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Bone Mets Thread

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Comments

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited October 2020

    Hi Pamela,

    It's a type of BC. I was originally diagnosed with IDC (infiltrating ductal carcinoma) but have wondered if there are not elements of lobular carcinoma with my cancer. Lobular tends to be a bit sneaky. I know others with more knowledge will chime in but I understand it tends to form in sheets and seems to favour membranes and other odd places in terms of spread. Many of the ladies with ILC have commented on the challenges with diagnosis

  • Katrose
    Katrose Member Posts: 37
    edited October 2020

    Hi Pamela23 & Sadiesservant,

    Lobular carcinoma develops in the lobules of the breast where breast milk is produced/stored. Ductal carcinoma develops in the duct that carries breast milk to your nipple. As Sadiesservant put it, invasive lobular carcinoma is "sneaky and grows in sheets" as opposed to a lump, and is difficult to pick up on mammo & US.

    I was diagnosed with invasive lobular carcinoma in 2009; after having followed faithful with mammo & ultrasound for probably 10 years prior to my diagnosis. On my most recent visit, prior to my diagnosis, I was told that my LT breast had fibrocystic disease and asked if it was normally for only one breast to develop this and the mammo tech said "no, not really." In addition, on that mammo my LT nipple excreted clear fluid onto the gown I was wearing during my mammo, which scared me. At my GYN exam, I told my doctor about this and he asked me to seek the opinion of a breast surgeon. The breast surgeon actually missed my diagnosis the first time and when I came back 3 months later complaining that my LT breast was no different, she did a in-office core biopsy and found my cancer at that time. On MRI, my tumor was 7 cm large. Since cancer takes time to grow, they estimated that this tumor had been growing for approximately 10 years (the entire time I was getting yearly mammos & US. I blame myself too, because my LT breast felt so different than my RT, it was hard and firm, but the professionals kept telling me "all was okay" at every mammo & US appointment, so I believed them. Its funny, they say that trauma doesn't cause cancer, but in my 20's I accidently slammed my LT breast into the corner of my car door, it was so painful that I actually remember checking to see that my nipple was still there, luckily it was. I don't remember anything more about it, but wonder to this day if that had anything to do with the development of cancer in that breast.

    Katrose

  • snow-drop
    snow-drop Member Posts: 563
    edited November 2020

    JoynerL very good reading thanks for sharing.

    RK2020 I think the same way, I started ibrance too soon, despite the second opinion MO suggested hormonal therapy first for a while, that time I just diagnosed stage 4 and I was panicked enough to choose more medications I mean I/L combo over fas alone! Or maybe fancy “targeted therapy” tittle made me fool!

    With I/L almost a year now, none of tumors have shrunk, and there have been bone Mets progression in my spine until 2 months ago that mri finally showed no progression, also no shrinking. I see many of MBC s got some good results with this combo. Another doubt growing when I called to refill Ibrance, the pharmacist asked whether I think ibrance has worked so far!!
    I don’t know what I should expect of these medications. My expectation would be high if I want to see my bones get healed/ tumors get smaller?
    Please share your thoughts 🙏🙏


  • kbl
    kbl Member Posts: 2,980
    edited November 2020

    Hi, Bootsie. BevJen was right, I was away on vacation. I’m back now. My mets are to my stomach, and lobular does go to weird places. I had a missed diagnosis for six years of bone mets, and that has to be the reason it spread to my stomach. I had a colonoscopy in May of 2019, along with the endoscopy that caught my stomach mets. They didn’t find anything in the colonoscopy. I’m sorry you’re experiencing mets in yor colon. I hope you continue not having symptoms. I also had a camera endoscopy to go where a colonoscopy doesn’t reach. I swallowed a tiny camera, and it took pictures on the way out. They didn’t find anything there either.

  • rk2020
    rk2020 Member Posts: 697
    edited November 2020

    IBeatIt - I don’t know what to tell you. We all just hope for the best. Sometimes that means being NEAD, sometimes stable and sometimes that means shrinking tumors. Im glad I was out on Fulvestrant/Ibrance/Zometa as my first line of treatment. I just wished my MO had given my body more time to recover from my femur surgery before introducing the Ibrance. Ibrance 125 mg kicked my butt and stopped my healing process. I finally began healing again when I was put on 75 mg.

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2020

    I had the Zometa infusion almost a month ago. Had the 48 hrs of flu-like symptoms but a few days later when I started chemo, I would get deep bone/muscle/joint pains in different spots everyday. This has been going on for almost a MONTH!! It was more extreme discomfort than pain but a few nights in there were definitely A LOT of pain so much that I was on the couch in the middle of the night for hours. This weekend is one of those times. Do you guys thing this is a bad reaction to Zometa? I know it said side effects can last from days to months but this is literally ruining any daily activities.

    Also what is your favorite pain relief. On mild days, ibuprofen can take it down a few notches. I use Naproxen when it's worse. I've only used hydrocodone once.

