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Bone Mets Thread

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316

    Bruising can certainly cause a hematoma. Beyond that, I can’t say that I have ever heard of a hematoma as a symptom of a bone met, but as a retired teacher, I have neither the education nor professional standing to even guess. Good luck tomorrow.

  • shanagirl
    shanagirl Member Posts: 461
    edited July 3

    @sondraf

    From what I do know a hematoma is bruising. I’ve never heard of bone met causing this. I’ve always gotten bruises durng my life without realizing. How I got them or some times I didn’t know what caused them or sometimes when my dogs would play a little rough it would happen.. but I always bruised easily anyway. I hope its nothing.

    I’m in your pocket while you wait for another scan.

  • jen1
    jen1 Member Posts: 68

    Shanagirl/ Thank you so much for your kind comments.

    Hi Ladies /I am going to try and be on these boards more. When I am off I get more depressed. I feel so much better when I am here. I am feeling so alone. I am missing my old self so much. I am trying to remain positive. So far everything is going pretty well with my treatment. I think I am still grieving this diagnosis. I am now perseverating on all the possible fractures I can get; I don't share anything with my family because I am the one everyone comes to for encouragement. I think I just need to vent.

    Now more questions ladies lol. 1/ Did any of you have osteonecrosis of the jaw. What were your initial symptoms? How many infusions of the Zometa did you have before you discovered that you had it?

    2/ What kind of exercises can we do with bone mets?

    3/ At what point did some of you get radiation for pain. I am starting to have more pain in my hip and but. So far rest and Tylenol seem to help.

    4/Also are any of you still working. I also think I am depressed because before the mets I was thinking about subbing. I am a retired teacher. I do not want to sit around feeling sorry for myself.

  • gailmary
    gailmary Member Posts: 543

    Jen1 I can give you my answers.

    1. No ONJ but I thought so for a while and freaked out.
    2. That would depend on where they are and how big I bet. Best to adk your own doctor.
    3. I needed it for my one and only met. I was practically paralyzed with pain. Waited too long. Dum de dum dum .I hope I learned.
    4. I think the depression is something you can't avoid . Maybe some are lucky and don't have it bad but I think the lack of estrogen typically leads to depression. Find a new hobby. I quilt lots and walk if the weather is good.

    Hope this helps.

    Gailmary

  • tougholdcrow
    tougholdcrow Member Posts: 204

    Jen1 Yes, ask your doctor about exercise. Mine has ok'd reformer pilates, for example, even though I somehow broke my rib. It's now healing. I suspect that exercise—even just walking around—is good for depression. Endorphins. Fresh air. All good for the soul.

  • divinemrsm
    divinemrsm Member Posts: 6,621

    jen, you’re still new to the mbc diagnosis and no doubt still adjusting. Be gentle with yourself. It sounds like you are currently stable and tolerating treatment fairly well. If this is the case, consider making a few plans to do some fun things. Try planning something for next week, in two weeks and a month from now. It gives you something to look forward to and gives your mind a break from thinking about you know what. Things I like to do are go see a good movie, visit a botanical garden, tour historical homes. I like to go to a concert once a year. I get a pass every summer for the local pool and go a couple times a week. I still enjoy down time at home but can get in a rut staying in too much! So I “nudge” myself to mosey out of the house and do things here and there. Nothing too strenuous and I’m always glad I did.

    Plans can also include extended day trips, overnight trips or a longer vacation. Ask yourself what do you really want to do and move in that direction. New experiences give you new memories to savor. I also do a home improvement usually once a year; it can be as simple as painting and rearranging furniture. Freshening up part your home can really lift the spirits! Last month I decluttered the room where I store stuff and boy did it feel good to get rid of some junk and tidy the space up. Our front porch needs completely replaced, ca-ching! ($$$); we’ve hired a home exterior company and I’m looking forward to having it done next month.

    Exercise: I l walk. I’ve also done line dancing, water aerobics and tai chi.

