Bone Mets Thread

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  • JACK5IE
    JACK5IE Member Posts: 760
    edited September 2019

    Sadiesservant...a bone scan did not pick up my sacral tumor. I was walking around in a lot of pain thinking it was just a bad case of sciatica but happy it wasn't the return of cancer. Two months later the MRI found it. My world collapsed.

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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2019

    All- Please check out this Thread ASAP

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

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  • S3K5
    S3K5 Member Posts: 606
    edited September 2019

    candy-678 , thanks for providing us the link. Will be definitely praying for Lita and Sunset.

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  • S3K5
    S3K5 Member Posts: 606
    edited September 2019

    For all those who are taking Neulasta or Nupogen, the nurses at my doctor's office suggested that I take Claritin before one day, on the day of and one day after getting these growth factor shots. I have been doing this since five months and it seems like the bone pain is a lot less when I take Claritin. I don't know if this works for everyone, but there are a few on this board who have mentioned about Claritin along with Neulasta. Just a suggestion.

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  • Iwrite
    Iwrite Member Posts: 870
    edited September 2019

    Thanks for the ILC information Shetland! Always trying to discover good options. Hope you are feeling good today!

    Jack5ie - yeah...scans that don't find what's there. 🤬. Hope you have effective treatments taking care of that met. I'm scheduled for another bone scan on the 25th. Can't wait.


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  • Daniel86
    Daniel86 Member Posts: 271
    edited September 2019

    Hey everyone

    Has anyone ever heard of/used Scrambler therapy for pain from bone mets? It's covered in a couple of hospitals in our area and we were thinking of trying it out for my wife as her back and hip pain has been increasing in the past few months.

    https://www.healio.com/hematology-oncology/breast-cancer/news/online/%7B39fb0977-4c06-4d72-8c04-841b6e172bba%7D/mayo-clinic-researchers-test-scrambler-therapy-for-pain

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  • LoriCA
    LoriCA Member Posts: 923
    edited September 2019

    A woman in my metastatic support group did the Calmare scrambler therapy for her pain from bone mets last year. She was early into the treatment when she told us about it, but she seemed to think it was helping and recommended it to us. Everything I've read about it talks only about using it for neuropathy pain, but it couldn't hurt to have a consult and see what they say about bone mets. If your insurance covers it, you've got nothing to lose from giving it a try.

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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2019

    Question for the group---

    I have been on Xgeva since bone met diagnosis. For the first year, I had monthly injection. After year 1 my MO changed it to every 3 month dosing. Now 2 years into diagnosis my MO said at today's appt she wants to change back to monthly dosing. I am on Lupron and an AI and she said I need the bisphosphonate coverage with being on both hormonal agents. I have the same MO, not someone new. Why the change now??? Also, I told her I am having quite a bit of spinal bone pain. And my TM's have slowly risen over the last 3 months.

    Has anyone went back on monthly Xgeva after being on a 3 month protocol???

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2019

    I just switched back to a six week schedule from a three month schedule. I did it because I went from NEAD to having a met become active again. I do six weeks instead of monthly because I visit the center every three weeks - so I am getting the Xgeva every other visit. To do it every four weeks would mean an extra trip which I do not want. MO suggested 9 weeks instead of 12 but I wanted to do the six for a while.

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  • Frisky
    Frisky Member Posts: 1,718
    edited September 2019

    candy, my MO has changed the schedule a number of times without explanation....I’m now on a 3 months schedule which is fine with me because A im not in any particular pain, and B I don’t want to end up with a broken jaw or femur....

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  • JACK5IE
    JACK5IE Member Posts: 760
    edited September 2019

    candy-678...I have been getting monthly Xgeva shots since I started which is now about 18 months (also Faslodex and Ibrance). My markers are also slowly rising but still in the normal range. I'm hoping it's just from inflammation since I have a lot that from the tumor area and elsewhere. My scans were good in July but the worry is always there.

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  • JACK5IE
    JACK5IE Member Posts: 760
    edited September 2019

    lwrite...fingers crossed for your upcoming scan!

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  • minnuli
    minnuli Member Posts: 4
    edited September 2019

    Hi all!

    New member here. I got Dx three weeks ago: stage IV de novo, mets to the bones at least. At the age of 31 and as a new mother to 5 month old baby boy my world just collapsed receiving these news. Thanks to this community and this bone mets thread I'm much more peaceful now - I know that life doesn't end at this Dx.

