Bone Mets Thread
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@divinemrsm Im sorry to read of your recent challenges but am glad you were in good hands. I hope your recovery is smooth. I had a femur rod placed in 2020 and I found that the physical therapy, while boring and frustrating, was essential.
In the past, I have been on the receiving end of great skill and compassion by many of my doctors and caretakers. I remain humbled and thankful for the people who choose these professions.1 -
@tina2 , here is the bone Mets thread !
Tina2 is having difficulty navigating this site and is looking for this thread so I tagged her.
@divinemrsm Good to hear that you are home after an unexpected 7 days in the hospital . It does sound like you had great care and I hope the PT and your recovery goes well.
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@divinemrsm it's good to hear that you are home recovering and that you had excellent care in the hospital. Wishing you good recovery and less painful next vacation!
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divine, I'm so sorry! I'm glad you're home and wish you uneventful healing.
(((hugs)))
tina, sometimes I have trouble with the site, too. I don't know why. It's frustrating.
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Thanks, everyone, for the well wishes for my recovery.
rk2020, were you having pain in your leg prior to the rod placement? How much time would you say it took you to recuperate and be able to get around at your normal pace?
I was instructed that it's better for me at this time to use a walker to get around, and I don't mind at all as I don't want to risk a fall. I was told to get up and move a bit at least every hour or two. My pain level isn't bad but I'd say when I'm walking, it feels like I was shot in the leg/hip with a bullet. I also have soreness in the groin. Extended release tylenol helps, and I've been taking 5 mg of oxycodone at night before sleep, but it is starting to give me headaches so I don't think I will use it much longer. I get worn out easily so I nap several times a day, but I don't fight it. I believe sleep is vital to the healing process.
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@divinemrsm When I was 54 I was in good physical shape. I led an aerobics class and did Zumba, Pilates, Aquasize, line dancing and walking. I was active every day. And I hadn’t yet been beat up by these cancer drugs. Then one day when I went to get out of bed, my left leg didn’t hold my weight. And at Zumba class the next day, it kept collapsing and I had to stop. Then the pain started. I thought it was a sports injury. The pain was in my lower butt cheek and wrapped around the front of my leg almost to my knee. Found out I had mets in left sacrum, both iliacs, T11 and a huge lesion med thigh in my femur. I was SO lucky I didn’t break it. Prior to surgery I used a cane to get around and I was miserable with pain. There were mornings that the pain was so bad I had to crawl to the bathroom. I used 800mg Ibuprofin to take the edge off. While surgery is never fun, I did not spend long on pain killers. In the beginning I rotated Tylenol, 5 mg oxycodone and ibuprofen. I took one med every 3-4 hours as instructed by my orthopedic oncologist. I believe I did this for 8 days. I hated physical therapy because it was so boring but it was key to recovery.
I had my surgery the morning of March 24 and they had me using my walker that afternoon. I rewarded the therapist by throwing up so my session was cut short. I was discharged the next day after being taught how to get in/out of bed, toileting and stairs. I don’t remember when I gave up my walker but I was gardening some in late May using a stool to sit. My laundry was in the basement but the stairs were great exercise so I refused to let my husband help. I was slow in the beginning but got stronger quickly. By mid to late June I was doing Zumba at a less strenuous rate. No jumping. I remember being able to walk miles in steep hills that summer. That’s something I can’t do now lol. I will get pain in my knee area where the screw is if I don’t keep my knee muscles strong. I can’t remember the name of the particular muscle but when it gets weak, the kneecap doesn’t glide properly and can be painful. I no longer have stairs in my home so I use the stair in my pool. Good luck. I hope your surgery provides you relief.
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Cure-ious, Yes, its been 11 years now since my diagnosis of ER-positive MBC. I am still on faslodex and femara and the cancer is still confined to bone (as far as I know). My skeleton is riddled with it, I've a rod in my right humerus, compression fractures in my spine and I've lost 4 inches in height, but I'm still here 😀.
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@aoibheann, are your stable for 11 years, have no progression or new lesion since MBC diagnosis?
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dear Divinemrsm
I am hopeful seeing how many times you have changed meds and treatment plans.
I am waiting for new meds. I was doing so well and feeling so good. I almost walk well and with little pain after my rod from hip To knee surgery.
I see you only have bone Mets, unfortunately I have lung, liver and bone.0 -
rk2020, thanks so much for explaining what you experienced with the rod placement. It’s great insight. It seems unbelievable that you could outwardly be so active and energetic beforehand and then suddenly the disease rear its ugly head. On the other hand, your otherwise being in such great physical shape certainly aided in your recovery from the rod surgery.
