Bone Mets Thread
Comments
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I am hoping to get some understanding about bone mets.
When I was first told it was back it was seen as lung nodules and mediastinal lymph nodes. I started Kisqali/Faslodex in December and after my first scans in March my illiac bone and sacram showed up as lytic lesions. BUT it was explained that it was probably there from the beginning and treatment was working and it showed up after the fact.
This still sounds weird to me. Is this common?
Also I have had pain in my hips, lower back for awhile...over a year before dx. Now I'm told that since it's lytic it shouldn't be causing any pain issues. Is this accurate?
Thx for your input.
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Tangandchris,
You should probe some more re lytic lesions. While on Ibrance, I had a consulting doctor tell me, when what appeared to be new bone mets or more extensive bone mets showed up, that these were just showing that the cancer was in my bone marrow and that when the "new" bone mets showed up, they were demonstrating that the treatment was working. As far as I know, however, most, if not all, of my bone mets were sclerotic, so I'm not really sure about the lytic thing.
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TangandChris - I have been disappointed several times with radiologist reads. I had one oncologist who would bring up my PET scans during my visit so we could review it together which was very helpful but my other MOs do not do that.
My very first MBC PET was completed at an NCI rated facility. I did not find out until I had my next PET at a smaller, rural hospital that my first PET also showed mets in my spine. My MO showed me and I was was disappointed that the first radiologist read did not include ALL areas of lesions. What the heck, right? Since then I have come to realize that I'm at the mercy of the reading radiologist and some are more thorough then others. Most recently, I had an April scan show some lymph node activity that was noted could be related to Covid vaccine. Ok. I had my vaccines in Jan and Feb but I agreed to wait and see what the next scan showed. The next scan in June showed increasing SUV numbers at the nodes but the radiologist and one onc dismissed it saying it might be metastatic or it might be Covid vaccine reaction. Really? The SUV numbers are increasing and these scans are well beyond 6 weeks since I've been vaccinated. There were also other areas of concern on the scan. Because I was in the midst of moving from one state to another, I happened to have the opportunity to have 3 different MOs review my April/June reports. And I got 3 differing opinions. 🤷♀️
Also keep in mind that these scans are not 100%. PETs can show inflammation. MRIs may be needed after a PET shows a specific area of concern. Even my last MRI was a tad disappointing because my femur rod was in the way of an area they needed to see closer.
And regarding what you’ve heard about lytic not being painful? That’s hogwash. Some are painful. Some are not. I know that from personal experience. Many of us were initially diagnosed because we had a painful lytic lesion. Schlerotic lesions are the ones that have healed.
This ride is not for the faint of heart. It's so important to be your own advocate and push for answers. Educate yourself the best you can and find an oncologist who values their patient's opinion. Good luck.0 -
BevJen can I ask you something have you really been metastatic since 2006 or am I reading it incorrectly?
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Sunnidays,
Technically, yes. I had a single site metastasis in 2006 (original diagnosis 2003; surgery, chemo and radiation then went on tamoxifen; single site metastasis to cervix found by my gynecologist in 2006).
I was treated with letrozole (after a hysterectomy in 2006) from 2006-2019. In late 2018, tumor markers began to rise and in 2019, well, all hell broke loose.
So yes, I've had a long run, but nothing like life since 2019.
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I did notice that my dx was updated to include bone mets but it still seems like it was minimized by the MO. I have changed mo's a couple times since this started. I think this one now is more of a listener which is important.
I'm coming up on a year since mets diagnosis and it feels surreal. I'm still not sure if I'm handling any of this right, but for sure its not for the faint of heart.
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BevJen, I appreciate your comment about sclerotic versus lytic lesions as this has been an ongoing area of confusion for me. My understanding was that the difference was simply the way the body responds to the cancer. Lytic eats into the bone and sclerotic tries to ‘fix it” by laying more bone on top of the cancer. I suspect that the response has a lot to do with how aggressive the cancer is. Slower growing favours sclerotic
I often see people comment that sclerotic lesions are healed bone mets but I don’t believe that is always accurate, although it can be in some cases. In my case I have only ever had sclerotic lesions and yet I have extensive bone mets. I mean, literally everywhere. My MO has often taken a wait and see approach with my bone mets as it’s trickier to figure out if it’s progression with sclerotic mets.
