Bone Mets Thread
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I have a problem, ladies, and I'd like to hear your take on it.
In early December I had an operation on my right knee to remove a shattered meniscus and to stabilize a stress fracture that was assumed to be caused by compensating on the right side for LE in the left side - I often limp because of numbness in the left leg. The operation was a great success and within about a week I had full movement again and absolutely no pain. Then, suddenly, lots of pain again, but different to before. The surgeon who operated ordered a ct scan which I had on Thursday. This showed another fracture, totally unrelated to what was there before, and they suspect the bones are very weak.
I've been on xgeva for 10 months, and zometa for 6 months before that, so how can the bones be weak? Is it not working? Anyone have any ideas?! Thanks
Nicky
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Nicky J,
When I read your post my heart went out to you. Someone told me that they didn't agree with me but I can only tell you what I have seen and experienced with my dear friends who I went to office visits and spent time in the hospital when they had surgery. What all these women who had multiple fractures had in common is they took long term Tamoxifen. Five women, five hip replacements and knee replacements along with other fractures and the one thing in common was Tamoxifen. I really think that a study needs to be done on this drug and fractures. Have you looked into this. I'm not a doctor only a cancer patient who myself will not take Tamoxifen because I have had osteoporosis in the past and will not subject my body to more fractures.
Good luck with your outcome. Do some research on this site and about your meds and maybe there is something that you can change to make things better. There are so many different medications to treat and if your cancer meds are causing such (which you don't know at this time or not) then change treatments.
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M360,
Thanks for your reply - and actually it is quite timely! My markers are rising and my onco thinks is tamoxifen that's failing. It's already in place to stop tamoxifen and start faslodex in a few weeks! He just wanted to get me through the holidays first, so that I wasn't dealing with new se's while I had a houseful of family😊
If that's what caused it, hopefully things will level out again. My fingers are crossed!
Nicky
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Nicky, only guessing here, but it could be Zometa and Xgeva were working but not quickly enough? Also supposedly Tamoxifen can cause bone loss in some premenopausal women. If you're postmenopausal, it should be OK except, of course, if it can't keep the cancer from its destructive path. Glad your doctor is making the switch! Fingers crossed for you, too!!
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Nicky, from what I understand, most of the treatments (aromasin inhibitors and chemo) can cause bone loss/thinning. I was osteopenic before breast cancer. Now I've been struggling with a stress fx in my foot just from moderate walking - it's healing, but very slowly. Very frustrating. I was first on zometa, now xgeva. I try and stay compliant with taking calcium/mag and vit D. It's all defin. a challenge, esp. when one of my verteb. is approx. 90% cancer - very scarey.
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Heidihill,
I'm pre-menopausal - I'm 42. Haven't seen my onco yet since the issue with my knee, but I will be at the hospital for herceptin on Tuesday so I'm hoping to get to see him for a few minutes. It's interesting to get all of your opinions before I see him - it helps me get my questions ready!
SyrMom, my knee is as a result of moderate walking too. I also take my calcium/ vit D. C2 has gotten so thin it's barely a shadow on the MRI. I think its time to take stock and re-evaluate my tx.
Nicky
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Nicky, I was diagnosed at 32. I had mast, chemo and completed 5 years of tamoxifen. Now 39 It is back now mets to sternum and poss other places, pending pet scan Tuesday. The first thing the dr said is hysterectomy to put me post menopause. Then rads followed by post meno HT. Wonder what you dr thinks about putting u into menopause. Lots more meds for post meno.....
good luck !!! Hugs!!0 -
Kate, sorry you had to join us here in the stage IV thread, come back and let us know what the pet scan says.
I discussed this with him only a few weeks ago, but he prefers ovarian suppression to removing everything, that the advantages do not outweigh the disadvantages.
