March 2010 Chemo Start

Hi All,

Badger, the Equinox? Bring it on !!! I am so sick of bloody cold weather - plus feeling a bit sorry for myself at the moment and just know that some lovely sunny days will cheer me up.  The image of your hair coming off like dandelion fluff is poignant - both beautiful and sad at the one time. I'm so glad to hear you're feeling it blowing again. I look like a grey Annie Lennox (not as pretty) from the 80's - but I'm fluffing it up with bio-oil every day and I feel it getting thicker each week, so it's kind of fun -can't wait to feel it blow.

Hope everyone is feeling stronger every day. If you're feeling hot, or even if you're not, I send you some cool hugs from downunder.

Hi everyone,

I've had 3 radiation treatments so far. Only 22 more to go! The radiation isn't bad but the drive is annoying only because I have to go everyday.

I have hair. Some spots are thinner than others. I'm not brave enough to go out in public without a scarf or something on yet but I will soon. I can almost see my hair growing! It seems thicker each day.

I still have joint pain. Sometimes the small of my back really hurts and I have to take a pain pill. Other times the pain is in my shins or my thighs. I'm wondering if it is "left over" from chemo. Speaking of chemo, I'm having my "no more chemo" BBQ this Friday evening. My whole family is coming and we're going to BBQ and swim and celebrate the fact that CHEMO IS OVER! I know I ended chemo August 16th but it has taken me a while to feel well enough to have everyone over and prepare all the food for so many people (about 30)!

Oh, this is something weird...I swear I can feel something when I am getting radiation. I don't know...maybe it's in my mind but I believe I really feel the radiation. Also, about 2 hours after radiation I have an upset stomach and then diarrhea. After that, I'm completely fine. It's happened with each radiation. I don't know, like I said, maybe it's all in my head.

Hope everyone is feeling good and recovering fast!

Hi Great Ladies,

Well I had 2 treatments in row, which put me at 6, the half way point.  I felt great like I was moving along.  Only to have a major set back this week.  Numbers were up, onc. pulled me off the blind trial, which it turns out I was on.  That's one good thing.  She wants the liver biopsy done asap.  But I have to be off the Avastin (trial drug) for 4 weeks due to bleeding.  So I need to wait 2 more weeks.  After results, will then decide what chemo to put me on. She said I may be looking at another 3-6 months of chemo.  I know I have to do what I have to do.  I always thought I was a good person.  I really must have pissed someone off. And of course, my hair will fall out again and this time come back curly, right now it is bone straight.

I am getting ready for the Race for the Cure- one week to go.  We have 64 people on our team and have raised $4120 so far.  My husband has is kind of obsessed with this.  He has raised most of the money through his business.  My children are all doing something to raise money as well.  Jaci is making and selling bracelets, Joe is selling hot pretzels after school and Greg is donating all his tips from working a festival this weekend. 

I am really afraid of how emotional it will be.  I wrote a letter to my neighbors and cry every time I read it.  I just picked up our shirts and bibs for the race and mine is pink because I am a survivor and I started balling.  I'm crying just writing this.  Do you think this would be my time of the month if I hadn't had chemo???   I just hope I can hold it together with everyone there.  My sister and nephew are coming down from Boston and my girlfriend who moved 2 hours away are coming for the race.  It should be fun, we're having a BBQ afterwords at my house.  I will def. take lots of pictures and post some. (if I can figure out how)  I really want to video the whole day.  I just have to remember to do it. Charlie-  let me know how your race goes. 

 I CAN NOT remember anything lately.  And I feel like I have ADD, as I cannot accomplish a simple task.  I am also having weird dreams every night.  Has anyone had dreams?  They are ususally about people I know.  In weird places and circumstances.  Last night I dreamt about my High School boyfriend that I dated for 4years.  I haven't seen him since 1979. 

My girlfriend wrote this on my caring bridge this week at a time when I really needed it.  It was an insert in a card she had received when her Father passed away suddenly.  Maybe  will help you when your feeling down.

We want to believe the world is understandable.
That life is fair. That things make sense.
We want to believe that if we're careful enough,
work hard enough, try hard enough, we and those we love will be safe from anything bad. It's one of the biggest questions humans wrestle with, why things sometimes aren't fair. But even though we don't always have a neat answer to why things happen, we do have each other...and we have our faith, family & friends.  

Yes, we do have each other.

