Bone Mets Thread
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megs986 here's my Bone Mets story: I was diagnosed with Stage II in 2007. Had chemo, tamoxifen, and Arimidex. All was good until recently
Several years ago, I was having some rib pain on my right side. I saw my MO and she ordered a scan (I forget which kind.) Anyway the scan showed something of concern and I was supposed to follow up with her. The pain went away, and I didn't follow up with her. (This was duly noted in my medical record - ouch!)
A year or so later, I had spent some time with my sister and had been sitting more than I usually do. I developed a rather sharp pain in my left hip. I thought it was due to my sitting. It got so bad that I actually thought my hip was fractured. I went to my PCP and she ordered an X-ray. It showed nothing more than some scoliosis, which I've had since I was a kid. The pain continued, but I just dealt with it.
Then, in February 2020, I found a lump in my armpit. I had a feeling in my gut that this was not good and made an appointment with my PCP. She ordered an US for the next day and I had a biopsy of the lump within 2-3 weeks. I got the call that it was in fact cancer and that it was metastatic. Further scans revealed it had spread to my hip, spine, femur and ribs. That explains the pain, I guess.
I had palliative radiation to my hip, spine and femur which GREATLY reduced my pain. I've been taking Ibrance and Armindex and hope that this keeps this beast under control.
I hope you get answers to your questions. Feel free to PM me again if I can be more specific.
((hugs)))
Carol
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megs986 - this pain could definitely be a number of other things but you MUST get checked as soon as possible.
My femur and butt pain started the first week of January I thought it was a sports injury because I had recently ramped up my routine. I saw a chiropractor but soon realized he wasn't going to help. By February I had to use a cane. I was diagnosed via a CT and X-ray in the ER on February 23. I didn't want to go to the ER but my husband forced the issue and now I'm so glad he did. In the ER they were pretty sure it was bone mets. Diagnosis was then confirmed by my oncologist (a biopsy and PET scan). I am so lucky I didn't wait to see a sports orthopedic. My femur was in such bad shape, it's a miracle I didn't break it. So in about 7 weeks my pain went from causing a mild limp to impossible to walk (wheelchair bound). After surgery to repair my femur, I can now dance.Good luck and please keep us updated.
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Thank you all for sharing your experiences. I've been in a place where I had finally let my guard down a little of always waiting for the other shoe to drop so am feeling really scared and upset. This wait of trying to get in somewhere isn't helping. I am trying a few different avenues to be seen and RK2020 have been teetering on just going to an ER soon because the hoops are so ridiculous. That's good to know you did the same. Everyone I've spoken to at doctor's offices is acting like I am overreacting. Appreciate the support and sharing.
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megs986, I agree it's really difficult when you're seeing (or talking) to a new doctor who doesn't know you or your history. I was afraid that my new MO wouldn't take me seriously when I told her about the rib pain, since she was still fairly new to me at that time. I told her that I wasn't one to over-state my symptoms, and fortunately she listened to me. I'm so sorry you're finding it so difficult to find someone to listen to you without having to go to the ER.
I'll be keeping you in my thoughts and checking back for updates from you.
Carol
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megs986 - Maybe you could contact your old MO and see if they had any suggestions on how to proceed or could contact a MO in your new area to get you through to a new MO faster.
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Megs, cowgal's suggestion is a good one. Typically a direct referral from another doctor is much quicker than a patient's trying to make a direct appointment! Your old MO may be the best source for getting a quick appointment! Good luck!
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Hello everyone! I am new to MBC and bone mets. I was originally diagnosed with stage 2A in 2018. Did everything I could do to get rid of breast cancer. I have had no symptoms of anything going awry. Just last month I had my 6-month blood work done and my platelets were really low on MyChart so I contacted the oncology nurse. She called me back and said that my tumor markers were high and the oncologist wanted scans. In these past few week I had CT scan, PET scan, and bone biopsy. The spots with the most activity are the lumbar spine and right hip. I spoke with my oncologist on Tuesday and he’s taking me off of letrozole that I started in July 2020. He’s putting me on Faslodex, Ibrance, and Zometa. I’ll probably start this regimen sometime next week.
The oncologist is hopeful for me, but also concerned because I have the PALB2 gene mutation and that might make it tricky to treat my disease.
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RosieRed - I’m so sorry you had to join this club. It took me 4 years to go from 2A to MBC. They stopped my Tamoxifen and put me on Fulvestrant/Ibrance/Zometa and I’m having good results even though my MO had some concern that I may be endocrine resistant. The original Ibrance dosing was too much initially so don’t lose heart if you have to be lowered. I’m now on the lowest dose. My first dose of Zometa was no picnic but I’m doing well on it now. Good luck.
