Starting Chemo in September 2017

Travel_Girl

Mkn - good mindset! It helps. One more down- woohoo.

toughcookie_21

Hi ladies! Hope you are doing well! mamfelice and mkn, it’s good to hear you are almost done with chemo! Travel Girl, sounds like you’ve recovered well from surgery! I don’t come on here as often as I had, but will still check in occasionally. I’m heading back to the office starting January 2 and will resume my travel responsibilities later in January. Here’s to a much better 2018 for all of us!

PauletteK

Mkn ... woot woot!! Getting closer?

Happy new year to all ladies.

mkn86

getting closer Paulette!! I just keep praying that i don’t have side effects or allergic reactions so i can complete 12 doses

Happy New Year everyone. I wanted to let you know I would not have made it this far without each and everyone of you. I am grateful. 💕

OCDAmy

Hi everyone! So happy to see everyone getting closer to the end of chemo. I hope we can all stay in touch as we move on.

I'm nearing the end of rads. Very red and itchy right now. The machine is down today so I'll get a longer break with the center closed on New Years.

I finally went through the mounds of papers I accumulated in the past year and organized the important ones. We are building a big bonfire on NYE and burning the rest. It will be my way to say goodbye to the worst year of my life.

Wishing you all a happy new year and a better 2018.

PauletteK

Mkn, you’re getting close to the end of the tunnel, send you prayers and good vibes.

I’m starting my #16 today, skin is holding up well, but I can feel radiation Hit the bottom of my skin. Last night I sensed uncomfortable under my armpit so glad I have three days rest. But next round will be tough one I can figure that out,

Amy, we will get there. Several of us are in FB private group, anyone wants to join, please PM me.

Happy new year to everyone.

Travel_Girl

Amy I have been doing the same thing -- went through mound of paperwork and folders from med centers/visits/appts and trying to keep what I actually need. The bonfire is a good idea, I just used my shredder -- did/does feel good.

For the first time since I can remember I also filed my entire FSA before the end of the year. Combination of many expenses to pick from to file AND time on my hands. My goal is to not have nagging paperwork as I plan many fun things to do in 2018.

So happy to hear you about to be done w/ rads. I slept with Aquafor on my rad areas every night (and all day if I wasn't going anywhere) during my rads years ago - really helped - gooped a ton of it on there (threw away the sports bras/shirts used when done). I am doing the same thing on my surgical breast/skin during this expansion because so dry where I live and the heat is blasting.

I am at 100cc's so far -- waiting to see PS on 1/5/18 before I continue and fingers crossed my surgery schedule for 3/8/18 sticks. One of my TE's is not in the ideal place, the Dr. is going to see what magic can be done when she actually sees it (sent a photo) - no idea what options might be - except I read they sometimes will go in with a surgery to move the TE first! Ohmm, must stay off the internet and just see what the Dr. says. I keep telling myself this is a cosmetic issue, not a health issue - get perspective

Mkn -- get the calories in, try to get exercise in and stay 'calm' -- in short stay as healthy as possible, it helps so much. You can do this -- just make sure to give your body enough fuel with good nutrients, sleep and rest to help it repair itself. Eat those good things even when you don't want too - for your healing. Also consider acupuncture if you haven't already.

Cheers to a fantastic 2018 everyone. Happy Healing - physically and mentally.

OCDAmy

Travel girl, I'm not happy with the way my breasts look right now. I had nipple/skin sparing on noncancer Breast and it sits lower that the other Breast and the nipple is definitely not in the right spot. Plus I don't think they are big enough. I see PS a month after rads and hoping she can reassure me this can be fixed during exchange. How is the expansion going otherwise?

Travel_Girl

Amy -- expansion is easy peasy -- honestly the 10cc's at a time is good. The TE's themselves are hockey pucks -- and hard as a rock!! The expansion process itself I can say is 'effort less' and pretty cool that I can do it myself. I did skin/nipple sparing on both sides - they are at different levels, etc -- however - one is radiated and the other isn't - so that is nothing new to me. I hope my PS is a master

We will see how the first plane travel goes on Sun 1/7 - that should be interesting.

MamaFelice

Happy New Year ladies! As I also wrote to the Oct chemo thread--Here's to a new year filled with new promises, inner strength we never knew we had, paying our experiences forward and spreading love & joy like wildfire!!

Wanted to check on those of you that headed back to work after the new year like toughcookie-- how things going? Travelgirl-- you are traveling for work in a couple days-- ready? Where you headed? I'm a caterer and teach cooking classes and once fall wedding season passed, I basically put everything on hold until spring weddings start in March. I'm enjoying the break and hope to carry this calm with me moving forward. Any of you Type A personalities? I bet many of our BC sisters are....plus people-pleasers.... plus caregivers. Just curious.

Can't wait to get chemo #5 over with next week. I just want to get over this hump and focus on reaching the end! Then rads.... sounds like you all are handling them so well. Great to hear. Anyone considering Xeloda? My doc mentioned it today if I cannot make the Ibrance receiving branch of the PALLAS trial. OCDAmy-- are you doing PALLAS?

