Life does not end with a stage IV diagnosis (really!)

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Artist. So beautiful. How wonderful!!!! I'm beaming just looking at the picture and knowing how precious this moment was to you!

    Babs

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  • Lita57
    Lita57 Member Posts: 2,437
    edited October 2017

    Fabulous dress!


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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited October 2017

    JUst beautiful   

    I hope every day I am here for my kid's wedding (if they choose to get married - who knows!!!)   I want them to hurry and I want them to put it off , neither is ready 19 and 24   Keep my thoughts to myself!

    Nel

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  • CanaLoon
    CanaLoon Member Posts: 30
    edited October 2017

    Just to carry on part of the conversation about the accessibility of the availability of these drugs to the pre-menopausal women and men ... its been a problem I know. But I just signed an edited version of the drug trial I'm on, admittedly in Canada but we usually get the changes later than what happens in the USA. The trial which is sponsored by Novartis is now open to men and pre-menopausal women (with no prior hormonal therapy for advanced disease). There's a third drug that premenopausal people have to take along with Letrozole and Ribociclib (Goserelin). I hope this works for additional people.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2017

    Artist- Congratulations!! Score another momentous, uplifting event! Yup, we all want to see our kids grown up and so happy!

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  • Kandy
    Kandy Member Posts: 1,461
    edited October 2017

    Artist, that pic put a smile on my face. So happy that you were here for that special event. I pray they have a long, healthy marriage. Enjoy every moment.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2017

    Thanks everyone, I still have two to go that I hope to be there for......

    image

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  • ChelleG
    ChelleG Member Posts: 540
    edited October 2017

    You have beautiful children Artist!! They take after their mamma!

    I hope everyone has a great day!!

    Love Chelle

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  • tina_marie
    tina_marie Member Posts: 88
    edited October 2017

    Hi Ladies, I just thought I'd pop in to say MY OGRANS ARE CLEAN! that was great news to hear... i have mets in 3-4 different areas in my bones and I have a 4mm something in my brain. The radiologist said something to me like it is in a non-clinical area.. they said they don't know if it's cancer and its too small to biopsy so they have me set for a scan in to months already to keep a watch on it.

    I have my follow up to discuss how my current treatment is going to change now that we have the bone mets.

    I enjoy reading all your stories.. I'll keep you posted!

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  • CanaLoon
    CanaLoon Member Posts: 30
    edited October 2017

    Wow, what good news - and they get creative with their treatments so I hope whatever they find is tolerable as well as effective. Maintain those great spirits ehh?


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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited October 2017

    Tina_Marie, WOOHOO for clean organs! Once you know what your treatment plan is, let us know. There are many treatments available for bone mets. Are you experiencing any pain?

    Hugs from, Lynne


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  • tina_marie
    tina_marie Member Posts: 88
    edited October 2017

    So I had started my chemo c/t then taxol.... but met with my Oncologist today.. he said that he put my case in front of a bunch of oncologist and the majority of them said since i've only had 2 treatments to stop chemo and start XGEVA and IMBRANCE treatment. I go get my "teach" visit tomorrow where they will go over meds and everything with me.

    Are there threads that talk about those treatments?


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  • CanaLoon
    CanaLoon Member Posts: 30
    edited October 2017

    Hmmm - what I know is that chemo is the least preferred treatment for Stage4/metastatic BC. The OncLive website is aimed specifically at oncologists/medical people but can be a great site for the most recent opinions/evidence from the various Trials going on at conferences etc. So I'd look there for XGEVA ... and Imbrance too. Just remember that they are all speaking science talk, but I find it understandable over the series of videos. Congrats on getting as far as the "teach" session. Pills are so much easier to take than the liquid chemo ... Thanks for continuing to share your story!


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    Tina Marie,

    Here's the link to the Ibrance ( I think that's what you mean. Not aware of a drug called Imbrance) thread. It appears to be quite active

    https://community.breastcancer.org/forum/8/topics/...


    I would also like to thank you for taking tx concerns to the appropriate thread. I really want to keep this thread as a place to celebrate, announce and discuss the normal ups and downs of life that we still experience, even with stage IV bc. Take good care of yourself!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2017

    Awww thanks Chelle, the lights of my life! Great news Tina1

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  • tina_marie
    tina_marie Member Posts: 88
    edited October 2017

    I really wish there was a like/love feature for each of your post... Thank you for your comments and suggestions. You ladies are all so sweet and encouraging!


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  • tina_marie
    tina_marie Member Posts: 88
    edited October 2017

    Hi Lynne and all of you.. So my treatment plan is going to be Ibrance and hormone therapy as well as Xgevna (sp?) injections monthly.

    As I was saying on another thread, probably best discussed here, In July / august when I was diagnosed with stage II breast cancer, I thought that this would be a bump in the road of life I'd have to get through and then I can move on.. Until they realized in September that it was really stage IV metastasized to the bone and no i'm really having a hard time processing that this will be a battle now for the rest of my life.. This is my new reality.

    This is a much needed thread for me that "life does not end with stage IV diagnosis (really!)"

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  • CanaLoon
    CanaLoon Member Posts: 30
    edited October 2017

    I'm delighted to be able to say that the combo of letrzole and ribocib seems to be working! I'm hardly coughing any more and while I still get tired I can't tell if that's the lung mets or a side effect of the drug combination. I cleaned my car (first time in a year). Breathlessness is much better. I guess I'd call this a really good day. Do any of you struggle with chemo fog? Any solutions to it do you think.

