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Extensuve bone mets at 36 with a 2 year old toddler...

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lmdws
lmdws Member Posts: 13

I am 36 years old with a 2 and a half year old, i was diagnosed with cancer at 34 and was 12 weeks pregnant with our 2nd child. The 1st biopsy the doctors did aborted my baby (7the miscarriage). I had been living with a lump in my breast for 4 years and during pregnancy that the doctors told me was a cyst. My mother passed away from bc in 2015 and my 15 year old brother had Hodgkins lymphoma at the same time (now 22 and healthy). After the biopsy my small 3mm lump that i had had for 4 years syddenly increased to 9 tumors ranging from 16mm to 3 cm in 2 months. I had a left breast masectomy in November 2021, then a local reoccurrence in March of 2022. My husband and I opted for no further treatment as we wanted a 2nd child and wanted to wait for hormone treatment until after since we had tragically lost our baby due to doctor error (overdose of anesthesia during biopsy while breastfeeding which later was confirmed to be the reason the baby died). In March they removed the local reoccurrence and did a scan that showed no cancer. By June of 2022 I ended up in the hospital with a shattered l5, and l3, a broken l2, c6, c1, and t2 from bone mets. I had a kyphoplasty of the l5 and l3 and underwent radiation on right hip. My bone mets was in every vertebra, my occipital bone, 7 ribs, my sternum, both hips, si joint, and arms. The doctor gave me 3-6 months at that point. I had to have a total left hip replacement in Sept of 2022 and underwent 2 rounds of chemo. June through September I was completely bed ridden, ended up with sj syndrome from the doctors over prescribing meds while in the hospital and my body couldnt process and now i am allergic to almost all antibiotics and pain meds. Both sciatica nerves were damaged and I have bad neuropathy now. I am currently on letrozole, zoladex, and zometa infusions as I have responded very well to treatment. I am walking again after lots of hard work, determination and therapy and I am off all pain meds. However, I still have trouble walking without the cane and when I sleep my back hurts so bad and I can barely move. Will this ever improve? I want to be able to play with my little girl, garden, and cook again does anyone have any advice or encouragement?

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  • moderators
    moderators Posts: 7,913
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    Hi lmdws, and welcome to our Community. We're so very sorry to hear of your diagnosis and all you've been through, but we're so glad you've found us. We're sure you'll find our amazing space and wonderful source of information, advice, encouragement, and support -- we're all here for you!

    You have certainly been through a lot and we are heartbroken for the loss of your child, as well as the mets diagnosis. But we are glad to hear you're making some progress with walking and managing the pain. That is no small feat. We are sending good thoughts that with some more time, your pain will continue to lessen and accessibility will continue to improve your quality of life with your husband and little one.

    You're sure to get some great support here! We're sure others will be by shortly to weigh in. In the meantime, we wanted to share with you our Virtual Support Group Zoom meetup program -- we have a specific group that meets on Thursdays at 1pm ET for Young (under 45) Folks with MBC, as well as 3 other weekly MBC groups -- all full of amazing, supportive members. You can see the schedule for all groups and register here: https://www.breastcancer.org/community/virtual-mee...

    We hope this helps provide you some support and we look forward to hearing more from you.

    Sending gentle hugs,

    --The Mods

  • nkb
    nkb Member Posts: 1,561
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    IADWS- I am so sorry to hear this! I am glad that your pain is better - have you gotten a second opinion re whether you should be on a targeted treatment like a CDK4/6 inhibitor (Ibrance, Kisqali to Verzenio)? there is a bone mets thread in the metastatic thread that you could read through and post on with many knowledgeable people who can also give you some feedback. It is a fairly active thread and more people will see this post. I will try to add the link after I post this.

    are you getting scans and Tumor Markers regularly? ER/PR+? what about HER 2?

  • moderators
    moderators Posts: 7,913
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    Thanks for that, nkb! Here is a link to the Bone Mets thread you mentioned: https://community.breastcancer.org/forum/8/topics/...

  • lmdws
    lmdws Member Posts: 13
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    yes, my oncologist wants me on kisqali however with everything I have been through and how my liver overloads every time I take a new medication my husband and I are apprehensive about taking it. I had an 8mm kidney stone and uretal stent in December 2022 and had reactions to almost every antibiotic they put me on and my liver enzymes were over 105. My tumor markers were at 112 in October coming down from 530 in August, but went back up to 440 at my last draw 2 weeks ago. Doctor did a CT with contrast which showed nothing new except that the spots they thought were cancer in my lungs are actually gone and all they see is scar tissue. I have another tumor marker draw Feb 2 to see if ithe increase was due to the elevated liver enzymes and poorly functioing kidney, or the fact that I switched from anastrozole to letrozole in December due to Gerd complications. If they have not come back down my husband and I will entertain the possibility of taking kisqali. My cancer is E+, P-, HER2 +.