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Sadiesservant - you bring up a good point about sclerotic lesions. Some ARE cancerous. It all depends if your cancer turns on the osteoblasts (cells that form new bone) or the osteoclasts (cells that dissolve old bone). Normally these two types of cells perform at the same rate. If one speeds up, it spells trouble. And although we often talk about lytic lesions that have created holes in our bones and sclerotic lesions when our meds allow new bone to be created where there once were holes, this may be common but isn't always the case. Your dx seems to prove that point. And lytic lesions aren't the only ones that can break bones. If your osteoblasts are turned on by the cancer, the resulting bone can break more easily then a normal bone.
In my case, I have innumerable sclerotic lesions throughout my entire skeleton that my MOs aren’t concerned about but they do focus on the lytic ones. My sclerotic lesions don’t show as hypermetobolic on my PET scans. The lytic ones do. And some of the lytic lesions hurt like hell.
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yes, agreeing with RK. At diagnosis, I had both sclerotic and lytic lesions that were hypermetabolic
Now, only sclerotic lesions are seen with no hypermetabolic activity , those are considered "healed"
I've only ever had PET scans so I don't how the descriptions or detection works with other modalities
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Thanks. I’ve never had a PET scan so it’s a best guess based on size/spread.
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My scans said sclerotic lesions in my hip and it did hurt I was taking vivomo as a pain killer.
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Happy Labor Day to those of you in the States….I know it is hard if newly diagnosed. I am struggling myself. I am still on crutches and in pain, but I will try to take a drive to Malibu and have probably a quick dinner. My surgery is Sept 9 and I am trying to be strong and not afraid.
My mind wonders to survival stats. I am so encouraged by hearing from all of you and the outliers.
I love hearing about your lives and especially your activities. I have basically been bedridden since June and so I dream of the days I can do things.
Katy Lau…thank you for your service and I wish you the best.
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Hi everyone, thanks for sharing your stories, they are very positive and its so good to know so many of you have had mets for so long and still here! Thank you!
I'm about 9 months since my diagnosis to bone mets and at first I just knew it was everywhere but I didn't know where, as I didn't ask. I now know more specifics but still a bit vague (I didn't ask size, etc) but they're on spine, ribs, hip, right thigh, but many spots of those areas.
I haven't had rads and I haven't had great pain. Just aches and lots of what feels like muscle weakness and whenever I try to exercise it would be very achy and it feels like I can't build it up. For example, I pull stuff out of the washer, then my back aches and now it "hurts" a bit when I laugh or cough or sneeze. Is this what it is suppose to feel like? I went for walks and then my things ached, my lower back/hip ached.
I sometimes worry, about what what will happen when it does get worse. I'd like to be prepared, or more like, be as prepared as possible for my loving hubby, but I guess nothing can really prepare him for the next thing. One day. In the (hopefully) far future.
Thanks for reading. ❤️✊
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NewDay123 - what medications are you on
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Hi cowgal! yes, I'm on ribociclib 600mg 3 weeks on, 1 week off. Fulvestrant every 4 weeks. And Zolodex every 3 months. Doc looks at tumor markers at blood test time. And white blood cells are of course low. Said to go to the ER if I have a fever. I've never had to. Since I started around Feb(?) the markers were in the 30s and then went up to 80s and once it was 110 (after an extra week break), and more recently around 80-90(?) maybe. After the 110 situation, doc almost started looking for the next medication. But since it came back down to 80s, he decided to continue with ribociclib.
I started ribo feeling very tired. I've continued to work. But I'm feeling very tired and stressed because work is stressful; more because I'm a conscientious person and want to do a good job, so it is stressful; I could take more sick days to rest but don't want to "appear" to be weak and sick. I'm so tired all 4 weeks. So, I don't know what to do about work and feeling so tired all the time.