Nicky
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question for my friends in this board. Do you think life style changed will prolong my life? Better eating et all
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Maureen, I'm glad you asked that question because I've been wondering the same thing. I got my bone mets diagnosis just before the holidays and I'm an emotional eater so the combination was not good. I can't figure out whether I should worry about losing weight (I could stand to lose 30 pounds) or just focus on eating well at this point. I'd be curious what lifestyle changes people may have made too and if they think it made a difference in their QOL and/or length of life.
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I could stand to lose weight too. Since my diagnosis of mets I'm paralyzed with fear. Smoking too which I know isn't good. I struggle between two thought processes. Enjoy everything while I can or change everything while waiting for healthcare improvements. I'm interested in thoughts from friends on the boards. And yes I take happy pills bargain with god deny the diagnosis and plan i envy other people and obviously ramble lol
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Maureen,
Sorry you have to be here. Here's how I look at it. Maintaining good health habits, via nutrition, exercise, not smoking etc., is good for all of us. As a stage IV patient, I am certainly more conscious than ever of taking care of myself, but I have not resorted to any extreme or restricted diets. I don't smoke, but I enjoy wine in moderation. I don't eat meat often but am happy to indulge if I get a craving for it. I try to buy organic, minimally processed foods but never beat myself up if I don't. I love well made pastries and desserts and have to fight to keep from overindulging. I just got back from 2 weeks on cruise in New Zealand and Australia, including going to the Taste of Tasmania food and wine festival. I ate whatever I wanted and thoroughly enjoyed myself. Do I think my usually good diet will prolong my life? Do I think my down under decadence will shorten it? Well, I have no way of knowing but I do know that I am happy and feel that my life is well lived, even at stage IV. I try to keep myself as healthy as possible while still enjoying life's pleasures. I think that is what will make my life good no matter how long or short it turns out to be.
Caryn
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Caryn, I'm with you. I think things need to have a balance. I've pretty much cut soda out of my life..drinking too much anyway. I drink more water than I ever have. I try to eat less and eat better. However, I still enjoy treats and if I go out to eat with my family or friends, I enjoy myself. I won't prohibit myself of those things that make life bearable. I don't know if I'd want to face life if it was just filled with celery and carrots.
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thanks ladies. I hear so many stories both ways. I still feel good planing a cruise still working but always have that bus on my tail. I'm thankful for where I am right now but instead of looking forward to the future. I'm terrified of it. Instead of making clear cut decisions I question everything I do Starting to think I'm losing it
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M360, I am so sorry that this cut into your knitting pleasures as well.
And I am glad you described the "clawing" of the hand. My problem exactly. I hate it so much I stopped taking the damned stuff. I see her on Thursday so it's not like there will be any damage done. What did your doc move you to? Is it much better now?
JimmeBell I hear you! Start cutting off the quality of life and what's the point, really?
Scorchy0 -
Scorchy & M360 - I love knitting, too! I learned a couple years ago when I was invited to join a group of amazing ladies who work for charities (I also work for a charity). It gives me so much joy, and I totally get you on how frustrating it is when that's restricted…even temporarily. We need the things that keep our heads right!
I'm a runner, and I haven't been able to run because of my mets. It really helps my mental wellbeing, and also my sleep, so I'm trying to figure out what I can do that will feel as good. My radiation oncologist suggested swimming, which is great, but it's restricted to pools/water…what I love about running is exploring outdoors…but I'm sure i can explore walking too, just not as far and fast.
Mets/Cancer are forcing me to do a lot of reconfiguring of my lifestyle…and fast.
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For those with bad quality of life on Femara: I also did Femara for 4 years. The first 6 months were bad with lots of joint issues. This relaxed a bit. I also had bad arthritis in one knee & could hardly walk. When I developed new bone mets, by onc switched me to Aromasin & Afinitor. I think the Aromasin is a lot better---I don't have joint issues anymore & I'm still doing Zometa every other month now.
Just a thought--would love to see some of you getting back to knitting & things you enjoy.
Terri
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reactions to the AI's really vary from person to person, so if one is intolerable, another might not be. I've had minimal problems with Arimidex but I know it's been awful for others. A colleague of mine was in agony on Aromasin. No way to know until you try it.
