Starting Chemo in December 2013

keepthefaith

My MO recommended Vit D and Calcium bc I found out I have osteoporosis and may be taking Armidex. I have been on it for about 6 wks. Going to have her ck my Vit D levels when I go in today for follow up. I also take Ambien once in a while when I can't sleep. 

Hoping I am back to my pre-chemo weight when I get weighed in today!  

Anyone taking Armidex ?

I hope those of you starting rads soon or doing rads, do well. I am two weeks from my last rads and feel completely healed, although my boost area is red and itches now and then. I never felt fatigued and never had any real issues. 

Anyone have any exciting plans for the long week-end? 

I saw "Heaven is for Real" the other day. It was okay, but not as good as I had expected. 

oranje_mama

On supplements - I am really an old lady now since I actually have one of those days of the week pillboxes LOL . . . . I am taking Biotin, Vit D3 (6000), and a probiotic.  I started the probiotic because of all the GI issues during chemo, but I've kept on it because I've found I feel better with it - less bloating, gas, more regular, etc.  MO was fine with me taking all of these things during chemo & indefinitely.  I've noticed that the Biotin is helping my nails grow like crazy, which is a good thing, because they are in terrible shape.  All 10 finger nails are lifting but I keep them painted & cut short and hope that I will hang on to them.  One ripped very short recently.  They are super tender.  But the "new" part of the nail is now more than half, so almost there . . .

Just got back from my first consult with the RO.  I *love* her.  I am switching hospital (still Johns Hopkins but switching site) to get treated by her - she came highly recommended and really lived up to it.  Explained everything so clearly.  And was very personable too (she has a son near in age to my oldest).  I will get rads in the prone (belly down) position.  She talked about the condensed - 4 week - option but said that is only recommended currently for 50+, that she will sometimes give to women as young as 45, but wouldn't recommend it for me (I'm 43).  She thinks that likely the condensed treatment is just as good as or better than the traditional 6 weeks (4.5 week whole breast, 1.5 week boost to area of surgery) but that there just isn't enough data for her to recommend it to those below perimenopausal age.

Also, for those of us with lumpectomies & rads - she told me that if you are not happy with the asymmetry between your treated breast and the other breast at the end of radiation (because the radiated breast may shrink/may be more "perky"/nipple at a different level), you can get a lift/reduction on the other side which is required to be covered by insurance.  She said that she's only known 2 women who chose to do that because usually the effect is not that major.  Thought I'd share that interesting tidbit.  I was thinking, hmmm,  maybe I come out of this with perkier boobs?  That would be one SE I'd love to have!

chicopeach57

My MO didn't recommend any supplements.  I take levothyroid, have been for 23 years, and that is it so far.  Have an appt with MO tomorrow, maybe he will suggest something then.  They have not said anything to me about vit D's, did say I was going to have to do a bone density test though.  Had one of those a few years ago due to thyroid meds and everything looked good then.

Today during rads a switch on the machine broke so I only got half the treatment. F***.  The part won't be in until tomorrow morning.  They want to fit me in between the 1:00 MO appt and the 3:00 MRI.  They aren't sure when I will get the rest of what I should have gotten today, they might add a little more each time.  But I am already getting a little pink, damn fair skin!  The MRI is for my back only.

I will get a mammogram on the affected breast twice a year, once a year on the other.  Had PET scan before surgery and nothing showed up on it except for boob and arm pit.  Thought I was going to get by with a lumpectomy and rads only till the armpit showed up.  The initial ultrasound said the lump was 9mm, after surgery they said 1.5cm.  Things can change in hurry with this stuff.

I want perkier boobs!

RHGSR

anyone still dealing with fatigue! I'm 4 weeks today PFC. Just had 5 th rad today (around 30/35 more to go). After I get kids to sitters or bring them with me, have treatment , then drive back home.... I'm beat. I'd thought I'd have more energy after chemo. 

jbokland

I just had treatment 10  of Taxol today and have complained of the mounting fatigue this week.  Rightfully so...my H &H were in the toilet, as was my iron levels.  

