September 2013 Chemo Group

Hi All.  I haven't been on this site in quite a while.  Just trying to live life again, I guess. So, I have to make a decision as to whether to have my ovaries removed or to go on Lupron which shuts them down temporarily as we wait to see if I am indeed in menopause.  The chemo put me there but we don't know whether I will stay there.  It seems there is no avoiding menopause no matter how I look at it.  That makes me really sad. I am a young 49 and I don't feel old enough for menopause - I don't want to lose my libido, have memory issues, bone joint issues, and all the rest.  But the tamoxifen did not work on me and I had a recurrence in the reconstructed breast.  They want me on aromatase inhibitors so I have to be in menopause.  Have any of you had to make the decision between Lupron and surgery?    Trying to make the decision and would love some input. Thanks!

LHL, I have tried wig conditioner and it does help a bit, but my main wig is getting a bit frayed.  I ordered another that is the same and had it trimmed up by the same person who did my first one, but it's like an old pair of jeans...I keep going back to my favorite, frayed as it is.  On the topic of TE pain.  My TEs were uncomfortable, but not overly painful other than immediately after fills.  You had more lymph nodes out than me, so perhaps they are irritating that area.  If they are really painful, it's worth a call to the PS; especially since they will be in a while.  The permanent ones are definitely more comfortable!!!

We had 50 MPH wind gusts last night, so when I went to a parent meeting, I had a hat on and took it off when I got there.  There were only 5 other parents there, all who knew my situation, but it was my first time topless, other than around home or around the guys at work.  The earth did not open up and swallow me, so I can probably do it more often.

Friday I had to be at my youngest's school all day and Saturday was an all day swim meet, so yesterday I pretty much did nothing and allowed my body to get a little rest.  I am feeling really good after the surgery, and have not taken any pain meds at all since the Tylenol my first day home.  I am still adjusting to the new look.  They do look good; just a little bigger than I was anticipating.  My last words to PS and the nurses were to NOT go crazy and huge...that I wanted to be the size I was 2 fills ago.  I think he was off by a fill.  He even said that he tried 2 different ones, but everyone in the room agreed that these looked better (these being the bigger of the two)!  I was the star if a nudie show while asleep and didn't even know it!  They do look good; just different.  They look much better than the TEs.  I am tall and thin and have a pretty narrow body; I think these are just a bit wider than I am used to.  Once I have them for a bit, I am sure I will adapt.  I have never been a fan of bra shopping or swimsuit shopping...because I was always so small.  I finally did both last June...bought a ton.  Now I will need to bra shop all over again and likely swimsuit shop all over again too.  This time because I am a little too big for my previous ones!  I tried one of my bras I bought in June on and it was not even close to fitting...guess I was smaller than even I remember! 

mfm, tough call.  You could try the Lupron and go with the surgery later if you are not 100% sure.

mfm48- I just saw gyn today and she told me no need to shut ovaries down unless BRCA positive???  I am seeing another gyn/mo in a few weeks will see her opinion.  I was thinking I might should take them out to reduce /stop estrogen instead of tamoxifen blocking it..??

What /why are you having it done?

Peacockgirl- SOOOOOOO happy you have so much energy and are back to doing things you LOVE!  I want some energy!!!

LHL- I hope menopause won't be that rough - I'm 46 and hoping for good things, there are so many girls I know that had BC before 40 even and older that NONE of them said sex and all of that was an issue...I know the hot flashes stink...as I have many per night...but I have personally talked to several that are just fine after going through it....some surgically, some with Lupron and some just Tamoxifen and the chemo- let's hope for the best!

Kbee-

I LOVED the 'the earth didn't open up and swallow me'!!!!  Made me feel good as I want to go out without a wig as soon as the bald patches are covered...I'm thinking shorter than Jamie Lee Curtis hair...maybe I'll bring a little Activia along with me

Simplelife4- I'm not quite 2 weeks out too and still exhausted after showering.  Then went to dr today and just rode in car with my husband to get our daughter after school and am happily on the couch 'resting'...

