Starting Chemo July 2019
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flnana2 that quit is beautiful! I know that was a honor for you to be able to use it 💕💕
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rubydream, yes, we are on a very similar path. Has the H & P been as easy as my MO says it will be? There is a chance I will be changing to Kadcyla after surgery I have had a PCR. I won’t know til Dec. 16th.
Jjpope, yes, I am honored to be the keeper of this quilt during treatments. Also, I would be open to a private FB group. I’m not the best one to set it up but if someone wants to I’ll participate.
I feel like crap today but knowing that I am through with the “big guns” sure does help!
❤️💪
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Thanks Finana- Lovely sentiment and quilt !!! Finana Melmax- itching can be a reaction call your MO to be on the safe side! Jjpope thanks for the quote.
Rubydream OMG those pre op questions!!!!!! Question 123. Have you ever tried Green Eggs and Ham? On a boat? With a Goat?
Surgery is not that bad. Chemo wayyyyy crummier!
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Hi everyone!
This is my fourth day at home and the first I've had a good long period of sleep. Being an insomniac before this whole business started does not lend itself to an easy recovery. I've had to abandon the medieval torture device they had me in and move to extra firm spanx. The binder was causing me to vomit, along with a rousing bout of spastic colitis. No problems here with constipation! Right now I'm finding surgery more difficult than chemo, but it just might be where I am in the recovery process.
Rubydream - My best wishes for a quick and easy recovery for your surgery. I won't lie the first couple of days for me we're hell, but I'm start to feel more like a person, than a stitch factory. Let me know if you want me to PM any pictures to you
I like the sound of a get together and cruise, though my finish line may be later than some others if I have to go back on chemo. I've given up Facebook and only get on when absolutely necessary. I would be okay checking in there as needed.
Flnana2 - that quilt is just lovely 💕 I love quilts! My great grandmother was a tailor/seamstress and a few of her grandchildren/great grandchildren have been lucky enough to have one of her quilts. They are one of life's treasures! I had my surgery at the University of Chicago. That's home turf for me as we live in the neighborhood
Hugs to all 🤗
Diane
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I think a private Facebook group would be great. Easier to chat and keep track of what's going on with everyone.
I finished my chemo yesterday. I got really emotional when I faced the bell and I'm such an ugly crier. I was a hot mess! Just want to say (and this is a sad fact), but the whole time I was there (16 days of infusions over 5 months) I never heard the bell rung to indicate completion of chemo. My nurses were very excited about hearing a bell ring for me. Most of the people I saw there (and they were almost all elderly people) will never get off of chemo. Let's all count our blessings.
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I would be interested in a cruise/get together, but would be dependent on my surgeries and recovery.
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Thanks everyone for the thoughts and prayers. Surgery to have my tubes and ovaries removed went well. I’ve been through a lot this past year and having my ovaries and tubes removed did not seem like much of a big deal to me. I am heading back to work tomorrow. I have been on Luoron injections since June so I was already being put through menopause. I’ve been through 16 chemo treatments, a double mastectomy, and 25 radiation treatments. I tried the best I could to keep moving as I could. I worked through everything and did not miss many beats. One thing that I CANNOT wait for is to have these tissue expanders removed...looking at June.
it can be fine, but it just takes time.0 -
So a friend that I’ve met through this journey posted this:
And I’ve done nothing but cry for the last hour. Not because of the beautiful post but that picture sucked the wind out of me. I miss that person, that smile, and OMG that hair. I don’t see that person anymore and it SUCKS. I see a bald headed, weight gained, deformed, sick person. Who would have ever thought 1 picture would rock your world. I just hope one day I can get that smile back 😢
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jjpope1 - have you ever heard the story about the broken pots? In Japan when a piece of pottery is broken, it is repaired with precious metals and turned to unique pieces of art.
Kintsugi: the art of precious scars
The scars become what to exhibit
With this technique it's possible to create true and always different works of art, each with its own story and beauty, thanks to the unique cracks formed when the object breaks, as if they were wounds that leave different marks on each of us.
You are not broken, deformed or less than. In fact, you are gaining life lessons that cannot be compared. You will walk with confidence, empathy and compassion - you will not longer judge anyone because you don't know their story. AND you are one bada$ woman who fought something that no one else could see - all while holding your head high and trying find hope when there doesn't seem to be an end to the bad news and crappy timelines. We've all been knocked down over and over in this journey - one day we are encouraging someone who is devastated seeing a picture of themselves, the next day we are trying to make it through the day without crying.
