TCHP Ladies Late 2014 / Early 2015

SugarCakes

So, in addition to my vision being totally shot at times, I also have this feeling of my lower eyelid tear ducts being completely full or tears, yet there are no tears or even puffiness. Anyone else?

raleighgirl

sugarcakes,

My eyes are always tearing. I also have had constant eye twitching since round 4. My oncologist says it will me all resolve itself.

As far as reconstruction, I was not given the option of having immediate reconstruction because of my need for radiation. Because I am thin, I was told my only option is delayed reconstruction with tissue expanders and I also have to do the lat flap! The PS said because I do not have fat deposits elsewhere it is necessary to get some healthy tissue transferred and the lat flap is the only option for very slender people. Apparently radiation can cause enough damage to the skin that healthy tissue needs to be transferred so that the breast implant does not encapsulate. At least, this is what my surgeon says.

I am having a hard time knowing I have to go eight months after surgery without any breast. But, I guess it does give me time to think about if I want to remove the other breast as well during reconstruction. It also gives me time to get a second opinion, which you may want to consider doing as well. My oncologist definitely recommended getting a second opinion on recon.

IndyGal35

I've considered counseling as well. I feel like I'm managing the very normal stages of grief, but I worry about my mental state when I start to truly recover and process everything when I'm better.

I have put on such a brave front through everything so far. I've only had 3 meltdowns in 3 months, but I have a tendency to bury my stress and feelings during times of crisis. I don't want to lose my sh*t when I'm finally free and ready to return to my real life. I think that connecting with a professional in advance may be a healthy way for me to work through things ahead of time instead of swallowing them down and coping later

SugarCakes

Anyone among us didn't have or will not have radiation? If so, what lead to the decision

MaryJC

I'm having radiation. I don't think it was really my choice the way they come at you. I need to call to start the process now that my chemo is complete but keep forgetting. The nurse explained it to me. Makes sense.

loriekg

I have been told I will not be getting radiation. Due to it not being detected in SNB.

SugarCakes

Loriekg, I have run across several women that were one or both hormones positive as well as her2+ that did not have radiation.  I wonder if it's partly due to ongoing targeted hormone therapy.  These other women also had smaller tumors at DX and did immediate surgery vs. neoadjuvant.

I'm getting ahead of myself.  I won't know the extent of my response until surgery.  If there is still any cancer, in the nodes especially, I will likely not second guess radiation.  If all is clear, however, I have questions!  I just need to have more what if conversations with my MO and BS.  I emailed my MO (his preferred choice of communication).  He responded that it was complicated and he would call me to discuss if like.

IndyGal35

I will be getting rads due to tumor size, location near my armpit, HER2+, and grade 3 results. My MRI showed negative lymph involvement, and my ultrasound found one possible node, but the "bump" could have been due to post-biopsy response.

Since there's some indiscrepancy in results, and the PET showed "some" nodes glowing at a score of 3, they feel that they want to target the lymph nodes with radiation to rule out the possibility of anything remaining - even if the SLNB is negative due to neoadjuvant chemo.

SugarCakes

Indygal, you may have mentioned before, but what surgery are you considering?  LX, MX, BMX?

IndyGal35

Bmx. The tumor is too big for a LX - even if I have a full recovery after chemo.

I'm BRCA negative, but my MRI detected some deep fibrocytic change in my non-cancer breast. I told the BS that I wanted a bmx. She said it was 100% up to me, but she was relieved that I wanted to handle it aggressively. With PCOS, my body over-produces estrogen like crazy, so it's just a perfect storm to brew another tumor. I'm seeing a onco gyno in August to get evaluated for a full hysto. With my history of menorrhagia, pain, and triple positive breast cancer, I think I'm a good candidate. I'm actually excited about it! After so many years of awful girly issues, the thought of relief thrills me. :

loriekg

SugarCakes...I have not been told that my ER+ status has been a factor in the radiation decision. Just the fact that SNB was negative, and the fact that I am choosing BMX. If I was going for LX then I would definitely have radiation.

Mardea15

Hi everyone. I haven't posted for quite awhile but have been keeping up with reading everyone else's. I had a difficult time with chemo #3 & #4, (ended up in hospital after #3, & still problems after #4), but #5 has been much better, at least by the third week. My LAST chemo is Tues, 5/19. YEAH!!!

I am planning on having a DIEP flap for reconstruction at same time as BMX- that is if I don't need radiation. I am having a SNB (6/12) 2 weeks prior to surgery to find out if I'll need radiation or not. My understanding is If there are no cancer cells found with SNB, then I won't need radiation & the flap surgery can be done immediately. If I do need radiation, then the DIEP flap will have to be delayed, & tissue expanders will be put in for the interim..

SugarCakes, since we both started at beginning of Feb you must be getting your last chemo very soon also!. I will be so glad to be done with that part of this year!

Tayhante

Hello..

So glad to connect with you. I am on the same treatment as you n had my first chemo March 7th. Round 2 is May 28.

I am stage 2a, 2.6 cm IBC right breast, HER2+++ and Estrogen +.