  • olma61
    olma61 Member Posts: 1,016
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    HER2+ but you are not getting Herceptin? Is there a reason for that

  • lmdws
    lmdws Member Posts: 13
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    not really sure my oncologist has not mentioned that to me. She is colleagues with the doctor who did my genetic testing so im sure she is aware of my complete results.....the genetic oncologist explained that when I was 1st diagnosed I was classified her2- but when the genetic testing was done a year later that the classification had just been changed and so I now qualified as her2+? Still trying to figure out what everything means...it's all so confusing because they keep changing things. Unfortunately, due to the choice I made to not pursue initial treatment November 2021, when my cancer went stage IV bone mets my oncologist would not return my calls or the calls of the doctors in the hospital I was admitted to so I had to find a new oncologist in July of 2022 so therefore things have been all confused and we are still trying to sort things all out. Thankfully my new oncologist is a better fit and she is dedicated to my quality of life and helping me understand everything as we go forward.

  • mozuke1
    mozuke1 Member Posts: 39
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    I'm so sorry for all that you have been going through, especially the loss of your baby.

    I wanted to write to encourage you to give the Kisqali a try if your dr is recommending it. I was diagnosed at 49 with bone Mets, thoughnot as extensive as yours, and have been on Kisqali for 9 months. I have no side effects, other than low blood counts. At least 1/4 of my local support group is on Kisqali and it seems to be well-tolerated by most.

  • olma61
    olma61 Member Posts: 1,016
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    My question sounds very abrupt looking at it now, sorry if my tone was “off”, but I questioned because anti-HER2 drugs would be standard of care for HER2 over expression and could be a great addition to the arsenal of treatments that are available to you.

    I think the anti-HER2 drugs are still used for the ERBB(HER2) genetic mutations, so that might be available to you at some point. And Herceptin is relatively side effect free in comparison to some other drugs.

    I hope you do well with what your doctor is recommending right now, and verysorry you have found yourself here.


  • chicagoan
    chicagoan Member Posts: 963
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    lmdws-Wow you have been through so much. Congrats on being able to walk again. My situation is different from yours but I also had extensive bone mets and am much better now 6 years later. I encourage you to get on Kisquali or Ibrance-they really help. I am surprised you are not on Xgeva instead of Zometa but of course that is for your doctors to decide.

    What helped me in regaining mobility was 1) walking every day-I had to use walking sticks at first to maintain balance and support my spine. 2) I found exercising in a pool very useful because I didn't need to worry about falling and had much more mobility with the help of the water. Eventually I was able to resume yoga outside of the pool-very carefully. Now I can hike, play pickleball, do yoga, etc. I say this to encourage you that things can get better even after extensive bone mets, especially if you are willing to keep working hard as you have been doing. You have great motivation with your daughter. Best wishes.

  • lmdws
    lmdws Member Posts: 13
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    thank you for the encouragement....it is very uplifting to hear that I have the chance at doing my favorite activities once again. I have been very blessed and my beautiful little girl and loving husband have been such a motivation for me. I will talk to my doctor about all your suggestions at my next appointment and appreciate everyone who has responded to my post to offer experience I do not yet have...

  • malebreastc
    malebreastc Member Posts: 89
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    imdws

    I was diagnosed with extensive bone mets last year, my MO started me on Ibrance and Fulvestrant, my scan 6 months later showed the mets completely resolved.. I was recently able to dance at a family wedding for hours .. so there is hope always

  • terenciapereira
    terenciapereira Member Posts: 2
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    Hello Imdws, I hear you and I totally get what you’re going through. I was diagnosed with breast cancer when I was 31 with a two year old toddler. I did undergo miscarriage as well before my first baby and when I thought I was pregnant as I was having nausea, I found out I had breast cancer. I encourage you to believe in my Jesus and will also keep you in my prayers that miracles are very much possible, and I have seen and witnessed them myself. it’s all about trust and surrendering yourself of everything you heart and letting it go God bless!

  • jsniffs
    jsniffs Member Posts: 136
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    Hi lmdws - Wow, you have been through so so much. Wow. I do not have your exact experience, but I can kind of understand what you are going through. I was 36 and pregnant when diagnosed with bc (I actually had bc when I was 34 but it was misdiagnosed). I did not have extensive bone mets, but my system was so overtaxed with chemo and the pregnancy that my heart rate was super fast, and I was incredibly hot and dizzy all the time. I didn't even trust myself to walk to the mailbox, and I thought I'd fall in the shower. I had no energy, and I was depressed. I remember thinking, well, this might be my life from now on. After pregnancy, my dizziness subsided, and I started to feel like myself again. I realized, "my body can heal!" That realization was life-changing. I have had my ups and downs, but every time I get down, I think, "I have healed before. I can do it again." You've already made amazing strides, and it sounds like you have beat the odds. I believe in you! Sending positive thoughts your way.