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Starting chemo July 2014

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Comments

  • jaycee49
    jaycee49 Member Posts: 1,264

    Hi, guys. Remember me? I started chemo right at the beginning of Aug. 2014. I used to frequent the July thread before the Aug, thread started. Then I read both but mostly posted to the Aug. thread. I remember all of you. (I remember telling DH there is this woman who is pregnant with TWINS!) I ran into Mags on a stage IV thread recently and decided to find out how all my beginning buddies are doing. I'm always happy when reading various stage IV threads and NOT seeing any of you. Then I saw Mags and checked the July 2014 thread. Someone mentioned a Pink and I was so upset. My old friend Pinkninja. I actually met Pink on another BC forum and she directed me here. Much better forum, she said. I found her here and the rest is history. But my history on the Aug. thread was truncated because I got so sick after two rounds of TCH, I quit. Yup. Just quit. I felt like a coward and was too embarrassed to come back here, to any thread and tell my story. After stage IV dx and a few months to let myself off the hook, I knew I needed to be here. The stage IV threads have some amazing people and the information and support is … well, you know.

    If you want to know any more of what happened to me, I posted this on the "tell us your stage IV story" thread. It's long and involved but aren't all of our stories, stage IV or not.

    https://community.breastcancer.org/forum/8/topics/831578?page=10#post_5007941

    I'm going to post this on both the July and Aug. threads so no, you are not seeing double.

  • magdalene51
    magdalene51 Member Posts: 2,062

    Jaycee, I just noticed your town - I graduated from LCHS, class of ‘68. Small world, eh? Good to see you again.


  • knmtwins
    knmtwins Member Posts: 437

    Ladies - it is FOUR YEARS for almost all of us this month and for me it is 4 years TODAY. It is also the anniversary for Jennliza, JoeysMommy, Kpmacmill, pinkninja9560, Dancingdiva, and JenKay. I think I will message all of them. I couldn't have done this without each and everyone of you. My love, gratitude and prayers go to all of you. As to me, dealing with the side effects of Nerlynx pretty well and praise God for each day. I hope as this is our anniversary month, many of us will post 'Hellos' and 'updates'.

  • knmtwins
    knmtwins Member Posts: 437

    Mags - how is everything going? I keep thinking about that lovely new house of yours, then you were in the hospital... you are always in my prayers and I hope things are well! - Kay

  • puffin2014
    puffin2014 Member Posts: 915

    Very grateful to be celebrating my 4th chemo anniversary. I had my 6 month check up with my onc last week. I'd lost 25% of bone in my arm 2 years ago on my dexascan from my arimedex and had talked my onc into skipping Prolia if I promised to get back lifting weights with my arms. My recent dexascan showed my arm bone density had improved 4.1% so I'm good for another 2 years without Prolia. We're going to do the BSI test in January to see if I'd benefit from another 5 years on the arimedex or if I can stop it after 5, which would be Nov 2019.

    Hoping to hear from all my July chemo sisters.

  • knmtwins
    knmtwins Member Posts: 437

    Puffin, great news. Also, my DexaScan was on my hip area, do they do different ones? Oh, and yes, that was over 2 years ago, I need another one. I will say, I have slipped into the 'bad' about going to the doctor. With 3 kids I feel like all our medical money goes to them. With $60 co-pays, and $750 deductibles then 20% for hospital and imaging it adds up so quickly. Sometimes when listening to the AARP ads for those on Medicare, I wonder, is there supplemental insurance for us younger folks? I never thought I'd be in a situation where I'd be making choices about doctors visits based upon money.

    For me, I have a follow-up for Nerlynx and labwork and 6 mo, next week with my MO.

    I never know who will post, but I did 'friend' and then 'message' all of us who started on July 16th, yesterday. I saw this morning on facebook a post from Pink, of "10 kids, 3 grandparents and 2 great grandparents!!!" so she is out and about, watching Hotel Transelvania today.

  • elainetherese
    elainetherese Member Posts: 1,624

    Puffin!

    kmntwins!

    Happy to hear from both of you. I'm doing OK. I'm on Prolia for loss of bone density, thanks to Aromasin and Zoladex. I have been swimming almost daily this summer, which is nice. But, the weight I've gained since chemo is stubbornly clinging to me. Ugh. Otherwise, not much new. I had my first colonoscopy, which went OK. I'll be visiting my GP tomorrow; I'm looking into the new shingles vaccine. I will also be checking in with MO on Friday and getting my Zoladex shot.

