Bone Mets Thread
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Olma, thank you!
Jen, I don’t think you’re making a mistake, I still like to see my MO though, even if it’s just to say “still stable”, I’m paying for a specialist, I want the doc in here to get my moneys worth.
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Jen -- re seeing MO -- I think Mae is right about what she says. I prefer as well to see the MO rather than the NP she works with. But that may have something to do with the NP who I am seeing versus the one who you are seeing. It sounds like you have a lot of confidence in your NP, and also confidence that he/she would escalate to the MO if there was something particularly concerning. I think that's the key point.
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Thanks for sharing your perspectives BevJen and Mae. I think you honed in on the main point - I do have a lot of confidence in the NP. She’s worked with my MO for 20+ years. And I’m active in asking questions and wouldn’t hesitate to see the Mo if I had a concern come up
And with balancing work, being a mom and trying to take good care of myself, not having extra appointments is helpful.
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I see my NP as well. My MO is a male, and I really like him, but I’m more comfortable with a woman. She consuls with him if she feels she needs to while I’m sitting in the room. This last appointment she went to talk to him, and he was sweet enough to come in and talk to me. I told him I hoped he didn’t mind I was more comfortable with the NP. He was not one bit upset. He totally understood. They are a team, and I love that.
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Well said Sondra.
To be honest, I find it challenging. We don’t have NPs here and my MO has been stretching out the appointments and scans. Part of the problem is that once the lung fluid issue was under control I had myself in the “doing great” frame of mind but then wham, I had early progression. That set me back significantly from a mental perspective.
The other problem is that I have a bucketload of symptoms which can all be explained by degenerative issues or side effects or.... All could also be signs of cancer spreading. No matter how hard I try It gets in my head. So, while I understand the desire to minimize scans and give us a break from appointments, my preference would be a set schedule for scans and visits - Covid be damned!
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vlnrph, thank you so much for well-explain about the dosage and how it is effective when splitting in 2 courses. It is really helpful to understand the process of absorbing calcium in body. Thank you 🙏
Olma and Jackie thank you for sharing pictures of the supplement.
KBL, About radiation, as of my MO and RO, it is suggested only when you have symptoms like severe pain, numbness (when tumors pressure nerves), or risk of fracture. Traditional Radiation therapy (the one that my insurance accepts) stops tumors growing. Side effects include skin burning and dryness for several months (I still have several spots on my belly) fatigue and other side effects but really depends on which part of spine is targetedand how many sessions you are taking. If your MO/ RO suggest that it is necessary for you take it. There is a very good discussion about bone Mets by dr brufsky on “living beyond cancer" , ladies shared the link here I found it educational and useful. https://metsconf.lbbc.org/en/hall#topics-tab
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Sadiesservant, I totally agree with what you’re saying. I have been feeling the same as you are. Each time we’re told of progression or what I now know has been there all along is gut-wrenching. You have been on this roller coaster a lot longer than me, so I can’t say what it’s like to be on it for 18 years.
Most days I resign myself to the fact that I don’t have a lot of years left, I cry a little, and then I try as hard as I can to pick myself back up and say I won’t let this disease rob me of the time I have left. It’s not fair to me or my family. I cried with my husband today. What I feel is I want to keep being able to do what I’ve always done, make sure everyone is happy. I know that some day I’m going to have to say “I can’t today,” and it totally sucks. I don’t want to get to that point. He is so awesome and tells me if I don’t want to do something, it’s okay, like cook or something else. He tells me to relax all day if I want to. I don’t know whether I’m lucky for being diagnosed de novo right out of the gate. I didn’t have all of the treatment from Stage I to Stage IV.
I’m so sorry for how you’re feeling, and I am sending you a virtual hug. I’m so grateful for this forum. We are not alone.
I-beat-it, I think I’ve made the decision to forgo radiation at this point. The pain I’ve been having has been there a lot of years and I’m so used to it. I don’t think it’s bad enough where I would need radiation right now. I could see if it was limiting me more than it has over the years. I’m not there yet. Thank you for the information.