I got a bag of Injectafer (looks like a little bag of merlot) which should give me a little boost.

Lisaj514

second ct scan tomorrow for rad sim. Delayed due to going for the first one at another facility that does resp gating and found out that I don't need it so going closer to home. Now won't start rads until about 6 weeks PFC. My mo said that's ok. N

The perky boob comments...mine are so small (small B)and to have a reduction in the R to match the smaller L would be silly. Have always worn padded bras so that covers up my unevenness now. My L seems to be filling out a little, does not look like there is much of a diff any more. Will see what it looks like after rads.

I shared this pic on the hair, hair, hair forum so figured id share with you girls here too. We were talking about brows, and lack of. It's a little large and sort of creepy with these crazy eyes looking at you! The first is prior to chemo. I took it to remember what my brows looked like for when I'd have to draw them in, second is current without makeup, third is current with makeup and last is me looking carefully for little strands of hair that I hope will start to grow. Also my freckles, age/sun spots have gotten worse on chemo. MOsaid that's common. Anyone else?

RHGSR

I had very mild rosacea  (sp?) before chemo and it seems to have gotten worse. My checks are very dry and itchy. Putting aquaphor on them as well as my rad foob. 

Jodi040812

Lisa- love the pics!!   You are a great eyebrow stenciler!!!

RHGSR

great eyebrows Lisa!! 

DJJ

Great eyebrows Lisa.

Thanks for the heads up oranje_mama.  My left boob is already smaller than my right and if rads makes it smaller still I will definately being having cosmetic surgery.  Secretly I hope it shrinks so insurance will cover it.  It would be nice to be a perky C cup instead of a droopy D cup.  To have clothes fit my chest, what a dream that would be...sigh

aff

My PS expects what will be my new left foob to almost definitely shrink with rads. He is making it larger to start and will deal with any symmetry issues in stage 2 of my reconstruction.

oranje_mama

DJJ, I have to admit that I am secretly hoping for shrinkage for the same reason.  Would love to trade in droopy Ds for perky Cs . . .  Perhaps I could wear a button down shirt without gaping?!!

Holli, you are only 4 weeks PFC . . . I am feeling so. much. better now (7 wks PFC) than I did just 3 weeks ago.  Still fatigued, still muscle soreness, but it is getting better gradually.  MO said to just keep walking.  I've taken that to heart, have a fitbit and just keep on walking every day (even if my pace is more ambling than brisk).  I'm seeing progress.  

Lisa, your eyebrows look great.  I've surprised myself with my eyebrow-drawing skills - nobody has noticed!  It helps that I still have some hairs left.  

kimie06

Love the pic of the eyebrows that was a great idea I never though to do that.  I just had rad #11...so far skin is doing ok.  Maybe a little tanned looking but that is it.  I do find I am little fatigued but not too bad, I also chalk that up to being away from home and not sleeping well, and I walk everywhere me and my little fitbit... I covered 10000 steps yesterday and 7km.... CA-RAZY, you would think my ass would be shrinking but I dont think it is...

I am 9 weeks out from chemo and am still feeling the effects, sore achy joints etc.  Here is me with some head hair !!! and my brows are filling in and my eyelashes and nosehairs are returning.... as is all the other freaking hair...

keepthefaith

Great pics, ladies!

MO put me on Tamoxifen bc of effects of Armidex on bones, joints, etc. Will start tomorrow....I hope I do as well as I have thru everything else. She said it may actually improve my bone density and will ck that in two yrs....may switch to Armidex then. Keeping my fingers crossed for minimal SE's! 

My Vit D level was 17 when she checked a few months ago....YIKES! Will ck again at my 3 month follow up. I hope the supplements I am taking, do the trick. 