  • snow-drop
    snow-drop Member Posts: 563
    edited November 2020

    RK2020, agreed we do just hope for the best, I’m happy for you the combo and I 75 work well for you.

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited November 2020

    Hi everyone, sorry I’ve been gone for so long. I see a lot of you are still here supporting each other , great ! I missed someone asking about my Ferritin and what was going on with it. Well, it continues to rise and it’s now at 843, even afterI was dropped to 75mg. Onc said if it reaches 1000 than we’d need to look at other possibilities and now I see that my iron is going up too.I did test negative for hemochromatosis, so that’s been ruled out. One other strange thing was that my ANC went from 1.2 on 100mg to .78 after one cycle of 75mg.
    I took a month off after the .78 but once I got through the next round it started dropping again. 🙄
    I will let you know what happens next. Weird thing is that my scans were clear! Doing a recheck on 11/12.
    Ok, I’m going to go back to read up some more......I want to see where everyone is at in their journey.

    Prayer and blessings over all of you!

  • maaaki
    maaaki Member Posts: 105
    edited November 2020

    Sadiesservant thank you. My MO actually wants me change to Verzenio from Kisqali after SBRT to vertebra. She says that it is continous and I had treatment delays with Kisqali as well lowered dose. I will see because for me it is true progression I went from single vertebra met into three vertebra mets. Peculiarly my liver is free of mets since resection of solitary met in 2017. For which I am gratefull

  • lulubee
    lulubee Member Posts: 903
    edited November 2020

    Pamela, sorry you're in so much discomfort. Is this a new chemo for you? Every time I've had progression and switched to a new med, I've had a spate of pain flares. I chalk it up to tumor flare (ie pain caused by cancer cells dying).

    I think I get better relief from 3 Advil than from Vicoprofen, personally. Lidocaine patches or CBD balm help also. Hot baths, more water intake, etc.

    Feel better soon!

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2020

    thanks lulubee, I saw my MO this week and she doesn’t think it’s from chemo (I’ve done 5 rounds of Xeloda so far) nor the Zometa. I see a rheumatologist next week and hoping to get answers to all these aches & pains. They are so deep and after a month of pain I become so negative and that’s not me.

  • bootsie7
    bootsie7 Member Posts: 105
    edited November 2020

    BevJen,

    I too research and ask questions. Have to be our own advocates! I do feel it is an individual disease and I keep getting lumped into statistics only.

    I saw my MO today. She said she thinks anastrozole is probably not working

    anymore. (if it ever was?) She wants me to start Falsodex injections. Says cancer mets in colon could cause an obstruction and end with a colostomy! Now that is frightening!

    Wanted me to sign papers and start next week. I am a sleep on it, research kind of girl.

    I thought I was doing pretty good as my scans show stable, but this has me shaky. She says it might not be stable at all.

    I have call to Integrative doctor and my MO at NW.

    Not comfortable feeling knowing I need to change local MO but not found a new one yet.

    Thanks for your input.




  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020

    bootsie...praying its not as bad as it sounds. (((((hugs)))))

  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    Hi all! Im new here my name is Amy... well sort of... I was on BC.org back in 2012 but changed emails so I cant use that account anymore :(

    I had BC stage 3 then in my nodes triple positive I made it, I kicked cancers ass.. I was 34.. Now 8 years later I have just been told I have bone mets to my spine, ribs, chest plate and pelvic bone. Pet scan 10/19 biopsy of pubic ramis 10/26 still awaiting the results. Im now 42. I have started on many supplements and changed my diet 100%. This was a great place of support for me last time and I know it will be again now.

  • cyathea
    cyathea Member Posts: 340
    edited November 2020

    Hi Amy, so sorry you are back here again with progression. Thanks for sharing your story. It gives me strength to hear about the courage of others

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020

    Welcome ABC sorry you have progressed to stage 4 but hope we can be of encouragement to you

  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    Thank you! Are any of you trying to block pathways on top of standard care? Ive been doing some diggin into that while I wait for results.. Trying to stay busy! Oh the anticipation anxiety.. Reading Jane Mclellands book How to starve cancer!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020

    ABC please see the Jane McClellands thread on here :

    https://community.breastcancer.org/forum/8/topics/870956?page=27



  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    Oh Thank you so much for that link!!

  • bootsie7
    bootsie7 Member Posts: 105
    edited November 2020

    thank you NicoleRod.....:)

  • bootsie7
    bootsie7 Member Posts: 105
    edited November 2020

    Hi ABC4978...very sorry stage 4 found you. I am just starting to read Jane's book too. She is starting an online course to help with clarifying all the info.

  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    bootsie7 I think I'm gonna sign up for it, couldn't hurt!

  • kjones13
    kjones13 Member Posts: 662
    edited November 2020

    ABC—welcome to stage 4. Sorry you are here. We are the same age! I was dx in 2012 at 34. Stage 4 from get go. Just wanted to say hi!

