Chemo Starting August 2018
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Benji, I am sorry to hear about the nodes. I bet you are glad they are out! Does your team have a plan for you? Guessing rads like the rest of us? Keep us posted. We care!
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MGJ I can only imagine the way that it must have felt, even after the fact, to read that report.
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Santabarbarian—I was absolutely beside myself after reading my op report. As a RN what I read was clinically terrifying. My BS didn't want to freak me out (I realize) but damn I was full of cancer.
Week 5 of rads done! Port out on Monday.
I actually have enough eyelashes that I could crack a new mascara open last night! Yes! Eyelashes! Really makes me feel less cancer-y.
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MGJ, it is scarey when you read those reports. I’m always amazed at how much the doctors leave out of the discussions. I’m jealous of your eyelashes, I’m still waiting on my hair and know my brows and lower eyelashes are a long ways down the road. Take care.
Hughope1, I’m wishing you a fast recovery. Let us know how you are when you are up to it.
Take care all and speedy recovery for all undergoing rads and surgery
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MGJ - Kind of re-traumatizing to read how serious and wide-spreadit was, I’m sure. And maybe just as well that you didn’t know all that until later. I always go back and read post-op notes and they are disconcerting. This is a much more minor example, but the note for when I had my port out in said they missed getting it properly into my jugular the first time and had to redo it. Gave me the heebies to read that. As for the reconstruction, I kind of wish I’d understood what it would feel like to have implants in. If I ever have a problem with them, I think I’m going flat.
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I know a couple of you are TNBC and I saw where there was a new drug that have finished two trials and are starting a third - sacituzumab govitecan. You are probably aware of this since I know you keep up on the news but just wanted to put it out there in case you hadn’t seen it.
Trial 1,2 summary. http://ascopubs.org/doi/abs/10.1200/jco.2015.33.15_suppl.1016
Take care all.
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wanderweg—I got my implants after I was done breastfeeding my daughter, 11 years ago. My boobs looked horrible after she got done with them. Deflated! I had Mentor high profile silicone gels a 425 cc and a 450 cc. I ended up being a 34 DD! I was huge. I gradually came to really dislike them. I thought they made me look older for some reason. And we're such a pain with yoga and running. I went to my PS with my deformed left boob in April and knew I was over the implants and wanted them out and wanted a mastopexy (breast lift). She said she thought the left implant had a capsular contracture because it was so deformed and I said take them out. The mastopexy would have to wait as she didn't want to take out implants and do a mastopexy in the same surgery as the scars wouldn’t look good. Well, grand plan went to hell when she popped out my implants and found the implants were perfect (no capsular contracture) but I was loaded with cancer. So that was that. I don’t mind being flat but my whole half-flat look is not my favorite. I can have the prophylactic mastectomy in June for my right boob. BS wants me to wait 2ish months after rads to heal I believe. I will ask him tomorrow when my port comes out. I will get the boob off just as soon as he lets me. Not looking forward to another summer not being able to swim or go boating but I’m fine with it. I don’t have a nipple anymore so I will have him make the right side look like the left but with a much shorter incision.
The lady who microbladed my eyebrows (which look great!) is learning how to tattoo nipples so maybe one day I will do that. But, now I could care less.
MACTAZ—did you start the AI?
Happy Sunday!
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hI MGJ, just got my meds from the pharmacy, looking at the fillers - a way for me to delay. I will probably start on them tomorrow but not all that excited about it.
Hope you are feeling okay, I know your rads have been rough on your skin. Take care.0 -
Thanks for the TNBC info! Hope never to have to use it but one never knows.
2 weeks of 5.5 down, and my skin is still pink but no worse, and not painful. I went into NYC this weekend and visited friends. Brought the kittens who have shared my guest room. They have been perfect. My friends have a gentle sweet beagle and the poor pup has been whining outside the door to the room, begging to meet and greet the kittens she can surely smell. Finally I got one of the kittens and carried her out to where the dog was so they could meet-- and the dog slunk away, afraid! Hilarious.
I had another brunch w my daughter & two other old friends from college yesterday... Making the most of my energy level being good in case I feel too tired later in the month.
sending good vibes to all especially Benji....
xxSB
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MGJ - That's a hell of a way to discover you have cancer! My breasts really didn't change much at all even after nursing two babies. I attribute that to the super dense tissue I had. But I miss the squishiness of my old breasts - these don't fit into a lot of my old dresses or swimsuits. And I miss being able to lie on my stomach. I hate that decisions have to get made so quickly with cancer.
MACTAZ - Let us know how the AI goes - I hope you have minimal SEs.