Thanks for reading. ❤️
Update: so I was trying lift something yesterday and my ribs on the back right side feel very weak. So now when I try to stand up from a sitting position, or cough, or sneeze, or move around, it doesnt "hurt" but it is very uncomfortable like as if the whole area is weak and loose. So I try to hold my ribs if I cough. I've wrapped my ribs now with those elastic support wraps to help "hold" me together. It helps a little bit. Has anyone experienced this?
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NewDay - when is your next set of scans and have you scanned at any time since February? Before diagnosis I was wrapping my pelvis up with a tight velcro wrap because it felt loose and weak and I felt like I needed to tie myself together. Well sure it was, because the cancer was active and growing in my sacrum and pelvic wing. I didnt need the belt after radiation and treatment took care of the issue.
However, I will say that for months after starting the regimen it was a lot of adjusting as the mets were healing to where sometimes areas would feel weaker or muscles more pulled than others. It took time for me to walk properly again and regain muscle strength. There are still times today when moving in certain ways my pelvis feels a little funny, almost like its floating, but that resolves within a half second.
Are you on Xgeva or any bone support? I noticed this month that I have more fatigue problems and bone pain from that one single injection than the Ibrance/letrozole combo. But if you are struggling with fatigue on ribo and the rib pain for more than a few days, you should definitely raise it with your MO and see if there is a solution.
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Newday, I think I'd let your MO know about this, esp if you haven't had a scan recently. It is possible to break a rib from coughing, esp if it's weakened from mets. You can also ask for referral to physiotherapy and be prescribed safe exercises to do. Exercise oncology, esp for people with bone mets is quite new, but there are many safe things that you can do to build up the muscles in the areas and support your body.
The fatigue is also something to monitor as it could indicate a bad side effect of the medication or it not working properly.
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NewDay - I agree with SondraF and Moth. I would check those symptoms with your oncologist and ask about a bone strengthening agent like Xgeva or Zometa. I think most of us can identify with feeling weak around areas of the bones that are compromised by mets. I had a compression fracture in my spine where one of my mets were and I have to be careful with lifting and being aware of my posture especially if I am working in the yard/housework. I don't do exercise for exercise sake but do stretch, swim and walk trying to focus on maintaining my muscle strength for functional mobility.
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Newday - I am not familiar with the side effects of ribociclib (Kisqali) but I am on Faslodex along with Ibrance and XGEVA. I agree with what the other ladies say but something else to consider is that it could be side effects from your medication. For example, one of the most common side effects with Faslodex is back pain and there is a pretty long list of side effects as there seems to be with all of the drugs that we have to take. How come these drugs never have side effects like: Makes you smarter, helps you achieve the perfect weight and maintain it, makes you look younger, makes hair lustrous, etc.?
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I have developed a pain in my upper right side flank Dr Google says it could be kidney stones or maybe its something to do with the cancer.
I am back in for a blood test on Friday so I'm going to ask them about it, what I am wondering is I take a calcium supplement, I have sclerotic bone Mets which means bone is being overproduced? so maybe I am overproducing calcium? my finger and toenails are growing faster than they use to and are very strong.
Has this happened to anyone else?
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Hi Sunnidays,
How long have you had the right flank pain? Is it staying the same or getting worse? Is there anything that makes it worse? If it's persistent I would let your MO know. Generally I have a three week rule - if I have it for three weeks I mention it. The problem is, we are not immune to the effects of aging.
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New day I am just starting the same drugs as you. How long have you been on the
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I got scanned and jabbed today for booster.
My scan showed that the area they zapped in my right hip is resolved (was 5.5) but, 3 new areas have popped up, a "radiologically occult" lesion in L sacrum at 4.7, mixed lytic sclerotic lesion in the. L iliac with SUVmax of 3.1 and a mixed lytic sclerotic lesion in L greater trochanter femur with SUV max of 3.0.
