Bone Mets Thread
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I the rod put in my right femur yesterday. It's painful but a bit better since I am out of bed
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Dutchiris, I'm glad the surgery is over, and you can begin the healing process.
Carol
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Dutchiris - wishing you a smooth recovery. Bee as well as you can bee everybody.
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Beautiful sunflower Mkestrel!
Dutchiris - hope you are continuing to heal well. I had the same surgery in Dec 2019 on my right femur and femoral neck. I would agree with RK2020, I have very little mobility issues now except that I am not able to walk or do impact exercise as long as I used to. I am not a naturally flexible person and wasn't before surgery so I have some difficulty with tight quads and IT band on that side. My hip and leg on my right was also radiated so that plays a factor also. I consider my mobility about 95% of my pre-surgery baseline at this point though.
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Hi all -
Sorry it took me this long to get back on here. I've been in a bit of a fog. I had a bone biopsy done on my right sacrum area and according to my MO - it is related to my cancer. There was no rise in my CA-15-3, but she said that is why we do the PET scans. She changed my meds to Kisqali and Femara - and added back the Zometa infusions every 3 months. I had the first Zometa infusion on the 28th and it went fine. I hope I tolerate the Kisqali and Femara. She wants me to do blood work and an EKG in 2 weeks to check.
I'm not handling this well. I'm trying to find support groups - but since COVID - there are none locally in person - all zoom, which I don't mind - but there are none that I can find for MBC. Any suggestions??
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Silviah - Sorry to hear about your biopsy results. Breastcancer.org has several Zoom meetings for those of us with MBC. I am part of the one that meets Tuesday evenings at 5:30 PM Pacific Time. There are other days and times as well. I think they have posts that show dates and times listed on the top of the Stage 4 Forum. If you have any problems finding those meetings on here, let us know. I or someone else on this forum would be happy to help you find those.
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silviah, I’m sorry you’re struggling. I am posting a link to the different meetings. I usually attend the Monday at 2:00 Eastern meeting.
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I'm still a bit muddle-headed, post COVID, but as I recall, my MO didn't want to scan too soon after starting Ibrance. Maybe someone can chime in on the exact why.
Carol
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Believe60 - I tried to Google your question about how long does Ibrance take to work and I think one of the women that may have been on the original trial wrote on another site it looks like it starts to work pretty quickly but as far as showing stabilization or shrinkage of tumors, it can be 112 days or more before they are noticeable on a scan. I think Faslodex also takes a little while to show results too. I would ask your MO when they think you should be able to see that you are responding to Ibrance and Faslodex. Have you discussed with your MO possibly doing some radiation to help with the pain in your hip and maybe zap that and your other tumors? Also, I am curious since you have bone mets why your MO does not have you on XGEVA in addition to the other drugs?
As far as my response time, I was diagnosed with recurrence at stage 4 in September of 2019 with mets to a lymph node and my left clavicle. I did 12 weeks of Taxol chemo that ended December 31, 2020. I had a PET scan January 2020 that showed the the tumor was unchanged or slightly smaller. I started targeted radiation in Feburary 2020 through March 2020 and also started Faslodex and Ibrance in February 2020. My RO took some scans in her office either at about half way to two-thirds of the way through radiation to see if there was any response yet and there was not really any response at that point. I had my next bone and CT scans in July 2020 and I was NEAD and have remained NEAD since that time (I'm knocking on wood as I write this and thanking God)!
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believe60 - For timing comparison, I received Fulvestrant and Zometa on March 11. Added in Ibrance March 27. The doctor ordered my first scan in late June but I didn’t get it until July 8. You haven’t even finished 2 cycles yet. That’s not a lot of time.
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Believe60 - I agree with Sunshine99, I would think only 2 cycles of Ibrance/Fulvestrant wouldn't be enough time to know but keep us posted. Prayers and positive thoughts for you and your MO as you work out a plan for this new information.
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believe60, I’m sorry you’re having to face more bone mets so soon. I don’t have exact numbers but hormone based treatments generally take longer to show results than traditional chemo. Often, an MO will start with chemo in an attempt to get symptoms under control if there are troublesome affects from the cancer. As an example, I had a large pleural effusion when I was diagnosed as metastatic. We started with Taxol but when I didn’t seem to be responding (CT scan after three cycles) switched to Arimidex and Ibrance.
I think it’s too early to know if you are responding to the treatment after only about six weeks. I would think it’s more likely that the cancer just had time to spread while you arranged to start treatment. I’m sure your MO will provide clarity but I’ve learned not to be too quick to jump from a treatment unless it’s clearly not working. Sending positive thoughts for I/F to beat it back!
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Believe60 what imaging did you have the first time you were diagnosed with bone Mets? did you have both CT and a bone scan both time? it's very important that you are comparing like with like.
I did not have a scan until 3 months after I started the treatment. I do think the target therapies take longer to work so that is why they don't scan until 3 months after starting treatment.
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Hi, I too have developed mets to the base of skull (c1 c2 included). I had a minor Dural thickening that led to a group discussion behind my back if my cancer spread into the fluid around my brain. After discussions the likelihood was low. So i will also get rads to the base of the skull. All this was prompted by a numb chin and shooting jaw pain. My numbness was only on the left side of my chin and now all over my chin.