My girls are lop-sided too. Leftie has always been bigger, now there is more difference, since rightie got BC and had rads also....thinking I may talk to a PS in a few months to see what my options are. For now, I am not ready for another surgery yet. 

Have a wonderful long week-end ladies!

ben50

Hi ladies, I proposed this hypothetical in the triple positive forum, but because we are also December chemo-ers, some of you may be presently dealing with this very issue. So, I would like to know what you would do in the following situation:

You are:

----------------------------------------------------------------------------------------------------------------------------

in your 20's,

triple positive IDC Grade 3-- highly hormone sensitive and Her2+,

originally had a 2-2.9 cm tumor and 1 positive lymph node,

had neoadjuvant chemotherapy: Taxotere, Carboplatin, Herceptin, and Perjeta,

had an excellent response to chemo; tumor disappeared completely by second infusion,

had a bilateral mastectomy,

now a pCR: breast and nodal,

and will receive Herceptin and Perjeta for another 7 or so months and will shortly begin Tamoxifen for 10 years .

----------------------------------------------------------------------------------------------------------------------------

So, the question is do you now get radiation even though you are T0N0M0?

Remember: you are only in your 20's so you have a much longer time to develop secondary cancers like sarcoma (chances of secondary cancers from radiation get higher and higher the further out from your treatment). This is a very topical question as neoadjuvant chemotherapy and pCR are becoming a common occurrence among BC patients. Ask our medical team and/or get a second opinion you say? Done and everyone is divided with mixed opinions abound. I simply post this to see what YOU would do. There is currently no standard of care for this situation as illustrated in this short article from leading experts: http://journals.lww.com/oncology-times/Fulltext/2...

And now you know our situation lol. I guess it's better having the question than having a worse outcome at surgery and having our choice clear. I appreciate you ladies!

Jodi040812

ben50- I would do rads!  Insurance;). Chemo is the tough stuff.  Rads is just annoyance but you would never second guess yourself.  You did it all.  Just a safety in case one micro cell hung around.  Zap it!  

oranje_mama

ben50 - do you know what your risk is of developing a secondary cancer?  My RO told me that my chance is a fraction of 1%.  I am 43.  I did not have a PCR, but close (only largest cluster of disease left after neoadjuvant chemo TCH was 3mm).  Surgery with wide margins.  I had a lumpectomy, so my situation is different from yours that way too.  As my RO put it, we know there is a 75% risk reduction from rads after lumpectomy.  And there is only a fraction of 1% chance that a secondary cancer develops.  I will get rads on the right, so virtually no risk to my heart.  And risk to my lungs only 1%.  Based on that info, I am going with rads even though it is almost certainly overkill.  One day there will likely be the data to support a decision not to do rads after lumpectomy when there's a PCR (or in my case a near-PCR).  But alas, data is not there yet.

Crazywabbit

sharing some pics of my hair at 3 1/2 weeks PFC.   Very sparse on top still, no eyebrows and very sparse eyelashes. Wish there was more on top then I could go bare headed. Maybe another month until that happens.  Hopeful some more color will come in but I suspect it will be gray not brown. Oh well ,the brown I had before came from a bottle anyhow.   Barbara. 

RHGSR

Barbara!! You have a lot of hair for 3 1/2 weeks! It looks beautiful. I love the color. Mine is like a 5 o'clock shadow. I'll post a picture but you can barely make it out. I still have that mister clean shine going on :0). I'm a little more than 4 weeks PFC. Did notice a little hair on the legs yesterday. Just a few. But the remaining eyebrows I had have fallen out too.... 

Crazywabbit

Holli, definitely some peach fuzz starting there. Once it starts it grows in steadily. 

I shaved both my legs and axilla once already.   I think the upper lashes are being pushed out by new growth. Interesting that the papers from the RO office say deodorant and shaving are OK. 

