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Starting Chemo in August 2020

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  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Nicolerod, the photos are great and the weather too for the wedding. How did you feel?

    My son's wedding is on Halloween and they are travelling from northern BC for a small wedding at our home in Victoria after canceling a big wedding in Terrace, BC. It is a 20's theme and this AM I found a perfect outfit, including shoes (Prada for less than $100) and hat at a vintage consignment store. It took everything for me to manage to try on clothes but with the help of the saleswoman and a helper I have hired, we did it in an hour or so.

    My MO happily agreed to suspending my next cycle of Eribulin after this one (cycle 3) finishes next Wednesday. I will start again Nov. 4.

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Marian - Congratulations on finding the perfect outfit and with Prada shoes no less! A 20's themed wedding sounds so completely glamorous. I couldn't imagine holding a wedding at my house right now. My wish for you is plenty of help and good days so you can enjoy it!

  • nicolerod
    nicolerod Member Posts: 2,877
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    Mariane,....I felt great and it was great. I have to tell you that I don't think the Erubulin is working for me :(. as I am still having pain in my sacrum and liver :(.

    I am really feeling discouraged....as I have never had a treatment work for me yet :( and I feel like I am now running out of options and time.

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Nicole, I'm so sorry that you don't feel like your treatments are working. I can't imagine going through all of this only to have it not do what it's supposed to. That must be completely disheartening. I pray they find something that will work for you soon.

    On Saturday, I'll be joining my sister, sister-in-law and young nieces on our annual trip to the pumpkin patch. I don't feel comfortable going in public without my wig, but it's supposed to be cold and extremely windy. I would prefer the look of a stocking cap over my wig if it would stay put , but maybe I should just wear the stocking cap. I don't want my wig blowing away as my young nieces all scream in terror to be a part of the highlight reel for the day. Anyone have experience with or advice for strong winds and a wig?

  • nicolerod
    nicolerod Member Posts: 2,877
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    Thanks Positively!

    Just wanted you all to know...my eyebrows are now going on Erubulin....They are almost gone.....

  • zucchini
    zucchini Member Posts: 6
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    You all are amazing. I love the pics. And the idea of a 20s themed wedding. Visiting the pumpkin patch. I can't even imagine making it through all the prep and full events. I'm really happy for each of you having your good moments. Makes me want to do better finding and participating in mine. I'm hoping to plan at least a decent small Halloween at home for my 2 kids. It's right after my 5th infusion and I know I'll be struggling but I'm still hoping it'll be special for them.

    I'm thinking I may try to dress up as Dr. Evil from Austin Powers. I still have a good bit of weird little pokey fuzz on my head, though. Never thought I'd be annoyed not to lose enough of my hair to be legitimately bald.

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Nicole, my eyebrows and eyelashes are maybe 1/3 gone. When I fill them in with pencil, it seems to pull more out. Also, my eyelids are extremely puffy and the dark circles make me look like I've been partying hard for two days straight.

    Zucchini, I can't tell you how many days I've just come home from work and gone straight to bed. I don't know how those of you with young kids at home needing your attention and care

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    get through this.

    The pumpkin patch this weekend was so fun. I ended up braiding my wig to the side and wearing a stocking cap. It didn't blow away.

  • deniseml
    deniseml Member Posts: 68
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    Hi Denise,

    Welcome to the group!

    I was diagnosed with Grade3, Stage 3C IDC / IBC, H neg. Her2 positive, left breast in August. I have completed 3rd treatment with TCHP. SO very happy with results, significant shrinking of mass and unable to find inflamed lymph nodes with Ultrasound. 3 more treatments, then Mastectomy with Sentinel node dissection discussed, since Radiation is a must. Whether Immunotherapy alone or a drug-conjugate will be necessary still to be determined.

    I did start to develop neuropathy after the 2nd treatment, in my feet primarily. Used the ice booties and iced hands during 3rd treatment without further progression. Worst than losing my hair was the scalp sensitivity that occurred, causing me to return home after the 2nd treatment and shave my head to ease the discomfort. It was a big relief for me! I bought several wigs before I found what I liked and fit appropriately. I went blond and not going back! Actually received compliments from staff at cancer center, thinking it was my real hair! Made my day, for sure. bought wigs from Paula Young, recommended by my stylist and Wigs.com ( recommended by a friend ).