You will have that beautiful hair back, that radiant smile will be genuine once again and you will regain your strength. The best part is that when you have all those things back - you will never take it for granted again.
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Whata lovely post deanders! Nothing I can say - I would not to take anything away from the poignancy of those words.
Diane
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Maggie, so glad to hear your surgery went well! And I'm with you on the tissue expanders. When I agreed to them being placed at the same time as my mastectomy, I didn't understand that I would have them in place for a year! He may have told me ... I was probably just nodding my head and in a daze at that point.
So I just had my post chemo follow up appt with my MO. As well as the total hysterectomy, he wants to put me on anastrozole (aromatase inhibitor to reduce whatever bit of estrogen I have left after the ovaries are removed) for at least 5 years, maybe more. Does anyone have any experience taking anastrozole or will be taking it?
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hi Britgirls,
I have been taking anastrozole since Sept 5th. So far so good. No bone or joint pain or any of the several se's that they list. Hoping it continues. I am trying to exercise more as well. I had a dexa scan prior to starting it, as bone thinning is a possible se. Hope you will do well on it as well. Pat👍
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Thanks for the info, Pat. So glad to hear you’re tolerating it well with no side effects. I know you’re a runner, and that should help strengthen your bones and offset any bone density loss. I just started back exercising yesterday with some yoga and plan on getting back into running. Not going to rush to the gym right now. My wbcs were at their lowest ebb right before my final chemo. I need to get them back up.
Pat, how was radiation for you?
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britgirls, my MO never said anything to me about Anastrozole. Should I look into it?? I am ER++. Lol one more med to take.
. I am on Examestane (generic for aromasin). I see you had many lymph nodes involved, too. I had 10. Heres to many healthy years ahead!!! UpstateNYer, are you able to give me a little more info on Anastrozole??
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Maggie, I think they’re similar drugs (both aromatase inhibitors)
https://www.rxlist.com/arimidex_vs_aromasin/drugs-condition.htm#
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Hi all,
I got really good news today at my follow up after surgery appointment - complete pathological response!! No evidence of disease, no macromets, no micromets or isolated tumor cells found in the lymph nodes or breast tissue, clean wide margins. I’m done!!! No radiation or follow up chemo, except Herceptin.
I was so expecting to hear bad news that I just about burst into tears at the good news. I was so shocked.
I hope anyone waiting on pathology has resultsthat are equally good. Thank you everyone for keeping me in your thoughts and prayers!!
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Diane, CONGRATULATIONS!! That is fantastic news! You just received my dream pathology report, and everyone else’s! 🎊🎈🍾🎉💕💪. Time to celebrate! Getting out of radiation is huge in my book!!
Jjpope and Deanders, those are both beautiful posts. The friendships we have all made through this journey are definitely silver linings.
Julie
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dvhmouse WOO HOO THAT IS AWESOME NEWS. I’m so happy for you.
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Dvhmouse- congrats to you on the clean path report. Such wonderful news.
Maggie- Britgirls is correct. Examestane is also a choice for an aromitase inhibitor, like anastrozole.
Britgirls- Radiation was the easiest part of my journey. I had no skin issues , no fatigue or nausea. The techs were quick and efficient. I was in and out in 15 minutes. Had to go for 2 set up visits, then had 16 days of rads. I had radiation(IORT) at my first lumpectomy , but needed additional rads due to unclear margins. Chemo for me was also unexpected, but had to do it due to my high onco score. Do you need to have rads?
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Taxol #10 tomorrow! I am just weeks away from being done with chemo and I can't wait. Strangely though I find myself a little nervous to end it because at least while I'm on chemo, I know it isn't getting worse. Is that weird to say? Have any of you felt that way?
Things are starting to move at a crazy pace - I have had one appointment after the other - Plastic surgery consult, surgery consult, radiation oncology consult, now they are calling with proposed surgery dates. Looks like mastectomy on January 9th, expander placement on January 20. They want to do a delayed-immediate reconstruction so that they can get the path report back before the expander is placed. And apparently then I wait. They are thinking that I will need radiation no matter what due to the size of the tumor and my age. I can't remember if she said 4 weeks or 6 weeks but does it matter really? Then I have to wait 1 month for every week of radiation for the implant to be placed. They don't think they will be able to save the nipple so I will need a tattoo at some point but the plastic surgeon said he can "craft" a skin nipple that can have color added to it later. Who knew.