One of our great family friends is 65 and a 5 year BC survivor- she was texting me yesterday and I asked how long it takes to get 'back to normal energy wise' -  she said it took her 4 years!  But she was older than most of us are....I'm going to ask my friend that is just now 46 and had it 7 years ago...maybe that will be more accurate...I don't want to wait 4 years for energy...she did say that she felt WAY better in a month or so but to have full energy was that long! 

Cancer sucks!  I was wishing today I was a scientist and could find a cure...it is so annoying!

KJ - In my neck of the woods!!  And not to rub it in or jinx ourselves but so far this winter has been wonderful. Glad you're feeling well and down to fewer medications! WOOHOO

Audra,
My experience is that shaving doesn't make it spikey or grow back faster on my face.  True confessions... before Chemo, I have shaved my facial hair about once every two or three months or so.

Yes, I am enjoying feeling chemical free. Yippy Skippy!!!    Energy is coming back and despite the surgery, I'm feeling better than I thought I would.  Love chemo being in the rear-view-mirror.  I didn't realize how much it affected me.

JosGirl,
I waved at you.  Last night was very foggy headed home.  Didn't clear up until the Tacoma Narrows Bridge.

Thanks SpecialK I sure will ask about that! That would be awesome if it is a possibility!

mfm - you might try the Lupron in the short term and see what happens.  I had a total hysterectomy at 45, so surgical menopause, due to numerous uterine fibroids.  They also found a 3cm ovarian tumor that was undiagnosed, so I was fortunate.  I did not have any effect on libido, or memory issues, or joint pain from that surgery.  It was another 9 years before I was diagnosed with breast cancer.  I have been on both Femara and Arimidex and have not experienced side efects other than some joint pain, but have found relief to a certain extent with going gluten-free and taking joint supplements.

So glad to see everyone seems to be doing well! I said I would catch up later from my last post, but alas I am behind again! Life has been crazy lately. 

SpecialK: Thank God on the peach fuzz being temporary! Apparently I am covered with it lol. It is really long on my neck and looks really weird in comparison to my HEAD! The hair on your neck shouldn't be longer lol. I was hoping it wasn't a menopause thing because I don't think I am going to come out of that. Who knows, my body could surprise me, I guess. 

Those of you who are just two weeks PFC, give yourself a break! I know it is hard because you know you are done and you want to catch up on things and go right back to normal, but your body has just fought a tremendous battle and it is okay to take a bit of time. I am almost 6 weeks PFC and there are good days and bad days still. 

Hair: I lost all my eyebrows a few weeks ago and some head hair. I'm thinking of shaving it all off again, but I am looking forward to having something. It is very thin; you can see my scalp very clearly. It is also about twice as long on the very top of my head as it is anywhere else? So weird. I have like a round mohawk lol. At it's longest it is only abou 1/4" though. I would say it grew about twice as fast DURING treatment. I rarely wear a wig (except my blue one) so it isn't too shocking when I whip my hat off, I suppose. I still feel a bit self conscious though. I was having a hot flash in the store the other day I could barely contain myself not to take it off lol. 

I am finally getting rid of my cold. In the last 6 weeks I have had 3 stomach bugs and 2 colds -__-  I saw my MO yesterday and he said my numbers are coming up. He wants to rally the team and make sure everyone is 100% on board with me not having rads (bad thing about doing node biopsy post chemo-you don't know what was in there before), but I am thinking it will still be a go. I got my date yesterday, too! February 17th. EEEEK! Three weeks from yesterday. Now I need to try and get caught up on stuff (just to fall behind again lol) and get ahead on homework. 

Anyone heard of insurance paying for some physical therapy after this mess? My muscles are so shot and destroyed. I even asked to take another round of steroids (he said no because it will delay healing from my surgery- I asked twice lol) Stairs are still difficult at times and my hips are completely jacked up. I did a side bend earlier and literally screamed out loud because it hurt so badly. I don't know how to get myself back in some kind of shape, especially with still healing from my lumpectomy and impending BMX. 