    Suza

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    Tina Marie,

    So glad that you find this thread helpful. I know that many stage IV members have a rough time and MBC has stolen almost every bit of their normal life, but they are not the entire stage IV story. I hope this thread gives everyone, especially the newly dx'ed, some hope and allows them to embrace their lives with joy and purpose, regardless of how long or short that life is.

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  • Likesquirrels
    Likesquirrels Member Posts: 8
    edited October 2017

    Tina Marie,

    I want to give you a hug. I was diagnosed Stage IV in August with bone met also. I just finished my second cycle of Ibrance on Saturday. Today is my first day of this cycle off Ibrance for a week.

    I am on the exact same regimen as you, I began Letrozole immediately in early August, have 2 three week cycles of Ibrance under my belt and received my 2nd Xgeva injection last week.

    As long as I can keep the dark clouds from overtaking me everyday, I have been feeling better and functioning well. I take the Ibrance every morning at 9am with the Letrozole after eating breakfast. It seems to be working for me stomach wise.

    I may be feeling some tiredness from the Xgeva, but not certain if that is why, or if it is just part of the disease.

    Best to you.


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  • BeckyMD
    BeckyMD Member Posts: 14
    edited October 2017

    This is my first time posting.  I was dx with stage IV BC in March 2017, after having BC stage 1 in 1996.  Of course I thought all this was behind me after 21 years!  What a shock - am still somewhat in denial, I think.  After 3 rounds of chemo (perjeta, Herceptin, taxotere), I have been on faslodex and arimidex since June 2017.  If anyone else is on this combination, I would love to hear about your experiences.  I mostly have fatique, and aches and pains, but trying to live a normal life.

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited October 2017

    Welcome Becky but sorry you find yourself here.

    I can understand your shock completely. It was almost 16 years between my original diagnosis of stage 2a and my mets diagnosis at the beginning of January. But you have found a great place full of supportive, caring individuals. I haven't noticed anyone on that precise combination but believe there are threads for both individually - I'm sure if you chime in on those threads you will find someone else that protocol.

    Pat

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  • NeverForsaken
    NeverForsaken Member Posts: 175
    edited October 2017

    It feels like I have been stumbling around in some weird dreamscape for the past month.

    It all started with a pain in my right scapula..I massaged around the perimeter of it and found a small lump. Made the appointment, and right then and there the surgeon cut it out (a 9mm. mass) that was about an inch and a half deep down where bc does not normally come back!

    I had just recieved a clean bill of health from this same surgeon as well as my MO just September.

    So, then I went from one scan to the next..PET revealed a 3cm MET in AX node on right side..same cancer as before, only now ER/PR++

    Also, there is an area deemed "indeterminate" on my T1-T2 vertebrae..says "Metastatic disease not to be ruled out." or something like that.

    Last wednesday I had my port reinstalled, the next day (surprise to us) my first A/C chemo!

    Seriously my family and I just thought we were going to the MO to hear the PET scan result on Thursday.

    I am a person of faith and I am trying to hold it all together, but this is still a shock.

    Just this summer, after being cancer free for three years, I finally started to plan for a future with my dear husband when he retires in seven years. I was afraid to do that before!

    September I visited my daughters and even went hiking..they had a hard time keeping up with me!

    Wow, how things can change!

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited November 2017

    Welcome to all the newcomers here. Although having MBC is a real shocker, life does go on, the good and the bad.

    Last Sunday we had a powerful storm in New England, and more than 300,000 households in New Hampshire were left without power. My neighborhood's power was finally restored last night, Wednesday. We did have a portable generator, and it provided backup power for our heat, fridge, pump for well (no water without that) and a few outlets. School was cancelled for a few days because fallen trees and power lines made travel dangerous on some of the school bus routes. Trick-or-treating was postponed to Sunday. Of course, this is nothing compared to the major disasters that have occurred elsewhere.

    On a positive note, my DH and I are currently sitting on a beach in Hawaii. We left NH whilethe power was still out. Good timing, I think. Here is the view from my lounge chair.

    Hugs and prayers from, Lynne

    image

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  • babs6287
    babs6287 Member Posts: 2,021
    edited November 2017

    Lynne take me with you. It looks so pesceful!!!! I could use that! Just spent the last 5 days helping my DD pack up for her move to Paris. Sooo tired. Went there after workIng all day. She left yesterday and I miss her already.

    Bab

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2017

    Lynne,

    Smart move ! Enjoy the beach and the Aloha Spirit.

    I'm running home to walk and feed my dogs and then back to school to run a booth at Family Science Night. Every time I think of the fact that I am teaching full time and doing a multitude of other fun things, I feel like I'm giving bc the finger !

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited November 2017

    Oh, Lynne, I'm so envious! I love, love, love Hawaii. Enjoy the relaxing, sunny days. Which island? Sorry if I missed it.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited November 2017

    Didn't get here on Thanksgiving day to wish fellow Americans a Happy Thanksgiving, but hope you all had a lovely day. Just want to express my gratitude that I am still here, doing well, and that I was able to celebrate my 3rd holiday since dx. Hugs to you all. Life does go on!

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  • babs6287
    babs6287 Member Posts: 2,021
    edited November 2017

    Bjsmiller. Hooray for 3 Years. Wishing you 100times that!

    Bab

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited November 2017

    Thanks, Bab. So excited for you with the impending birth of your grandson. The best possible medicine. Thanks for sharing the lovely photos of your family. I'm so glad you were able to make the trip back to Paris.

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