Bone Mets Thread
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I met with my MO and trial team yesterday to review the results of my surveillance scans (bone scan, ct scans of chest, abdomen and pelvis) and I am happy to report that my bones and liver are stable. No new lesions in bones or liver. A slight 10% decrease in one of my liver mets. Not much but it's in the right direction.
I always feel bad reporting good news on my scans especially since we've had such a spate of rough patches with many of our MBC sisters. I read the threads daily and am cheering everyone on who has good news and supporting those who are struggling. You are all in my thoughts every day. My husband wishes I wouldn't read so much. It is hard to explain to him so I try not get emotional in front of him when we've lost someone. It's always a kick in the gut and a reality check.
(((Hugs))) and love to you all.
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So I went out this evening, just for an hour; my oncologist has started a weekly group for spiritual health and we wanted to go. Well of course I needed to shower since I’ve been flat for a few days, so my cousin helped me out, since exertion leaves me short of breath, and she made this comment: It’ll never get better until you start exercising your lungs. I asked, what do you mean, exercising my lungs? She says, you have to get up and walk around, you have to expand them, use them. I said, I’m not sure about that in my case, since MO said my shortness of breath is a result of the anemia. She didn’t remember him saying I was anemic, she remembered him saying my labs were good enough to get chemo. She also didn’t remember him saying that I have (in his opinion) congestive heart failure. I reminded her about my ER visit Friday and asked if she knew what angina is, she said she’d look it up later. She was so focused on the ER doc saying I hadn’t had a heart attack that she missed him saying what I do have. As I have often described her, she is a very vigorous 81, the only med she takes is thyroid, and half the time forgets it. I guess she expects me to bounce back immediately, and frankly, that’s just not going to happen.
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Friends,
I have a question that I hope someone can help me with. When someone replies that 'bone-only' MBC is good news, what does that mean? Does the cancer grow more slowly in the bone?
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Booboo, that what my MO said, if it's only in the bones we can keep it easier in control for a longer period of time, plus the medications have less SE. I was diagnosed with bone mets November 2017 and I hope it is true.
Blessings and prayers to al
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Hi Booboo -
I will make an attempt to answer your question. As we know, there are worlds of experience and knowledge here so any and all please chime in to add to my answer attempt.
First of all, any and all mets are not good in anyone's book. But if one has to has mets, bone-only are the ones to have. They have a longer prognosis when compared to other visceral or brain mets and they do not tend to lead to death. If one can remain "bone-only" and not have progression to other organs or brain, they can be managed for quite some time on various medication regimens.
Remembering I am a newbie and still learning all this, the above is my understanding of why bone-only is a "good thing."
Please chime in anyone who can explain in a more eloquent way.
Warmly, V
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I was lucky that Taxol killed the mets in my liver, lungs and lymph nodes last year. That chemo worked for me, just not for long as those buggers keep popping up in my bones. As long as they stay stable, I am happy. There is always the fear that the mets will come back in my organs, as it can happen at any time. I have had many rib fractures due to the mets, it’s not easy to manage. Damn cancer. Animal Crackers - such happy news! We need to celebrate the wins! Lisa
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BigPeaches, I know how you feel! Only 5 months ago I was in the same place like you. I thought the life wasover and started preparing to die. Until I found this group that gave me strength and hope. It takes time to get control over your thoughts. Give yourself time and you are going to be ok. We don't have choice, accept it and do the best of your days.
Minnie, Leapfrog I agree with you, to worry about the future is wasting of time. I would like to learn when to stop, before i feel exsosted and to listen to my body.
Warm wishes to all and prayers for healing. Elen
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Thanks for all the encouraging words from the ladies here I will keep u posted . Praying for a miracle and it's not in the bone marrow x
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AnimalCrackers, don't ever feel bad for reporting good news! We all need to hear it!!
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AnimalCrackers... I agree with BigPeaches, I love hearing good news. Celebrate it, don't hide it!
Scans tomorrow morning...ugh. But ready to get some answers and move on if necessary.
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Elle, good luck with the scans! We are waiting for happy news!
You will be in my prayers. Elen
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Cathy (AnimalCrackers), thank you for sharing - don't ever feel bad about having good results. We need to hear about them, especially in times like these when a lot of the women on the site seem to be going through rough patches. We can be happy for each other and grieve for each other at the same time, and having hope helps with both.