My surgery site is finally feeling better. I had a couple days of serious "worse before it gets better" but yesterday it finally was better! Good thing too, because I am going to be without a nurse tonight. I am sure I will get cleared from lifting restriction today, anyway. I am not happy with the nursing agency though. I am going to have a BRUTAL scar though. One of them kind of rolled over on itself, it looks like? It is very raised and looks terrible! I never scar. I am hoping my BMX scars don't look so bad. What kind of incisions did all of you have? I was hoping to have the iframammary or periareolar if I can. I am still debating on trying for a nip-sparing. I worry about the fact that I was having nipple discharge and that it could have brought cells to the nipple. My MO said he would only be worried if it was bloody, but it still worries me a bit. It would be nice to have the chance at an (even just occasionally) reactive nipple. Something "normal" in this madness. 

In other news.... There may or may not be something blossoming in my life. Would that be so very insane to begin something with someone at this stage in my life? Bald, in menopause, just finishing chemo and about to undergo a BMX? Crazy talk, but I guess if he is interested now... I just don't know how I feel about dragging someone in to this madness, but it sure feels nice. 

Wishing all of you the very best day and week and I will check in when I can!

Hello, ladies.  I had my MRI yesterday and got some tough news.  My known tumor is still
pretty big (2.3 cm), and there also were two
surprises – two additional areas they think could be cancerous (.9 cm on the right and .5 cm on the left).  Thus, my chemo
journey continues. So much for the hope that chemo would obliterate the cancer.  Hopefully, carboplatin will do a better job.  I’m not sure yet whether the additional chemo will be
before or after surgery, but I should know soon. 

At this point, I am inclined to wait until
after surgery to proceed with additional chemo.  I understand that the
benefit of continuing chemo now is to be able to assess the responsiveness of
the tumor(s) to the chemo.  That made sense to me when starting taxol back in September, the
thinking being that if there was a poor response to taxol, we would move more quickly to the AC.  With carboplatin,
there is no moving to something else if the response isn’t good.  Also, I
like the idea of having something to “clean up” after surgery (being triple negative, my options are limited). 
Psychologically, I think I would be in a bad place if I exhausted chemo before
surgery only to find out that I didn’t get a complete response.

On the bright side, at least there is a further treatment option.  I would be in a really, really bad place if further chemo was not an option at this point.  Also, I suppose this MRI has validated my BMX decision.  I'm tired of bad news.  That's not to say that there will not be any in my future, but hopefully it will minimize bad news from completely out of nowhere.

Better Day - I'm so sorry you didn't have a better response to chemo. Mine wasn't great either, so I know how disappointing it is to go through all that chemo in the hopes of "melting that tumor right away" and not have that happen. I'm sending a hug your way.

Kelly

Betterday:  Hugs.  I  read your pm and wrote you back before I saw your post here. I  see that you answered my question about pre or post surgical chemo.  That makes so much sense to go with post surgical chemo and also going with the BMX.  We are here for you as you continue your journey.

Knightzoo, I keep thinking it's a mistake to take my port out at surgery too.  What if the path results aren't good and I want to get more chemo?  I was surprised my MO okayed getting out the port, but I just have to trust her judgment.  She is the expert.  I am not.  I'm going to go with her on this one.  I love your picture of you behind the clippers.  You look good!

Mama:  sounds like this guy is one of the good ones!  One thing about BC is that it is a great tool for weeding out the bad ones.  I'm happy for you!  Also, thanks for helping me see it's okay to be feeling so low energy 2 weeks pfc....particularly since I ended with 4 rounds of AC.  

I was hoping to go to my first ball room dance class in almost two months this afternoon.  The class has been on a break that worked out perfectly with my AC chemo so we only missed one class.  It's snowing here today so I'm thinking the class will be cancelled.....I'm not sure I have the energy for it even it it's not.  We'll see....

Stay warm!