I had difficulty breathing for a few days, bone pain from shot and now suffering from major diarrhea from day 5. Today is day 10. Imodium n pepto bismol does not help. Did you have diarrhea issues? I also broke out with strange red markings on my body and large painful lesions on mu vulva n butt area. I know this is all from the drugs.

We seem to be back to back w our treatment. I have not met anyone who is currently onTCHP. Let's stay in contact. Best of luck to you. Have a wonderful day. Thank you for sharing your story!

CassieCat

I did have radiation after my MX, but I think it was due to node involvement.

MaryJC

hi tayhante, I'm TCH. Sounds like you broke out in hives. I had the same. It's from the toxic taxotere😡. Did you tell your onc? Benedryl did the trick and they haven't been back. But check with your onc first. Sorry you're having such a hard time. We all are having our difficulties sadly. Hugs.

Mardea15

Teyhante, So sorry you are having to go through all hese SEs.

I just had my last dose of TCHP on Tues. Early on my MO gave me a Rx for Lomotil with Atropine for diarrhea.. It's prescription, not OTC. That usually worked well for me but had to be very careful not to push over into constipation. The big "D" also causes painful skin breakdown so I used Aquaphor for that & it really helped.

She also had me get IV fluids for 3 days in a row after each chemo starting day after Neulasta shot. That really helped as just drinking water doesn't always keep one hydrated enough when on chemo.

I took 1 Claritin & 1 Aleve each morning for 5-6 days starting the day of Neulasta shot. That took care of the bone pain for me & is worth a try.

I also had problems with shortness of breath, fast heart rate & chest pain. Was hospitalized for 2 days for that & put on cardiac meds. The cardiologist assures me this is temporary from chemo & I will not need cardiac meds long term. There was no PE (Pulm embolism) & my echo was good. I felt so much better after getting meds to slow my heart rate to normal.

Anyway, side effects suck, but I found it to be doable & worth it to get rid of the cancer. After my 2 nd chemo the tumor could no longer be felt & my MO was very happy with that response.

Hope you are starting to feel better, but if not, be sure & talk to your Onc about your symptoms without suffering through everything first. Gentle hugs to you.

loriekg

Had my final chemo last Wednesday! I have to say I had the easiest time after this round than any of the others! My most annoying SE was not being able to eat (or nothing tasting good) for the week. But no diarrhea, no headache, or body aches!

Now on to the next step…scheduled for BMX with TE's on Friday. Is it weird to be looking forward to this? OK…maybe that's not the right way to say it, maybe I'm looking forward to getting this over with? I went clothes shopping the other day and bought several things that I would never have worn "normally"—tops with thin spaghetti straps, and cute tops that you wouldn't wear a bra with. I was almost happy about buying them…then as I was walking through the mall and thinking about what I'd purchased, I started crying. Yep…I'm also anxious to have my emotional stability back!! LOL

--Lorie

Mardea15

Loriekg, Congrats on finishing chemo! Looks like you & I finished in the same week. I have had the usual SEs after #6 & they started sooner. I'm just hoping that means they end sooner & don't last as long so I'll be ready for my trip to DC in 2 weeks. I've also been through the emotional roller coaster. Yesterday I couldn't stop crying because I felt too bad (with fatigue & diarrhea, etc) to even go to my son's 40th birthday party! I haven't even begun to buy different clothes yet, but am sure that will be another impact to my psyche.

- Marlene

DaisyQ

Lorie & Marlene,

Congrats on the huge milestone! You both sound like you are doing great. It's all downhill from here. I found surgery and radiation to be "bumps in the road" compared to the months of chemo.

One note on clothing..my TE's are a little uneven and don't have the same shape as a natural breast. I wear a bra to try to make things conform a bit, but they are still lopsided. I have found that patterned tops conceal the lopsidedness. I also purchased flowing summer tops and things with more structured material. I am shooting for exchange surgery in September. I can't wait!

Keep us updated and let me know know if you have any questions about about surgery.

Amy

PMR53

Lorie and Mardea, so happy your done with TCHP!! I finished almost 10 weeks ago and although I have residual fatigue in the afternoons, the eye twitch, most of the neuropathy, GI issues, and blurry vision has resolved. I am still getting Herceptin and am 2 days past getting LX. My hair is growing in pretty even. Feels soft and furry. So glad for you. Rest and hydrate. Try to walk when you can. Everyday you will be stronger!!

PMR53

loriekg

Thanks, Patty, Amy and Marlene! It does feel good to be done…even better when I hear "it'll be a breeze compared to chemo" when discussing—well anything! LOL

Amy…I'm glad I kept the tags on everything I bought! One maxi dress I got has fabric that may be too thin if the TE's turn out really lopsided!

I do have a question about what kind of bra I'll need for right after surgery. Won't I be all bandaged up and not have to worry about a bra for a while? Just trying to plan what to bring to the hospital.

Patty—I do still have those annoying eye twitches! This morning as I was trying to put my mascara on, it felt like I was putting it on hummingbird wings.