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Jen, it sounds like the setup you're in is very good for you and not a mistake at all especially since you are stable. The NP at my center left last year and they haven't replaced her. I really miss talking to her because she was more concerned with my diet and overall health than just cancer more so than my MO. I only see the MO now, sometimes her PA, but I just love her because she's my biggest cheerleader and keeps me on a positive track.
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Looks like I'm joining this thread. Up until now I've had a few scattered lymph node mets which they zapped with Cyberknife. Now im told i have mets in the L3 vertebra, within an hour of learning my daughter had a miscarriage. Not a good day.
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Welcome Pianolady..sorry to hear about your progression to bone mets.
Ladies, I have a question... so I have bone mets in Hip (which doesn't bother me yet) Left Sacrum and now C7 Cervical Spine.
My Sacrum has always bothered me...and a few weeks ago I spoke to a radiation oncologist about my C7 he and my MO informed me that there is a slight fracture in my Sacrum now... he asked if it was hurting...and it wasn't at the time. NOW...it's hurting all the time. I am not a pain pill person I do not take pain pills unless I am in tremendous pain. I don't think I need a pain pill..but ...the pain is consistently here now... He said if the pain got consistent they could radiate...but if its not they shouldn't...has anyone radiated this area and what were the "cons" of it? PS: he did mention SOME people can have bladder issues after
I just don't know if my new treatment Halaven is making it worse (I have had 2 infusions)...like making the cancer grow...bc it never hurt like this? The only other thing new is I am taking Granix...but I have had Neulasta before this and never had this pain so I don't "think" its that even though I know it can cause bone pain..but why would it only be there?0 -
KBL...I cried when I read your post. You're right, we are not alone. We all feel the same way, maybe at different times, but we all feel it. HUGS to you.
pianolady...I'm so sorry that you have to be here. And I'm so sorry about your daughter as well. We have to live as well as we can with this disease as well as all the other terrible things that happen in life.
NicoleRod...I had radiation to my sacrum (10 visits). I didn't have any issues and it eased the pain. I did get a second zap (5 visits) to try and diminish even more pain and that helped too. I hope this helps with your question.
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SondraF, I can relate to your comment about being in "a mental halfway house between the active, trying to find a regime that works and the 'cured' state, which we can never be."
Olma61, my RO did radiation on my T11 lesion even though I had a negative biopsy and only minor pain. I think his reason for this was due to trying to prevent recurrence and/or progression in that area. It is the only mets that I had and chemo did a really good job of getting rid of the active disease but my spinal fluid was still positive for GATA 3.
Has anyone else had a GATA 3 test done with their biopsy?
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Nicolerod - I took 5 hits to my right sacroilliac last winter and whereas before you could palpate the lump in the joint, it has completely disappeared. I was in real bad shape last November and, frankly, Im rather surprised that they only went with five sessions. RO did indicate that they could do more if I felt I needed it, but five seemed to be ok. Side effects - I had one or two mornings of Big D, although three tabs of immodium got things under control, and a few more days of lightly squishy tummy and feeling pretty terrible. If I had had 10 I think I would have possibly had some bigger issues. This was also before my active treatment started, so I was feeling overall really grotty anyway.
Pain-wise - it resolved the issues on that side quite quickly, but my walking gait was thrown off that it drove more pain and problems on the degenerating disk side of my spine. So.... I had ongoing pain but it wasn't from the cancer, if that makes sense? But I have restrengthened everything now to where I am finally off the NSAIDs and don't require anything.
Is the Halaven driving tumor flare, driving some pain?
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Thanks Jackie
Sondra...thank you also for all that information. So reference Halaven. I had 1 treatment 3 weeks ago but then it triggered Oral Shingles and my mouth was a disaster I had to go on an antiviral and skip a week of chemo. So last week I had my 2nd dose (which now is counting as 1st dose and this Thursday will be the 2nd, if that makes sense). So exactly what you said is my concern...is it driving tumor flare??? >> I actually messaged my MO and asked this she has not responded..the only thing is my liver tumors that normally hurt are not hurting...so it could be:
1. Either the Halaven is working on liver and not on bone
or
2. It is driving tumor flare and bone mets are going..l
I am worried... does that sound like tumor flare, by tumor flare you mean growing right?