    Glad to hear you're surviving Nerlynx, kmntwins!

    Puffin, good for you for working out with weights and recovering some of your bone density!

  • knmtwins
    knmtwins Member Posts: 437

    ElaineTherese, get the Shingles vaccine, shingles is horrible, although, the massive amounts of gabbapentin they gave me helped significantly with my chemo nephropathy pain. Who even knew I had it, I just knew I had trouble feeling my toes... I thought all the places that hurt were just 'getting old'. I stayed on it for about 6 months and life was much better. Also, I think I had it for the second time, my Dr. said, get the new vaccine, and that they can only get a certain amount in, so call ahead to make sure it is available.

    Also - Pink update, she is at a huge (30 people) reunion at the beach. Go Pink!

  • puffin2014
    puffin2014 Member Posts: 915

    kmntwins: Yes, my dexascan also included my back, spine and hip, those have remained stable. Medicare doesn't cover the cost of doing the arm scan, so if I wanted to compare with my previous scan to see if the weight lifting had helped I had to pay the extra $150.

  • knmtwins
    knmtwins Member Posts: 437

    Ladies - Hello - please send out extra love for PinkNinja. She is seeing about different treatment options at the moment and I know our prayer, love and good thoughts will help her. For me, doing OK, almost done with Nerlynx. Love you all!

  • elainetherese
    elainetherese Member Posts: 1,624

    Thanks for letting us know, kmntwins. Will do. Glad to hear you're almost done with Nerlynx. I just had a clean mammogram in September, and am still trying to lose the weight I've gained on Aromasin. Otherwise, doing well!

  • nancy2581
    nancy2581 Member Posts: 407

    I am friends with Rachel on Facebook. She has definitely been going through some tough times. She is a true warrior of this disease and my heart goes out to her - beautiful lady.

    Glad to hear you both are doing well. Me too as far as I know.

    Nancy

  • puffin2014
    puffin2014 Member Posts: 915

    I'm Facebook friends with Mags and this was posted today. She has moved into the Hospice House.

    She is at the Integris Hospice House
    13920 Quailbrook Drive, Oklahoma City, Oklahoma.
    Room# 101

  • knmtwins
    knmtwins Member Posts: 437

    Puffin - Thank you for letting us know.

    Mags - if you still read this, we love you and are praying for you. Thank you so much for starting our page. You have been such a support to each and everyone of us. The Lord has shined through you to us, making this process easier.

  • puffin2014
    puffin2014 Member Posts: 915

    Mags passed away since my last post. Rest in peace Mags, you fought a good fight.

  • knmtwins
    knmtwins Member Posts: 437

    Puffin - thank you so much for letting us know, as I am trying to wrap my head around it. She will always be in my thoughts and prayers, as will all of you, my July 2014 Chemo Sisters.

  • elainetherese
    elainetherese Member Posts: 1,624

    Yes, Puffin -- thanks for keeping us up to date. Dear Mags, just as she was starting a new life in her new home! So sad. Two July ladies gone -- Mags and Kebab.

  • nancy2581
    nancy2581 Member Posts: 407

    Oh no - I am so very sorry to read this. Mags rest in peace always. We will always be thankful to you for starting this group.

    Puffin - thanks for letting us know.

    Please keep Rachel (pinkninja) in your thoughts and prayers. Her cancer has moved to her brain and she is having a tough time right now.

    Nancy

  • elainetherese
    elainetherese Member Posts: 1,624

    Thanks for keeping us up to date on pinkninja. Brain mets suck. Hope you (Nancy) and Puffin are continuing to do well.

  • bandwoman1234
    bandwoman1234 Member Posts: 5,672

    image

  • puffin2014
    puffin2014 Member Posts: 915

    Elaine, I'm doing well. MO is planning on doing the Breast Cancer Index in January to see if I'd benefit from remaining on arimidex for another 5 years or if I can stop. The bones in my arms have developed osteoporosis. Lifting weights improved my bone density by 3% in my arms but density is still down 22%, just need to be careful not to trip and fall.

