Bone Mets Thread
Comments
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Suems,
Sorry to hear about your sudden turn for the worse - a reminder to all of us that bone mets are not a walk in the park and all cancer is sneaky and can get out of control very quickly.
From the high calcium levels it does look like it's the bone mets that are flaring up, and low blood counts would suggest bone marrow involvement - the scans should be able to give you a definitive read. There are a couple of ladies on here (grifff, delvzy and Chrissy50, I think) that have bone marrow involvement, and there doesn't appear to be a "standard" treatment. I think if you responded to taxol it's very reasonable for you to go back on it (or another taxol-based product, like abraxane which should also work pretty well on the liver) until things get back under control.
There are other options, both chemo (like for example Halaven) or hormonal (if your signature is complete, it appears that you haven't yet had faslodex, which is a pretty powerful antihormonal). For the hormonal treatments to be an option, it would be good to know if your mets are still HR+, and a biopsy would be the only way to determine that. I'm not sure from your message if Ibrance is not available in NZ or just not covered by the government, but you would have it covered by your private insurance. If so, Ibrance/Faslodex would be a good combo (maybe for later after some more aggressive chemo upfront). Ibrance is pretty hard on platelets and neutrophils, so it might not be recommended for marrow involvement, but I'm not sure about that.
Bone marrow involvement is different from just bone mets because we need the marrow to produce a number of important blood components, like red blood cells, platelets, neutrophils and the like, so there's a more immediate threat once the marrow is involved. It also usually indicates a more "advanced" disease, but it is by no means an automatic death sentence. Through my sister who is a physician, I know of a lady who came in in pretty bad shape, with extensive marrow involvement and got successfully treated. She's still alive and doing well seven years later. There's hope. Grab tight onto it and hold on.
While your doctors figure out your next treatment, do whatever you need to do to cope. Cry and scream if you need to for as long as you have the urge to, then go on an online shopping spree, call your best friends and ask to be entertained, eat all the ice cream, watch trashy shows (or elevated, cultural shows if that's what you like), play candyland on your phone or do anything you need to keep you sane and distracted until you have a new plan in place. It will get easier after that, but the next few weeks are going to be tough. Many hugs, and best of luck!
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Leapfrog and piggy99,
Thanks for your replies. When I was diagnosed as stage 4, I was told that I was "terminal" as it was "incurable", "Chemo and radiation wouldn't save me", and "the focus is now on control, not a cure". Pretty brutal, delivered badly, and put me in shock for about 6 months. Three and a half years later, I am still here, so maybe terminal is a long-term thing? I agree it's a pretty bad word to use.
At the beginning of this saga I went through 3 different hormonals in quick succession with no result, so I am pretty sure that the Hormone positive result was either wrong, or has changed. If so, Ibrance and/or Faslodex will not work, even if I get my insurance company to import it for me. Maybe I can get them to re-check if they do the biopsy.
I'll have to keep my brain active for the next couple of weeks, but I'm hoping that if the CT shows something unexpected, they may start treatment before I see the MO. The team of Oncologists have weekly meetings, where they decide treatment plans etc, so I may not have to wait 2 weeks.
I started a jigsaw puzzle, but it's hard work with dizzy spells etc. Ho, hum, it's off to bed I go (and it's 3pm here). Thanks for your thoughts and suggestions, they are welcomed more than you can know.
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Update - I'm heading for a CT scan this afternoon. These are booked in priority order, and I wasn't expecting this until next week, so getting in this fast means that the Oncs are seriously worried. EEK! I suppose it's good that they're onto it pretty fast. My DH is driving me down there - only 20 mins of rural roads, but it's through a major storm (120Km/h wind gusts) and my ongoing dizziness means I'm struggling to walk in a straight line, let alone drive through a storm.
Wish me luck!
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suems - Hang in there! We are having really strong winds here too (but I am staying put in the house)! Hugs and hope for great results OOOO. janky
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Sue, good luck with your scans and the drive through the storm. Sorry the doctors were so insensitive giving you the news - I think they sometimes forget that patients are people, people in a very vulnerable stage of their life, and that what they say makes a lot of difference in those people's lives. The breast surgeon who called to let me know they had found bone mets did tell me that the plan had changed and that there would be no surgery and chemo because stage IV is not curable. He explained that the new treatment plan will focus on keeping me alive and well for as long as possible by starting with the most tolerable treatments first and he also mentioned that they have patients who have been stage IV 5, 10, 20 years and are still alive. There was sobering reality, but also some hope. The MO was even more positive, and acted like he believed I would be around for a long time (and I have multiple bone mets). He talked about new treatments coming up all the time, about the chance that MBC could soon be managed like a chronic disease, about things like getting bone density scans every two years to make sure I didn't get osteoporosis from treatment, all these things that made me feel that I might still have a life worth living for years to come. And nobody mentioned "terminal". I'm sure they would when the time was right, but the time is definitely not right when someone has just been diagnosed, before even attempting any treatments. I owe the quality of these past four months of my life to my MO's attitude as much as to his treatment recommendations.