    Zometa: I had an infusion every three months for over ten years, no jaw trouble. I stopped last year when I had surgery. I have to get a clearance from my dentist before I start back up.

    Radiation: does you onc recommend it? It’s good that rest and Tylenol help you.

  • jen1
    jen1 Member Posts: 68

    gailmary/Thank you so much/tougholdcrowthank youdivinemrsm/Thank you so much for your kind response. Thank you all so much.

  • sf-cakes
    sf-cakes Member Posts: 621

    Jen1, I agree with the wonderful divinemrsm, be gentle and kind with yourself. It's such a good reminder for all of us, too.

    I've not had ONJ, I do floss/brush 3x daily and get teeth cleanings every six months.

    The exercises that I've been told to NOT do are things like sit-ups and extreme bending from the waist - I have a met at T9 vertebrae that fractured and I needed surgery (which went very well, but was naturally terrified at the idea of a spine operation!) I was not yet on Zometa when it fractured, and initially we thought it would heal on its own. I'd had radiation there in the past, and likely the combination of the cancer and the radiation effectively stopped the healing ability of that bone. I wish I'd started the zometa right away, but live and learn, right?

    I worked for three years before just recently retiring, largely due to fatigue from meds and overall grief from losing my husband. My days have a loose schedule now that is peaceful, and I definitely try to have something "special" each month to look forward to. This month I'll be attending the symphony to hear John Legend sing with them! I will dress up and wear my long-haired wig for the occasion, a regular old night on the town, lol.

    This diagnosis is hard emotionally, and some days I still struggle with it. I try to be grateful as much as possible, and also allow myself to lay down when I need to, eat scones, buy new books and plants, etc.

  • threetree
    threetree Member Posts: 1,833

    Divine - Re the decluttering, I keep meaning to tell you how much I liked your comment way up the line here, that you call it "editing". I mentioned earlier that I am doing some serious decluttering/downsizing, and you noted your "editing". I try to see if I can get a better perspective for myself using that term, rather than "de-cluttering". I'm one who has a real hard time parting with things - emotional attachment to "things" and I can't let go. I actually hired someone (professional organizer) to help me and she comes about once a week and we work for a couple of hours together. Due to my cancer troubles I can't do too much on my own. She does the heavy lifting and I pretty much just sit and go through papers, to recycle or shred, and then yea or nay items she comes across. It's a slow process, but we are making progress.

  • gailmary
    gailmary Member Posts: 543

    It's my turn for scans tomorrow. Hoping I'm good for another 6 months. No new pains just the same Ole complaints of insomnia and profuse sweating. I had 1 hot flash 40 yrs ago after hysterectomy. After that it was only warm flushes. Now I perspire quite easily and everything gets soaked in minutes if I try to work outside. Of course the higher the dew point the worse it is. But even outside in winter I sweat like a running faucet. Yuk. Of course it is from lack of estrogen. Any suggestions?

  • threetree
    threetree Member Posts: 1,833

    Gailmary - Wishing you all the best of luck with your scans tomorrow! Sorry I have no suggestions for the hot flashes. I've never really had them, even during menopause. Just the occasional "warm spells". I have heard that 2 Tbsps of flax seed every day can help, and I do take that, but not related to hot flashes whatsoever. Maybe it helps?

  • sondraf
    sondraf Member Posts: 1,701

    I echo the others about finding ways to keep your days full. Some quilt, some read, some continue working. I went on medical leave start of this year to get things under control and I may just go back to work early in September (work from home, gradual return to full hours) because Im going absolutely nuts right now. But Im effectively stuck in the house and have been since March, I cant walk anywhere and the lack of engagement with anything, even my god awful job I hated, is just too much for me to deal with. I need my brain engaged and to not feel like this lump of medical meat that they just stick various drugs into during the week. Ive got weekly cycles of Taxol until November and right now that feels ages away and I dont know how Ill manage my sanity to that point. So @jen1 if you want to go back to subbing, youve got the energy and desire, I say go for it. Stable is a lovely place to be, make the most of it!