    My biopsy showed that the cancer is Er+/Pr- and Her2+ and gradus 2. I have one huge met in sternum and one small possible met in spine. There were also suspicious spot in liver and lungs, I will be getting liver ultrasound next week to confirm that. My onc wasn't too concerned about the lungs part though...

    I already received my first treatment on Monday as well. I got Docetaxel and Herceptin+Perjeta and the Neulasta shot on Tuesday. I will soon start Xgeva too. Does this sound proper regimen to start? I have read that many get some hormonal therapy for the Er+ part as well but my onc just said that will come after the six rounds of chemo (Docetaxel).

    So far I'm all good - a little bit tired but nothing else. Of course I'm hoping this will last but at the same time I know it has been only little over 50 hours from my iv so things can change at any point. I think I will enjoy this while it lasts!


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  • JACK5IE
    JACK5IE Member Posts: 760
    edited September 2019

    Hi minnuli. I hate that you are joining us here but I'm glad you found us and that reading some posts give you a little bit of peace of mind. I can't comment on any of the meds you are on because I am on a different regimen (with the exception of Xgeva). But I'm sure others will be along to help you. Hang in there. Hugs to you!

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited September 2019

    Minnuli, it sounds as though your team wants to knock the cancer back and then more to hormonal therapy + herceptin and perjeta. Is Ibrance approved in Finland’s yet. Hoping Lauren will chime in soon as I believe she is on this combo

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2019

    minnuli - sorry you're here but "welcome" to the forum where you can learn and ease your mind. I am HER2+ as well - yes standard protocol is what you are getting - chemo in the form of a taxane and Herceptin + Perjeta. I also did not begin hormone therapy until after chemo (Taxol) was completed. I was on taxol plus H&P for six months and now continue with just H&P and hormone therapy. Plus Xgeva.

    Herceptin is a very effective drug with few side effects. We're lucky to have it (if we have to be in this boat at all).

    My time on chemo was not so bad either. I did experience fatigue at times but I got through it fairly well and no neuropathy. I did ice my feet and hands to avoid it and to try to save my nails (did have nail issues toward the end of my chemo). Wishing as easy time as possible for you too!

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  • minnuli
    minnuli Member Posts: 4
    edited September 2019

    Thank you for the quick replies and the warm welcome!

    Ibrance is approved in Finland too and that was one suggestion after chemo. I think I will know more when we have the chance to see how the first line of treatment is working but now I can ease my mind that I don't miss anything from my regimen at this point.

    Funny story: I had read here about that icing on your nails during chemo. I went and bought those freezer bags you can use to treat sport traumas etc. I packed all those for the first chemo to a small cold case and took the case with me to the hospital. Well it turned out that the hospital has special cold gloves and shoes for patients to use during treatment so you don't need to bring your own. My nurse laughed that at least I was well prepared as I showed her my cold case. :D I also got a mug full of ice chips to suck during the chemo. It is supposed to help minimize side effects to your mouth.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2019

    Hugs to you minnuli. We're all here for you, and these women and men are fabulous .

    Are you pleased with your treatment team?

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  • Iwrite
    Iwrite Member Posts: 870
    edited September 2019

    Minnuli,

    Welcome to the club no one wants to join! So sorry that you are joining us, but you'll find lots of great information and encouragement here. I've been here four years and new treatments are coming out all the time. We are all thinking of you as you start your treatments. All questions are welcome! To help you out with names and faces here I am with my grandchildren this summer. Sending good wishes! Kathryn

    image

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited September 2019

    minnuli, that sucks that you’re so young dealing with bc mets. I hope you find this site informative, insightful and inspiring. I know its been all that to me.

    Iwrite, fabulous photo!!!!!


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  • Lillymillie
    Lillymillie Member Posts: 192
    edited September 2019

    That's a lovely picture Iwrite. Minnuli it is such a shock you are diagnosed so young. I was 36 with a little baby too. I'm 3.5 years into stage 4 Mets. On the whole I've done really well and had wonderful quality life even though chemos.

    My new issue is low red blood cells. I'm changing treatment to taxotere after a long run on X. A couple of bone mets appeared. Was about to start tomorrow but bloods show red cells dipped way down. I had sore back at weekend and took loads of Co codimal which helped but 4 blood tests this week and red is still low. II'm sitting at 80 when I need to be 100 for chemo. Not sure what I can do, any suggestions? Worried about bone marrow

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2019

    Gorgeous Iwrite! You and your family! I see the resemblance too :) What a lovely sweet bunch! Thank you so much for sharing!