Here's to getting closer to the end! I sure hope 2020 is a better year.
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Diane- congratulations on the good news!! I'm so happy for you.
Deanders- I love your story about the pots. Thanks for sharing it.
I am 5 days away from my last AC. I'm excited and anxious to have surgery scheduled ASAP. I want it out! Deanders I'm doing the dame as you...mastectomy with nipple removal. Check out Vinnie Meyers for nipple tattooing. He and his crew are supposed to do a great job. They have a website with examples. They even do 3D looking tattoos to make it look like there's a nipple. Not sure if I'll do that or have an actual skin reconstruction.
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Diane that is the best possible news!! I am delighted for you and wish I could give you a hug! I can imagine bursting into tears at that good news!
Upstate, thanks for the info on rads. You're like a scout going ahead of us and checking out the terrain! I meet with my RO on 12/12 and from what I've been told I should expect 6 weeks of radiation starting early January.
Divergent, yay to nearly being done with AC! And then it's done forever and they can't make you do it again!
Here's a shocking image from my Fitbit of my resting heart rate this year. Surgery was May 24 and chemo started July 9.
Also, I'm scheduled to get my port out on 12/11. Apparently just an in-office procedure. The thing is not worth a damn anyway! Had to get Cathflo four times!
Cheers everyone and here's to better days! I feel like we're over the hump.
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Deanders - the last bit before surgery becomes the crazy wind up. You have appointments with everybody about everything as if they are all waiting in some dark corner to grab some piece of you. I had to have the nipple removed for my surgery as well and now just have this blind/blank space. Haven’t decided yet what I’ll do about it. I was told that could be done any time.
Britgirls - congratulations on having a date to get your port out! One more thing off the checklist. I can believe your resting heart rate took a jump! BC impacts so many aspects of our health.
I’m cheering you all on from the sidelines, hoping each day feels like an accomplishment.
Diane
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I am so happy for all this great news! Diane! AMAZING! what wonderful news to get after the wringer you have been through the last few months!!!!
Britgirls, oooo getting out the port! how awesome!
Divergent on last A/C whoo hooo. You got this!
What a great start to the holiday week coming up GOOD NEWS!
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My email has been blowing up with all of the community updates! Great to hear everyone doing so well! Happy for everyone getting good news, finishing chemo, getting close to finishing chemo, and getting surgeries done. This has been a long hard road but there is hope!
🙌🙌😊💕
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Hi everyone, I started chemo with you all in July 2019 but this is my 1st Post here, though I've been following along. You are all so strong, thank you all for sharing, reading these posts helps me not feel so alone. It’s crazy how this takes over our whole lives.
Rubydream- I just got my last TCHP on Tues 11/18/19. Still feeling crappy. I did neoadjuvant so I won’t know until after my surgery if I’m getting Herceptin or Kadcyla- Surgery is scheduled for 12/17/19 - lumpectomy & BL salpingo-oophorectomy.
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Hi Lulu44,
You and I are on almost the exact same schedule and protocol. I finished TCHP on 11/14 and have surgery 12/10. I'm also doing radiation...are you also? There is a December surgery thread also if you are interested.
Hope everyone has a wonderful thanksgiving week!
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lulu44 - congratulations on your last TCHP! I was in your shoes, having neoadjuvant and not knowing until the surgery pathology came back whether I was going on Kadcycla or sticking with Herceptin. It was really nerve-wracking, particularly as my post-treatment MRI came back still showing evidence of a tumor. I was truly lucky, though, and received a clean path report and I’m keeping hopes up for all of you having surgery soon, that your results will be just as good.
Diane
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Good evening! Had follow up with BS today and it went well. Got the go ahead to get my port removed so I’m hoping the PS will agree remove it during my surgery. Hope you are all well.
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Evening All. Met with my surgeon today,and it went really well. She is the first doctor I have dealt with that made me feel like a grownup with agency over my own body. She said all the right things and now I have my fingers crossed that she will actually follow through. She has agreed to only take my sentinel lymph nodes and leave the axillary regardless of what they find during surgery. I almost fell over because my oncologist has not budged an inch off of Standard of Care Protocol regardless of my begging or demanding. Makes me wonder if I should have tried harder to get a new oncologist.
I should get a call next week to schedule my surgery. The best part is that I will have a good month to recover from my last chemo. That will be such a joy to possibly have a week that I'm not sick.
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