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Hi Nicole. No, tumor flare refers to an increase in pain/sensitivity as a result of the tumor being attacked by the chemo. Almost like death throws... which is the way I like to think of it! So tumor flare is a good thing as it means that you are responding to the treatment.
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Sadie is that a real thing? I asked my MO about tumor in the liver swelling and causing pain before they die or when they are die off and she said she never heard of that happening...but I didn't ask about bone mets....hrmmm From your lips to GODS EARS!!! Im sobbing just at the thought that something could be working
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pianolady, I'm so sorry you've had to join this group. I just joined this group recently myself. I'm so sorry about your daughter. It's so hard when our children are hurting. I am giving you a virtual hug.
NicoleRod, do they call it an insufficiency fracture? In the MRIs I had recently, the radiologist suggested I get a sacral MRI because he suspected an insufficiency fracture of my sacrum on both the left and right side. There is really nothing you can do for those fractures that I may have, so I'm leaving it alone for now. Can you tell me exactly where the pain is. Both of my hips always hurt all the way into my butt, and then right down on the very end of my spine, I call it the butt bone, it hurts.
JACK5IE, awwww, I don't know what to say. I'm sorry you cried. I assume it's because it's how you feel as well. It's just been one of those days. Hugs back to you. We are the only ones who get each other. It is so comforting.
cyathea, my stomach mets and now my bone mets have GATA-3. They were both also positive for CK7, and bone was positive for mammaglobin, and GDCFP also.
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KBL...ok so my left side lower back hurts and sometimes the pain goes into my glute (butt)if there is a bone behind the glutei then yes it hurts there on the left. I never have pain on the coccus bone (or tail bone if thats what you mean).... and lately my right lower back is hurting too..but I literally just had a scan like 4 weeks ago...there was nothing on the right but who knows...
They never mentioned Insufficiency fracture..but I am about to consult on Wednesday at John Hopkins with a RO I will ask him?
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cyathea - not familiar with a GATA3 test. What is GATA3 and what does it mean if you test positive? When I had my bone biopsy, they only took bone samples, they did not take marrow or spinal fluid.
pianolady - sorry you 've joined us and at such a difficult time. Hang in there.
nicole - I had stabbing, sharp pain in my breast and some of my mets areas when I started chemo - and it turns out, in my case, it WAS the "death throes" for those tumors/cells so I hope the pain you are experiencing means the same for you. Also, I read about your feelings on hair loss, just let me give you a great big virtual hug and tell you that I can relate to your feelings, totally. I hated losing my hair, but on the brighter side, there are some great natural looking wigs out there these days, so hopefully you can look and feel fabulous with a really nice wig or two.
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Thank you, NicoleRod. I would like it if you keep me updated after your appointment. I hope they can help.
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Thank you Olma ((((hugs)))))
KBL will do!
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Nicole, tumor flare is real. Doctors don't feel what we feel.
I've been on these boards for 13 years and there's been lots of talk about "tumor flare" and "healing pain" when starting a new line of treatment. I've had so much fresh hell kick up in my skeleton during the first month of a new treatment that I have just crawled in bed to cry. I remember when I started Xeloda in 2013 to chastise some new biliary mets, I was bent over double with gut pain so bad I could barely breathe at times during the first cycle.
I always receive tumor flare pain as a Very Good Sign. If treatment is effective, the flare pain subsides as tumor markers begin to fall. Welcome it, take it easy, be hopeful.
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Thanks Lulu !!! Im welcoming with open arms!
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Olma61, I'm no expert, but GATA3 has been used very effectively as a tumor marker to differentiate between breast cancer that has metastasized elsewhere in the body versus the metastasis being considered a different kind of cancer. So, in my case, I inferred that because the spinal fluid tested positive, this was a pretty good indicator that the bone lesion was mets from my breast cancer even though the biopsy itself came back negative. However, I'm not a doctor so I may be interpreting the information incorrectly.