I haven't heard from my MO yet, and wonder how many bone mets do they zap before they give up on a treatment?
thoughts?
thanks
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NKB -
Let me tell you my recent experience. I recently moved states and switched MO’s so I had the “opportunity” to have my last scan read by 2 radiologists and got an opinion from 3 oncologists. I was taking Ibrance/Fulvestrant and my January scan showed progression on my lower spine so my MO from a big facility chose to zap it. I was totally on board with that. Then came my most recent scan with progression in my left sacrum, cervical and a couple of nodes. The SUV numbers weren’t terribly high but the progression was multi focal (several areas).
My Wisconsin doc jumped at the chance to move me to Exemestane/Everolimus. I say jumped because he didn’t like me on 75 mg Ibrance. A year earlier when I could not tolerate 100 mg Ibrance, his choice was to switch me to Verzenio. I chose differently.My big facility Florida MO said nothing about moving meds and said she could refer me to an RO if that’s what I wanted. But honestly, she gave my case about 30 seconds of her time. 😡 If necessary, I may go back to that facility for a second opinion but I won’t be seeing her any longer.
My new Florida MO sent me for MRIs on my cervical spine and pelvis and sent me to an RO. We discussed switching to Verzenio and either staying on Fulvestrant or switching it. Her second choice was everolimus. We discussed pros/cons of both lines of treatments. We agreed that a decision didn’t have to me made immediately. I could finish out my Ibrance cycle, see the RO and we’d decide on next steps at my next appointment. I’m currently getting 15 radiation treatments on both my cervical spine as well as several spots in my pelvic area. I think I’m going to give Verzenio a try. Im nervous as the side effects could have a big impact on my current lifestyle. 💩 But so would switching to everolimus. It’s a pick your poison type of decision for me and I’m hoping for the best!
Please let me know how the discussion with your doctor goes.
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Good evening everyone! So I started treatment on Friday and so far, so good. Just a couple of headaches and increased pain. But I’m just overwhelmed. I got the results of my brain MRI today, good news is nothing in my brain but there are lesions all over my skull. And then I talked to my dentist about my dental X-rays from last week. I apparently have lesions all over my jaw. It’s just too much… I’m just freaked out that there are lesions everywhere. I know I’m getting treatment for all these bone mets but I mean, when is enough enough? I’m sorry… I’m just angry and scared and frustrated and just needed to vent.
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Katyblu
Please hang in there. I am feeling pretty much the same way. It is so hard to believe With my 5 yr good results mammogram I had put cancer out of my mind. Some of the women here with more experience can give you good strength. I sometimes search for the outlier stories to read. My onc seems so casual just saying we have good advances in last 2 years. I get no specifics from her. I’d like to show her some of the ladies post as they know so much.
I wishing you strength and good spirits.
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katyblu, I wanted to let you know I have it in my skull as well. I’m loaded from skull to femurs in my bones and bone marrow and because it wasn’t caught, spread to my stomach. It took six years with no treatment for it to spread to my stomach. I’m hoping the Ibrance and Anastrozole knock things back for you. I’ve been on Ibrance and Letrozole a little over two years.
If you get tumor markers done, don’t forget your tumor markers may go up in the beginning. That’s usually cancer die-off, and it goes into your bloodstream.
Someone please correct me if I said that wrong.
Hugs
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KBL
It is always good to hear treatment works
The best to you
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Positive and KBL, thank you. It is good to hear that treatment works. I’m trying to stay positive overall, today was just a hard day. These forums have brought me a lot of comfort, just knowing there are people going through the same thing I am and that we’re not always like how they portray MBC on tv. Thank you for listening and for sharing. I hope y’all are doing well and treatment is taking care of you!
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Katyblu - My saga doesn’t mirror yours so I have little advice but I’m sending you hug through the internet. There is no doubt that this is a sh*t show 💩 but we are all rooting for you. 🎉 Ibrance can be a life changing drug. 🤞🏻Let’s hope it delivers your lesions a wallop. 🤜🏻💪🏼🖕🏼
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