    Scan results tomorrow - MO is 'cautiously optimistic' based on my tumor markers, Im downright pessimistic based on the aching in my right pelvis and whatever the hell is going on with my sternum. Every week there is a new fresh hell awaiting me it feels like, lets see what tomorrow brings. Im getting very very nervous that our trip home will have to be delayed/cancelled, but hoping that some shots of chemo will start to calm things down again and move them in the right direction.

  • jen1
    jen1 Member Posts: 68


    sf-cakes     /Thank you so much/radiation_cinderella/Thank you dear/
    sondraf/ Thank you so much/ Ladies thank you all for all of your answers. Thank you so much for taking the time. It really helps. I hope I did not miss anyone.

  • divinemrsm
    divinemrsm Member Posts: 6,621

    threetree, what a great idea to enlist the aid of a professional organizer to help with “editing” your possessions. Has she given you any helpful tips? Like you, I found getting it done a little bit at a time helped me. I used to think I needed hours and hours of uninterrupted time to tackle such a big project, but have learned to split large projects up into smaller, more manageable tasks so I wasn’t overwhelmed. We use the expression “chunk it down”. I use this approach for many things, not just decluttering.

  • tougholdcrow
    tougholdcrow Member Posts: 204

    threetree, I have also been going through all of my tons of old papers, trying to decide what to keep and what to discard. There's a story about Jacqueline Kennedy Onassis, who died of non-Hodgkins lymphoma, sitting with a friend and burning all her letters at the end. Maybe I will be like Jacky O.

  • sondraf
    sondraf Member Posts: 1,701

    Well, scan showed it was indeed a met on my breastbone that just took off in the month between the biopsy and starting treatment. From April if you look really really close you can see just the start of it, and then the July scan well, yeah that was hard to actually look at. It doesnt hurt it just feels weird.

    Overall my scan was technically worse compared to April but that month between is when no one is sure about, though with everything else moving in the right direction, MO and I agreed it probably got worse before it started to get better. Going to do another Taxol cycle and I will scan immediately when I return to see where we are at. My pain is certainly decreasing in the hip but this breastbone thing just came out of nowhere. Ugh.

  • fighter00
    fighter00 Member Posts: 41

    Hello beautiful friends. I finally then with the radiation I only have some tiredness and doctor thinks everything went well, I’ll have MRI on August for confirmation.
    My insurance denied Enhertu as first line IV chemotherapy, onc decide to put me on GemCarbo, anyone had or have this combo? Side effects?? Positive stories??? Thanks 🙏

    Sending you big hugs 🤗

  • sunshine99
    sunshine99 Member Posts: 2,723

    Sondra, interesting that you would mention the breastbone. I’m having new pain there. Not bad, but I notice it when I touch it. (Then, don’t touch it!) I also feel a bit SOB after eating. Again, not bad, but it’s just weird. Will keep an eye on it and mention it to my MO at my next appointment.

    I’m going to try to insert a link to a movie with Rock Hudson as a hypochondriac. It cracks me up. If I can’t I’ll describe the scene in another post.

    Well it’s not working, so here’s how the scene goes: Rock Hudson goes to his doctor about this pain in his chest. He says, “It hurts like the dickens when I press (he grimaces) it.” Doctor replies, “Then don’t press it!”

    Anyway, it’s a funny movie and co-stars Doris Day. I think it came out in 1964. The movie is called, “Send Me No Flowers.” If you like old movies, it’s worth watching.

    I hope you get some answers. New pains are such a pain (sorry for the pun) and every new one is a new worry.

