ER-, PR-, Her2+ Roll call

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  • minustwo
    minustwo Member Posts: 13,348

    Oh crap DJschmidt - what a nasty development. Hope there is something that interests you in the company - the easiest way for now.

  • fossf56
    fossf56 Member Posts: 36

    @djschmidt1 I'm so sorry you have to deal with this.

  • aborayis
    aborayis Member Posts: 470

    @fossf56 I can’t imagine how upsetting what you’re going through must be. Here with a HUGE hug. What does the treatment plan look like now for you according to this MO? Do you have good support to find a new MO?

  • aborayis
    aborayis Member Posts: 470

    @snm I am so excited for you and so glad you could immediately see great results. Wow!

  • aborayis
    aborayis Member Posts: 470

    @djschmidt1 Oh, no. I am so sorry. You’ve already got so much do deal with already, and now this? I am so sorry. Is there a real possibility you could pivot to a new role there if you would want to, or do you now have to begin a job search? Thinking of you and hoping this ends with a silver lining for you somehow.

  • bailey.boo
    bailey.boo Member Posts: 231

    @fossf56, I'm so sorry to hear you’re going through this. It’s frustrating and upsetting to learn things are different than originally thought, but to receive a misdiagnosis has to be incredibly angering on top of that. I hope you find a wonderful new oncologist that you love and they get you get on a plan you respond to fast 🙏🏼❤️ 

    @djschmidt1, Ugh! I'm so sorry to hear about your company restructuring and the timing! I hope there’s a good lateral transfer option for you. If not, I'm in the comms field and happy to offer a free second set of eyes on your resume, branding, or anything else that might help.  

    @snm, congrats on getting nipple tattoos you love! I'm still a ways off from that, but I'm planning to get them done too. I hope I can find someone skilled and close by when the time comes. I'm considering something unique, like hearts instead of circles, to add a fun touch. 

    I’m on day 2 of round 4 of TCHP, over here. Solidly over the chemo half-way mark, plugging along….

  • aborayis
    aborayis Member Posts: 470

    @bailey.boo Hearts! I love the idea of that. yay for being over the halfway mark. I hope that feels good. Something so wonderful and relieving about having more behind you than in front of you!

  • fossf56
    fossf56 Member Posts: 36

    Thank you @bailey.boo , I am angry still. It feels like the oncologist never even read my pathology reports and even asked about my former decade ago cancer which the data is available to her as it was the same network. And I'm having such sever diarreah daily from I think phesgo for the past 9 weeks, that pisses me off too. I do have a former oncologist who had moved location a few years ago and we now live close by. I'll be calling her on Monday. ❤️

  • bailey.boo
    bailey.boo Member Posts: 231

    I don't blame you for being angry. It definitely stinks your oncologist isn't paying attention to your history, especially when they have all the info. It's great you have your former oncologist nearby. Calling her sounds like a good idea! 

    And, oh boy, do I know those diarrhea woes. My med onc wants to hold the Perjeta if it keeps happening, so I might have to get just the Herceptin through IV instead of Phesgo. My insurance company keeps denying the shot anyway, so they'd probably be happy about that. But I want all my medicine in me where it needs to be! I've been getting fluids and Atropine on chemo day and once a week after. That helps a lot, but it’s not foolproof. I also take tons of Imodium, have a potassium RX, force fluids, and eat carefully, but I still have breakthrough diarrhea. Fingers crossed this time around— so far, so good. I hope yours clears up soon! 

    Hang in there and take care. ❤️ 

  • djschmidt1
    djschmidt1 Member Posts: 80

    Oh gosh @fossf56 I’m sorry you're also dealing with diarrhea ugh. 😑 am having it pretty badly after my second immunotherapy last week too. I also have a weird rash on my face unlike the other rashes I had after chemo.

    Thanks for all the good wishes on my work situation - - so my story is - I will be 62 this week and since I do have an intermittent absence FMLA in place right now through April, I’m consulting a labor lawyer to understand my rights. After much thought, my ideal situation would be continued insurance coverage through age 65 until Medicare takes over and perhaps disability along with the severance. I work for a very large company that could potentially be convinced how bad of a look this is for them to RIF a cancer patient just shy of retirement age. Not really like me to push back but it can’t hurt to try is my thought….

  • snm
    snm Member Posts: 124

    @bailey.boo luv the hearts idea- I actually had similar thought but then I opted for 3D nipples..and my goodness I had no idea that it would make my Barbie boobies look so real! Part of my incisions are covered by the nipples so that's good. Unfortunately my scars are hyperpigmented and not really fading, though it's been well over a yr since surgery. The tattoo artist's name is Shane Wallin - his work is online if you want to take a look at his talent- pretty amazing! He has helped so many post mastectomy women with his artwork. It's really fun to look online at all the amazing tattoos out there!

    @djschmidt1 I wish you luck in your fight for what's right! And yeah, push back hard chica!

    And Booooo to all the diarrhea😩

  • aborayis
    aborayis Member Posts: 470

    @snm oh, wow! Those images are so real-looking! That is incredible!!

