Starting Chemo in September 2017

mkn86

amy, it feels wonderful!!! surgery is scheduled for the first weekend of march.

A month in between to meet more doctors and have more tests and rest in between.

I have decided to reconstruct much later. After i have crossed my high risk years as triple negative. i am still sad to be losing a breast to this disease but i feel calm about the next steps which i take as a good sign

OCDAmy

mkn, I am glad you feel calm about the next steps. Do keep us updated on surgery. The recovery for me (BMX) was not nearly as bad as I thought it would be.

I got disappointing news. I was trying to get into the PALLAS trial. You have to start the trial within one year of diagnosis. For me, that was Tuesday but they were willing to give a two-day grace period to get everything set up. I have had two blood tests, filled out a bunch of paperwork, was examined by the MO conducting the trial, and all they were waiting on was a tissue sample from my surgery. They requested it nearly a week ago and as of noon today they still had not processed it. Noon was the deadline for me to get into the study. I am really disappointed. There was no guarantee that I was going to be on the Ibrance arm but I was really hoping. I am really, really scared this cancer is going to come back and was feeling a sense of hope that I could do something about it on this trial. Cancer continues to suck and not cut me a break.

Travel_Girl

MKN -- CONGRATS -- major milestone. Use the next month to regain your strength. Going into surgery as strong as you are able to get helps.

I have been going through Breast Physical Therapy following my surgery -- basically its like deep tissue for your arms and scars -- I would recommend considering that or at least asking about it. I have some chording on both my left and right side (I had a double Mx) and they help break it up. I never knew about before so just sharing.

AmyOCD -- wondering when/if will come back is always something that you live with, they key is how you handle the feelings. I should have gotten help the first time and learned how to deal with that feeling. If there is one piece advice I would give you is to talk to someone about how to deal with those feelings - someone that is not your family -- as we like to be strong for them.

I have been traveling for work and can't wait to get these TE's out of my chest -- my surgery was moved up one day - March 7th.

Just over a month to go with these rock hard TE's that expand in the airplane . My chest size is pretty small, learning to come to grips with that as well -- as MKN so eloquently stated - the grieving process. It doesn't bother me to day to day - just certain moments, like when the new PT therapist said - 'oh you haven't expanded much' and I said, mostly all the way -- yes, yes, she should have been more sensitive -- just made me think, yes -- they are pretty small.

Happy Healing everyone.

mkn86

thank you amy and travel_girl

Amy i hope you get into the trial. it does feel kind of weird to suddenly not have to do blood tests and chemo. now i’m just praying my hair starts growing back. doctor says effects of chemo, it will still be there when i go into surgery.

travel girl, nice to hear you’ve been travelling a lot. I wish i could go back to that too after treatment.

some days i wonder how much of my pre-cancer life i can get back. been feeling a bit down lately. And i keep thinking maybe i just need to keep myself busy but... these days i just don’t have enough motivation to. so i end up reading a book all day or watching tv series and chatting with people. i’m not in the city so it’s hard for peopleto visit and my phone becomes a lifeline of sorts. But i’m trying to get off of it.

OCDAmy

MKN, didn't get in the trial and am bummed out about it. They had another study testing aspirin and breast cancer but my MO and I discussed and I just started taking a low dose coated aspirin every day. I don't see my MO now for 6 months and I am anxious about that. I don't want to have constant worry so I may make an appointment with one of their therapists. It is free so I figure I should give it a try.

When is your surgery?

mkn86

i’m sorry to hear that Amy. i do get that feeling of wanting to keep actively kill cancer cells... today i actually decided to keep a pitcher of green tea (with lemon and turmeric) at home that’s concentrated so i can have warm or iced tea through out the day and only ever have to make one big batch.

right now March 03 but then the surgeon is out of the country so they might move it a day or two after. i was finally able to pull myself together enough to make calls for all the appointments i need. next are supplies that i’ll need post surgery. i have actually been reading the mastectomy threads here

MamaFelice

Checking in with you gals after catching up on reading posts from last couple of weeks....or should I say since my LAST chemo!!! Yay!! What a great feeling to know with each side effect I'm enduring right now that it will be the last time I have to feel like this! And CONGRATS mkn86 on finishing too! I've so enjoyed celebrating with everyone as we all continue to cross the finish line! I'll be thinking of you come March, and wish you the best with your surgery. I had my BMX before chemo, and it is amazing how the body recovers. It is time to focus on rebuilding our strength and health! Yay!💪🏼

TravelGirl-- so great to hear from you! How has getting back into the full swing of work been? I cannot imagine that the flight would affect your TEs!! I know you will be relieved after your exchange! How your hair hangin in there? Have you finished shedding and gone back to normal hair care? How is the growth?