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RosieRed, I'm sorry to hear about your mets. I second what RK 2020 said about the Zometa. The first two doses were the hardest. The first one gave me pretty bad nausea the night after the infusion and a fever. The second infusion gave me milder nausea and a slight fever. Since then, I've really had no problems with it - maybe an occasional mild headache and a very low-grade fever.
My MO did write me a prescription for Compazine. After the first infusion, I got up at about 3:00 AM and took one, but I don't know that it helped all that much. After the second infusion, I took one before I went to bed.. It may have helped, but I'm not sure. I've now had nine infusions (I get them every month) and haven't really had any problems with it. I haven't taken the Compazine since my second infusion.
I did give my periodontist a copy of the Zometa drug facts sheet since one of the potential side effects is osteo-jaw necrosis (ONJ). I've not had any issues with that, but you want to avoid invasive dental work while on Zometa.
Let us know how you're doing. You'll find a lot of good and helpful support and information here. I lurk here often as I'm fairly new into the mets diagnosis.
Carol
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Rosie, there's a wonderful string on Ibrance, which is enormously active and full of knowledgeable, caring people. They will welcome you! I was on Ibrance/Faslodex/Xgeva for 21 months with good success, and many others have had far longer "runs". The best of luck to you!
--Lynn
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Thank you all for the suggestions! I did contact my original MO too, trying a few paths. He really doesn't practice anymore so it's hard to get in touch with him and I am going through someone that isn't responsive at all. All around really frustrating. I finally made an appointment with a PCP tomorrow. Hoping they'll take me seriously. Thanks again for the support and suggestions. I've been reminded of how wonderfully supportive the BC community is.
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Joyner- How was your scan and MO appt this week?
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Candy, I thought my PET looked good but my MO not as much. She ordered an MRI (this past Tuesday) to make sure, and that turned out to be stable. So...another 3-months' reprieve! Thanks for checking on me!
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Lynn,
Great news for you!
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Hooray! So happy for you Joyner!
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Joyner- Whoot Whoot. Happy for ya. Breathe for the next 3 months.
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That's wonderful Joyner!
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Hi, new to the thread - joining because it's confirmed now that the CT on Jan 28 did see a bone met in T10/11 region.
My radonc considers this an oligoprogression & has planned 5 fractions of rads. It is a very small lesion apparently and could have a smaller dose but he wants to be aggressive and this will hopefully allow me to stay on my current systemic treatment (which I've been on now for 11 months).
I admit I'm bummed as this now means I have mets to 3 locations (liver, lungs, bone) which is a sucky presentation in terms of prognosis but it is what it is.
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Hi Moth.
Sorry about the new bone met but I'm glad to hear that your RO is being aggressive. I have extensive bone mets so for me it's about controlling symptoms. Too many to zap! I'm also in the 3 location boat now that it has gone to my liver... I started out with lung and bone. Totally get how you are feeling. But I feel positive the RO can knock it back to two...
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Cross posting so 2nd paragraph can be addressed here---- anyone else here with multiple areas of mets and how much does your MO's monitor the bones???
Moth- Well crap. I can see why they want to zap it, as it is the only bone met for you. I have never had rads. Risks? In that area? If it was me, I would look at risks versus benefits. I have heard that rads lower in lumbar/sacral area can cause bowel/bladder issues. Good that systemic therapy is controlling your liver and lungs.
My MO doesn't look at my bone mets. We do CT of chest and MRI of abdomen and pelvis. It will comment on "bone window" on CT and the "sclerotic" areas on thoracic and lumbar spine. But I have not had a bone scan in over a year. So my bone mets--- cervical, thoracic, lumbar, sacral, and pelvis--- could be worsening and we are not monitoring it. I wonder why. Last PET for me was Nov 2019 too. My MO seems concerned with my 4 liver mets and monitoring my organs and that is it. ??????? I wonder if I should push for monitoring of my bony mets.
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Hi Candy,
Couple of comments. I have, until recently, had bone scans approximately once a year even though bone scans seem pretty useless for me. For some reason, they never really show the extent of the disease in my skeleton (it's everywhere for me). The mets are always reported and monitored in my chest/abdomen CT though. I do have mets in my c-spine, skull base and hips/sacrum that are not captured by the CT scan but my MO has never worried about that unless there are symptoms. I don't know what he will do now that I have progression in the liver. I suspect that this will become his primary focus as there is much more potential for things to go sideways in the viscera as opposed to the bones. The CT scan monitored the disease in my right pleura. I'm in Canada so have not had a PET scan. They're harder to access here.
With regards to radiation, there is risk but I have had multiple treatments to deal with pain and other bone met related issues with good success. While the radiation to my hip did not provide a complete response, it really helped reduce the pain I was experiencing when walking. I've had rads to my sacrum and thoracic spine with no issues. Most recently I had rads to my neck and skull base mets to resolve an issue with debilitating headaches that cropped up in September. That one wasn't easy, took some time for recovery so should not be done lightly given the location, but was hugely beneficial.