Regarding the hormonals, your cancer can still be ER positive even though the hormonal therapies you have tried have failed you.
In ER positive cancer, when estrogen attaches to the estrogen receptor (ESR1), the receptor changes to an activated state and starts sending growth signals to the tumor. Tamoxifen works by attaching to the estrogen receptor and not letting estrogen attach, so the receptor can't get in its activated state.
Aromatase inhibitors (both nonsteroidal ones like anastrozole and letrozole and steroidal ones like exemestane) work by preventing the body from using the aromatase enzyme to make estrogen from estrogen precursors. As a result, there's no estrogen available in the body to bind to the receptor (that's why aromatase inhibitors don't work pre-menopause when the ovaries make estrogen without using the aromatase pathway).
Tumors don't like it when their estrogen receptors can't bind estrogen, so they usually find a way to do without. That doesn't always mean that they turn ER negative. Often the ESR1 of the tumor will develop a mutation that will keep it in an activated state even in the absence of estrogen binding. So they still need their estrogen receptor, but they don't need estrogen anymore. This is when hormonal treatments that rely on preventing estrogen from binding the ESR1 fail.
Faslodex/fulvestrant is different - it actually finds and destroys the estrogen receptors on the tumors (it's a SERD - selective estrogen receptor degrader). It is often able to degrade mutant ESR1, not just normal ESR1. It's still very much worth asking for fresh biopsies of the rogue tumors to check for conversion to triple negative or to HER+ (or even to send them out for mutation testing, if available in NZ), but there's still a chance you would respond to faslodex (with or without Ibrance).
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Well, the CT results came in in record time. No real surprises. I have pleural effusion and thickening, which will explain the shortness of breath. malignant ascites (again) with a rapidly increasing ovarian lesion, and "aggressive bony destruction of the left iliac bone".
No mention of bone marrow involvement - would that even show up on a CT? I will try to push for a hysterectomy / oophrectomy at the appointment next week, and it looks like back to chemo for the ascites. My left hip got rads a couple of years ago, so I'm not sure if they can do it again, but it doesn't bother me at the moment.
Thanks for your comments, piggy99, I wonder if the rogue ovary is playing around with my hormone receptors? Whatever, I'm better off without it, I think.
So now, it's back to waiting for the appointment with the MO next Thursday. At least the storm has passed with minimal damage, and no power cut for a change!
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I had a CT yesterday and found out today that abraxane isn’t working. They started me on halaven. This is treatment number three, which means two failures in a year. My tumors keep doubling in size. And to add salt to the wound I apparently have a pretty bad case of Lymphedema. Needless to say I’ve had an emotional day. What if nothing works?
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Very sorry to hear that, SheilaMarie. Lymphedema is incredibly painful and it can really mess with your mind when added on top of everything else you have going on. Once you get into therapy, it should die down fast. Chemo can cause it to flare up. You did not say what the other treatment was that did not work for you? Many many women on these boards sing the praises of Halaven, and I hope it works the same for you, and you can get back shortly to your wonderful normal life..
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I haven't posted for a while, and I've been thumbing through the forums to decide where to post my question. I'm stage IV, bone mets hip, knee, ribs, spine, shoulder,grade 3 nodes, triple positive, dx at 36 last June 2017. I finished first batch of chemo in dec (16 week 8 rounds), am still getting Herceptin+Perjeta infusions every 3 weeks just no more taxotere, nodes were getting smaller,but on my last scan, a week ago, my nodes have increased in size, so my doc wants to start me on Tamoxifen.
My question is, and I've read all the data sheets material but can't find any place where it's being talked about: Tamoxifen
Does it suck??? Can I refuse it?
I'm tired all the time anyway, my hair just barely started to grow. Is tamoxifen worth it?
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SheilaMarie, I hope you can find a lymphadema specialist in your area. I had one years ago and it worked wonders. I still do techniques I learned 11 years later. Sometime it takes a few protocols to hit the right one. Hang in there
Danfd. Try the tamoxifen. I remember how tired I was at the end of chemo ,rads etc but 6 years on aromatase inhibitor gave me many years NED while I was stage3b a total of 12 years. Not fun but looking back it was worth it. That said I’m not loving it now that I’m stage 4 for the past year.0 -
cure-ious, I was on Kisqali / aromasin for 11 months.
Good news received today.. I’m eligible for radiation to the tumor in my chest!!!
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bigbhome. I just read your post here. I've never heard of mets there. I assume the change to Madame X is in response to progression there? Or hip? Hugs
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SheilaMarie- Excellent!!! Progress!! I know how it feels to have all the problems piling up on top of each other, and one nightmare diagnosis on top of other waves of bad news, feels like it won't end, but if you can mentally compartmentalize the different problems into their own box, and attack each separately on its own time schedule, hopefully you will slide back into the game better prepared, and just start getting some good news for a change!!