Paulette & Amy-- quick hello here and see you back on Fbk! ☺️👍🏼

Off to catch some zzzzs! Happy Health to all!!

mkn86

congratulations on finishing chemo mamafelice! Time to celebrate!! 💃🏻💃🏻💃🏻

The wait for surgery is a pain.turns out my surgeon is on vacation feb 19 until march 7th. March 5th is (i think) the latest i can have surgery. So i need to find another breast surgeon this week or a surgeon oncologist.

i spoke with a plastic surgeon about closing the tumor site. he said best case is he will be able to close it without causing tightness in my shoulder and without taking skin from anywhere else. next best is i will need a skin graft because chest wall is not removed by the breast surgeon and then if the BS does remove chest muscle, PS will move my Latissimus dorsi muscle to the front so that i make it through radiation. PS said consider breast reconstruction much later after treatment.

PS also said when he sees patients like me he wonders what he was doing at 31 and that it must be difficult for me to be amking all these decisions at my age and to even have to go through this too. he's very empathic. and i trust he will do a great job. I hope that this week i find a BS that i trust just as much.

Oh and today i had that coffee i’ve been looking forward to. it’s warm here in manila at the moment. 34 degrees celsius! so it is iced coffee and my favorite mug. First cup of instant coffee since i left Frankfurt. The hazelnut flavored one i figured i needed that extra boost of happy thoughts.

OCDAmy

MKN, I met with my PS a few days ago and she is suggesting the latissimus dorsi flap procedure with implants. It scares me, it's such a big surgery. I was on the thread for this topic and there are so many negative women on there...I suggest not reading them! I don't know what to do. I'm 53, I don't know if perfect looking breadts are that important for me.

That coffee looks delicious. I'm glad you can start enjoying it again.

mkn86

hi Amy! yeah i’ve seen that thread and don’t linger there. if your doctor suggests it, ask him what factors he’s considering. the posts in that thread can get scary.

the reason i’m okay with his suggestion is because i asked my PS what we can do with the lowest risk in my case. i also asked him about range of motion and he says the smaller muscles will take over but i have to be patient with it. I asked him hiw many days i need to be confined and how long it usually takes before patients are okay for radiation.

I also try to keep in mind that the successful ones that used their LD for either chest muscle replacement or breast recon are actually less likely to post than the ones that encountered issues.

Did your PS give you a second option? How long will recovery take for the LD Flap with implants?

PauletteK

I haven’t been on much lately but still active in FB group. MKN I do miss you, glad you are doing well. I got the orchid for Chinese New Year, was busy with all this family gathering. I thanks God that I have enough energy to celebrate with my family, 🙏🙏🙏🙏

Here is a picture from my Saturday coffee hang out place, Alice the owner always has nice flowers there.

MamaFelice

mkn-- thanks for the sweet end of chemo congrats! Def happy to have put that behind me! I just had my ovaries removed on Friday and recovering from that surgery, and then on to rads. Looking like I will be receiving proton therapy at MDAnderson. Very excited about that, but not about being away from my family. We'll work it all out-- figuring in the end, time away will be a blip.

Have you made any final decisions regarding your surgery or the date of surgery? These decisions are pretty huge especially since you are so young. Keep us posted on your plan... sending hugs and prayers!

PS: I ❤️Your Little Prince mug

mkn86

hi ladies! just wanted to update you. UMX for me on March 06 my side of the world. Maybe by the time you ladies wake up on March 06, i would already be done with the surgery please say a prayer for me and my surgeon that things go well. I will have to wait for a year after rads for any reconstruction if i ever decide on it. implants are out of the question because i don’t feel comfortable with the idea od a foreign object in my body. hehe

paulette, thank you those flowers look lovely! I am happy to hear that you have started having coffee again and it seems like you are able to enjoy it!

mamafelice, you’re right, time away will be a blip. i wish you great recovery. eat protein! that will help speed recovery up.

Hugs to everyone!

Travel_Girl

Hey gang, but off line for a while, was trying to get back into the swing things at work.

I had my exchange surgery from TE's to Silicon implants yesterday. Whew another milestone. Much easier than my BMX.

They put in 450cc - no idea what that will look like yet - I am swollen and in a bandage. It will be what it will be.

PS had move my nipped a little, so have another nipple scar - ah well what is another scar in my battle worn chest area.

MKN -- how are you??? I hope doing well.

OCDAmy

Travel Girl, good to hear from you and that you are back in the swing of work. What kind of implants did you get? Did you go with smooth or textured? Did you get any fat grafting done? sorry for all the questions, I am still trying to figure out how to move forward with my exchange surgery which will probably be in early June. My PS wants me to consider a Lat Flap for the radiated side but I am not sold on that.

mkn86

my dear september lovelies, surgery went well it took about 2 hours, and after 2 days i was allowed to go home.

I am just resting and recovering and relieved mostly. I woke up from the recovery area and tried to figure out what parts of my body hurt. When i realized pain was only coming from my right chest/armpit area, i was so happy and relieved because that means the doctors didn't have to do anything complicated like a skin graft or moving my LD muscle to the front.