What SE did you experience? I have sore throat and fatigue marked for this but they never get all the SE right!
thank you
tigre
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Hi tigre, sorry to hear about the skull mets. Funny, I had a numb chin on the right side. I took a wait and see approach until I was faced with blinding headaches every day by 11:00 AM. Nothing touched them except steroids which got rid of the headaches like magic. Of course, my ability to sleep also went away…. 🙄
I didn’t have much of a sore throat with the zap to C1/C2 but lost my sense of taste for about six weeks. That was a bummer but it did eventually improve thank goodness. I don’t recall fatigue but was so hyped up on steroids that I think that one may have been overridden. LOL. Later I had to have rads to C7/T1-2 and that’s when the sore throat reared its head. It wasn’t horrible but did require some adjustment. They gave me some numbing mouthwash which ended up being a case of the cure being worse than the disease. Ultimately I just rode it out - lasted a couple of weeks so took pain pills and avoided all but softer food. Steak was definitely out! Nobody can chew that much!
I hope, as usual, the SEs are overstated and you have a smooth and easy treatment. Sending lots of positive thoughts.
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Ladies with hip mets - how do they feel?
Ive been having some problems with my right hip for the last 4 weeks or so, after one day going to the pool and walking both ways, and then wearing heeled boots for 8 hours a few days later. Its really only an annoying pain if I move a certain way, but walking for a ways it starts to hurt (then eases up) and going up stairs is kinda painful. I cant quite locate the source of the pain though - if its at the top of my pelvis (the bone that sticks out), down the front or along the side or from the glute.
This doesn't feel at ALL like my original sacral met of doom, where I continually lost function, strength, and always needed a heating pad and pain killers which only dampened the pain. It also doesnt feel like bone but more muscle, if you know what I mean. But then I worry if there is a met underneath driving all this. MO has always asked 'how is your hip?' pointing to the right one, when initially I had extra imaging on the left to investigate something that had nothing to do with cancer. I raised it with her last month just when this was starting to feel irritated and she told me to back off if exercising and let her know this coming chat (Monday). I scan 4 Jan.
Still think its a tendon thing due to the boots and overuse of muscles that just werent as ready as I thought they were for certain swimming motions. This is also on the side that was stiched super tight after the DIEP as I only had one (largish!) vein they could use, so I wonder if that has impacted range of motion and core muscles in that area as well. Ibuprofen helps resolve the issue to almost zero.
I thought I was used to anxiety and managing worries over aches and pains, but I guess not! I just wish I could move like other people, its so so frustrating.
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Thank you everyone for your replies about this seemingly new right hip metastasis. I looked back at old reports. September 2022 CT scan did not note it at all. September 2022 bone scan said “prominent degenerative changes” in right hip. The recent MRI was the first time I had an MRI of that hip, due to pain. Maybe those prominent degenerative changes were always cancer? I still don’t fully understand how different tests can show such different things. But this MRI also did not pick up a spot in the left sacrum and the L2 that the ct scan had picked up. How does anyone ever really know the extent of their Mets? I have another ct scan monday. Again, thank you everyone so much for sharing things you have learned.
(Also sondraf, I only feel my hip pain when walking. Sitting and laying down, nothing. But the met is fully into the socket. I hope yours is not a met! Ibuprofen helps my walking, but not 100%
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Thank you sadiesservant!
I have shooting blinding headaches every so often but what got me was last night i had shooting jaw pain, 600mg gabapentin later it was down from a 8 to a 4. I pick up my "roids" today and I will miss Gabapentin sleep I do welcome the relief from the steroids soon. Nice to hear about the sore throat and I am going to my in laws for xmas so if I lose the sense of taste by then I'm ok with that. lol I was sad to hear about your sore throat on the c7 T1-2 rads. I hated my esophagus on my T12 rads. I'm glad it resolved for you and I agree with that mouthwash, I rode it out as well.
Can't wait to get strapped in for my zaps.
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Ha! You’re too funny. The lack of taste thIng gets old really fast. I have trouble keeping weight on (talk about irony after spending most of my first 38 years battling my weight) so a situation where nothing tastes good is far from ideal! I was getting a bit depressed about but then slowly, slowly it started to come back. 🥳 I was so relieved.
I didn’t have jaw pain but hope you see similar results from the steroids. My MO interpreted my response as confirmation that it was the skull mets causing the headaches as the steroid reduces inflammation. The response was immediate after weeks of trying every kind of analgesic with no success. Interestingly, with the C7-T1/2 lesion, it was Gabapentin that gave me relief but in that case I was getting a lot of nerve pain in my right shoulder and down my arm. It fascinates me how our bodies work.
Let me know how things go.
