Bone Mets Thread
Comments
-
Cure-ious, it make sense . Your knowledge is equal to a doctors and I appreciate the comment . My TM are 42 now, slowly increasing over the years from 29. This Pet scan showed numerous new small spots and I expected the TM to be a lot higher. I’ll have the bone biopsy results maybe by the end of this month and shortly after that I am going overseas for two weeks . What worries me is , to have the shots right before the long flight and being outside USA with who knows what kind SE. If Faslodex only works for me I should consider myself for now lucky. I just want she to wait after I come back. Unfortunately, it’s hard for me to trust most doctors.
hugs ❤️. Elena0 -
Gigil, our disease is unpredictable and it’s hard to know what is the right approach until we see results. I think oncologist are like shooting a target in a dark room with the hope that they’ll hit it.
1 -
Just guessing, Elena, that your MO imagines you would be more comfortable having started treatment, most people find it a relief, esp as faslodex often has no symptoms other than a sore-ish butt for a couple of days. Nevertheless, it takes a few months to kick in fully, so maybe a 2 week delay wouldn't matter?
0 -
Sondra- Well based on my PET/CT last week, it looks like the pain is due to a new met at my left T-11 and an increasing one on my left sternum. There are other new or increasing lesions throughout my spine and pelvis as well. So I’m off Truqap and just started Xeloda. Still trying to process all of this, so I’ll have more to say soon! Thanks for asking!
1 -
Hi everyone, Im curious for those of you that have developed more bone lesions after your initial stage 4 dx were you taking a bone drug like xgeva? Maybe I'm really wondering if Xgeva really prevents mets from starting in the bones? Yes I know we are all different. But still,there was no place to enter this in profile questions.
I was on Xgeva for 4 years and started getting jaw pain so quit it. My onc is bugging me to start it again. I never got onj but needed 2 root canals. The Xgeva doesn't stay in your system like the bisphosphonates do but those hurt my jaw more. After 3 years I'm thinking of starting Xgeva again. Help me decide please.
GAILMARY
0 -
gailmary I was 7.5 years on I& L and for 6 years took Xgeva. Onc and I decided enough time on Xgeva and 18 months ago I quit it. Since then progression in bones. I am now on Orserdu and back on Xgeva and it feels right!
2 -
oh Katie, after all you went through to get the true cap well that happened to me too, and I don’t know until Monday if that what I’m gonna start best of luck to you
0 -
Well, cr@p on the Truqap failing both of you! That sucks. My tumor markers continue to rise but some of my lesions appear to be shrinking so maybe it’s working for me.
My next MO appointment is on 5/1 with labs the day before. Next scans will probably be the end of May.
I am continuing to have numbness in my feet. Don’t know if it’s related but I will bring it up again.0 -
Question, have any of you had a blood biopsy and if so, did it change your treatment? I just had one drawn a week ago. No results yet.
0 -
@gigil I had one in 2020 with no mutations. I was on Ibrance and Letrozole. In August of 2023, I felt the Faslodex was failing me, so my doc did another one. I had the ESR1 mutation from Letrozole. Switched to the new FDA-approved Orserdu. I’ve been on it six and a half months. I believe it’s working.
0 -
I'vd had two. The first one was around 2022 (?) and the second one was in 2024 after I progressed. The second one showed the PIK3 mutation, and since Ibrance failed, I started on Truqap.
1 -
kbl how are you tolerating the Orserdu? sunshine 99 how is the Truqap treating you? I am still waiting for my results.
0 -
@gigil I’m in the middle of month seven and believe it’s still working. I had bronchitis and no appetite and nausea, which is a symptom of my stomach mets, but I wholeheartedly believe it’s just from the bronchitis. My husband is nervous, but I’m not. Tumor markers again on May 21st.
1 -
I seem to be doing OK, too. I have labs and MO appointment next week and will have scans the end of May. My tumor markers continue to climb, but MO looks more at scans than tumor markers.
Carol
0 -
kbl, it sounds like you have a follow up soon. Stomach Mets are pretty rare, aren’t they? Are you having any more side effects? I have been like sunshine 99 in that my markers go up, but my scans stay relatively stable. My Onco follows markers, so when mine went up she changed my meds, even though scans are pretty close to the same. We did a blood biopsy this time to see if there are any mutations. I hope your markers go down and sunshine99 that your scans come out great. I feel like a pincushion lately with labs and scans. I feel pretty normal, maybe a bit more fatigued with my new prescription of exemestane. Next week I have to add Afinitor. I never look forward to getting used to new meds.
0 -
@gigil My next appointment isn’t until May 21st, but if I feel I’m having trouble, I can go anytime. Stomach mets are more rare than liver or lung, but with lobular, there are quite a few I’ve met online who are in the same boat. Sometimes it’s on the outside of the stomach, other times on the inside like mine. It also goes to the peritoneum more frequently. I would not know if it’s there unless I have a laparoscopy. I don’t feel that’s necessary because it wouldn’t change my treatment. I hope the addition of Afinitor doesn’t affect you too badly.