Hugs to all,

Michelle

RFC in Tulsa is tomorrow!  My team has raised about $2700.  I am planning on running the 5k and then walking the 5k with my team.  That's the plan anyway.  I will post some pics.  Yes, this all can become very consuming.  We had a pasta party at work today and gave away some RFC "prizes". I wonder how I will feel when I do the walk?  I've been thinking about last year at this time and how I didn't have any idea what life had in store for me ... It is all so strange.

Toni - Love the hair!  Maybe I will post a new avatar as well ...

Hugs, Charley

I'm sore! I completed the 5k run in 27:54 - 2 mins ahead of my desired time and then did the 5k walk with my team.  Ouch.  I should have stretched.  But what a day! Emotional...  happy...  this year definitely had a different meaning for me ... Didn't lose it until after I got home.  It was very touching how many people turned out and contributed.

Michele - Was your race this weekend?  If so, I hope it went well and the BBQ was good.  BTW, the post from your friend is right on! I wish we had an answer as to why things happen ... and I will never stop asking why ... but now I know I will never really know.

Lisa - ambien definitely gives me weird dreams sometimes but then you throw in the hot flashes on top of it?  Really strange ... It's a wonder that anyone ever sleeps through all that! ;-) 

Hugs, Charley

Congrats Charley on RFC Tulsa and good luck Michelle next week RFC NJ.  It was emotional for me to walk RFC Madison in the pink survivor shirt with people coming up and saying "congratulations." But I'm glad I did it and hope to do it again next year (God willin' and the crick don't rise, as they say around here). 

Went to an apple orchard yesterday and bought honeycrisps for eating, and a variety of others for making pies (next week) and applesauce (today).  My house will smell great today! 

Hang in there Michelle and Yeshua4Me and any other sisters still going through treatments. We are here for you!  Best wishes, good vibes, love and {{hugs}} going out to all. 

I second everything Lisa just said. Charley, Michelle, Yeshua -- awesome is the word that comes to mind. Sometimes my biggest victory of the day is leaving the house. You are all inspirational.

 And Charley you look great!

It's true my hair is so thick I can't even find my scalp. I wish there was a way to give some away to those of you who want more. I would do it in a heartbeat.

Wow! Everyone's looking great!

I made it through rads - 28 sessions, 3 spots each time. Did anyone else have burns? I was surprised because I had no problems until the last 5 tx. Then it was 3 weeks of misery. I'm through it now, but had 2nd degree burns over half of my chest and underarm, and was on oxycodone around the clock. It hurt more than the bilateral mastectomy!

Tomorrow I see my onc for a follow up , and to get started on an AI drug. Not sure which one I'll get - anyone have any experience?

Love to see some of you so active; it's got to be just around the corner for me! You are inspirational!

xxoo Sandie 

hi Ana,  I had mastectomy and no XRT so can't talk from personal experience. However, I have read that post radiation after lumpectomy, up to 1/4 of women can have some mammary fat necrosis.

Radiother Oncol. 2010 Mar 11. [Epub ahead of print]

Mammary fat necrosis following radiotherapy in the conservative management of localized breast cancer: Does it matter?

Trombetta M, Valakh V, Julian TB, Werts ED, Parda D.

Department of Radiation Oncology, Allegheny General Hospital, Pittsburgh, PA, USA; Drexel University College of Medicine, Allegheny Campus, Pittsburgh, PA, USA.

Abstract

PURPOSE: Fat necrosis is a well-described and relatively common complication arising from post-lumpectomy irradiation of the breast, most commonly breast brachytherapy. We wish to assess the clinical significance of fat necrosis resulting from post-lumpectomy breast irradiation.

METHODS: We reviewed the literature to determine the overall incidence and significance of fat necrosis to determine whether or not fat necrosis poses a significant clinical problem.

RESULTS: Fat necrosis occurs in up to one-quarter of patients following post-lumpectomy breast irradiation. Only rarely is invasive intervention required however, it does significantly degrade the quality of all modalities of breast imaging.

CONCLUSIONS: Fat necrosis is a common complication of radiotherapy which rarely requires therapeutic intervention. However, post-therapeutic clinical imaging such as mammography, ultrasound and magnetic resonance imaging are affected which may result in additional diagnostic procedures up to and including biopsy.

