July 2017 Surgery

No worries, I can't even remember if I posted on this thread lol. Couldn't replace it, I think they usually leave it out for a few months so the infection can clear up but I can't have mine put back because of rads so now I'm back to the ole one year after rads timeframe. Yay:/

i dont remember any restrictions either re: shaving, depdorant.my expanders are soooo uncomfortable. Twill,how does it feel that have the expander out if you dont mindmy asking?....

kae_md99, the surgery itself was very easy and quick, I'm always very sick after but because it was so quick I wasn't. Not sure what you're asking but I feel flat I suppose. My expanders were very comfortable so it's not like I have relief or anything like that. It sucks, I was devastated to loose it and tried very hard to keep it:/ Back to the awkward very uncomfortable prosthetics and bras. I kept my other expander so hoping that help somewhat, although I know that will be a whole new challenge. Onward and upward.

nancy,

I had the sentinel node biopsy done at the time of my mastectomy so I am not much help there. sorry! As for Over Expansion before radiation they will fill my expander 100 CC bigger then I want to be at the end of this hell to take into account for skin shrinkage. it is not to painful unless they fill to fast or to much. I have had weekly fills since week 2 when they took the air out and put saline in.

Shel

And now to make things just a barrel of fun I now have Shingles! REALLY??? WTH. is next. These hurt almost as bad as the surgery I had. I am telling you ladies this year can not go fast enough.....

53Nancy, mine were tested and ultimately removed during my BMX back in December. After testing during the surgery 1st node was found to have a trace amount so they removed 14 or so more during the same surgery which were clear. Pretty sure that's common.

Shelabela, wow, that's a new one! Shingles! Really! My lord what we go through. It's just too much sometimes. I sure hope you have a mild case, even at that I know it can me rough. Good luck and lots of healing thought sent your way.

omg, shelabela. I'm so sorry about the shingles. I know how rough things have been for you and shingles are so painful. My husband had them a couple of years ago and he was in agony.

twills, I'm so sorry you had to have the expander removed. I know you were hoping they could salvage it. It seems like treatment is never ending, doesn't it?

Kae, it stinks that you're still in so much pain. My pain had improved, but the te's are still very uncomfortable and I'll be stuck with them for at least 5 months

I am doing much better since the infection. After I got out of the hospital, I was on 2 oral antibiotics. I finished the levoquin on Saturday and still have 5 days of the doxycycline left. I saw the ps today and had my second fill - he had suspended fills for the past 3 weeks due to the infection. I'm still very flat and I think the tissue expanders are so uncomfortable. I'll get one more fill next week and then stop for chemo. So I'll have these flat, hard kidney bean shaped rocks for 5 months before he resume filling and then the exchange.

I had my chemo port put in on Friday and I,start chemo next Friday. I'm terrified but will get through it. I haven't gone back to work yet because the infection set things back. I plan to try to go back after my first chemo depending on how I feel. Did you ladies who had chemo before surgery work during chemo?

toughcookie- are you starting your chemo tomorrow? If so good luck, you can do this I made it through my first one and will be having my #2 on friday. Let me know how it goes we are the BRCA2 girls here stay in touch!!

also, i am due for an echo? i have saline in my expanders also. does that mean i cant have one

kae_md99 Please everyone do not think that your echo is gonna hurt your expanders, I just said that after I had an echo my TE kinda started to look funny. I went to ps and was told I have fluid around my TE that she took out she put a very small amount of saline in my expander I go in tomorrow so she can have another look and hopefully tell me whats going on. These TE suck enough without them being flat too. I will make sure I let everyone know what I find out.

Shel, Sorry to hear about shingles. I hope you have help

Don't know about you ladies but I'm ready for 2017 to be over.

It's been two weeks since my emergency surgery for the infection. Monday the drain came out and he took the stitches out and a small filling. Tuesday was my last antibiotic that I put in through my port. Today followed up with infectious disease doctor. Gave me oral antibiotic for 7 days. I noticed another red spot and hoping it's just an irritation and not another infection. Going to see PS to make sure. I don't want to start all over for a third time. Wondering if the flap procedure would have been better.

Has anyone been able to sleep on their side? I've been using deodorant and shaving occasionally.

Stay strong ladies. We can do this!

Redjo,

i cant sleep on my side. very very uncomfortable with the expanders... how about you ladies

shelabela, I think I read somewhere in this forum that you are to have radiation simulation tomorrow; just wanted to wish you all the best and that it goes well. Will be thinking of you.

Just got back from meeting with my PS about my flat TE, did not like their answer, "gee I'm not sure what going on there, so sorry, we will check it out in 6 months when you are done with chemo" what do you say to that gee thanks. So I get to have a flat chunk of plastic poking in my chest for 6 months. They do not believe it was damaged by the echo I had. On a brighter note I got to meet Shelabela who also had an appointment hoping hers went so much better than mine.

It's been awhile since I posted on this thread. I had a BMX on July 28th. Of 3 nodes removed, 1 was positive. I also have lymphatic channel involvement and no complete pathologic response. As a TN, that's devastating. But I've started on Xeloda (a chemo pill), my TEs are being expanded as planned and after that, I'll have 33 rads sessions over 6 1/2 weeks.

I feel lucky that post-op hasn't been too bad. One drain stayed in for a month, and I couldn't even take a shower by myself with the dang thing in b/c of how much it limited using that side. I started doing exercises right away to help with nerve pain caused by a different drain (when in, it kept resting on a nerve). As it turns out, that drain wasn't even working right, so I've had fluids manually aspirated twice. My PS said he rarely puts drains back in. But I'm almost at full ROM now.

I just started PT for back probs, but will be getting exercises for preventing lymphedema and helping with rads-related skin stiffness.

I did neoadjuvant chemo. My best advice for SE:

1) Mouth sores: Request a script for "Magic Mouthwash." It's a compounded rinse that really, really helps. Most insurance doesn't cover it, but where I am it runs about $25/bottle. It does need to be made by a compounding pharmacy.

2) Nausea: Have prescriptions for anti-nausea meds filled & ready. If it hits you, it will hit hard. If you maybe might be feeling some nausea - take a pill.

3) Hair loss: If you're in the US, the American Cancer Society provides free wigs. Call'em and see where your local wig bank is and who to call for an appointment. Getting your wig trimmed and styled to fit you makes it 100 times more flattering and real looking. I was told that most people are bald within three weeks of their first infusion. In the middle of week two, I had my head shaved after small clumps of hair started falling out. I cut it short before chemo started (from below my shoulders to chin length). For me, this was easier and therapeutic.
For tying scarves, try fabric hair bands (pony tail holders) instead of knots or over knots to better secure them. I liked putting a wide fabric head band around the edge of a scarf. It helped keep it in place and I'd add accessories like small broaches or even earrings to the head band.

Hi MCOlivia,

I hope you and your family are okay. I didn't have any leakage on my incision, but my PS's nurse seemed surprised I had no leakage anywhere, not even when my drains were removed. She said spurts of fluid then are common. Instead, my fluid built up inside, causing painful bulges near my right MX incision. The PS basically inserts a suction tube and manipulates it inside me to get out as much fluid as possible. My nurse said that as my TEs get larger, it should push the remaining fluid to where it can be reabsorbed by my body.

That worried me! And afterward I'd bleed through the bandages they put on, on my way home. But both PS and the nurse weren't worried and said everyone's different. I swear, if cancer had a slogan, it'd be "Your mileage may vary."

I ask lots of questions. I even tell people upfront that I ask questions and if they're not okay with it, to tell me because we're not a good fit. If you're worried, keep asking. At least, that's what I'd do. YMMV