    Most other symptoms are manageable. I learned to be pro-active with treatment, and stop holding off taking meds to help me. Another friend of family recently suggested drinking Alkaline water to help clear toxins faster. She has been thru chemo, surgery, radiation and recently had reconstruction. I plan on trying it for next weeks treatment.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Positivily if you don't mind me asking how old are you? You look so young and great! I love the braid Idea with the wig! Yea my eyebrows are REALLY sparse now...but ya know what...I just hope this chemo is working and it will all be worth it. :)

    Had chemo today start of 4th cycle... my scans are this Friday results Monday the 24th (after chemo)

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Denise, It sounds like we're on similar treatment schedules. I have my 4th TCHP infusion today. I think maybe I've had a bit of neuropathy on the tips of my big toes and thumbs, but I haven't been icing. I just feel like I can't take on even that one more little thing and the numbness seems to go away between treatments. Keep us updated on the effectiveness of the alkaline water.

    Nicole, I'm 44. You don't even know what your compliment means to me! Just last week, I saw a woman I'd become good friends with years ago when our kids played sports together, but hadn't seen recently. She said "Shannon, is that you? Why do you look so... different?" I'm pretty sure I cringed out loud, but I'm not holding it against her. I'm looking rough to myself these days too. Praying your scans come back even better than you're hoping!

  • nicolerod
    nicolerod Member Posts: 2,877
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    Positively... I am serious when I say you look like you are no older than 33....I think you look great...you are only Stage 2 right? That is what your profile says...

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Nicole, I am stage 2. My Mom had stomach cancer when she was my age and they only discovered at surgery that the tumor was much larger than they'd thought and had spread to her liver, so I'm really worried about new discoveries since I haven't had my surgery yet. I was also told by my radiologist that they may do a PET scan, but they haven't. Can I ask how/when they found your mets? Was it because of pain you were having?

  • nicolerod
    nicolerod Member Posts: 2,877
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    I had Stage 0 in 2014...got lumpectomy and radiation...then Feb 2019 they found more calcifications in my mammogram...thought it was stage 2 so I got the double mastectomy and 2 days before I was all set to go home (we flew to CA from Hawaii for my surgery) I mentioned about a pain I had, had for the past year and half in my hip and lower left back..they scanned but only found 3 mets in my liver...I insisted on MRI and they found it in left sacrum. Its been 1 year since diagnosed and I haven't had a treatment work yet...so getting a little worried. but I know God's got me covered...He is transforming me through this and He is gaining me for sure. I just want something to work to buy me some more time. So yes I had pain in sacrum and hip...and CT scan didn't pick it up (forgot to mention that) I guess they were too small ....

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    I'm so sorry for what you're going through, it's not fair. I've had new, intermittent hip pain in the past year or so, but none since my diagnosis in July and I feel like it was likely joint pain. Cancer is such a sneaky, scary disease though and my tumor is grade 3 so I think I'll always worry about recurrence no matter what.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Mine is also Grade 3. After tons of research I believe in the theory that over 87% of all stage 4 cancers are caused by the ORIGINAL biopsy...and to me, EVERYONE that was Stage 0 Then Stage 4 is proof of that. ...and further proof ..when I had my original biopsy they went in the breast at the 3 oclock position...my cancer was at 6 oclock...my recurrence was at the 3 o'clock position. Also I know a woman that refused the original biopsy..they saw something suspicious on her mammogram and she went straight to double mx...and she is now 12 or 13 years out no recurrence....

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Prayers for good results today, Nicole!

  • nicolerod
    nicolerod Member Posts: 2,877
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    OK Im back...

    I AM RESPONDING TO TREATMENT!!!!!!! MY GOSH I AM SOBBING JUST SAYING THOSE WORDS HERE FOR THE FIRST TIME IN OVER A YEAR and HALF!!!!

    All the tumors in liver have shrunk the biggest (and oldest one) went from 4.0 to 2.6!!! The next when from 2.0 x 1.2 cm to 1.5 x 1.0cm but then the newest but smallest almost looks like it grew (which makes me nervous but she is not concerned) bc it went from 1.1. x 0.9cm went to 1.2cm x 1.0 then they said about that : "not significant changed" .....but that makes me think the cancer is mutating (since that is the newest one and it grew)....

    Anyway..I meet with the IR Thursday to discuss the Y90. MY MO said IF the IR gets the 3 tumors via Y90...that would mean essentially that my liver is NED...she feels comfortable giving Endocrine Therapy another try. I am just praying the IR can get a big enough sample for Tempus of that newest (smallest) tumor.

    Thank you all for all your prayers ...I am hoping I can ride this for more than 1 month (unlike Ibrance, Letrozole Faslodex)

  • zucchini
    zucchini Member Posts: 6
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    Nicole, CONGRATULATIONS!!! I've been thinking about you and keeping you in my prayers. I'm so happy you got this news. And I hope the minimal growth turns out to be nothing to worry about and you get to ned. I know it's so hard not to think everything indicates a new horrible problem. I'm so happy for your good results, though. Definitely hoping the eyebrows keep being worth it.

    Positively, I agree, you look so young and vibrant. I love what you did with your wig and brows. You look amazing. I hear you on eyebrows coming out more when you fill them in. If you don't mind me asking how many kids do you have?