Looking at your signature line, I’m thinking you were originally diagnosed with a lesser stage of bc in 2016. Is that correct? If so, learning about the bone mets several years later had to be shocking.
I like hearing about your recovery. I, too, didn’t need pain meds for long and now occasionally take only 8 hour Tylenol. I’m about ten years older than you were when you had your surgery and have had 12+ years of different treatments, so I’m not as energetic but I still want to be as independent as I can get. Your determination and motivation to resume regular activities within reason is helpful and inspires me! (At my follow up with the surgeon this week, I was told I’ll need radiation to the femur. Did you also have radiation?)Positivetostrong, I’d be interested in hearing more about your rod placement surgery, too.
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Aoibheann- Congratulations!!! I think its just incredible to be 11 years and the cancer has remained in the bones!!! Plus, it seems you have not yet even taken CDK4,6i, which you could combine with SERD on future progression and hopefully stay on hormone therapy for many more years. It's not been an easy road, and hopefully the bisphosphonates and whatever else they come up with for bones will help you cope, but thinking of how it used to be outside on oncologists offices, where women were just lined up in wheelchairs due to their collapsed bones, this is really such a sea-change.
And I wonder about the cancer too, for example are there some subtypes of bone cancer that are slower than others to metastasize to organs specifically, or do some subtypes just grow much slower than others, it would be interesting to know…
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Anx789, cure-ious, Yes I've been lucky. I think I'm an outlier. I didn't respond to first hormonal therapy - faslodex and aromasin - and had progression. After two years on paclitaxel I was put on faslodex and femara and I've been stable to date. I'm also on zometa. However my tumour markers are rising and I'm feeling extremely tired and fatigued and pain is increasing. My latest nuclear bone scan mentioned 'some activity' but my ct scan reported 'stable met. disease'. Onc advises to wait and see, so I'm waiting…
I think it's interesting about whether some subtypes of bone cancer metastasize more slowly to organs or just grow more slowly. Do the scientists test for different subtypes of bone cancer I wonder?
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Hello, just reintroducing myself. I read on this site often since my primary breast cancer and treatment in 2009, but haven't posted in MBC or this thread since I was first diagnosed MBC in March 2022. Mets are in my bones (skull, sternum, manubrium, bilateral ribs, bilateral pelvic, spine), spleen and neck/chest lymphs.
I have been on a clinical trial for Giredestrant (oral SERD) since May 2022. It combines Ibrance with either the trial drug or Letrozole and I don't know which one I am on. My tumor markers responded well at first, though they were never in the normal range. Then in February they began to increase slightly each month. I have had about 10 falls since MBC diagnosis, but no major injuries with them. Due to an increase in pain, I had an off-trial bone scan in August that showed "new foci" in areas where I have pain. The MO said we would only monitor these. But, then a sharp increase in pain in September sent me to the ER (really could have been handled during office hours, but my oncologist and her PA/NP were all out of the office) and that imaging showed a lot of degenerative changes and cancer in my cervical spine and a mild (20%) compression fracture in my thoracic spine.
Then I had regular trial CT and bone scan on Nov 1, and both showed progression. The CT showed stable except for one lymph that had increased by 3mm (from 6mm to 9mm) and the bone scan showed new lesions in ischium, first rib and L3 and growth in lesions at L1 (my biopsy site) and T7. These are all the same areas that I've complained of pain for months. I take nothing for pain so far, but lay on a heating pad every chance I get.
I haven't been able to speak to my oncologist since this report…haven't seen her since April actually, but requested to see her at my office visit tomorrow…to begin cycle 20 of Ibrance, Letrozole or Giredestrant and Xgeva. The nurse said that the NP felt like she would NOT make a change now because the progression was minor. From what I've read, new lesions are not minor progression. I wonder if the fact that I'm on a clinical trial impacts her decision to change treatments. I got 2nd and 3rd opinions earlier, and they both encouraged me to consider an NCI comprehensive cancer center in my hometown of Dallas when I have progression. I will hear what my MO has to say tomorrow and then consult with my 2nd opinion, and perhaps change to the new cancer center.
I'd love thoughts and advice! Thank you!
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I would be worried about progression. I think you have to wait to hear what is said at your meeting and make sure you 100% understand everything what is said. I’m terrible, I sit there nodding and think everything makes perfect sense, go home and think, “hang on a sec”!
I would also be concerned by all your falls, hopefully you have looked into them.
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@margesimpson I had a brain MRI and was told it was negative, but haven't seen the report yet. My primary had lobular features, so I worry about brain and liver not being seen on scans. I am a doormat at dr appointments and agree with everything they say…also I don't hear all that they say, so my husband will go and take notes. Thanks so much for your comment!!