Santab - You're almost half done. I really love that you're able to have the kitties there with you.
We went out to listen to a bunch of local musicians this weekend at a festival and it felt like maybe life was getting back to something approaching normal. I'm looking ahead to a long weekend in the Keys to celebrate being done with active treatment.
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isn’t it so cool we’re able to share a bit about post-chemo life? It’s much lighter...
I got word from the “conference” of docs about rads - I’m in the grey area, they really can’t say one way or another whether it’s a useful plan or not. So, I’m not doing it! Done. I meet with MO on Thursday to go through the pathology report and add’l testing that was done. I’m looking forward to being released from active treatment and onto just monitoring moving forward. Fingers crossed!
I purchased a grow light kit so I can start growing veg here year round. Organic lettuce greens to start. Soon I’m hoping to replace all grocery store veg with my own home grown! It’s fun puttering in the dirt when it’s-40 outside!
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Kwilli, it's so nice to be done with the decision - now just move forward and live life to the fullest. That's what we all need to do. I'm going to have to check out the grow light - organic vegs are so expensive and I think I would enjoy growing my own. They also taste better because not all those darn chemicals.
SB - so glad you have family and friends (including the cute kitties) near by while you are getting the rads. Hope you continue to feel good and don't have any SE.
Wanderweg - sounds like you are having fun, and of course you deserve it. When are you going to the Keys. I'm looking forward to visiting my friend in Cape Coral but will probably be late summer. I like going there at that time because you miss all the crowded beaches.
Hughope,, how are you doing? Let us know .....
MGJ - hope you are feeling better now, reading those things can bring back a lot of bad memories.
Benji - Thinking of you
My niece and her fiancee are coming to visit this week - will be so fun to see her since it has been years. I really don't have anything fun planned for the next several months - just want this darn reconstruction to get done with. Then watch out...... I'm also getting close to posting my update pic with hair - I'm about 11 weeks out and the sides and back are filling in nicely - top is still a little sparse. I thought it was dark with some gray but all of a sudden it is white with gray. I just don't know what it is going to be when it grows out. I also started on the Anastrozole today - keeping my fingers crossed limited SE.
All take care - wishing you all the best.
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KWilli, glad to hear you are done! That's a great feeling, I bet! (I will know in another 3.5 weeks!)
MACTAZ, I am doing well! I have developed a mild itch and some speckles of red on my skin. Other than that, fine... still no pain. At the end of the week I will be half way.
One of my home friends is coincidentally passing through NY on a business trip with a flight change... she worked it out to have 24 hours between planes so will come here to hang out, which will be so nice! She's a wonderful, generous person-- one of my workout buddies who kept working out with me even as as I got slower and weaker during chemo... It was such great moral support to have friends who kept showing up and did not mind adjusting our routines, just to keep me moving. I had two friends like this. The other one was a tennis friend who kept getting on the court w me even when I had to sit and rest every 7 minutes! It moved me so much that they did this for me.
Friends like these are such a gift!!
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SB, I agree. Sometimes those true friends are there for you when family isn’t. When they come it isn’t because of blood ties, but those ties to your heart. I’m glad you are doing well, celebration in 3.5 weeks.
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wanderweg—I completely agree that decisions have to be made so quickly after we're diagnosed. I couldn't even stand the thought of recon so I said no straight away. But, I was just coming out of implants so I was jaded.
MACTAZ—I'm hoping the AI doesn't bother you one bit. 🤞🏼
Kwilli—Nice being done with active treatment! So jealous!
Santabarbarian—your kitties are such troopers. You have got such a nice pair of companions. I fumbled for socks this morning in the dark and put my hand into cat vomit. Cold cat vomit 🤢 thanks cat. My cats aren't nearly as awesome as your are. I get mad at my cats and tell them that they're adopted. They don't seem to care.
I got my port out today! So happy it's gone. About 10 minutes of pushing and pressure but it was easy. It's a bit of a trip when my BS cut the interior sutures holding it in place, seriously loud crunching sound. I wasn't in any pain during the procedure but now I'm a bit sore. But, it's more an annoyance than anything. I will have my next appt in May with him and then be scheduled for mastectomy #2 for the first week in June. He wants 3 months in between finishing rads and the surgery.
Today was the beginning of my last full week of rads. I'm done next Thursday—I can't believe it. What am I going to do without having to run to chemo or rads all the time? That's right, celebrate! I've already booked 2 trips. I'm such a baller.
Benji—you are in my thoughts 🤗
Kelly-Anne—how you doing?