Marlene…sorry you had to miss the party and hope you and your son can have your own celebration when you're feeling better. I saw on another board you're having a SNB prior to surgery? Makes perfect sense! I know I would want to be prepared going in to surgery what I was going to get, DIEP or TE's!

--Lorie

raleighgirl

Lorie and Mardea,

So happy to hear you guys are done as well! I'm now two and a half weeks out. Eyes are watering like crazy, and I am so tired of my eyes twitching. GI issues still present as well.

PMR53-so glad to hear that most of the issues I am having might be resolved in a few weeks like yours.

Lorie-I understand how you feel. But all of this will be over before you know it! I am actually a little envious of you that you will be done with the recon soon. I have to wait until next summer due to radiation. My doctor won't even put a TE in during my mastectomy. A whole 9 months with I breast! Argh!

DaisyQ

Lorie,

To answer your question about bras in the weeks following your BMX.. I went home in a compression bra that had velcro in the front. My PS had me wear that with pads in it for 30 days post surgery to keep things tight. I purchased another one on Amazon. Now I wear a regular bra..no underwire though. Not comfortable!

I had my drains for 3 weeks. Here's a tip I found online somewhere: I went to Home Depot and purchased a cloth tool belt ($.79), tied it around my waist, and tucked the drain bulbs into the front pockets. I wore a tight tank over the whole rig to keep everything in place then a loose top over that. It was much more comfortable than pinning the bulbs to my clothing or compression bra. There are special compression bras with built-in pockets, but they are pricey..

I can't believe you have eyelashes at this point! That is awesome.

RaleighGirl, Bummer about the long wait..that stinks. The eye twitching was gone within 4 weeks PFC. GI issues lasted through radiation 15 weeks PFC. It would come and go. I just think my body was struggling to recover and the daily onslaught from radiation just too much. It's all resolved now!

Take care, ladies!

Amy

loriekg

Raleighgirl—glad you are done too…and sorry you've got to wait a while for recon! But in the end, better results and it'll be worth the wait!

Thanks Amy for the tip about the tool belt! I remember Patty suggesting tucking those drains in the wide waist band of yoga pants. I thought I'd "borrow" my daughter's pants and try that!

Yes—I am surprised I still have lashes! My eyebrows are practically gone, and I only have about five lower lashes on one side!! But at least I can pencil in my brows.

I THINK my hair may be starting to grow back, but I almost didn't notice because what's there is WHITE! OMG—please let this just be some starter type hair…not the real thing!

PMR53

Lorie- you made me laugh when you said putting mascara on was like putting it on hummingbird wings. Glad you have eyelashes. Are you taking Biotin? Your hair will start growing soon!! I am coloring mine in 4 more weeks, before I go on a vacation. At that point I will be 14 weeks PFC.

I had a drain 3 weeks ago for that infection in my right axilla. I had ordered 3 short sleeved zip up light weight shirts from Macy's and inside placed that stick on pink pockets from CureDiva. Placed it inside of zip up shirt and drain fits perfect. Very easy and with zip up shirt easy to get to drain.

Happy Memorial Day

Patty

raleighgirl

Lorie,

Thinking about you and just wanted to wish you good luck tomorrow! Please keep us posted and let us know how you are doing!

Ashley

IndyGal35

I will be thinking of you tomorrow too, Lorie. Check in when you can.

SugarCakes

Hi Ladies! Just checking in. May be repeating myself. Had my last chemo last Tuesday. HS friend attended with me. Brought me flowers. Some people are the sweetest. Others...

Have felt a little more random bone or joint pain this time around. Nothing too bad, however. Seem to be working through the fatigue better. Maybe it's mental, knowing this is the last cycle. Eyebrows seem to be determined to go away completely. Very concerned about my fingernails. Hoping the bruising and darkened areas just grow out and I don't lose them.

NSBMX set for July 6th. Trips to Fort Lauderdale, Atlanta, São Paulo, and Chicago set before then. Crazy, huh? Trying to speed up time.

TE with surgery but implants before start of radiation planned.

SND at start of surgery. Hoping to avoid ALND.

Started dabbling with essential oils; mostly lavender for now, hoping it can help me sleep.

Bought a wedge for sleeping. So far it's been great for keeping my ankles elevated and non-swollen. Considering renting a medical lift chair (for post surgery).

Hot flashes (sweats) the worst at night :-/

IndyGal35

Congratulations, Sugar!!! I go for round 5 on Tuesday, and my last dose should be 6/23. It always brings me hope to see another one of our gals ringing out!!!

My bmx/snb is scheduled for 7/16, so I'm right behind you. Rads will follow a few weeks later.

Hoping your side effects are minimal and that your body starts to recover quickly so you can enjoy the trips you have planned!

PMR53

Congratulations Sugar!!! You made it to the finish line. I am 11 weeks out and feel much better. Some resididual aches/joint pain and fatigue but most chemo SE gone. I am recovering from 2 surgeries in last 3 weeks and continuing with Herceptin. Planning trips is wonderful. My husband and I are going on a vacation the end of June. So looking forward to it. Rest and Recup before surgery. Your hair will start growing soon!

PMR53