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Hello benisse, I'm glad you have already connected with a second opinion doc, because I would be worried if your current MO said to remain on your current treatment. New bone lesions could possibly be treated with SBRT radiation, but if you're having progression on your current treatment, it seems to make sense to seriously consider what the next treatment options are.
Also, I have a fracture in my T9 vertebrae, and I had a vertebroplasty procedure that helped a lot with the pain. I also take low-dose tramadol, which is the least potent opiate-based pain med, and I now only need one a day after I had that procedure. Living with physical pain negatively affects my mood! I'd never taken pain meds before but this one works and I don't feel weird on it.
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thats good if your husband is keeping track- maybe ask him to ask questions on your behalf if you forget! I was thinking back to when I had some broken vertebrae and it caused temporary nerve damage so walking was hard- maybe your new lesions are connected to your falls? (No idea just throwing it out there!)
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I’m cross posting because my hands are shaking and it’s hard to write, but I wanted to share:
The GI doc who did the most recent procedure and biopsy called to tell me the cancer has, in fact, spread to my esophagus and lymph nodes in that area. He is going to call my MO and the RO to discuss a treatment plan. He thinks it will probably be IV chemo and radiation. He said if I can’t get enough nutrition/hydration orally I will need a feeding tube. He doesn’t want to put a stent into my esophagus because they can be very uncomfortable and can migrate. I’m still able to eat, so hopefully I can hold off on the feeding tube. Ensure will continue to be my friend.
I am holding off telling my dad and sister until I have a treatment plan in place.
This just sucks and I’m so upset. This is not what I wanted to hear, but in one way, it’s good to know that it’s not just something in my head – although the MRI may show something there – haha.
I’ll share more as I know more.
Love to all,
Carol
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Dear Carol
So very sorry to hear the news. While you finally have an answer that explains the swallowing issues, it's not the answer you want or that any of us want for you.
You are a strong spirit and will hopefully push your way through this next treatment to a place of better health. Holding you in my heart and sending hugs and healing energy.
Eleanor
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sunshine, I’m so sorry to hear of the progression. It’s never easy to hear. I know it’s also hard to tell loved ones this kind of news, but when you get a treatment plan, you can tell them and have their support. I hope the doctors are able to get back to you soon with the new plan. Sending you hugs.
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Carol, will you have a long wait to discuss your plan?
x
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Thank you, ladies! I agree that it will be easier to tell my family once I have a new treatment plan in place. I fear that this is just going to crush my dad, though.
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@benisse how did you go? I’ve been thinking of you.
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I told my sister. I decided I wanted her to know before we tell my dad. We'll tell him today, even though the treatment plan isn't finalized.
The good news is that I don't "look" sick - whatever that means. I've lost weight, but I'm not emaciated and can eat, even though it takes me a bit longer. We went out for Thai food last night. OMG! So good!!!
MRI results came back. Basically, no changes from the last scan. I still know "something" is going on, but at least nothing blew up on the scan. haha
Carol
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@sunshine99 what do you think the plan will be at this stage? It’s strange when your appearance doesn’t match how you feel- so many times I’ve dragged myself somewhere and been told how great I look (not a brag 😂)
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Ohhhh @sunshine99 there is just nothing easy about this disease. Nothing. It will be tough telling your dad, but I hope you still get to enjoy some quality time with your family. Hugs.
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We told my dad this afternoon. It actually went really well. He asked a lot of questions, and I think he's going to be OK. He's happy with my medical care, so that's a good thing. He's a retired ortho doc, so he understands the medical stuff.
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Hi everyone. I hope you had a good Thanksgiving day and enjoyed the parade and dog show.
This Tuesday is my pet scan. Can someone answer a few questions? I am claustrophobic and need meds for MRI. Will I need meds for this machine and how long does it take? I had one before, but thanks to an MS brain/fog, I can't remember the machine and need for valium. I think they go from chin areas down to knees? I have cancer that MO said was "old" in occipital lobe, but guessing that'll be too high up on imaging? One more bit of delicate questioning, I was hospitalized for severe colitis 3 1/2 weeks ago. It's still rumbling and sometimes the stool is ok, other times, diarrhea. If I stick to fluids tomorrow do you think that will help? I guess I'll use an adult diaper just in case. Nervous about the whole thing. Thanks
Laurel
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@irishlove im probably too late but it is less claustrophobic than the mri in my experience. Your head will pass through and you’ll be out in about 15 mins. It’s also not as loud. I hope your experience is uneventful.
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They can do the brain- I had one so maybe you’ll have head to knee.
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