The 2018 article that related to a relatively small MBC study was here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5885610/ "Ninety-one percent (39/43) of metastatic breast carcinoma cases were positive for GATA3. All estrogen receptor (ER)-positive were also GATA3 positive cases. The majority (9/14; 64%) of ER-negative and 37% (3/8) of triple-negative cases were positive for GATA3. All nonmammary adenocarcinoma cases were negative with the exception of one case of metastatic pancreatic adenocarcinoma. Metastatic melanoma cases were all negative but 75% (3/4) urothelial carcinomas expressed GATA3. . . . GATA3 IHC staining is a useful addition to IHC panels for FNA samples in specific settings such as distinguishing metastatic breast from lung carcinoma or melanoma." (I am ER+. The 91% seemed fairly significant to me.)
GATA3 is not "bad". It is necessary for breast cells, but the expression of GATA3 in breast tumors (as compared to breast cancer mets) may help doctors understand the cancer subgroup better and thus provide better treatment. A 2011 article says, "The GATA family members are zinc finger transcription factors involved in cell differentiation and proliferation. GATA3 in particular is necessary for mammary gland maturation, and its loss has been implicated in breast cancer development. . . . Expression of GATA3 was significantly increased in breast cancer, in situ lesions, and hyperplastic tissue compared to normal breast tissue. GATA3 expression decreased with increasing tumor grade. Low GATA3 expression was a significant predictor of disease-related death in all patients, as well as in subgroups of estrogen receptor positive or low grade patients. Additionally, low GATA3 expression correlated with increased tumor size and estrogen and progesterone receptor negativity. " My breast tumors were not tested for GATA3, so the information in this article wasn't applicable for me. You can read more on this here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2983489/
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thanks for that detailed explanation, cyathea. Interesting and good to know
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vlnrph, I have a question for you, and I hope that I'm not unduly imposing on your professional background. I suspect that this one is applicable to many of us.
I take no medications (right now) other than Xeloda. However, I take a number of supplements: a multi-vitamin, 2 D3 capsules, 3 turmeric capsules (spread out over the day), and a .81 aspirin daily. I take my Xeloda early AM and after supper, 30 min after eating breakfast and dinner. When should I be taking supplements?!? Should I take them before the morning Xeloda to avoid interaction but thereby taking on an empty stomach and lessening absorption), some period of time after the Xeloda, at the same time, or what?
Many, many thanks for your guidance. This is a daily concern.
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Pianolady, we're glad to have you among us but sorry that you have to be here. This is an enormously warm, supportive and well-informed group. Good luck to you!
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Hi Joyner you might get more of a response for you post if you start a thread for that because then liver and brain mets people will see it too
Has anyone heard of or had
- Vertebroplasty: Guided by CT imaging, the doctor injects bone cement into the spinal bone, or vertebra, through a very small incision.
- Kyphoplasty: This procedure also treats the spinal bone, but the doctor first inserts a small balloon to create a cavity in the bone. Then the cement is injected.
- Cementoplasty: This term refers to the above techniques performed in any other bone in the body besides the spine.
Pros and cons? Also what kind of Doctor does this??? RO IR??
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Nicole, yes those techniques use to fill in the whole caused by tumors, but before they have to make sure that lesions are removed, some use thermal (heat) some use cool techniques. The specialist who performs this is called Neurointerventional Surgeon, you look for a neuro surgeon who performs this kind of surgery
The main concern using thisfor spine as everyone knows being paralyzed.
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Nurses today at the monthly Zoladex impalement informed me that my chart has been flagged to restart Xgeva - "has anyone spoken to you about this?" Lady, what do you think? Tomorrow I have to chase around by phone if I am coming in in person (although I already sent the request) for MO chit chat on Thursday - hoping so in order I can get that done and dusted, otherwise I guess Ill pop in on Monday when I am in the office nearby.
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