Barbara 

Lisaj514

I'm 5 weeks PFC and have barely any hair, kind of like you holli. The shine is there also. Barbara, you have so much hair for only 3 1/2 wks. That's great. I have a little colorless fur on top and sides, yuk, but at least it telling me that something's happening. I'm thinking maybe ill buzz it off but not sure. And the poor eyelashes and brows. Still falling out, that's so upsetting. Thought I'd gotten away with having some left but it's not so. Glad I'm wearing my glasses now as it hides it. I can draw brows in but not eyelashes, just eyeliner. Went to the beach on LI today (visiting my family...back "home") and in the sun noticed some thin colorless hair on my lower legs, I'd love if this would stay like this instead of the dark hair I used to have. We are never happy with what we have are we?

Today was also my 28th anniversary. Had a beautiful day at then each with my family (sisters, BIL, nieces and nephew, son and hubby). I really appreciate the little things now like the sun, beautiful sand,warmth of the sun, coldness of the water, smell of the beach, sound of the sea gulls, white puffy clouds, kids playing on the beach, husband and BIL snoring in their beach chairs etc. went out to a nice dinner with family. 

Crazywabbit

happy anniversary Lisa

I think the hair has grown faster due to using Nioxin shampoo and scalp treatment every day. 

RHGSR

Barbara - where do you buy the nioxin? It is so expensive. The cheapest I've found it is $19.99 for a small bottle. A long time ago they sold if just as shampoo and conditioner and it wasn't so expensive. Now there is like 3 steps. 

J4DC

hey, ladies, hope you all have a great weekend. I went to Hershey park with my family and a friend's family. We had a lot of fun together. The weather is perfect. 

Barbara, your hairs grows so fast and they look beautiful! I had more fuzzy hair at the back. The rest is mister clean shine too. :-) my brows are still falling. A few eyelashes start to grow in. Can't it be faster?

Ben50, I would probably do Rads too, just for ease of mind. My decision for going in with rads was very similar as oranje_mama.  It's a hard decision. I was back and forth for a long time between lumpectamy+rads or BMX. It was very frustrating for me at that time. But once the decision was made and I stopped second guessing, I feel so much better.Wish you the best. 

jbokland

I'm surprised but my hair started to grow during week 8 of Taxol.  Anyone else??

This is me, still 2 treatments to go. I had white hair before I started, but this looks even whiter ( if that's possible !) 

I am getting married on June 29th and will go down the aisle with whatever I have.  I hope the thinner stuff on top fills in more! 

Crazywabbit

Holli,

A dear friend whose daughter is a beautician gave me the shampoo and scalp treatment ( along with a big basket of scarves  to borrow).   The only place I know to buy it locally is Ultra. I goes on sale there  2/$40 some times.  I need to start looking around since I am almost out of the scalp treatment, the bottle of shampoo  is lasting forever since I only use a pea sized drop. It was enough for the bare scalp and the short stuff there now.  I will gladly pay the full price of $25 if it continues to get my hair growing. Normally it does not grow any faster then normal. I usually go 8 weeks between haircuts.  I am hoping for some body to magically appear in my hair, it was always thin and straight. 

Barbara 

Crazywabbit

jbokland, 

That is similar to the hair growth I had about that time, but much less in the front.  The front top is about 1/8 to 1/4 inch where the rest is 1/2 to almost an inch long. 

The chemo nurses love to rub the fuzzy heads.  It is so soft like rabbit fur.  

Barbara

RobinLK

Mine started coming in while still on Taxol. Always grows fast and one side grows faster than the other, finally have proof...lol...5 weeks PFC...eyebrows and eyelashes are on a comeback tour also!

missy6758703

My morning bedhead...........my hair started growing in about week 8 of taxol as well.  My eyelashes and eyebrows waited until almost done to fall out.

Enjoy your Memorial Day!

Michelle

keepthefaith

Great pics! My hair is filled in and wavy. I think I am liking the short hair! My MO said I look "sassy"! Haha.

Enjoy your holiday ladies. Thanks to all of you who have, or are serving, or who have a family member that is!