Touch base when you can! 😘

OCDAmy

MamaFelice, you are getting close, that is great news! I have 6 more radiation treatments to go! My skin is a mess now, very red, itchy and peeling. They use a bolus on my breast every time which helps bring more radiation to the skin and the tissues right below. So, the RO said that is why my skin is looking so bad - it is doing its job. Ugh, ready for this to be over. I see my MO in three weeks and we will talk about next steps. So I will see what he thinks about the PALLAS study and which AI I will be on. He had said something else about checking to make sure I am in menopause (even though I have not had a period since May, I guess he wants to be sure). Happy to report my hair is coming in very nicely (although really gray) and my eyebrows are fully back and I have baby eyelashes. Even had to shave a few hairs on my legs and non-radiated arm pit.

Hope everyone else is doing well. I imagine many have moved on and may not be active any longer. Hugs to all.

mkn86

hi everyone just checking in!

Guess who had a reaction to carboplatin today! ..... me. my brother walked into my space in the infusion room (patients are separated from other patients woth curtians) and was shocked to see swelling in JUST my sinus area. i had a big red stripe on my skin only on my tzone and my lips and nose were swollen.

Nurses were there to handle it and another doctor. which is a good thing. we were all calm and when the other nurses asked my attending nurse what happened i just said “i tried to put rouge/blush on my face... it didn't come with instructions" 🤪

anyway they stopped carboplatin the second they saw it, monitored my blood pressure, and gave allergy meds and also waited until the swelling subsided before releasing me. And i have to take claritin until saturday. and avoid allergens until saturday. and also a follow up with my doctor tomorrow if symptoms persist.

My doctor also said get an xray because the past two weeks, they were not able to get my carboplatin infusion to top speed (490-500mL per hour) and were giving me carboplatin at 400mL per hour during infusion 7 and 8. So they want to check my port if it's twisting inside or something. I'll know more about the next steps (reduce dosage, slow down infusion, or remove carboplatin) once i see my oncologist.:)

I'd post photos but i think my brother callingb me rudolph for 20 mins was enough 🙃

PauletteK

Kat, this is first I heard of reaction to carboplatin, I had reaction to taxol so they slow down the infusion from one hour to three hours long. Two more infusions you will be done! Yeah!!

mkn86

yes paulette it’s strange and i had 18mL left on the drip when i reacted. even the nurses said it’s more common for people to react to taxol than carboplatin.

another one to tuck under “kat always falls under the exception” statistics.

PauletteK

Kat, I didn’t have reaction on taxol until either third or fourth infusion and it acted up on the end also. We are in the same club. Hahahaha

mkn86

Yes but carboplatin allergies i couldn't even find on the net hahaha it was always “watch out for taxol" 😔 even the nurses remember the name of the other patient who reacted to carboplatin from years ago because it was so rare.

kind of like how i was watching out for inherited heart disease and then BOOM! breast cancer. Hahaha! even the BRCA2 + TNBC tumor... they don't have enough info on it because it happens to maybe 0.3 percent of patients. oh cancer. the gift that keeps on giving. 😂

And lately i’ve been barely passing my blood tests. i wonder if there’s a way to up the counts. now that i’m off allergense i cannot have the peanut husk tea that usually drink for WBC. and this weekend i’m going home to my parents with my brothers and having a pork dish called Menudo. pork sauteed in tomato sauce and bell peppers and garlic with pork liver and potatoes and carrots. major comfort food for me. 💕

Well in other news i was able to sleep 4 hours today despite being on steroids! it used to keep me wide awake! VICTORY! 🙃

PauletteK

Kat, on the end of the last few taxol I able to sleep few hours on the infusion day. I took Ativan plus melatonin. Last couple nights I need melatonin to help me sleep.

mkn86

thanks Paulette. my MO still hasn’t mentioned taking Melatonin and i’m okay with it. But he did put me on iron supplements. which i sometimes forget to take.

Last week MO mentioned mastectomy as the primary surgery option. i am not handling it well. up until my MO said it, i still held out hope that maybe i’ll end up with a lumpectomy. i can almost see myself begging my surgeon. and it brings out the frustration of knowing that despite the chemo, it didn’t work as well shrinking the tumor. but i understand the importance of saving my life vs. keeping my chest. and all i could think about was how cruel this all was for it to be happening at all. I am still not okay with it and considering seeing a counselor already. I know i have to stop being so naive about hopig and about my surgery options. i just feel so so so stupid for not finding this at an earlier stage or something. I haven’t gone on to the other threads because i want to process this too. and i’ve been lookig at posts of people who’ve survived TNBC Stage 3 for years... just so i remind myself what’s at stake.

so i don’t know. maybe my question is... if there’s a thread you ladies have encountered for surgery for TNBC with large tumors, please point me in that direction?