Even i surprised myself by being so upbeat and full of energy immediately after surgery. Despite all the fretting and worrying and crying i went through before surgery, i feel really good at the moment. Even my therapist was so happy to see my sunny disposition. i am just really glad i am still me despite all this.

And thank you so so so much for always sending me encouraging words when i was doubting myself and my capacity to overcome this. i really really thought this was what was going to break me you know? anyway here's me on the day i was sent home from the hospital holding my discharge papers:

<photo removed

OCDAmy

So great to see a big smile on your beautiful face! I'm so glad to hear that you are feeling upbeat! Yay!

So what did your surgery involve? Did you have both breasts or just one? Did you get an implant, if so what kind. I'm due for my exchange surgery in a few months and trying to get as much info as possible.

Happy to see everyone moving onward and upward!

Travel_Girl

OCDAmy - I have smooth implants, as there is a slight chance of rare cancer w/ textured -- yes, the smooth could move, I took that chance. I ended up with Inspira SSF 450cc -same on both sides. They are the newer ones with more fill than the traditional.

I did not get any fat grafting done at this stage, mostly cause I have a side with radiation from prior BC and I decided to wait to see how it does (of course, I have myself convinced that side is in infected ...ohmm, I hope it is not). I fully plan to do revisions if needed later with some fat grafting ...although my PS said it would be difficult to find a donor spot. Cross that bridge after the healing of the first round and see what I think.

My TE's moved quite a bit -- think out toward my armpits, so my PS had to do more pocket work to get them back in the middle, now I am searching for compression bras to keep these implants from migrating. Who knows If I could have done anything differently - I wore sport bras all the time even at night.

As for your lat flap, I would say for me, I decided to try the implant first, if that doesn't work, I will use fat/lap for that side. I had implants prior with my lump, so fingers crossed. The TE exchange is pretty easy, i was feeling 'ok' the next day ..and no pain pills other than OTC to sleep second day.

MKN - woohoo!! Love that big smile - you did it. So happy for you.

Onward ladies, cheers to more healing.

OCDAmy

Travel Girl, thanks for the feedback. I meet with my PS next month to discuss what I want to do and get surgery scheduled. I really want to just try the impants first I think but there is some appeal to the lat flap using my own tissue. I have been through so much the thought of another big surgery and 4-5 week recovery is not appealing. My PS also suggested smooth implants. My radiated-side TE seems to have moved up higher (it was high to begin with) and I am still not happy with the size. She is going to try to fill them some more but not sure the radiated side will be able to handle it. Ugh, I am so done with this crap.

Travel_Girl

I hear you on being done w/ this crap! My implants are smaller than I would picked due to the radiated side and ability to handle anything bigger. It is a difficult decision and I know you will do your research and decide what is best for you.

I had my consult to have my ovaries removed today -- I asked if she thought it could wait until the fall as i just needed a break from surgery recovery, chemo, etc. -- I was feeling pretty strong going into the implant exchange, being just over 4 months PFC, 3 months from surgery - feel like a took a small step backwards - to move forward. The idea of another 1 week + recovery +6 weeks of low low impact exercise made me want to scream. (not to mention the kicking into menapause a tad early)

2 surgeries down, 1 more to go - definitely ready to be done with this crap! When I get think about it too much, I remind myself that is good to be alive, to be on the mend and that I have the option to have an elective surgery like recon and OOO removed and I move on.

mkn86

Just a quick happy easter weekend to everyone!

OCDAmy

It has been a year since we started this journey together. I realize most have moved on and are not on the boards anymore. Some of us have connected on Facebook. Just wanted to check in and see how everyone is doing one year later. Hugs to all, and thank you so much for your support during chemo. I truly do not know what I would have done without all of you. Hoping you are well and enjoying life.

Amy

mkn86

hi everyone, just wanted to check in. 1 year since diagnosis on Aug 11 for me first round of annual scans coming up in october.

things get easier the further out i am from treatment. after radiation my doctors said i should go back to my usual. i took 4 months off of work and was in the states for a month. I literally just got back home today.

it felt so good to be able to touch on some milestones that i kept holding on to during treatment

Hugs to all of you ladies

OCDAmy

mkn, so nice to hear from you! Sounds like you are doing well. I decided to have DIEP flap on my radiated breast so I am still dealing with this! I'm on an AI now and so achy. Otherwise planning two weddings for my daughters and trying to move beyond cancer.

Henrietta405

I’ve not been reading here a ton since I’m Stage 4 this is always ongoing for me. But I am doing great. I’ve been feeling really good, my herceptin and perjeta side effects are mainly just annoying, and I sometimes go for a couple of hours a day without thinking about having cancer. I have been thinking back to last year, and am sad for that past me and how badly I felt during chemo.

Moderators

Henrietta, we are so happy to hear that you're doing well on Herceptin and Perjeta, and that you have moments of not thinking about cancer!

OCDAmy

Henrietta, so good to hear from you and that you are doing well. I hope all of our September 2017 chemo group is doing well and moving forward.