August 2014 Surgery

SunnyC

Hello Girls --

Happy One Year. I hope you are all doing well.

xoxo

ganzgirl2010

Hi Ladies,

Just checking in to say hi and see how everyone is doing. I am going in on the 15th of October for my last surgery !! Fat grafting and nipples yay lol. Then I am done !! I cant wait, Ive never been so excited to have surgery lol. I'm actually just excited to get my life back

ml143333

Ganz - so glad to hear that you are almost done!  I hope that surgery will go well and recovery will be smooth.

I have another reconstructive surgery in late March to fix the girls.  We'll see how that goes.

 

Allydp

Hi ladies! So nice to see some familiar faces!

Ganz - yay for your final surgery and being DONE!!!

Hope everyone is doing well! xo

Milaandra

Hi there...I didn't realize people were still posting here.  I've just added it to my favorite topics.

I'm doing fine.  The last couple of CT scans were stable.  In fact, I haven't had any progression since diagnosis.  I know that can't last forever, so I still tend to worry about every ache and pain.   I'm taking my tomoxifen and getting my xgeva shots.  I did get the breast radiation, from which I'm still recovering.  At my breast surgeon follow-up appointment, she said it was likely I got a big dose and that's why I haven't bounced back right away.  (I'm sure it didn't help that I worked full-time during the whole treatment)  I'm just starting to get some energy back, just in time for overtime...which I don't like to do.  Straight time overtime isn't worth the loss of my leisure.  But I'm being a team player :P

I had a bout of cellulitis in my left arm about 5 weeks after the spine radiation, and had to spend 7 of my precious vacation days for that.  (No free rides here, let me tell you!)  Ever since, I've had some lymphedema.  It's not horrible, but it's annoying and affects my wardrobe choices.  I have one top with elastic in the above-elbow sleeves...I'll never get to wear that again.  Does that sound trivial?   Apart from that I have a couple of odd little SE...ezcema patches, a recurring gum infection, night sweats (of course) and a couple of sore joints.  That the only pain I get...I take nothing at all!  I have gained a bit of weight, which is irritating.  I don't know whether it's from the tamoxifen or from eating-for-fatigue...I didn't notice it until after the radiation.

My sister and brother-in-law came over for three weeks this summer.  We did the whole Scottish Experience, had a week back at work, then a few days in Ireland.  It was nice to see her, but not a very relaxing experience.  We painted the flat and fixed up the spare room for them coming, and I had all the travel arrangements to make and worry about, so I could really use a vacation from the vacation.  LOL!  We have a weekend away at the beginning of December, then between Christmas and New Year we're going to Prague for a few days!  I'm really looking forward to that...Prague looks fabulous!  I got box seats to Carmen at the famous State Opera House (featured in the movie Amadeus), tickets to a winter concert, a touristy dinner with folk music and dance and booked an escape room.  It should be fun!  Plus Czech food is all meat and potatoes or dumplings, and it's the birthplace of Budweiser, so hubby will be happy and replete!

And that's it for me!

ml143333

Mil - so glad to hear from you. Not many of us post here anymore, which is sad, but I look and keep it on my favorites too. We were a team for so long!

I am happy to hear that you have not had any progression! That is a blessing. I too understand about working through treatments. I didn't have radiation, but worked through chemo. Phew! I guess all do what has to be done.

I am on Femara as chemo shot me into chemopause. I too have joint aches, hot flashes and recently nausea. The hot flashes are getting better. When I first started 6 months ago, they were HORRIBLE. Maybe my body is adjusting. As for the joint pain - well - it shifts locations. It started just in my knees. Now I have significant pain in my elbows, hips, and ankles. The nausea is new. For me, the side effects are doable. I just think that there are many women facing much worse side effects than me.

Prague sounds wonderful! I bet it will be beautiful. Enjoy your time there!

Allydp

Mila! I think of you often and so glad to hear from you and know that you've been stable. I'm sorry for all the SE's you're dealing with...but no...your top not fitting doesn't sound trivial at all. I sometimes think the little things hit harder because they're usually the icing on the cake if ya know what I mean. But you are amazing to be working through it all, and overtime no less. Sounds like you had a lovely visit with your sister and BIL, but I can understand it being exhausting and overwhelming too. House guests are usually never a relaxing thing because you always have to be "on." Please keep checking in and updating. I know many of us don't post often here, but I think we all still check in. Many hugs to you. Enjoy your upcoming getaway! xo

Ml - I have horrible joint pain from menopause too, which chemo first threw me into and then I had a BSO/hyst, so it's here to stay. Mine is mostly in my ankles and fingers. It takes my hands a good 15 minutes to warm up in the morning as I can't bend my fingers. No fun. I've found that diet and exercise greatly help my hot flashes, so I try to do my best with that...but it's not easy!

Hello to everyone else!