Caryn
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Thanks Terri. I think my doc suggested Aromasin this when I saw her back in September, but I thought I could tough it out. I'll look forward to knitting again--and even snapping my fingers!
As you say, MsTee, we need the things that keep our heads right. I hope you get back to the physical things you love so much.
Scorch0 -
I just had to share with you guys the chuckle I just got from myself! I was reading everyone's post and I proceeded to look for the "like" button !!! My brain is silly sometimes!! However, I think a like or dislike button would be great as a lot of your posts are really helpful and informative!!!
hugs everyone!!0 -
Proof, Kate, that we have all been Facebooked. Though I would like an opinion button too. Or an easier way to follow threads.
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agreed schorchy!!! I would have liked but no button for that!!
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Hi!
I've been on Anastrozole for about 3 months now. At first I had terrible headaches, sore hips, thinning hair and woke up stiff in the mornings. I'm happy to say that most of these SEs have subsided, even the hair thinning and I crochet like a fiend!!
I think that for me the hand exercise is actually helping with my stiffness but I never did have any real trouble with my hands during any of my treatments. knock wood!
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As for scans I never had any until after my tumour markers started to rise. It was suspected that I had mets to the right femur but had no symptoms. After that I went back to monthly MO visits and lots of scanning (xray, bone scan, CT, PET, MRI, and another PET) until a CT guided biopsy confirmed it.
I had radiation in July and still no pain in hip/femur area - other than from AI.
When I asked my MO about further scanning to make sure the mets were gone he said he would continue with bloodwork but I wasn't able to have any scans unless I had symptoms. In that case he'd do a CT or MRI - but no more PETs until 1 year post radiation.
Now I'm back to 6 month MO visits with tumour marker bloodwork prior to each visit for the next 2 years - unless something changes.
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Hi all,
Thanks so much for the above posts. I'm on Femera and my hands hurt, mostly in the thumb/hand joint. I thought it was the onset of arthritis, but now I'm thinking it may be the Femara. Not something that occurred to me before.
I'm like aaoaao - no hand/eye coordination whatsoever. My grandma spent hours trying to teach me to knit or crochet and I'm hopeless. I've tried to paint/draw and have the same problem - my brain and eyes know what to do, but it doesn't translate to my hands. The only "talent" I have with hands/eyes, is that I type fast, but I can do it with my eyes closed.
Lucky for me, my main hobby is photography and I'm doing some photo editing, which I can do despite the joint pain in my hands. Here in NZ, we don't get routine pet scans or MRIs, only CT scans and bone scans. My oncologist says they use both to evaluate and both are necessary, particularly as the bone scan can give a false positive. My initial bone scan lit up like mad where my mets were and the CT scan showed things like how eroded my vertebrae is. The oncologist let me see both on the computer screen; it was quite interesting although also a bit gutting as it was worse than I imagined.
My next appointment is my one year follow up with the orthopedic surgeon to see how my pin is doing and if there's any bone regrowth. It's not til February 13 - no doctor appointments for two months! I'll likely see the oncologist again in March. When I saw him in November, I asked him about the chronic fatigue and he thinks a lot of it is that my estrogen has been pretty much suppressed and that this is a bigger factor than the Femara. All I know is that I really want a nap about 2:00 every day and it's a struggle to stay awake. And at least once a week, I'm in bed by 7:30 pm (I get up at 5 to go to work) and sleep straight through. I'm going to see if my managers will let me work at home at least one day a week (preferably Wednesdays) so I can sleep in until 7 mid week. They're pretty flexible about things - after 2 weeks off, they're letting me work from home this week to ease back into the routine.
Take care,
Terre
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On December 27th, my wife had her first PET Scan since the biopsy this spring, PET in June and radiation in July and September - during which time she has been on daily Arimidex and Xgeva injections every three months. The test results came back earlier this week and we are scheduled to meet with the oncologist on Thursday morning 1/9/2014.
She has no hypermetabolic soft tissue lesions in the head, chest, abdomen or pelvis which means there is no organ involvement; for which we are very grateful.