    @djschmidt1I admire you for looking into what your rights might be and maybe pursuing something in that regard. I echo @snm - you fight hard.

    Uggh and grrrrrrrr to the diarrhea issues, everyone. I hope that gets better.

  • fossf56
    fossf56 Member Posts: 36

    @djschmidt1 having to worry worry about income and jobs while dealing with this is such BS. I was laid off the week after my PET scan at the beginning of April and have been on state disability since June when chemo started. I just turned 57 and my job was our main income so it's difficult but so much easier to focus on cancer than cancer and work or losing work. Hoping you can get what you need. Luckily my kids are older this time round so can help out when needed. They were such littles last time.

    @bailey.boo I get fluids as well and have a prescription I take daily for diarreah, Lomotil which really helps. Immodium unfortunately doesn't help at all. The good thing with Lomotil is that even out of pocket and not covered by insurance it is less than $20.

    Appreciate all your uplifting posts. And all of you with littles you are doing awesome.

  • catarina_fm
    catarina_fm Member Posts: 75

    Hello everyone! I was diagnosed at 38 with BC ER-/PR-/HER2+. I will do 4 cycles of AC and then 4 cycles of docetaxel with immunotherapy. I have already had 1 AC treatment; next Wednesday I will receive the second. Then, if everything goes as expected, I will have a lumpectomy (although my tumor is 8 cm, the doctor thinks it will shrink enough to be able to preserve the breast) and axillary dissection.

    I have been reading your posts and confess that reading stories of positive cases cheers me up. Thank you to everyone who shared their testimonies! The diagnosis was terrifying for me, as it certainly was for you, I know that some cases go better than others, but it's great to see so many successful stories! We will be fine :)

    Good luck for you all and take care! 🌻

  • aborayis
    aborayis Member Posts: 470

    @catarina_fm I’m sorry for what brings you here but glad to have you with us on the journey. How has the treatment been so far for you? I’m happy you are finding hope in these threads. Ask away about anything. We are all here for you! ❤️

  • djschmidt1
    djschmidt1 Member Posts: 80

    @catarina_fm sending you love and good vibes. Im sorry you had to join is but as aborayis said, ask us anything. We are here to support each other. This board has been a Godsend.

  • snm
    snm Member Posts: 124

    @catarina_fm lots of strong women on this site and support. Thanks for sharing.. pulling for you

  • catarina_fm
    catarina_fm Member Posts: 75

    Hello everyone! Thank you very much for your support 😊 I wasn't able to come to the forum for a few days because I had another cycle of AC and I confess that I feel really bad and feel sick. I try to think that it's a bad few days and then it gets better... It's really good to know that I have women who understand me and with whom I can speak and clear up doubts... thank you all so much! I'm here for you too. Let's get through this! 💪

  • bailey.boo
    bailey.boo Member Posts: 231

    Hello and welcome to the group! 🌻

    Thank you for sharing your journey. It sounds like you have a solid treatment plan, and I hope your tumor responds well so you can proceed with the lumpectomy.

    I usually feel awful after chemo treatments too. I’m coming down off of TCHP round 4. Those days can be really tough, but learning the routine and how to get ahead of side effects as much as possible has helped me. It’s great to have this community for support and be able to reach out with any questions or just to chat when we feel up to it again finally! I hope you are feeling better!

    Every step forward is progress 💪❤️

  • aborayis
    aborayis Member Posts: 470

    @catarina_fm i didn’t have it myself but I’ve heard AC treatment can be tough to go through. After these two treatments you may be able to recognize some patterns in how your body responds. Knowing the patterns can help you know when to best to rest and take it easy, and maybe even taking something they’ve prescribed as soon as you recognize the first twinge of a side effect. Every little bit of sense of control will help. I hope you feel better soon. Hugs.

    @bailey.boo i hope you feel better soon, too. Two more to go after this? Do you have 6 all together?

    @snm How are your tattoos healing?

  • bailey.boo
    bailey.boo Member Posts: 231
    edited July 28

    Yes. I’ll have 6 total, so I’m almost seeing the light! And I am starting to feel better again *knock on wood*. I left the house today! I finally bought a fun color wig, and I took it to get trimmed and thinned— it was such an unwearable dense and wiggy beast at first, and now it’s adorable! Then I met our local breast cancer director for lunch and we talked events, grant writing, and all things surviving and thriving. It felt so good to connect and be out! Here’s a pic of the new ‘do, Noriko Angelica in Plumberry Jam 🌸🍇 I’m finally wearing makeup today. My eyelids have been so swollen and raw, but over-the-counter Optase wipes and drops are really helping. Moisturizing saline nose spray seems to be helping my nosebleeds amazingly well too. Also, I saw a great tip for bringing ice pops to treatment I’m stealing and sharing, for those icing all the things during infusion to avoid mouth sores.

  • aborayis
    aborayis Member Posts: 470

    @bailey.boo YOU LOOK GORGEOUS!!!! I adore that hair on you! You are an inspiration, in thrive mode as you are. So many great tips, too. Thank you for the spirit boost!