Elle, good luck with your scans tomorrow!
Regarding bone mets, some statistics show longer survival for bone mets only - unlike organ mets or brain mets that can kill you if they get too extensive or if they are in a bad location, bone mets rarely do, so life is not usually threatened until the cancer finds a way to move out of the bone. With treatment, the hope is that it would take some time. Some other studies, on the other hand, show less difference between bone and other organs, and rather show that a single site (single organ, not single met) is better than multiple, because it means that the cancer has not yet learned to adapt to multiple environments. Plus, with a single site the mets can sometimes be treated locally (surgery for lung/liver, cyberknife for brain, Y90 or TACE for liver, etc), in addition to systemic treatments. These are of course medians and averages, and each of us can of course do much better or much worse than our "cohort" would suggest. I'm praying that new treatments put each and every one of us on the "long tail" of any statistic....
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AnimalCrackers, we want to celebrate with you. We are here for eachother for the good, the bad, the humorous, the frustrating....the whole kit and kaboodle.
I've heard the same thing about having mets confined to the bones; although there can be big complications with calcium levels, it's not likely that bone mets leads to death. As compared to having mets in a visceral organ, where the mets take over and function declines. I'm careful not to talk to much on this as I understand from some FB groups I'm in that it can be very divisive. I'm not crticizing anyone here, just noting that it's all sensitive.
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Animal crackers- So glad to hear your news! Enjoy enjoy!
I saw a post about what to do with unused meds somewhere, but can’t remember the thread now . It reminded me how important it is that we dispose of these things safely. I used to work in the water industry and during that time many prescription drug disposal programs were started. In quite a few cities you can use a marker to cross out your personal information on the label and take them to the police department for drop off. Many have mailboxes in the lobby labeled for used drugs. The drugs are incinerated to keep them out of the water. It also keeps them out of the wrong hands. I was so worried about contaminating the water and the soil with cancer cells and chemicals that I decided on cremation. Haven’t figured out how to stop polluting things till then though 😳 (Maybe don’t s...in the woods?
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I take unused meds to my oncology pharmacy. They check the meds and use them for compassionate care. One time I had a good bit of very expensive treatment meds left over when it began to fail for me, and I was told it took care of another woman who had no insurance for several months. Another uninsured woman was suffering in horrible pain and I was able to donate some pain meds that did not work for me. So please see if your oncologist knows of such a program before discarding drugs commonly used by MBC patients!
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Great news indeed and always worth sharing and I too got good results from my contrast ct and bone scans today. My RO says it looks like decreased activity in my bone met and no signs of other spots, YAYYY! The ct showed a possible cyst in the pelvic area, which would not be worrisome, except that the bone scan doctor had a 3D image done on my pelvic area after viewing the first 'pictures', and I am being referred for an ultrasound. Does this seem worrisome or ?? Thanks everyone, happy Wednesday evening...
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Hi Everyone,
Haven't been posting much on this thread. I was diagnosed with bone mets 5 years ago and so far it has been in bone only. My onco did say that bone mets are easier to manage. I have come across some women on this board who have had bone mets for a long time.
As with any metastases, the ones in the bone also has an effect on the quality of life due to pain. My spots on the thoracic spine don't cause much pain but the one on lumbar spine and the cervical spine causes unbearable pain, which I am managing with non-narcotic pain medicines.
Lulubee, thanks for the information on medicines' re-use. I have a lot of expensive pain meds which don't work for me. I'll check with my doctor to see if anyone else can benefit from these.
Take care,
S3K5.
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Lulubee and Kathryn/Iwrite, thanks for the important comments about unused meds- I don't have any extra cancer meds, but a lot of other meds, most expired and useless I've left them in a drawer because I do not know what to do with them all! How are you supposed to get rid of statins and BP meds? pain killers from surgeries and chemo anti-nausea, etc- these are a lot of powerful compounds. throw them away in the bottle that is labelled? Or pull them out in a pile and into a baggie and toss in the trash, or what?!
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Your local pharmacies can advise or assist you with proper disposal.
The main thing is NEVER flush meds down the toilet. I've read that the water supplies in some cities are accumulating measurable amounts of birth control hormones and anti-depressants. Scary.