Thanks so much for the cyberhugs and words of encouragement.  I sincerely appreciate it. I heard from my MO today that she plans to give me gemzar with the carboplatin.  I need to dig in and start doing some research on both of these.  Wishing all of you the very best in your various recoveries.  I truly believe better days are ahead of all of us.

mfm - just know that ovary removal can cause hair loss as well - you will have less circulating estrogen, as well as being on an aromatase inhibitor, which may also cause hair loss or thinning.  There are three AI drugs - Femara or letrozole (which my doc prefers because of its effectiveness), Arimidex or anastrazole, and Aromasin or exemestane (which has an additional steroid).  Docs prescribe these drugs based on their preferences but there are many ladies who try them all out in an effort to find the one that causes the least side effects for them as individuals.  It is also important to note that there are generics of all three so even switching to a different manufacturer can alleviate side effects, as some are sensitive to the fillers and additives in each generic.  Once you determine which one works best try to always fill the prescription with the same manufacturer.  I have been on Femara twice with two different manufacturers, and Arimidex once in the 2 1/2 years since completing chemo.

audra - even if you remove ovaries your body still produces estrogen in a number of places - and post-menopausal women produce androgens which the enzyme aromatase converts into estrogen - the three aromatase inhibitor drugs block this mechanism, while Tamoxifen, which can be used by pre and post meno women, blocks the receptors on the cells themselves while not interfering with circulating estrogen. 

mama - don't factor a functional nipple with any feeling into your decision to do nipple sparing.  They core out the underneath of the nipple and remove all tissue from the breast beneath it - it won't have feeling.  It becomes a decoration on your skin - nothing more.  On the facial (or back) hair many have used those personal trimmers to shave off that hair - some have had to do it a few times but then it doesn't return.

betterday - sorry about the level of pathological response and possible additional issues.  Note that this is not an unusual level of response - complete response is in the minority.  Gemzar is not a drug used often for early stage - you might ask in this forum - not because of the stage but because these ladies may have more experience with the drug and its side effects.

http://community.breastcancer.org/forum/8/topic/783594?page=56#idx_1674

I can't remember who said nipple sparing surgery so here's my two cents.

I got nipple and skin sparing.  They tested each nipple during surgery for cancer cells were to take them out if any, there were not so I have my nipples.  They were scabbed and bruised after surgery and now look fine...BUT I wish I wouldn't have kept them!!!  I am not wearing bras as told I don't need to, want to wear a cami or something but they are tight under my arm, so for now I have these nipples rubbing on tshirts and it sortof makes them dry or irritated??  There really is no feeling in them - my P.S. sortof sold it to me and said they can reconstruct but never do as good of job as God does, so I did it...I would've been just as happy without or with those tattoos...

My incisions you cannot see as they were underneath...My boobs look like a normal persons...I am amazed...My sweet husband was thrilled even with expanders...and thinks these are just like my old ones...(crazy) MEN!

You all help me with this- why do some of us get surgery first and then chemo and others chemo first and then surgery?  Maybe I was on chemo during that discussion but I seem to have missed why ???

LHL- You will do great at radiation!  You are so cheerful and positive!  And I'm sure it will be better than chemo!!! YES!

Miss mamabear-  This guy must be a keeper!  Praise God for some good ones out there! GO FOR IT!

Betterday- We will be here to cheer you on this next road of chemo!  You have a great attitude and that will prevail!

Simple life- You are amazing to dance!  I am worn out from two appointments today...

actually the showering and makeup did it earlier today...

You all are amazing!

kj - I love the last one - methinks you might have tried that, lol!

audra - some get chemo before surgery if they have a large tumor and they need it to shrink prior to removal - either for a lumpectomy or to achieve cleaner margins from skin or chest wall.  Some, particularly triple negative patients, have neoadjuvent chemo to make sure the drugs are working since they have no hormonal therapy to fall back on once surgery/chemo are done.  The problem with having surgery first, and then chemo, is that there is no "proof" that the chemo is accomplishing anything - those of us who did it that way are doing it on faith.