Stage 2 Sisters Club

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited May 2016

    Hopeful - Thank you my friend. Yes, grade 4 brain cancer sucks, as you know. I wish it could make any sense; there are no even clear risk factors for this monster!

    Giazuc - Congrats! I like moles :)

    Molly - I agree, we may all be crazy and how could we not?!

    CP418 - Yay to Prolia! Thank you so much for article. Very persuading findings. I really like the idea of a shot every 6 months instead of an "infusion" - word that brings back unwanted memories.

    Everyone - We have been each others' Moms in so many ways. Happy Mother's Day!

    Hugs, Nisa



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  • cp418
    cp418 Member Posts: 7,079
    edited May 2016

    ThinkingPositive - yes, I just switched to Prolia injection after trying Zometa infusions for several years. I much prefer it and did not notice the body aches as much afterwards like with Zometa. The injection was much easier for me than an IV infusion taking about 45 minutes to setup and infuse (I have bad veins too). Shot in the arm and I was out the door.

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited May 2016

    Wishing a very Happy Mothers Day to all of you wonderful ladies!! Hope you get to enjoy today relaxing and enjoying whatever makes you happy today!!!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Happy Mothers Day to all mothers, aunts, and mentors of young women!

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2016

    Happy Mothers Day !!

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  • grandma3X
    grandma3X Member Posts: 759
    edited May 2016
    Happy Mothers Day! I'm spending the day helping my daughter clean up her basement that flooded after all the rain :)
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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2016

    Happy Mother's Day to all!

    I have been on Prolia for more than 3 years - it is excellent for me, reversed me back to normal density by year 2, no side effects at all.

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2016

    SpecialK... Happy Mothers Day. Haven't talked to you in a while. I am thinking of requesting it instead of the actonel. Does your insurance cover it and do you know if there is a generic

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2016

    thinking - yes, my insurance does cover Prolia, and it is a relatively new drug so I am fairly sure there is no generic yet. I get my injection at my MO and I believe they bill about $2600, and the injection is every six months. I pay my usual co-pay and that is the only cost for me

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited May 2016

    Special K - so glad this topic is on today. I think we talked about this before but can't remember details. I imagine you did tons of research before going for Prolia which is what I am leaning towards but... what did you think at the time of the long-term/permanent side effects some people report? Was your fear and risk of fracture greater than fear of pretty serious SEs? I have been reading and, wimpy me, I'm wondering if I should have treatment at all. Running into an old friend on crutches didn't help -after second shot her femur broke spontaneously when getting up from a chair, and months later still on crutches. I have asked 3-4 oncos if Arimidex-related bone damage was a linear process. All said "no data." How could that be after so many years on the market? I should email AstraZeneca. Decisions, decisions!

    Thanks, Nisa

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2016

    nisa - actually I trusted my MO enough that when he said I needed Prolia I agreed without research. I liked that it was a monoclonal antibody, like Herceptin, that is specifically targeted. Even though it is a drug I feel like its process is a bit more holistic in that it doesn't coat the bones and make them less elastic, and potentially more prone to fracture in a fall - rather it slows the old bone removal mechanism allowing the new bone creation to catch up. If someone had a spontaneous fracture after the second injection it is likely that this may have occurred anyway because this person had a density issue that required medication - Prolia works pretty slowly and usually takes around two years to show improvement in bone density. It might be difficult to pin the fracture on the drug, but had she also used bisphosphonates previous to the Prolia? My FRAX score is high, I have had a previous non-BC related serious double fracture in a bone that is very hard to break - spent 12 weeks in a non-weight bearing cast, on my right leg - so no driving. I lost a tremendous amount of density after chemo and six months of Femara, so I was very pleased when I showed nearing normal density after two years on Prolia. Which long term SEs are you concerned about?

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Nisa, refresh my memory; do you have osteoporitis?

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  • cp418
    cp418 Member Posts: 7,079
    edited May 2016

    Nisa - remember that Prolia versus Zometa are two different classes of bone drugs with different side effects. http://news.cancerconnect.com/denosumab-more-effec...