1 -
Had a bone biopsy and aspiration of fluid of the hip yesterday which was interesting. Waiting to see whatbthat comes back as, but this is the only real active area of cancer but its definitely got a house party going on. Sore today for sure!
@katyblu only thing worse than treatment change is treatment change whiplash!
@gailmary I wondered the same but honestly the only new mets I've grown have been quite small do I'm assuming thr xgeva is working at some level, along with managing fracture risk.
1 -
Sondra - Hahaha yeah… all the different treatments since January (Piqray, Truqap, Fulvestrant, and now Xeloda) have me all over the place side effects-wise! I really need to figure out the big D issues I have. I hate waking up in the middle of the night to go to the bathroom!
Wishing all you ladies the best!
0 -
Hi just a little update,
I just came back from ER. I started Zometa on Tuesday. I was prepared for the flu like symptoms, The symptoms came on Wed but were manageable. a little achy Mild fever took tylenol felt better but not any worse. Sunday, fever shot up to almost 102, could not move. Every bone in my body hurt. Chemo 10 years ago was a picnic compared to how I felt. The severe pain was almost unbearable, I thought something else was going on. Started my antibiotics that I was instructed to take with fever of 100.5 or over. Took tylenol but was still miserable went to ER. Blood count was low but not bad everything else ok. All attributed to the zometa. I am now feeling much better. Have any of you had such severe pain after Zometa?
0 -
Yikes! I am sorry as that sounds like misery. I am a long time stage IV so my memory isn’t perfect. I used an older bone strengthener many years ago (Aredia) and many folks recommended taking Claritin after the infusion to help with bone pain. Hopefully some of our other members, either currently on this drug or with a better memory than mine, will chime in with some tips. Take good care.
0 -
@jen1 I’m sorry it was so bad. Yes, mine was horrid for three days. I felt like every bone in my body was breaking. It was the worst flu-like symptoms ever. I made it through with a slight fever and haven’t had a reaction since, so I hope that gives you some comfort for the next one.
0 -
@jen1 What a terrible experience. And I thought mine was bad. I was naive, did not belong to any breast cancer groups and got my first Zometa the same day I received MBC confirming results. My aches started in the evening but woke me up with excruciating pain in every bone. I honestly thought that something serious was happening. This couldn’t possibly be a normal effect, could it? The only thing that kept me out of the ER was my terrible experience there 2 weeks earlier. So I called Moffitt in the middle of the night. Moffitt is 3 hours away but where I was getting my care. They talked me through things and by early the next afternoon (about 24 hours after my infusion), my pain was manageable flu like body aches. Taking
Claritan the day before, of and after did not help me and although most people who get a reaction only get it the first time, I was unlucky. I’m so darn sensitive to meds. What was life changing for me was getting a bag of IV fluids with my Zometa. Voila! No side effects at all. After a couple of years getting extra hydration, my doc forgot to order it and I told the nurse I’d try without it because maybe my body had changed. I had nowhere near the same reaction but I did feel flu-ish for 2 days so from then on, I got fluids. Why suffer any side effects if you don’t have to?
‘I hope your next infusion goes well. Good luck.1 -
exbrngi/kbl/rk2020 Thank you ladies for your response, advise, and encouragement.
1 -
RK2020 - You are about the 3rd person I've heard on here say that you got fluids with your Zometa infusion and that it was so much better with them. I'm supposed to have my 3rd infusion this coming Thursday and I'm dreading it, as the first two didn't go very well. I already ache all over from Verzenio and Faslodex side effects; don't need more! When I'm done here I'm going to message my onc and see if he would be amenable to going with fluids too this time to see how it goes. He's been very open to having them drag out the infusion for 45 minutes (another tip I got here), but even that isn't doing the job. He says he's open to doing what I want as long as it's feasible. Maybe fluids and 45 minutes will be the answer.
0 -
My first two infusions were the hardest, with fever, nausea, aches, etc. After that they were pretty much a non-event. I don't know why the first ones are so hard. I also heard that taking a Claritin or something like that would help. I did take anti-nausea drugs the first couple of times. I'm not sure how much they actually helped.
0 -
@threetree @jen1 Good catch threetree. I forgot that I also had them extend infusion to 40-45 minutes. I’m not taking it anymore so out of sight, out of mind (what’s left of my mind anyway). 😂
0 -
RK2020 - LOL re what might be left of your mind. I sure know the feeling! I've messaged my onc and now waiting to see if he's open to doing the fluids too. He always says he's willing to do anything I request/would like, as long as it isn't officially off limits for him to do it or whatever. He says, "We're here to serve you!" I'm hoping that statement will include fluids with Zometa.
0 -
RK2020- Just heard back from my onc's office and yes indeed he just put in an order for the fluids and will continue to draw the infusion out for 45 minutes. Yay! I'll report back after this Thursday infusion.
1
