  A day to celebrate.  I finished the boosts yesterday afternoon and got hugs and a diploma from the techs and nurses and dr.  It will be strange not seeing them every day, but I'm not complaining. 

I'm still treating the burn under the armpit, now with silvadene which seems to be working.  Does anyone know how long it takes for the skin to look somewhat normal?  Ah, the joys of radiation.  I see the oncologist next week and will probably start on the hormone blocking meds.  I will miss all of you and will keep only good thoughts for those still being treated.  May we all survive this treatment and this disease!

KAK

Wow, everybody is really getting down to the end!  vhqh, I'm especially glad to hear you are doing well so far.  That's just great.

My redness & little bumps are almost gone now, so I'm going to start tamoxifen & see how it goes.  See you on the About to Start Hormones thread for that.  I'm going to have to change from taking zoloft myself.  Have to call my PCP today about that.  But not too worried.

Ace, your onc has reassured us all, I think!  I'm glad he turned out to be so helpful.

A lot of us are dealing with this switching anti-depressants issue, so we'll have to keep talking about that, too.

Anybody have really bad "cancer head" lately??  I swear, half my brain didn't work for most of this week.  PTSD maybe.  Feel much better today.

Kathi

mzmiller99

Kathi,

I know mine wasn't chemo brain, 'cuz I didn't have chemo, but maybe that's what it was...is!  Holy smoke!!  If not, it's old lady brain, complete with huge brain f*rts!!  I hope it gets better.

Susan

vhqh

I think it's something in the air....I have been super tired and functioning slower all week.  Funny thing is I keep accusing the gal I share an office with of having sympathy symptoms, she's having as much or more problems than I am!

nancy258

pattyk, congratulations!!! 

KristyAnn

Had my last regular rads today- only 5 boosts left for next week!

Found out my oophorectomy will be a total hysterectomy with an abdominal incision- wasnt thrilled with this news although I understand why and I like my gynecologist who will do the surgery- just really didnt want 2-3 nights in the hospital and 6 weeks off work. I do think I can work part days at home after the first couple of weeks so that will help!

Nancy- I want a raspberry drink when I graduate!

Anyone heard anything about how long after rads you have to wait to have surgery? I have to ask the rads onc on Monday before a timing decision is made!

 Dancemom- I have had trouble staying asleep the last week or so- I wake up around 4 am with the rash and armpit hurting and just cant seem to get back to sleep. Hopefully that will start clearing up soon- I have not taken any Ambien or anything to help but it might come to that- Im exhausted and cry at the drop of a hat so I knoe I am not rested in addition to everything else!

Kristy

Kristy

Makratz

Hi Guys,

Kristy - congrats on being done with rads and good luck with the boosts next week. 

Pattyk Congrats to you too!!  You must be thrilled!

I agree that something is in the air.  I have been very tired this week and kind of dipsy!  Oh well.  It's almost over.  I have one more boost on Monday and then I am done!!!!!!!!!  YEAH!!!!!!!!!!!!!!!

roberta37

Well I'm down to one more week - yahoo.  Very red and sore but manageable.  I'm the opposite Kristy and Dancemom - I'm actually sleeping well for the first time since starting this journey.  I'm not sure if it's the rads or the accupunture.  Whatever it is,  it makes the world of difference.  I certainly don't find my self as emotional.

 Hope everyone has a wonderful weekend and here's hoping to a smooth sailing next week. 

NancyD

Kristy, I have the perfect drink all ready and waiting...a raspberry tart cocktail.

Funny, all the cocktails I've been searching musy have triggered a few other things. Now I'm getting offers for bartending school and drink mixes. LOL. Well, I guess it's better to be behind tha bar than sitting at it and getting drunk.

Any other special graduation requests?

Anonymous

Good Morning Ladies,

Wow, more graduates !! Congrats.  Good thing NancyD has her bartending license!      

Thanks for sharing so much inform. Well, been a little over a week since finishing - and am fighting another new blister under my breast, some peeling but my breast is less sore. The bad blister under my arm is completely gone - Silverdene works great on those blisters.

 Have a restful weekend, and a smooth week. I'm continuing prayers and good thoughts for our group~ xxHugsxx

Kpete

Good morning!

NancyD - since you're "asking" for graduation requests - I'll be done on Tuesday, the 28th, and would love to have a margarita - on the rocks!  Here it is 8:45  in the morning, and I'm thinking drinks - gotta love it!

My boosts have been going well, and I haven't had any further SE's - my itching has pretty much stopped, and of course the redness is still there, but that's about it.  Our community has their annual Pink Pajama Party today for awareness month.  Should be fun - there's a silent auction, a speaker, and a style show.  Can't wait!

Have a good weekend!  Kim

mzmiller99

Hi, ladies,

Since we're celebrating, I saw my rads onco Thursday for my one month follow-up after completing rads...she was so pleased at my outcome- minimal skin SEs and manageable fatigue!!  I felt like I had won an award!! 

I was afraid I'd be all teary (like the onco appointments..?), but it just seemed like old home days when I got to see all of the techs and nurses!  Not planning on seeing them again for a year!

So, I had a couple cold ones on the way home - big Diet Coke and an ice cream cone from Mickey D's!

It's a cold, rainy weekend up here in New York State, but it's the weekend!!  Enjoy it!

Susan

roberta37

Okay thought I was doing really well with only 5 more to go, then I have a shower yesterday and the skin is peeling under my arm (along the SNB scar) and the skin underneath is very raw.  Seeming how it was a Saturday (and I just saw my rad onc the day before) I thought I better phone in to the on call rad onc as I really didn't want to leave it and then end up with an infection.  He phoned in a prescription for me to use twice a day.  Doesn't really do anything for the discomfort though.  Couple of little blisters also popped up and again it's along the scar line from my mastectomy.  Needless to say can't wait for this week to be over.  

Makratz

Roberta37

That sounds awful.  Hang in there.  Only five more to go.  You should show your doctor on Monday to make sure there is no infection.  Feel better!

NancyD

Roberta,

Keep your raw spot slathered in ointment and place a dry piece of gauze over it to keep your clothes clean. I really liked the Xeroform sheets my onc's NP gave to me. They were pre slathered in antibiotic ointment. I used them until my skin was healed, even though it looked pretty ucky while the new skin grew back.

I'm just at the point that my skin is still a little scabby but no longer needs debriding, and isn't sore to the touch. I can go without gauze as there are no oozing spots or raw moist areas.

KAK

Hang in there, everyone.  I slathered on Silvadene a lot myself & did the gauze thing until the soreness went away.  Just a bit pink under the arm now; not itchy today.  I'm planning to start tamoxifen Tuesday, as soon as my regular doc changes my anti-depressant prescription from zoloft to effexor.

We'll all be done soon!

Kathi

KristyAnn

Roberta I have the same thing happening with 5 boosts left this week- under my arm and one spot at the base of my neck is peeling- Im keeping it in Aquaphor and open air as much as possible. I will see my rads onc in the morning and make sure Idont need anything else. It is hard to sleep at night with these burns.

Kristy