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SheilaMarie-Good news! Hope the radiation does the trick! We had a baby shower for DD2 last weekend. This is why I’m in colorado for awhile
These are my girls😍. I’m the one with the scary white legs.0 -
Dani, there’s a thread called bottle o tamoxifen for info on SE’s. I’ve been on it about 9 months now, the first few months had some night sweats, joint pain and hot flashes but now I only have joint pain in my fingers in the morning, glucosamine helps. I’d say it’s worth it, at least to give it a year and see how it goes.
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Illimae,
Which mountains are you visiting
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Thought u girls might enjoy a photo of myself and hubby at Port Arthur near Hobart Tasmania. It is winter here so the degrees was about 15 Celsius but with a cold wind. Unfortunately I picked up a cold from either the plane or airport as my white blood cells are quite low on the new treatment. 0 -
iwright great photo of u and your girls they are very pretty like their mum. Good to see u going so well
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Suems my bone marrow involvement only showed up through terrible shortness of breath exhaustion and very low sudden drop in hemoglobin. I have been taken off Letrozole and put in on 2 others which appear to be working as my tumour markers (mine are quite accurate) went from 379 to 242 in 3 weeks. I have a crappy cold which is making me miserable which I probably picked up from Melb airport or the plane as I went to Tasm for 4 days over our long weekend. My white blood cells are obviously low as i never get a cold . The dr believes the bone marrow involvement is only partial which is common
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Thank you for that Delvzy. I had been thinking my ridiculous shortness of breath was from the small pleural effusion the CT spotted. I can't walk across the room without getting puffed. My platelets are way down (got a big bruise from the use of my port for the CT contrast), but hemoglobin is pretty good at 122. I hadn't linked breathlessness with bone marrow - very interesting, although it won't make much difference in the grand scheme of things. It looks like I'll be put on a new chemo next week, the only question is which one.
I'll let you know after Thursday.
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iwrite, the hubs and I heading to our cabin in the West Texas mountains near Big Bend next month. We will be clearing some brush and seeing how close the last fire came. It’s a beautiful spot and we plan to complete the electric and plumbing so we can move in permanently by years end hopefully.
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Illimae- What a beautiful area! Living in a place we love makes retirement even better!
Delvzy- Thanks for the wonderful photo of you and your husband! Fall days have their own beauty. Sorry you caught a cold...it’s the last thing you need! Feel better soon.
Suems- Sending you heartfelt wishes for an effective new treatment with no bad SEs!
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What a gorgeous spot, thanks for sharing the photos , it is similar to our bush here at home during the summer
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Is it normal to have pain at the site of bone mets (neck and back) after starting hormonal therapy ?
I started zoladex and femara 2 weeks ago, and I have bad pain in my back and neck ( I have mets to spine). I wonder if It’s normal or should I be concerned ? Provided that paun disappeared many months ago on chemo and I am now nead.
Thank You
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Hello fellow warriors, I am needing help:/ and all my friends with faces have run off I guess cuz I don’t hear from them:/ they don’t understand anyway so here goes. I started taxol for the duration 3 weeks ago and it went pretty good. The bone mets pain had even gotten better! But then last chemo I started zometa and oh boy was I down for the count. Couldn’t get out of bed for 3 days solid with flu like symptoms. Ok so that’s pretty normal but now my surgery site( titanium rod femur/hip replacement) is giving me heck! I can hardly walk. It’s giving out and sharp pains. Drastic difference between before and after zometa? Anybody else
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Hi Chef, I am also on Zometa (just got home from infusion) and have bone pain after infusion for a few days. I was told that slowing down the infusion can help with the bone pain. Ask them to infuse for at minimum 30 minutes. I would ask for 60 if I were you. See if the pain is better the next time with a slower infusion.
Joy
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Kathryn, Delvzy, Illie, great pics and great reminder that us stage IV-ers are out there living our lives!
Chef, that first Zometa is an ass-kicker. Several ladies suggest taking Claritin the day before, day of, and day after the infusion. I did that the first several infusions and they did get better, to the point where I now just go about my day after the infusion. As to slowing down the IV, I asked my MO about it and she said no, it had to be 15 minutes to get to the proper concentrate in the bloodstream. I know others have done just fine with the slower drip. Whatever you do, know that it does get easier over time.
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Thanks for the tips! Anybody else have the problem with writing longer posts and the keyboard getting slower to operate and slower and slower? It only happens to me on here? I’m thinking there’s a word limit?
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Yes chef47 I get that problem.
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If you change to 'Use rich text editor' its much better and you don't get that annoying slowing down. See the option near the Preview and Submit buttons. I also always copy my text every now and again as the page sometimes refreshes and I have lost a bunch of text in the past.
Sarah0