Tamoxifen gives me hot flashes from hell! I pop it and almost like clockwork the hot flashes start. But, that's the only side effect I've noticed. Otherwise nada. I can live with it, easily.
My lady bits are much better after the laser. Less dry and tender. I'm glad it worked but not looking forward to round #2 in a few weeks. But, this time I will know what to expect. It's only sore and swollen the first day then it's nothing.
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MGJ All I can think of is "popsicle!!"
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hello moongirljess
i too aged tremendously with chemo and rads. lines everywhere (the ones on mouth corners most noticeably) and dry skin. was wondering how soon after rads or chemo where you able to get any of the procedures you mentioned done?
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wndrwmn—Hi! I finished chemo Dec 28. I'm still in rads (7 more to go but who's counting!). My onc and RO said 'go for it' when I told them I needed to put myself back together following chemo. I just had a face full of Botox last Wednesday. I feel just fine in rads so I've been very enthusiastic about getting procedures done. I got through chemo and looked absolutely ragged. So old. My skin is improving more and more being away from chemo. I'm not sure when you finished chemo but I feel your pain with that rapid aging that chemo seems to induce. I probably started 1ish months following chemo with my rebuild. Ask away if you have any questions!
Best wishes to you!
Santabarbarian—you crack me up! Popsicle!
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KWilli - I'm glad you were able to make a decision about rads and move on. I've started growing broccoli sprouts so I can have that year-round, and plan to put in some veggies this spring.
MACTAZ - We head to the Keys on Thursday, just for a few days. Shouldn't be much in the way of crowds, I'm hoping. A friend from the April chemo group is going to be in the area, so we'll get a chance to meet up. Hope you enjoy your visit with your niece. Let us know how the AI goes.
santab - Those really are good friends!
MGJ - Yay for getting the port out! It makes such a difference, doesn't it? But I don't know if I could have been okay with being awake during it. My BS told me she'd want to be completely out for it, so she had me completely out. I was glad to wake up and just have it gone.
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wanderweg—yes! I am so happy the port is out! It's great to not have that huge thing hanging out of my chest looking like something Dr Pimple Popper needs to lance. My surgeon says 'I'm tough' but honestly there was nothing to it. The Keys look beautiful. I've never spent any time on the east coast but they look so peaceful and laid back.
Well, (gulp) I went to the onc today. Got my results back from my Oncotype. My score was 10 and it said I would have 'no apparent benefit' chemotherapy. Wow! Doesn't that suck that I didn't have that information 7 months ago? I most likely would have done chemo, (because I didn't have clean margins) just not that vile AC that damn near took me out. My first onc told me she would order the Oncotype but didn't, and then prescribed me the harshest chemotherapeutic regime. What a B.
I wanted the Oncotype (even post-chemo!)to see about my risk of recurrence and if my numbers sucked then maybe push ahead to get the ooph and go on an AI. But, I'm happy to keep my ovaries and take Tamoxifen.
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MGJ, well that sucks. Your first doc was a nightmare. The oncotype test is for her2-, right? My OC said wasn’t for me.
Wanderweg, how cool meeting your April chemo gal pal. Hope you had a great time.
Went for another expansion, I was surprised when he said I was at 450cc. I think I’m done, still a little smaller than my natural breast but that is what I wanted. Next week will go in and probably talk about a date for replacement. I’m ready.
Take care gals and stay fierce.
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MGJ such a relief to know your oncotype score is low. I am so happy to hear that.
Wanderweg, I looooove the keys. Casual, beautiful, and remote. Have a ball!
Mactaz, I am glad you are done with the expanding!
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I was diagnosed in August 2018 had a lumpectomy and auxiliary clearance on October 1st 2018 and as of today (27/02/2019) will have my 6th and last session of chemo tomorrow. As I didn't see the point of having radiotherapy I told them I didn't want it so My oncologist said to me today that I have two options I either have radiotherapy or a mastectomy I know I don't want to have a mastectomy but is radiotherapy the only other option? (Worried about side effects)
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Hello, Helfire! We're sure others will chime in soon with their personal experiences and advice, but in the meantime, we wanted to offer you a warm welcome. If you need help navigating the forums, or have a questions for us, please don't hesitate to reach out to us via the private message function. We're here for you!
Again, welcome to the Community!