Hope this helps.
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moth, I'm sorry you've joined another thread here. I "only" have mets to my bones - femur, hip, spine and ribs. I had a total of 13 (I think) rad sessions. 3 to my spine and 10 to my hip/femur. The rads practically eliminated the pain in my hip. I didn't have any side effects (digestive or otherwise).
Again, I'm sorry... Not the news you wanted, I'm sure.
(((hugs))) Carol
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On the plus side - its one, its small, and it was caught BEFORE pain or other issues.
(Agree though about the three location suckitude
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Thanks Sadiesservant for your post. Bone scans are not real reliable for me too. I have rheumatoid arthritis so I light up everywhere. Mets or RA?
Like I said, I have not had radiation yet, so I don't claim to be an expert. I have just read that radiation can cause other issues. Makes sense. If the area is close to colon or bladder may cause side effects. So you have to weigh the risks/rewards. I would not want bowel or bladder incontinence, etc.
I was just thinking aloud that so many posters here talk about their MO's seeing new areas on bone and wanting to change treatment or do interventions. I could have a new met on my bones and we would have no idea. We concentrate on the liver--- rightfully so. But the bone areas are forgotten. I just wondered what other posters on this Thread think. Does your MO's look so closely at the bones that they say "Oh there is a tiny new spot".
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thx everyone!
Candy, I think the thing that worries my MO with mine is that I'm triple neg, some of my tumors have shown propensity to grow super fast, some are responding to immunotherapy/chemo, while others are not. So they're not taking any chances with any new spots. I've been on the immunotherapy for way longer than the median (from the study which led to its approval) and it's still seemingly working on my liver mets, which are just slowly continuing to shrink. So they don't want to take me off or change treatment in case we lose control of the liver mets. I was told early on that bone mets can cause pain and mobility issues but they're not the ones that kill you fast - it's the organ ones. So I think that's why they focus on those?
I just radiation in Dec to my lung met so I'm feeling pretty comfortable to get radiation and the area T10/T11 is pretty easy to reach. The risk is a bit of scatter to the liver and possibly diarrhea but it's not really expected to cause many side effects.
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moth- I was not thinking about you being triple negative. That does make a difference, I can see. Yes, I have read that the organs are the ones to watch-- organ failure. I wish the best for you.
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Hi Candy!!!! Haven't talked with you for awhile. Glad to see ibrance is still working for you. I have a bone scan every 2/3 months. But, even though I have numerous mets n my spine, pelvis etc my Onc never mentions them. About a year ago, I mentioned to him about extreme pain in my T10 and he said oh you have a compression fracture there with mets. He said " you might want to call Radiology and see if they can do anything for you." So, from that I took that bone mets are above his pay grade.
I will have been diagnosed 4 yrs this July and we just can't find any lasting treatment for me. I was on two different hormonals which were a fail. Then we did TAXol for 6 mos which was really clearing things out until the neuprathy in my leg got too bad. The Onc called that treatment off because he was afraid the neurapthy would be permeant. Then had a go at Zoloda for 8 months and while never ever shrink it wasn't growing either. ( I call that a win) When I finally did have progression we cycled back to hormonals with A/A which praise GOD showed shrinkage at 1st set of scans. Due for scans March 1 which hopefully show it still working.
I got lucky with A/A only SE are low hemo. and fatigue.
I think of you often Candy.. <<<HUGS>>>>
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Hi Snooky !!!!! I see you post on various Threads from time to time. Good to see you !!!!! I will pray for your scan March 1. Keep me informed. My scan is March 22. Yes still Ibrance/Letrozole/Lupron/Xgeva, first line treatment thank God. But we all know that can change in a heartbeat.
Hugs
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Moth, I am happy for you that your MO took an aggressive treatment for a bone met. SBRT has way less se and better outcome. All the best.
I had 2 very small and one average size Mets in my spine but they grew fast and delay in treatment cause a fracture and lesion spread to my canal, my team used medieval century radiation technology (!) to fractured bone and two healthy up (T12)and low vertebrae. since then (after 6weeks bedrest lifted) I wear a brace most of the time and my normal has been changed. A neuro surgeon refused to vertebroplasty as risks of spreading are higher than benefits. I said this because bone Mets also can be life threatening and impact qol if it spreads to bone marrow or cause fracture that ends up with neuropathy or paralysis etc. I hope none of these happen, never.Best wishes for good test results for those have due scans.
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Snow-drop- just to clarify, I will be getting traditional palliative rads in 5 fractions. SBRT is not avail here outside of a trial & I was in the trial & dropped out as I was randomized to the standard of care arm. So I hope the regular rads will do the trick for me. I will find out more tomorrow about the size of the lesion when I have my MO appt and can see the scan reports but so far everyone has said 'tiny' so I'm hopeful this intervention will make it disappear.
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