However, the scan did show the following:
New bony lesions bilaterally in the scapula (shoulder blade) with the right having an SUV Max = 7.
A new small lesion in the lower left cervical spine at the level of C6-C7.
New rib lesions, right greater than left.
Multiple new bony lesions in the thoracic spine.
A new lesion in the right sternum that has SUV max = 7.
New hypermetabolic skeletal metastases in the lumbar spine. Index lesion in the L2 vertebral body with SUV max = 10.
Multiple other new bony metastases in the pelvis, including a left iliac lesion with SUV max = 10.
After her surgery and chemo in 2000, she was on Tamoxifen for five years and then Femera for another five years. Then the recurrence in the spring of 2013 after she had been off the drugs for about three years.
I am worried that her cancer is not responding to the Arimidex and that it could have become resistant. I was not expecting the new bone mets.
Could it be that the Arimidex just has not had time to get it under control?
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I dropped Femara soon after I started. My joints felt like they disintegrating!! there is a Femara link somewhere in BCO
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Hey all. I'm STILL waiting on my chemo break. Was suppose to happen before the Holidays but didn't because my MO wanted to wait for my next set of scans. She said if the scans and my antigen numbers were good we would go on Aromasin for a few months and see how I do on it. My scans came back good but my antigen numbers dropped below my normal range and then the following month rose above my normal range. So now she is rethinking the chemo break. She's running the antigen numbers again to see if they're rising still. She feels good the scans are clear but the numbers have her a little concerned. She still thinks I'll get the chemo break but she won't say for sure until she sees the next set of numbers. I see her again on 01/21 and then the final decision will be made. I know she is trying to be careful which I truly do appreciate. However, that carrot being dangled in front of me is getting frustrating. I know I have it better than other people since the mets are not widespread and I will eventually get that chemo break. I also celebrate that I have clean scans. I just needed to vent a little about the highly anticipated chemo break since I've completed 24 sessions of Taxol and feel a little done with it for a bit. The side effects have been building up and never really go away at all now. I know I will get that break but the when is the question. I'm just going to keep the faith that today I finished the last session for a few months.
I wish the best for you all and appreciate the great support you give. I also value this place to vent since others don't understand. My sister doesn't understand why I don't just demand the break and my son is afraid that if there is any indication that the cancer is progressing that I need to stay on the chemo. Neither can truly get that there are many factors to consider and it isn't a black and white decision. I know you ladies here truly understand how complex this disease is and treatments can be a crap shoot. When you give advice it's based on knowledge of breast cancer, txs available and side effects. You all have been there too. I just want to say thanks.
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Aw aaoaao, that's crippity crap crap! As you say, to have the carrot dangled in front of you, especially over the holiday period, and to be still waiting is rotten. We all get that it's great your onco's being thorough, but it doesn't make the waiting any easier! Hope you get the answer you want on the 21st, and that you get your break straight away!
Nicky
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Hi everyone. My mom's onc appt has been postponed again because of the weather so we won't find out for a few more days whether or not he is taking her off Aromasin or not. Her pain has improved in the sense that the leg/hip pain finally let up, but it seems everyday a different joint or muscle hurts and many of these pains are high on the pain scale. Starting to wonder if this isn't SEs from Aromasin. She's been on it for a year now and before her Stage IV dx last year she had just finished 6 years of Femara and previous to that 5 years of Tamoxifen. Perhaps this is just a case of really bad bones from years on these meds? Does anyone else experience such debilitating pain from Aromasin? Onc was still scratching his head about it at the last appt. All of her bone density tests were fine before her stage IV dx. Finally had another one done a couple weeks back -- the first since starting Aromasin last year so we'll see what the results show. In the meantime I've got her a swimsuit, bathing cap, and Aquafit classes for people 55+ as a Christmas gift. She's let the pain stop her from getting any kind of exercise except the odd walk around the grocery store! Maybe getting those joints and muscles moving again -- gently, of course--will help?
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