Imheretoo

Allydp you're right about people checking in but not posting. Guilty as charged. I think often of you ladies, and do check here to see if you've posted on how you're doing. But then-- when I go to respond, with my concern for the ongoing things so many of you are dealing with, I feel inadequate-- kind of out of place to comment-- (the guilt of the ones that by chance got dealt an easy hand with all this stuff--so far, at least). And reporting about how I'm doing really fine, without even any important or truly bothering side effects of therapy, seemed oddly like it would sound like crowing, when so many of you have been left with big things to deal with. So I end up putting off responding.

I hope the other people who are silent are silent for the same reason-- because things are going fine!

And to those of you who are going through surgeries and side effects and ongoing worries about the disease, my hearfelt hugs and hopes for a good future!!!

It's December now, so I'll be the first to wish you all a truly very good year next year.

And Allydp-- Love the new pic with all the re-sprouted hair!! Yay!

quiltlibrarian

I also check in too. I want to wish everyone a merry Christmas and a very healthy new year.

Margaret

ml143333

Merry Christmas and a Happy New Year to everyone!

Allydp

Merry Christmas to you Mandy, and to everyone still checking in too! xo

ganzgirl2010

Heyyy everyone ! My god its been awhile since Ive been on. I'm doing well overall...but, my spinedoc incidentally found nodules on my left thyroid. So, I went for the U/S last week and it wasn't good. Sooo, now going for a biopsy on October 12th. Of course IM scared to death right now...kinda bringing me back to hell form two years ago. Does anyone know or ever heard of BC spreading to the thyroid ??

Hope everyone is doing well

Allydp

Ganz - it's great to hear from you, but I'm sorry it's under such a scare. I've never heard of BC spreading to the thyroid. Have you had any more follow ups or testing since your last post?

Hope everyone else who pops in here is doing well!! xoxo

Milaandra

Ganz, tell us what's going on!

Allydp

Mila! How are you? It's so great to hear from you!!!

ganzgirl2010

The left sided nodule was benign but the right side wasn't .

ganzgirl2010

Oh boy...Im sorry, how are you Ally and Mile ??

Milaandra

Oh, I'm sorry Ganz! Do they think it's a met or a new primary?

I'm...well, it's good news/bad news. The good news is two and a half years totally stable. The lesions in my spine are sclerotic, which means they've filled in. The bad news is, I got ONJ from the damn bone strengthening shot. Pretty bad, too. I'm supposed to get an operation at some point over the next 10 weeks.

I may chicken out! LOL!

Allydp

Ganz - I'm so very sorry. Please check in when you can and let us know how you're doing. What is your current treatment plan? Sending you lots of love and strength.

Mila - How wonderful you've been stable for 2 years. I do think of you often and wonder how you are. Is ONJ a condition of the jaw? I'm so sorry. I wouldn't be thrilled about having surgery either. I hope you'll keep us posted. Also sending you lots of love and strength.

Milaandra

How are we all doing? :-)

ml143333

How are you doing???

I am hoping that everyone in our group is doing well since no one is active anymore.

I am doing ok. Getting ready to start a different AI since the last one (Femara) was causing such depression. I've been off it almost 6 weeks and feel like my old self again. Pretty scared to go on Arimidex, but have to go back on something since I'm only 3 years out.

Hope everyone else chimes in!

angelfaith456

Hi Everyone!

Just checking in..I'm doing ok. I hope everyone else is too. Didn't realize it has been 3 years until I saw my oncologist today. Got real emotional for me because it seems so much longer. Words can't describe how I'm feeling. Just gotta keep positive and live each day as if it's your last.

Stay positive everyone!

Katcan

I had BMX without reconstruction. I have many questions of others going flat

Milaandra

As for me, I'm three years stable on Tamoxifen now. The surgery for the ONJ seems to have gone well, and my body doesn't seem to miss the Xgeva (Denosumab) at all. I've resisted going back on it. If I end up with more lytic lesions at some point, and it seems necessary, that's one thing, but I'm not taking the shot if I don't actively need it!

Leapfrog

Hi Katcan, I'm new to this thread. I've been on others for a while now. I had BMX without reconstruction in October 2016...nearly a year ago now! I don't intend to have reconstruction and I'm fairly happy being flat, apart from clothes not fitting well. I don't go out except to the Cancer Centre for a five weekly check up because I'm on a trial for Ibrance and Femara and have Grade 3 neutropenia and extensive bone mets which make me fairly immobile so, as my family are comfortable with seeing me flat I only wear my prosthesis bra if we're having visitors who might feel uncomfortable about my flat chest. I don't like wearing it because it's heavy. You say you have a lot of questions. I've tried to cover what I think you might want to discuss. Anything else?

Milaandra, do you mind if I ask how long you were having the Denosumab shots before you had ONJ?

Milaandra

I think I had about six of them...maybe a few more. It's hard to be certain because I developed pain and while I was waiting for a referral to the dental hospital they would have me skip a month or two, then I'd get diagnosed (wrongly) and they would start them up again. It was definitely less than 12, though.