  • elainetherese
    elainetherese Member Posts: 1,624

    Puffin,

    I've heard of that Index. I will ask my oncologist about it. Special K on the Triple Positive Board did the Index, and now she's doing five more years of Femara.

    Attached below is Magdalene51's obituary as it appeared in today's paper:

    https://legacy.newsok.com/obituaries/oklahoman/obituary.aspx?n=HELEN-BRODA&pid=190591558

  • dancingdiva
    dancingdiva Member Posts: 317

    so sad to hear this. RIP Mags.

    How do I find pink ninja- Rachel I think - on facebook

    This is why i don't come to this site too often. Great source of info but then sad news.

    DD

  • elainetherese
    elainetherese Member Posts: 1,624

    Hi dancingdiva!

    You might try PM'ing Nancy2581 or kmntwins. They know how to find pinkninja on Facebook. Are you doing well on Ibrance/Femara? I'm doing OK on aromasin and Zoladex, though I'm working on losing weight. ((Hugs)) Yes, this site can be depressing.

  • knmtwins
    knmtwins Member Posts: 437

    dancingdiva - I have just asked her if I can send you that info.

    Rest of July sisters. Pink's brain tumor (s?) are creating issues making her dizzy etc. therefore, she is having a craniotomy on Monday. Please keep her, her husband and her family in your thoughts and prayers. I've been crazy with a concussed son, since October 8th, so haven't been keeping up fully, but I noticed that. Love each and every one of you and could not have been through all this without you.

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    I'm sorry to hear about your son, and hope he's doing much better these days. Thanks for the info. about pink; I will certainly add her to my prayer list!

  • knmtwins
    knmtwins Member Posts: 437

    Here is the PinkNinja (Rachel) update taken from her FB page, so I'm hoping it is OK to share with you guys.

    "Hello Friends... been 24 hours since brain surgery. Rachel out of ICU this evening and in private room where hopefully will get a good night sleep.

    She is doing ok so far under the circumstances. Still has very poor vision but doctor said it is normal.

    She is still very weak and can only walk for short periods.

    So far so good. Long road ahead but God goes before her.

    Thanks for your prayers."

  • puffin2014
    puffin2014 Member Posts: 915

    Thought I'd post that my oncologist called today with the results of my Breast Cancer Index. My risk for re-occurence in the next 5 years is 5.2% (5 is considered the point it becomes high risk). However, the test also showed that staying on my arimidex would not significantly change that percentage number. I'll see what my oncologist is thinking at my next appointment, but in my mind why stay on it and risk further osteoporosis if it isn't going to affect my cancer risk.

  • elainetherese
    elainetherese Member Posts: 1,624

    Thanks for the update, Puffin2014. I don't blame you if you quit Arimdex; I have also been diagnosed with osteoporosis since beginning Aromasin. I know it makes me kind of nervous about some activities, like I feel I have to be VERY careful when I'm out scootering with the kids because I'm supposedly at high risk of fracture. However, I'm not sure that I qualify for the BCI, since I was HER2+ and had one node test positive. In my last appointment with MO, she said I'd be a candidate for 10 years of Aromasin, given that my cancer was so aggressive.

    Hope your MO is on board with your line of thinking!

  • knmtwins
    knmtwins Member Posts: 437

    Puffin2014 and ElaineTherese - what is a Breast Cancer Index? Elaine, I wonder if my MO just hasn't discussed it because I too was Her2+ and am currently finishing Nerlynx. I saw her in January and she re-ran my estrogen markers and wants another Dexa. Last one, I think in Fall of 2015, I was osteopenia, pre-osteoporosis, so the question will be, once those tests are in, do I switch to an AI or stay on Tamoxifen. Also, I've been bleeding, and should get my uterine biopsy results on Monday, so my guess is, that will figure into it also.

    As to our lovely Pink Ninja, last post I saw was she is to come out of rehab this weekend. Here is what was posted on her page. I think her husband is currently managing it, due to vision issues from the surgery, which should improve with time.

    ...Saturday, Feb. 9....

    Rachel coming home today after almost 3 weeks of (surgery, hospital stay and rehab).

    She is being transported to the Bowers Rehab Facility where she will get 24/7 hubby and puppy care. 🙂 🙂

    Please continue to pray...still a long road of recovery ahead. Grateful for you all.

    God is so good. 🙂 🙂 🙂