It’s really not a good feeling when hope drains. all the optimism that has kept me going is running pretty low at the moment.

still trying to begrateful despite everything,

Kat

beauz

Hi mkn86, sorry to hear you are feeling low. I found that AgathaNYC in October 2017 chemo thread may do a lumpectomy. Here is her signature

Dx 9/11/2017, ILC/IDC, Right, 6cm+, Stage IIIB, Grade 3, ER-/PR-, HER2-Chemotherapy 10/5/2017 AC + T (Taxol)Radiation TherapyChemotherapy Xeloda (capecitabine)Surgery Lumpectomy: Right

Hope this will help you a bit.

mkn86

thank you beauz, i think i’m also following a thread that Agatha started about response to neo adjuvant chemo. I’ll try and reach out to her too.

my case has always been the odd one. when i got an ultrasound befoe starting taxol, it showed there was liquid again in the cyst. so i can’t know for sure about shrinkage. but yeah i guess i have to start being realistic about things and have a look at the options

OCDAmy

MKN, I am not triple negative but I did have a BMX back in July with tissue expanders. It was not pleasant but honestly the recovery was not as bad as I had envisioned. I was scared because I have never had surgery before and this is a pretty big one for my first time. I did well (I did get sick from anesthesia upon waking up) but no major problems. On the non-cancer side I had a nipple/skin sparing and it looks really good. I plan to get a tattoo on the other side.

I know how hard it is to think about this but it is doable! If you have any questions about the surgery, let me know. Hugs!

Amy

PauletteK

Mkn, I’m sorry that you are feeling so down, saving your life is more important. Many women had mastectomy then have reconstruction later. Have you considered that? I know you are young and you have many years to go.

Talk to other people, keep us posted.

Wonderwoman386

MKN- I am 31. I miss my natural breasts every single day, but I will tell you how reassuring it is to know that all the breast tissue is gone. I do not have TNBC, but I had a large grade 3 tumor. And I wanted to decrease my risk and control as much as I can so that I only have to do this once.

Travel_Girl

MKN -- having to think a BMX at your age is SOOO difficult and I honestly and truly feel for you. I had a lumpectomy 12 years ago and had to have scans EVERY 6 months ... alternating MRI's and Mammograms ... it was time consuming and stressful. Whatever you decide, such a personal decision (and it is your decision) -- just make sure you are ok with the 'after surgery care' plan.

I also had a BMX on Nov 27th, nipple sparing on both sides - it stinks - and I could have opted for another Lumpectomy as my second cancer was in the other breast -- I was just 'done' with it I guess. As OCDAmy stated, if there is anything you want to ask or have questions about - please ask. My recent cancer was TNBC (first one was not). The BMX was not as bad as anticipated in terms of recovery -- I suspect your issues are not w/ the surgery itself, more w/ not having your breasts.

I found this blog post to help me a lot -- it might help you - she is a young woman dealing with BRAC head on ... while not the exact same issues you are facing, I think it helps to know you can still be sexy with reconstruction if that is the way you choose ...

https://theroadlestraveled.com/double-mastectomy-s...

Travel_Girl

Today I am 11 Weeks PFC -- no I don't count it anymore, I just added appts in my gmail calendar for every Wednesday so that I would remind myself to be full of gratitude and happy each week that passes.

This week was my first time back in my office since August (i live in a different city to my office). It was awkward and uncomfortable most of the time, I am glad to have that milestone over!!! Of course with all of it -- the damn hair is the big kicker!!!

My chest is a fraction of the size right now (still expanding and could not find good things to fit over expanders - so didn't!), I lost about 15 pounds -- and of course it was my hair that was the hardest part. Ugh! Onward ...

OCDAmy

Travel Girl, didn't you cold cap? Did it work? I went to a bra shop that specializes in mastectomy and they gave me these sticky gel-like inserts to put in the bra. As you expand you peel off a layer of the gel insert. It has three layers. It worked really well. They were pricey but my insurance company paid it. Now with my burned skin from rads I am just going braless even though one breast is smaller and lower than the other.

I am 11 weeks PFC on Friday which also happens to be my last day of rads. My hair is growing back quite well but I still wear a wig for certain work meetings but not with my staff. I am still wearing cute hats but I think I am maybe another month from going with a pixie cut. Thought I'd embrace the gray but now I've decided to color it again.

Hope everyone is doing well. I am so ready to be done with this.

PauletteK

I’m going to be 8 weeks PFC on Friday, still have 7 more radiation to go, not ready to put away my hat, I think I have to wait several months before I can have pixie cut.

Travel girl, must feel good to go back to work, back to normal life.

I’m dealing with my medical bills, just hard to believe how many charges my insurance disallowed. Having PPO is good but tough to deal with all the charges.

Wonderwoman386

Today, I rang the bell!!!!

OCDAmy

Congrats WonderWoman! What a lovely photo.

PauletteK

congratulations wonderwoman!!! 🍾🎉🎊🎈💃🏻💃🏻