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I just spent an hour with my radiation oncologist looking at the MRI of my hips (he pulled images up for me). There would appear to be extensive Mets. “Entire right acetabulum extending superiority and posterior into the ilium, nearly to the iliac crest.” He said this is about 15 cm long. And then there is a second spot in the posterior ilium. In September this was all labeled a degenerative change. I don’t know what to believe anymore. My onco is at the breast cancer meeting in San Antonio. But feeling like this is really a set back. Thought the three spots I started with were it and was hopeful about ibrance/fulvestrant/Zometa working for at least a while. I want to really enjoy and embrace this holiday season with my wonderful family. And I will. But Now I’m headed for 3 scans next week and 5 radiation dosessoon. I’m sorry, I’m just venting. I’ll adjust to this new reality.
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believe60,
I'm sorry you're having to deal with possible new developments in bone mets, but it sounds like there is still some uncertainty about the findings. I know uncertainty can also be hard and adds to anxiety. If I recall you have a second opinion appt later this December. I believe your second opinion doctor will want to look at your scan images. You may want to verify that your primary oncology center has sent the scan images and not just the reports to your second opinion doctor. I had to specifically ask medical records to send the images and not just the reports to my second opinion doctor. I'll keep you in my thoughts and prayers.
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believe60, I'm sorry you're facing so much uncertainty so early in your diagnosis but hope I can offer some words of comfort. While it is a blow, it sounds like you are still bone only. That's very good news.
Unfortunately scans are not 100% definitive, regardless of which modality. They all have their strengths and weaknesses based on the site, how the cancer is behaving and the patient. This is where the knowledge and experience of your oncologist comes in. I've found that MRI typically gives me much more detailed results but they are long scans and, as a result, expensive so my MO relies on CT. Bone scans are completely useless for me.
More mets is a bummer but it likely won’t change your treatment beyond having radiation to deal with the pain and symptoms. I’ve been zapped multiple times (I have extensive bone mets - think… everywhere!), always with positive results, and carried on with treatments. An effective treatment (I had 3 years on Faslodex) will quiet those bone mets whether there are 3 or 30.
Sending a virtual hug and positive thoughts for those healing beams to get your hip back to normal soon!
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Believe, no need to apologize.Vent away, we are here to support you and understand your discouragement. But I concur with everything Sadieservant wrote. The mets are confined to bone only, that’s a plus, and you only just started on the Ibrance combo and zometa not long ago and it needs time to work. The radiation hopefully will address the hip mets. You’re right, it takes time to adjust. Allow yourself to feel all your feelings and try not to label them as good or bad, it’s how you feel so give your emotions space. I hope the holidays can be a welcome distraction from the scans and appts you have coming up. Take some deep breaths. It really does help. Hang in there.
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sondraf, Your symptoms sound a lot like mine when I strained a hip flexor. It hurt so bad I had to use a walker for a while. PT gave me exercises which did the trick after a bit.
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wren: I think it really is a strained flexor, it was so hard to lift that leg that first day when I did it in with pool/walking and then the boots. Like it felt completely overworked and strained. I guess that put pressure on everything else!
The muscle relaxants/fentanyl for surgery yesterday really seem to have helped calm it down. Im going to take a short walk here in a bit and see where we are at (but not over do it!). Ill talk to onc about getting myself in for some PT after the holidays with the objective of getting me more physically fit rather than just daily lifestyle fit. I was doing a lot on my own for core but perhaps something more tailored for certain objectives would prevent future injury.
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Had CT & bone scan 6Dec after 2 cycles of taxol + Herceptin + Perjeta. My heavily lymph node involvement on my upper right side (1 measuring 7.5cm) are resolved except for 1 in auxillary, now 2cm (shrunk 50%).
My 8 sclerotic bone mets remained unchanged, no new mets. Report said more defined/sclerotic, fairly stable in intensity and extent. Unsure if it is healing or not resolving. How to tell?
I was checked for PIK3CA mutation because there's a trial for Alpelisib. I was positive but the trial was closed due to commercial reason. MO said nevermind, now we have another line of treatment in the future.
MO hasn't decided if 4 or 6 cycles. Largely dependent if there's nerve involvement upon 4th cycle. I'm using Paxman cold caps, also using new Paxman limp icing. This machine ice and periodically compresses 4 limps, from elbow to finger and knee to toe. Hopefully will prevent neuropathy.
Hope everyone is doing well.
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sondraf I find myself in a similar situation to you. I had a CT with contrast in July where it was noted I had degenerative changes in my right hip. I had a PET scan in November and my right hip lit up. Now I have had an x-ray that showed no lesions or impending fracture. My radiologist called in an orthopedic doc. They reviewed the images and he is going to call me about putting a nail in my femur? What the heck? Have any of you had this experience? I haven’t had any problem with pain there until this last week! Go figure! But the pain is more in the right buttock and lower back (feels very stiff). Do we go right to a nai by a PET image with nothing on x-Ray or recent CT? I just started on Faslodex and Ibrance It is just a lot, isn’t it?
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gigil, it's been my experiance that lesions won't show up on x-rays. As far as a nail in your hip, I have no advice except I hope they can come up with something else!
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I can't remember which but my oncologist told me one type of scan is very specific but not very accurate. Another is very accurate but not very specific so that is why they do both bone and CT at the start, nothing even showed up on x-ray for me.
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