  • catarina_fm
    catarina_fm Member Posts: 75

    Hello everyone,

    Thank you so muck @bailey.boo and @aborayis for your kind words! I'm feeling better today 😊I'm not great yet, but I can now live my life almost normally.

    @bailey.boo the wig fits you really well and you look great! You're giving me ideas about buying a wig in a different color 😁 I had black curly hair down to the middle of my back and the wig I managed to get was straight down to my shoulders. And thank you very much for the popsicles tip, I think I'll bring some next time!

    Hang in there girls! Take care 🌻

  • snm
    snm Member Posts: 124

    @aborayis my 3D nipples made my husband take another look as I got out of the shower! Ha! 21 years of marriage and he did a double take!!! The nipples are all healed up- no issues at all. I'll need a touch up in Nov. He said they look like nipples and in the right place 😁. I made another appointment to get more of a decorative line art tattoo over my remaining scars.- hopefully henna inspired design of some sort.

    @bailey.boo omg! I luv the purple tinted hair- looks so real and awesome! You are totally rocking it! Where did you get the wig from?

  • grammie2
    grammie2 Member Posts: 234

    Hey everyone and welcome to the newbies! Hate you are going through this, but so glad you found this group! Everyone is amazing!

    I've taken the last couple of weeks away from breast cancer (not totally, but as much as possible LOL). Enjoyed all of my family being home and seeing the grands!!! Party is officially over and I go for my last TCHP this Thursday. Glad it's the last, but dreading it all the same. Meet with the surgeon a week after treatment and guessing she will schedule the chest MRI to compare with the one she had me do prior to chemo. Not sure if I will have another PET before surgery or after?? Still haven't met with the radiologist, but hope that gets scheduled soon. Would like to know how many treatments I'm looking at. I've heard either 4 or 6 weeks of 5 times a week.

    Still trying to read and catch up on everyone's posts, but said a prayer for everyone here. Hugs!!!!

  • catarina_fm
    catarina_fm Member Posts: 75

    Hi girls! How are you? 🌻

    As for me, I feel pretty good after this second AC infusion. The first few days were really bad, I hate being sick and I developed an aversion to certain foods/smells, but after a few days, I feel practically normal 😉

    @snm I didn't know there were 3D tattoos for nipples! In other words, you won't need to put nipples in, is that it? If I have to have a mastectomy, I like that idea! (Doctors still don't know if I'm going to have a lumpectomy or mastectomy, it depends on the results of the treatment). I don't know if my scar from the fully implanted catheter will be very noticeable (right now it is), but I had already thought about getting a tattoo over it in case it looks bad.

    @grammie2 It's great that you had your family nearby and could be with your grandchildren! should be a breath of fresh air 😊 and it's so good that the last infusion is soon! I'm doing 4 sessions of AC and then I'm going to do another 4 of TCHP and the doctor has already scheduled me for an MRI to do between the 6th and 7th infusion. I don't know if I'll have another one before the surgery, besides this one.

    After the surgery, I don't know what my future will be. The doctors haven't decided yet, they will wait for the pathological result after the surgery and at that time they will decide what type of treatment I will do next.

    Good luck for us! 🙏

  • snm
    snm Member Posts: 124

    @grammie2 hope you soaked up those hugs from your grandkids and hold on tight! Sounds like you have a supportive family which is a blessing.

    @catarina_fm 3D nipple tattoos means no surgery; just a flat tattoo that gives an illusion of a nipple. $600 for both nipples but should be covered by health insurance (I had to submit a claim for reimbursement -have not heard back yet from insurance company). I went in for a consultation to another tattoo artist for a decorative tattoo today to cover up my remaining scars (this one will not be covered by insurance)..he plans on drawing up a sketch and then if I like we can move forward with it in October!

    Very exciting and fun to think about!

  • djschmidt1
    djschmidt1 Member Posts: 80
    edited August 13

    wow! I wish I looked as stunning as @bailey.boo during treatment, you go girl!

    As an update I’ve just finished radiation and I’m itchy and sore but one more treatment done!

    After talking with HR, they have extended my employment through March 2025 which gets me through treatment. I’ve noticed I feel nauseous two days after immunotherapy for two days and my onc says I shouldn’t….anyone else have this experience?

    My hair is growing in slowly and life is getting somewhat back to normal. My husband and I are working on our house to sell and downsize for retirement and live life!

    I hope all is well with you warrior queens!






  • snm
    snm Member Posts: 124

    @djschmidt1 so happy for you regarding your work situation ..and gosh making the move to downsize! Cheers to living life!

  • grammie2
    grammie2 Member Posts: 234

    @catarina_fm and @snm! I so enjoyed their visit!

    Good to read and catch up on everyone! This last chemo is kicking my bootie. I am so thankful I didn't feel this bad with the first 5! Surgeon appt tomorrow, so a little anxious about the next step. When I met with her before chemo, she seemed positive I could do lumpectomy or mastectomy. I have to have radiation either way because of the nodes. And the whole node removal thing has me anxious. Wondering if I will be one who ends up with lymphedema. I think I'm just tired of feeling tired and not normal :(

    How's everyone else doing?