    (((hugs)))

    Carol

  • divinemrsm
    divinemrsm Member Posts: 6,621

    gigil, I love your approach and have a similar one. When I feel down, I give myself time for those emotions, but I also try to maintain a steady diet of hopefulness. Like you, I avoid heavy subjects in the evening. There’s lots of good tv to be found. My grandkids recently got me started watching the show “Community” and it is a hoot! I also like serial dramas and different documentaries on streaming platforms. Some I watch with dh, some I watch on my own. I read a lot, too. There’s nothing like getting into a great book. I try to savor the good moments. Lately we’ve been enjoying all the produce from dh’s garden. Cabbage rolls, haluski, tomato sandwiches, green beans, etc. My body gets sore and tired much quicker this year than last, so I pace myself. If one day is busy, I try to take it easy the next day. I guess it’s about adapting.

  • gailmary
    gailmary Member Posts: 543

    Sunshine your "don't press on it" story reminds me of this story.

    After my lumpectomy I complained to my sister that my tit looked deformed now and she replied "then don't look at it". Sure why didn't I think of that?

    Surgery was 2008. It never bothered dh. But after all these years it is bothering me. Seems more deformed maybe with a bit of weight gain. My SIL recently had implants after her mastectomy. She said I'd likely only need a little adjustment done with my own tissue from liposuction. We'll, I'm about to find out. I made an appointment with breast surgeon. I don't recall ever being offered reconstruction.

  • moderators
    moderators Posts: 8,740

    In answer to @fighter00 — GemCarbo is the combination of of Gemzar (gemcitabine) plus Carboplatin (paraplatin). As with most chemotherapy, both come with the typical list of chemo pharmacology side effects (ie, fatigue, nausea, low wbc), but we've had positive comments from other members that this regimen was actually more tolerable than they had expected. Please see the below links for more info.

    https://www.breastcancer.org/treatment/druglist/gemzar https://www.breastcancer.org/treatment/druglist/carboplatin

    Wishing you a smooth experience with this treatment.

  • sondraf
    sondraf Member Posts: 1,701

    I had to watch Alien last weekend in honor of my chestbursting met. The CT scan like I mentioned, its downright frightening. It seems to have stopped growing and doesnt hurt so I guess we will see what we will see. @sunshine99 I also had some strange shortness of breath but that seems to have passed - I do get some pain in the left (non cancer) breast so it must be pressing on a nerve. But its a huge knock to self confidence in taking a shower with a messed up leg, this mess on my chest and no hair. Surely nothing else can go wrong!

    I love a Doris Day and Rock Hudson flick to cheer me up, and watched sooooo many over lockdown. I love the ones he did with Douglas Sirk and the future Mrs Angela Channing like All that Heaven Allows, and then the one where he helps her cause shes blind. Its just all so vibrant the colors. Ive also been watching 70s series like Columbo - its so brown! BUt its also very comforting and non stressful.

  • tougholdcrow
    tougholdcrow Member Posts: 204

    @sondraf It's funny how the old horror movies are taking on new meaning! Wishing you more old romances.

  • sunshine99
    sunshine99 Member Posts: 2,723

    sondra, I love Columbo! I quoted him in one of my blogs. I referred to his “one more thing” that he used so often. I also used a line from “My Cousin Vinny” where he asks, “Is there any more sh!t we can pile onto this?

    That blog post was actually titled, “Columbo and Vinny.” It felt appropriate.

    Carol

  • irishlove
    irishlove Member Posts: 598

    @sondraf That's sure a lot going on in your body, but if the beast stopped growing, sounds like your meds are doing the trick. Maybe next scan will show a regression! My hair is thinning everywhere. None on my arms, legs, underarms and my head is showing a great deal of thinning. So I had my hair chopped off to a pixie. Haven't had anything but long hair many years and would cut it myself. I hate this pixie cut. Look like Beavis or is it Butthead. I spike it up on purpose just for a laugh. Hopefully yours will grow back soon and mine will do something other than making me look silly. You are Always in my thoughts and prayers (if you accept them).

    Loved Doris Day and Cary Grant in that movie about finally getting married and he's the one that breaks out in hives. It's hilarious!

  • going2beatthis
    going2beatthis Member Posts: 210

    Thanks for the "cares" and "like".

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