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  • Molly50
    Molly50 Member Posts: 3,773
    edited May 2016

    I like that Prolia can help prevent recurrence as well.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2016

    molly - anything that improves bone density makes the bone a less hospitable environment for mets - true for both Prolia and bisphosphonate drugs.

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2016

    I am currently taking the generic form of actonel once a month. Since I have not yet met my deductible this year it costs me $170 which is the negotiated rate per month and that is just for that drug. Not sure why it's so high. My Letrozole only costs me $83 per month. Not sure my insurance would pay or give me a negotiated rate for Prolia. I would rather be on the prolia as I have read it's better than the actonel for building back bone and preventing recurrence. Is there any truth to that

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2016

    thinking - no, I don't think that Prolia is necessarily better than Actonel, just different. The difference between the two is mainly the oral SEs that Actonel has don't occur with Prolia and I think the fracture rate on Prolia is slightly lower for those on the drug long term, because it doesn't interfere with the bone elasticity. Often insurance will pay for Prolia if you can demonstrate that the bisphosphonates either cause intolerable SEs (for me they did due to previous reflux surgery), or are not working.

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  • Giazuc
    Giazuc Member Posts: 44
    edited May 2016

    Hi @ruthbru, @molly50, @nisavilla and @cp418 sorry I've been MIA. Lol, I love being crazy together. You guys are the best!

    Hope all you ladies had an amazing Mother's Day

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  • Catherine3
    Catherine3 Member Posts: 26
    edited May 2016

    hi there! I am stage 2a like your wife and about to start chemo. We are all nervous about chemo even though I am getting a low dose. I was wondering how I can help my husband as my caregiver like what did you feel helped you as your wife went through it and my husband wants to know what you would advise him to do that may have helped your wife out as she went through chemo? I guess any insight and advise is appreciated by us both! ❤️I start next Thursday. Thank you

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Some tips I would have:

    * if he is a good, or okay, cook, put him in charge of the meals. Food might taste & smell funny to you & you might not want to be in the kitchen very much (if he is a rotten cook, you might want to do like me and have friends make a calendar & bring your family meals a couple times a week).

    * ditto with the cleaning duties (we actually hired a house keeper who came every other week and did the 'real' cleaning & he'd touch up the week in-between)

    * if you have kids at home, if he can do some of the running around/dropping off/picking up duties that would be helpful. Also if he could take them away sometimes so you can have some rest, that helps too.

    * I think it is hard for the caregiver; because as a patient sometimes you are just mad at the whole world and nothing is going to make you feel better! So, as a caregiver try to be supportive & positive, but don't take it personally if sometimes your patient is crabby. Sometimes you just have to be there and not say anything.

    * I guess the most important thing I would advise would be to tell him to follow your lead: However you want to handle things (like how much you want to share with others, whether or not you want to keep working, keep exercising, what commitments you want to keep or get out of) he should try to be supportive the way you want to do this.

    Those are some things I can think of right off the top of my head. I wish you both all the best! Keep us posted.


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  • grandma3X
    grandma3X Member Posts: 759
    edited May 2016
    Just got home after my PMX of the right side yesterday. Feeling no pain and enjoying a few minutes of sunshine on the back deck. Thanks again for all your support here and on other threads! I have no idea how I would have gotten through the last 6 months since my dx without Breastcancer.org!
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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Glad you are home and sitting in the sun!

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  • Molly50
    Molly50 Member Posts: 3,773
    edited May 2016

    grandma! Great that you are feeling well. That gives me hope for my pmx which I hope to schedule SOON!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited May 2016

    imageThat's what this thread has been to me!!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Very true!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited May 2016

    Nisa - when you come to Chicago you'll get to ride on our new bike! Inaugural ride today since its finally beautiful today - Sunday Fun Day!!!!image

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  • Molly50
    Molly50 Member Posts: 3,773
    edited May 2016

    msj, what a beautiful bike!! I have my first post op diagnostic mammogram on Wednesday. If you pray please keep me in your thoughts.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Hang in there, Molly!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    I'll have you in my thoughts, Molly.

    I have my first post-op MRI the same day - and start Zometa that morning. It looks as though all my fingers will be tightly crossed ;)
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  • Molly50
    Molly50 Member Posts: 3,773
    edited May 2016

    I will be in your pocket Hopeful

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