Also... there are some awful stories in cancer land about grandmother's pain meds disappearing because a grandchild or his friends stole them to sell on the street. Reprehensible, yes. But it happens. Container Store and other places sell inexpensive lockboxes for prescription meds. I've had one for years.
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Animal Crackers. So great to hear good news. It makes everyone feel more hopeful and happy for you. Glad Janky had good news too.
Interesting about how to dispose of meds. I contacted my speciality pharmacy when I stopped Ibrance. They were not at all helpful. They couldn’t use it so they didn’t want only 3 pills. Will try hospital.
I am going to mo tomorrow. Will get scan results.
On my way home from picking up grandkids I fell..flat on my face. Nothing broken but some bruising and cuts. But it reminded me that life can change in a split second. All winter I was afraid of slipping on the ice in case I broke something with mets. So Now the ice is gone and I tripped on “ nothing”. All that worry for nothing. I’m not about to take up skydiving but maybe I’ll learn not to waste time worrying about what will never happen
My grandkids just came in with flowers they picked for me so I’ll feel better. Dandelion bouquet. Now that is living.
Take care all. I hope everyone has a peaceful weekend. Maire0 -
I spent a great day with my bff, and on the way to the car following pedicure I fell flat on my ass! It was hilarious! Thank god for the kind stranger who helped my bff get me up as I was laughing so hard. I’m home now, with a wet ass, but have taken advil and flexeril to stave off the aches I’m sure are to come
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our fire stations have med drop off events once a month and they handle proper disposal. I put all of mine together in a baggie marked “cancer meds” (no matter what they are) because I don’t wants all the bottle stuff with my info rovving around
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Had my scan today and STABLE! I'll take it with the crazy tumor markers.
My onc just called. He doesn't usually after a scan, but he wanted to know if I was willing to go back up to 125mg on the Ibrance. I started out at 125 but went to 100 because of the esophagus problems. Turns out the Ibrance had nothing to do with it so I said sure. I felt pretty good on 125. Anyway, it will be interesting to see if the TMs start coming down again.
Thanks for the support. I'm so relieved!
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Elle, cheers for stable! So happy that some of us are having good news. It’s been a pretty sad winter and beginning of spring with many ladies struggling. Thanks for sharing and for refilling that hope bucket we turn toward to get through each day.
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Elle, so happy for you! Stable sounds very good. Wish you many more scans like this!
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Elle, that is fantastic!! And clearly, you have found a sweet and caring MO...
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Re Booboo's post about mets to the bones. Gumdoctor I think you've explained it perfectly. Bones tend to contain the tumours for longer Booboo. I read recently that life span after diagnosis is about double that of visceral disease. The article didn't give details of studies or treatments but it seems to be universally acknowledged that, as S3K5 says, if it can remain contained to the bones it takes longer for progression to occur. Let's all hope it never does, that's my intention. The article went on to mention that quality of life can be poorer with bone mets due to pain and lack of mobility. As I have bones only mets I can attest to the pain and difficulty with mobility but not whether quality of life is worse than for those ladies with visceral disease. I wouldn't be so presumptuous but I do know that my life has changed completely so when people say bone only mets are the "good mets" they need to express it differently. No mets are good, as GumDoctor (I think) said. I've been told by my MO that bone mets take longer to respond to treatment.
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Oops I think I might have been repeating what others said whose posts I didn't read properly.
AnimalCrackers, Janky, Elle......congratulations on your good news!! AnimalCrackers I agree with the others. We're all buoyed up when one of us has good news so share away. Janky, I guess the ultrasound is just to eliminate anything worrying. I'll be thinking of you. Elle, stable is great!
I'm having a full body CT and full body bone scan on Tuesday. My turn to cross my fingers and believe I'll still be stable.
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Leapfrog - Wishing you the best of outcomes with your scans!! I am so hoping to remain stable and able to follow with my Ibrance/Letrozole as I am planning to be in Brisbane area of Australia and thereabouts in October for 4 weeks. Originally it was 6-8 but MBC has rained on that parade for now. That's okay though I can go back in a year or so
Glad to hear of all the good results this week, and praying and sending positives for all of you with less than good results or upcoming scans/tests. Have a great weekend everyone!!
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Leapfrog - Hope the scans go well and the results are fabulously boring. You are right. Hearing good news from MBC friends is encouraging!
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