  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    kjones13 how are you doing now? Are you receiving any treatments? Do you have children? I have 2.. they are 12 and 15. Their dad walked out 1.5 years ago a d we haven't seen him since. This latest diagnosis has been a hard hit for us.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020

    ABC...oh my gosh that is so horrible! hope you will use us as a shoulder and friends!


    KJ ...sorry for your diagnosis ..but welcome :)

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited November 2020

    Amy, I'm so sorry to hear of your progression!

  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    I'm having a hard night.. Its been since October 12th when they told me I had lytic osseous lesions.. and still no pathology back.. Tomorrow is one month and no treatment plan in sight!!

    Timeline

    10/12 catscan for pain.. showed lesions

    10/19 pet scan.. showed lots and lots of lesions

    10/26 pubic ramis bone biopsy..

    11/11 still waiting....

    With my original DX I lived in Michigan.. they moved so fast! Within 2 weeks I was on treatment. I'm now in florida and I cant get any answers to save my life (pun intened) When I call for updates they get upset and tell me not to call... the doc will call me! All they have done for me is send me home with a ton of xanax and percocet!

    I'm doing alot to keep me sain.. healthy foods.. supplements ect.. but I'm going down the rabbit hole fast!

    I have an appt with my oncologist Monday praying the results are in! I've also changed my insurance to a different plan so I can possibly get in to Moffitt in Tampa! That's a huge waiting game too... Been 2 weeks GP still hasn't got the referral done. I've called daily to speak with Tammy.. the one in charge of doing it! Finally today I had the "talk" with tammy.. the let me level with you talk!

    I said Tammy I'm a veteran to Cancer! This is now stage 4.. I am young 42 single mom.. what would you doing if it was you or a family member? I'm not asking for a referral for allergies... this is Cancer!! I'm working on limited time here!! CAN YOU PLEASE WRITE THE DAMN REFERRAL!!!!

    As Tammy assured me the system was having issues and she would get it done asap.. I felt Like going down there and sitting next to her till she got it done! I'll call back soon to check on her referral writing status.. I've called every day... She knows who I am now! Maybe she will get it done just so I will stop calling!

    I've also made an additional appt with my GP for next week.. last time I spoke with him I explained my need for the referral he assured me he would do anything I needed.. so if tammy doesnt have it done by the 18th.. I'll ask him again direct... Grrrrr....

    I'm with florida cancer specialist now but need the referral for a second opinion and most likely a higher quality of care at Moffitt!

    Now we have a hurricane over us in florida and everything is shut down till Friday.. so I'm in the dark till Monday 😑

    as I sit and stuff greens down my throat I am legit loosing my mind!

    Thanks for the vent 😊


  • iwrite
    iwrite Member Posts: 746
    edited November 2020

    ABC- Welcome to the club no one wants to join. You’ll find great information and nice people here! Ive been living with this for five years and feel good. You are right to push for the referrals! Being your own advocate is the only way to do this. It gives you back the power the diagnosis takes away. Once you have a treatment plan things even out. (I was a mental mess the first few months. The Onc prescribed something so I could sleep...first time I needed that. It helped and I don’t need it anymore. Ask for it if you need it!)


    Many of us use diet and exercise to remain healthy. Lytic lesions cause fragile bone so easy on exercise until they address that issue. Many of us take Xgeva or other bone strengtheners. They can help!

    I’ve heard good things about Moffitt! Many of us go to good cancer centers far from home and have a local oncologist as a consultant or for lunch cal treatments as ordered by our main oncology team. Mayo is another option if they are relatively close. I drive to Chicago to see my main oncologist. (2.5 hours away) The peace of mind is worth it!!

    Hang in there! PM any of us with questions!


    You might want to read about Joe Tippens and what he has used to stop his cancer from growing. I do this in addition to my oncology meds and some supplements. Google him and read the story. The protocol he follows has helped with different types of cancers.

    Kathryn

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited November 2020

    Amy (ABC) just popping in here to say I'm so sorry about the delays in getting answers, referrals, etc. It has to be nerve wracking for you. So, they're getting impatient with you calling and asking??? Good! Maybe that will help expedite your referrals and answers.

    Come here and vent. It's a safe place and even if all we can say is, "That sucks", you know you have friends and understanding here.

  • ABC4978
    ABC4978 Member Posts: 23
    edited November 2020

    Iwrite and sunshine99

    After a good night's sleep from Ambien I feel a little better! One day at a time one foot in front of the other..

    Still no results on my records today.. so I decided screw it till Monday!! Christmas tree is going up and I will enjoy the twinkle of the tree🥰❤

    Yeah they are getting shitty with me but I figure they will know me by name and face soon and know I dont play! Still irks me to high heaven..

    Thanks for the ear! Very much appreciated..

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