So, going along with that - you will definately still be having ongoing effects from your recent radiation.  If they do see anything, it is most likely to be an area of fat necrosis, and they may wish to biopsy it "just to be sure". Try not to worry too much (says me who thinks the worst if I have a day of a little cough).

Good luck with the USS. We'll be cyber holding your hand.

editted to say - that above is a long winded way of saying, post radiation discomfort is common and I'm sure your oncologist is just being super vigilant. Hope it wasn't TMI with the study, I was looking for something to reassure you 

Hereandnow and LillyC- Thank you so much for the info and feedback. I'm praying that everything goes ok tomorrow. My Onc doesn't do cancer markers....not sure why. I was just told to be aware of any pain that doesn't go away...so you can see why I am freaking about my breast pain. Something that appears to be so normal (from what I hearing and reading) was never explained to me and when talking with my Onc he seems concerned, so of course it plants the seeds of doubt and fear.

Again ladies, thank you!

Hugs to you all, you are in my thoughts and prayers..always!

Ana

Heather,

I did 7 weeks of radiation. I promised, it's not near as bad as you might think. The worst part of it all is driving back and forth everyday. I will say that the area being treated did have some discoloration and itchiness toward the end. Cortaid took care of the itch and I made sure to keep the area moisturized several times a day. Aquaphor and Emu oil were my choice of skin care.

I know you are a bit discouraged, but it's just another weapon in their arsenal to make sure you NEVER have to deal with this mess again. Continue to stay positive, you've battled thru the worst part. Radiation is a piece of cake. If you have any other questions, I'm happy to answer. Keep me updated.

((((hugs))))

Ana

Heather - I also did 7 weeks of rads - the trick is to slather, slather, slather.  Twice a day. My skin really held up well.  The fatigue got me down a bit although I worked straight through.  I'm 3 weeks done and feeling much better.  My techs were hilarious and because you go everyday at the same time, you become friendly with the other patients.  It was really not bad - but as Ana said - going every day is a pain.

I had my follow up with my Onc today. She doesn't do markers, she says they really aren't useful for Stage II.  As I'm hormone receptive, I'll start on the drugs - the trick is which one. My last period was November 2009, so I had blood work done today to see if I am through menopause.  If so I will go to Aramidex, if not I will go through a series of shots in my ovaries (once a month for 3-6 months) to induce menopause.  Then start the Aramidex. 

Has anyone gone through this??  Who is on Aramidex? 

As for hair, I FINALLY have some little chicken fuzz and my eyebrows are pretty much back.  Still no lashes.

 the big issue for me is emotional.  Now that treatment is over, I can't seem to manage my life.  I have unrealistic expectations and I am continually anxious that I am not keeping all the balls in the air. Problem is I have too many damn balls in the air - work, parenting, exercise, blood work, fatigue, volunteer work - and my daughter decided to make her own homecoming dress - she did a great job, but "she" turned into "we" and it 'bout put me over the edge.  While I was in treatment I was very kind and gentle to myself and willingly said "no" to outrageous demands on my time - why can't I do that now?? Because I'm "done" everyone expects me to be 110% - the worst culprit being me.  And don't even get me started on the "new normal" - WTF!!!  {sorry for the baby rant}

 HUGE HUGS to everyone!!!!!!!  Marilyn

Marilyn I totally hear you. I think people want us to be better so badly because they are worried about us and need to see us 'normal.' And it's so so hard not to give other people what they want, even at our own expense.

Practice that 'no' word again, and I think the occasional rant is good for you!

Heather, I did 6.5 weeks of rads. I did have to stop for 3 days + weekend because of skin damage under my arm (apparently more of an issue when you're bigger breasted). That was only last month but I've already forgotten about it, and I feel like I never had the radiation. It's awful to be done just to have something else thrown at you, but I agree that the hardest part was getting there every day.

big hugs to all.

OK ladies....had my mammogram along with an ultrasound today. The ultrasound tech came in and said they see something suspicious and I now need an MRI and biopsy! WTF! Are you kidding me! I just finished the road from hell! I'm devastated! I have no words! I'm so angry! How can this be possible?! So, here I sit...waiting. Waiting for more tests, waiting for more needles, waiting for more results! I just want to crawl in a hole!

Sorry for the rant, but I'm just so upset!

Ana, it's absolute crap that you're having to go through this. I hope the tests can be organised quickly for you so your mind can be put at rest.