    I have a question for the beehive...I had another MRI of my cervical spine...last one was in January. My MO told me that it shows nothing better nothing worse. Of course I read the scan report with a fine-toothed comb. Sometimes I wonder if my MO is a little relaxed about things. Not that being relaxed is bad! He's been in this field for over 30 years. So I trust him!

    But, can anyone tell what this jibberjabber means? Here are the results:

    There is again demonstration of multiple areas of abnormal signal in the bodies from C5 through T3 vertebra. These signal are hypointense on T1 and T2 sequences except for lesion seen posterior part of body of C5, anterior inferior part of body of C7 and
    anterior superior part of body of T3 vertebra which is hyperintense on T2 sequence. There are also T1 hyperintense lesion seen in the spinous processes of C4, C5, C6 and T2 vertebrae. There has been interval increase in extent of abnormal signal in the
    C5 and T2 vertebral bodies. The remaining abnormal signal are stable.
    No cortical erosion or epidural soft tissue mass is seen.
    The cervical spinal cord demonstrates normal caliber and signal. No cord compression is seen.
    After contrast administration, there are patchy areas of enhancement seen in bodies of C5, C7, T2 and T3 vertebrae.

    Thank you all!! HUGS!!!!!!!!!!!!!

    LoveFromPhilly

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited September 2019

    Hi All,

    Philly, can’t help with your question but have one of my own. Long story short, I’ve been having some issues of numbness and tingling in my right arm. MRI ordered to check brachial plexus - normal - yeah! But the problem persisted so my GP ordered a CT scan of my cervical spine. Sigh.... mets in my c-spine AND in the base of my skull. Seriously stressed about that list bit as Dr. Google does not paint a pretty picture (I know, I know).

    So.... looking for comments from those that have mets at the skull base. I know some have skull mets but it seems to be a bit different. Trying to wrap my head (no pun intended) around all this.

    Thanks!

    Pat.

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  • gailmary
    gailmary Member Posts: 332
    edited September 2019

    Gee Pat, good luck. I had numbness and tingling once and it wad just a bulging disk.


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  • Frisky
    Frisky Member Posts: 1,718
    edited September 2019

    https://www.canceractive.com/article/chemotherapy-reduces%20magnesium%20levels

    Hi all,

    I have personally benefited from increasing and taking the magnesium throughout the day...now there's this study that confirms how we cancer patients go through life losing the magnesium every time we go to pee...

    It does miraculously reduce aches and pains, including neuropathy...I use magnesium citrate....I currently take it twice, 400mg in the morning with a multivitamin and multi mineral, and 400 at night with my calcium, vitamin D3 and mk7 protocol..

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  • snooky1954
    snooky1954 Member Posts: 883
    edited September 2019

    Brians not working good Frisky. What am I missing? You were talking about Magnesium supplements and then went on to say, ..I use potassium citrate....did you mean to say Magnesium citrate? Sorry to question you just having a rough night.

    Been wondering do you take your supplements with food or without?

    Thanks

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2019

    Candy, my understanding is Xgeva is a monoclonal antibody not a bisphosphonate. I was first on the bisphosphonate Zometa and my dentist about had a stroke over it even though I have no dental issues. Maybe that's part of the reason my MO switched me to Xgeva since it doesn't have the same half life should dental work be needed albeit Xgeva still has it's own risk for ONJ. I've just been switched from monthly to quarterly injections.

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  • Frisky
    Frisky Member Posts: 1,718
    edited September 2019

    sorry Snooky, yes it's Magnesium Citrate and yes taken with oods for better absorption. I edited the post for the sake of safety. Potassium is another story...

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited September 2019

    Philly, I can't help much at all. I do know that hyperintense lesions are not always cancer - could be from aging, injury, etc... interval increase is the thing I zoned in on. Sounds like mostly stable with a little more uptake in a couple places

    It’s funny - my MO often totally disregards half of the things that are described on the report. He reminds me that whoever reads the scan must indicate every possible thing that can be seen, and sometimes it’s hard to tell if it’s cancer or mot

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2019

    My MO Is the same Jen, she seems to disregard most of the report. I'll question this or that and what does it mean? She'll tell me, "stable" is what you're looking for and when you see that, you're fine."

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