The Mods
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I am currently having radiation (Proton Radiation) and I too am worried about it. I had a pCR from chemo and thought, "do I really need it?" -- but my MO said the stats for non-recurrence regarding pCR are women who had either a mastectomy or a lumpectomy + rads. I am athletic and have a lot of body awareness and i just could not imagine cutting off my breast unnecessarily, and did not want to lose sensation, etc. Could not imagine getting an implant, either. So I chose lumpectomy/rads. I am concerned about over-treating myself but I am gritting my teeth and doing it. I had a high grade, aggressive tricky cancer. You have not posted your type of cancer or its grade. I am guessing you may be TNBC if they are not offering you hormone therapy or herceptin...
Anyhow, this is why I went with Protons because I wanted the least possible damage to my healthy tissues. I am in the middle of radiation now with mild symptoms only (slightly rashy, itchy, pink skin.) No pain. I feel safe in the treatments because protons do NOT pass through the body, but instead stop in the treatment area. So I feel my heart and lung are out of danger. I am worried about my lymphatic system potentially being damaged but the RO told me the lower dose and longer duration of my treatment is less damaging to lymph nodes.
If I were older I'd feel differently but I am only 57 with a great quality of life and no other health issues. I want to beat this cancer and never see it return. So I am doing the whole magilla.
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MGJ: Dr Pimple Popper ewwwww!!! So glad you have your port out!
I went to my MO today to hear good news and instead got told she’s recommending 6 cycles of oral chemo (capecitabine aka Xeloda). I’m alternating between crying and planning a vacation before starting stupid chemo again. I know it’s “not as toxic”; but really and truly thought it was over. I started out a clinical stage 3b; after chemo and surgery I am a stage 1c. Because I had residual disease (1.7cm tumour at removal) and triple negative gives me a higher chance of recurrence. Still though, no nodes involved. I have to be thankful for that. I hate the idea of more chemo.
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KWilli, I can imagine the bummer it must be contemplating chemo again. I am sorry this is something you are having to confront.
However, I want to tell you I have a friend on Xeloda now, and she is doing very well with it. She is a singer and has been performing, etc. Traveling and having fun. No hair problems. I think she had some GI SEs at the beginning but they adjusted her dose and she is doing very well. Xeloda is what my MO told me would be next in line for me f there were a need.
TNBC is a beastly disease..... I think it might be wise to give it another knockout punch now, at this juncture-- because if you have any stray cells in your system they have not had a chance to take hold yet.
This is why I am nuking my (ostensibly) cancer-free boob and nodes right now... the minuscule chance of a stray cell somewhere in there. It's really a bunmmer to do this, especially when it may be total overlkill.... but I guess what I am saying is better overkill than underkill!!
Sending you a big hug.
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KiWilli, my heart goes out to you. I’m so sorry to hear this news for you. I have also been reading seen other women posting who are taking xeloda and aren’t having to many issues. That being said I truly understand how you are feeling, you think you are done with that phase and then get punched in the gut with the news. I’m sending you hugs and best wishes, we will ne hear for you
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kwilli—Ah what a bummer! I know you wanted to be done with this. I hope you do well with this new treatment and the time just flies by.
Santabarbarian—do you feel tired on your rads? I was hit or miss with being tired in the afternoon. I agree, throw everything at this freaking BC and keep it moving to better days.
MACTAZ—yes, exactly the Oncotype is for Her2 negative BC, and you can have a max of three positive nodes. And I had the max! I was happy to have a low score that’s for sure. You handled your expanders well! When I had implants I had a 425cc and a 450cc. Are you going to be in that range or smaller?
I had my last radiation skin bolus on Thursday and that did my skin in. It felt like someone poured molten hot lava into my armpit. My skin was purple. Omg. Ouch! I have a burn the size of my hand across my chest. It’s rough and itchy. The RO offered me silvadene but I passed. I will be fine. I started the boosts on Friday. Took longer because I have the 2 incisions that need the boosts. But, otherwise those were uneventful. Done with active treatment Thursday. I CANNOT BELIEVE I WILL BE DONE. DONE! Holy cow!
Have a great weekend!
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Thursday will be a great day MGJ !! How wonderful!!
I'm pretty energetic still. I have napped twice and not needed a nap at all on the other days. Yesterday I was up till 11:30, and no nap... I have done 14 of 28 now... half way. I have roughness and redness and itch - but it's an itch I can basically ignore so not that bad and I am not scratching it.
A SB find did a 24 hour layover and came to visit me (my workout buddy who happens to be a CEO). We had dinner last night, worked out in the hotel gym, went to my fave organic vegan place for lunch today, and then hit the Short Hills Mall. LUXE mall w/ Louis Vuitton, Fendi, Prada, Hermes, and everything else of that tier....so it was good window shopping and fun to walk around. I just dropped her at Newark for her flight home. What a good egg she is to come to see me!
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