    Denise, I like how you are taking things proactively. That seemed to take me a while to learn. By my 3rd and 4th infusions I think I've been doing a better job. It's such a different way to deal with symptoms than I did pre-diagnosis. Looking forward to hearing how the water worked for you.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Thanks Zucchini :)

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Nicole! I'm so happy for you, your news made me tear up! Prayers for NED.

    Zucchini, I have a 23 yo daughter in college a few hours from home. She's been coming home almost every weekend. I also have a 20 yo son. He just returned home from an in-state National Guard deployment to help with covid testing. I'm so proud of them both.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Awww Thank you Positively The Lord is soooo merciful and good to me...I am so blessed and grateful.

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
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    Zucchini, how are the Halloween plans for your kids coming?

  • Dubhain
    Dubhain Member Posts: 17
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    Btw, turns out my body aches were a precursor to Shingles and not from the Taxol. I plan on getting the vaccine (which I didn't know even existed until my sister decided to get it after I told I'd gotten Shingles), sometime after it's completed healed, or on the advice of my MO.

  • positivelyhalffull
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    Marian, hope your son's wedding was fabulous!

    Dubhain, I'm so sorry that you're having to deal with shingles on top of all this. I've heard they're miserable.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    Positively, thanks for asking. I started a post a week or so ago but lost it with our terrible Internet. I promise to speak to all of you in the next few days now that the wedding is over. I am copy/pasting from another thread that I am on and I know you will not mind.

    As for me, I am awaiting ultrasound results from 10 days or so ago. My voice turned hoarse several weeks ago and I mentioned it at chemo nearly 3 weeks ago and my MO was quick to order the US but no so fast at getting results to me. My thyroid left lobe lit up in the PET/CT in September along with other progressions. She is calling me tomorrow pre-chemo so I will find out more then. I did get an extra week off chemo for the wedding. The wedding came together and with Dr. Henry's latest edict (our province's Covid head) we were good. Nine of us in total and it was really fun. I was in charge of the photographer amongst other things and in the end we had a miscommunication about a photo shoot at Ross Bay cemetery and she thought we were doing the ceremony first but nevertheless it was always 3:30 to 5:30. I was the only one stressed and we were only about half an hour late for the ceremony at our house. That extended it further though when the bride's son Parker went trick-or-treating longer than he was supposed to. To be honest the light was way better the way it turned out anyway and all of those waiting for zoom to start up were very patient. I was so proud of my son Andy and his bride Kara. Both of her parents have died and there was some sadness around that but our family rallied around including our son Steven and partner Heidi who are in Australia. Saturday was a beautiful afternoon and evening and the wedding took place on our deck overlooking the ocean. I just tried to add a couple of photos but the Internet is not cooperating so I will add them later. It was a very special event for me and as Andy wiped away Kara's tears during the ceremony, I had my own tears too.

    XXOO Marian

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
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    I gave it another try and got one downloaded. This is the bride and groom just before the photographer started. You may recall it was a 20's theme. I tried for more but Internet is being difficult again.

    image



  • nicolerod
    nicolerod Member Posts: 2,877
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    Mariane..congrats! My son just got married last month as well. On the topic of hoarse voice..this has been happening to me since starting the Halaven...I went to an ENT and found out its causing Silent GERD...I am now taking some Nexium (only for a short time though)

  • zucchini
    zucchini Member Posts: 6
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    Hi, all, sorry I disappeared. It's been a rough couple weeks. We lost power, I had my infusion, did Halloween (yay!), then my caretaker got sick, then I got sick and ended up in the hospital for neutropenic fever. I'm still in the hospital but doing well and hoping to get released tomorrow.

    Positively, they sound like great kids!

    Halloween turned out to be pretty great for mine. We kept it small and at the house. I managed, with help, a glow stick hunt on the patio for little wind up toys, jello with toy bugs, and a little ring toss and bean bag toss game for treats. My kids seemed to really have fun and kept trying to trick or treat the bowl days past Halloween. I'm so glad it wasn't a bust for them to have to stay in.

  • zucchini
    zucchini Member Posts: 6
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    Duhbain, I can only imagine how painful that's been. I hope you heal up quickly and feel better soon.


    Marian, your son's wedding sounds like it was wonderful. They look amazing and like they were having so much fun! Congratulations!


    Nicole, I'm glad they found the source. I've had some awful reflux and it's a lot to deal with. I hope the medicine helps you feel more well again.

  • d37
    d37 Member Posts: 73
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    zucchini,

    I’m so sorry that you got sick and are in the hospital. That’s great that you are going home tomorrow. It sounds like you had a busy Halloween. I remember those days, my kids are in their 20’s now. It must be difficult to juggle caring for your kids and chemo.

    Denise