Bone Mets Thread
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Thank you, RK2020. I really appreciate the explanation and resource.
I remember people taking Claritin to help with Neulasta.
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Star, I've been on monthly infusions of Zometa since May 2020. The first one was the roughest with pretty bad nausea the night after the infusion. Compazine didn't really help much, but at least I never vomited. The second infusion was a little better, and after that, I've really had no side effects other than the occasional mild fever for 24 hours or so. My infusions take about 30 minutes.
Regarding the ONJ (osteonecrosis of the jaw), they always ask if I plan to have any dental work, like extractions or root canals. The nurse told me that I should be off Zometa for 3 months before any invasive dental work. I have cleanings every three months, but have not had any jaw issues to date.
I take a Claritin (or generic) daily, mostly to help with my perpetually drippy nose.
Carol
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Star....I'm also on Zometa monthly. Like many others, the first time was rough, with bad nausea afterwards. At my infusion center they were doing the infusions over 20 minutes so I asked the next time for 30 minutes instead. I also tried harder to be well hydrated the day of. I've also tried the Claritin but I usually forgot to take it until the day of so I'm not sure it has much effect. I really haven't had any difficulty since the first one. I made sure I was up to date on dental work before I started, and my dentist was very clear that the biggest risk was extraction. Usually your oncologist will ask if you've been cleared by a dentist before starting Zometa.
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I'm on my second cycle of Ibrance (125 mg) and Faslodex injections. I have hardly any side effects except for mild fatigue. My white blood cell count went from 6.5 to 3.2 after the first round but my doctor has not decreased my dose. I take it within 30 minutes of my dinner each night as the pharmacist suggested. My dr mentioned Xgeva at our last appointment but hasn't started me on it yet.
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thebar1957- sounds like you’re doing great with Ibrance. The white blood cell count is excellent and no reason to lower the dose. I’m on monthly Xgeva shots and so far, so good. I just started my 4th cycle of Ibrance so not a ton of experience, yet.
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Hi all,
Just got bad news today.
I have been having pain in both of my thighs for about 4 months , started after my 3 rd cycle of TCH and been asking doctors about the pain. No one paid attention.
My pain got worse 2 months after finishing the chemo, finally I convinced my pcp to do MRI and looks like I have Mets in both of my thigh bones ( Femur)
I 'm scared because I may have turned from HER 2 + to TNBC.
I may have to go through bone biopsy after scans are done.seeing MO tomorrow.
please guide me. scared and worried not for me but more for my husband. We both are in 70s
And lot of stress on him caring for m
Thanks
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hi docy- why do you believe that your receptor status has changed to TNBC?
If you’re worried about the bone biopsy procedure itself - try not to be. It isn’t as bad as it may sound. You’ll have anesthesia and it is over quickly.
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Hi Docy, I’m sorry to hear this news.
I don’t have bone mets in my femur, but like you, I had a bone mets progression very early (actually found after my second round of chemo). Give yourself some space and time to process this and know that it does get easier.
Why do you think you have switched from HER2+ to TNBC? Since you are on Kadcyla, it seems like your MO still thinks you are HER2+. My MO also started me on Kadcyla after chemo, but I didn’t tolerate it well, so he let me just do Herceptin and Tamoxifen. Many people do very well on Kadcyla, and my MO was/is very optimistic about it’s ability to keep the mets under control. If my spine met progressed, I would be willing to go back on Kadcyla.
My MO also encouraged me when the spine met was found by saying that he has lots of treatment options at his disposal. Based on my research, I don’t think he was “sugar coating” things. There really are lots of options at the beginning of this disease. I try to focus on the present (not easy, but it helps).
This was not the retirement that you and your husband planned, but I hope you are one of the people who does really well on the treatment and gets decades of additional time to be with family. Check out the long term bone mets thrivers on this forum; it’s very helpful and comforting
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Hi Docy, I agree with Olma that the bone biopsy is not so bad. I hope it will be easy for you. I'm so sorry that the doctors didn't take your pain seriously. That is so frustrating. Now that it is identified, lets hope a new treatment plan will help.
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thank you Cynthea and star 2017 for your kind words and encouragement.
Cynthea, I had weakly positive HER2 by FISHtest, breast tumor responded completely with TCH, but had micrometastasis in lymph node, That was neg for HER 2, by FISH test. That is why I definitely need bone bx. If i have TNBC.
My case has been mis managed from the beginning. My doctors never did lymph node bx and tagging on positive 2 lymph nodes on Scans. The sentinel nodes that were removed had micrometastasis in one out of 5.
So we do not know if the surgeon got those positive nodes that were seen on scan.
I took 3 opinions. One said I should have ALND and other 2 said, radiation. So I chose radiation.0 -
Docy, I’m sorry you find yourself here. I want to let you know I’m also one who was not diagnosed immediately. Long story short, it took six years to even identify what was storming through my bones and bone marrow, until it finally spread to my stomach. I have cancer through my whole skeleton, including my skull and down to my femurs, as well as my stomach. I was diagnosed Stage IV from the get go and have been on treatment for two years. I want to give you hope. It will be eight years in August for me since I was first told it looked like I had metastatic cancer. I’m still here. Hugs to you.
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Docy,
You may want to consult with an oncological orthopedist regarding the cancer in the femur. I had this in both femurs, and it arose rather suddenly after I was on immunotherapy for a short time. An oncological orthopedist can advise as to how serious any injury is and whether surgery might be appropriate. Not trying to scare you -- just trying to make sure that you don't solely rely on your MO for this.
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Hi Docy- please do not fret about the bone biopsy. They give you plenty of pain relief and relaxing medicine.
As for the lymph nodes they left behind, that might actually work in your favor. Because the lymph nodes are important for the immune system. The chemo you received should help those affected nodes.
Radiation for the bones should help you with reducing the pain. It helped the bone mets in my hips a lot.
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KBL,BevJen,GoKale,
Thank you all for your response.
I will definitely ask for oncological ortho, great suggestion.
Hoping I can continue on Kadcyla , target therapy for HER2 not on big guns such as AC. I do not know if I will tolerate another round of strong chemo at my age.
I finally feel that I have come to terms with this cancer and ride along what ever it brings.
Thanks again.
Hugs
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Well ladies I had the bone biopsy yesterday and it was no fun! Apparently the fentanyl and versed combo does not work great for me. I felt pain even though they gave me a little extra when I said that I could feel it. Later the radiologist was surprised that I said I was awake and could hear them and could feel it. He said that I got so quiet that he thought I was asleep. Well, no I was not!. I was just trying to lie really still since there was a needle in my back. What I would like to know from those of you who have had the procedure is what kind of pain you had after. I have been in quite a bit of pain since right after the procedure. I can't even take a deep breath without awful pain. Last night I had little sleep. I could not find a position that I didn't have any pain. Anyone else have this??
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Carolina, I'm so sorry the procedure was rough on you. Mine was on T4 of my spine. Was yours on your femur? Tylenol seemed to help my after-procedure discomfort,
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Carolina-girl 63 - My bone biopsy was in my sacrum so it was sort of on my very lower back to one side. So breathing did not cause me pain. I think I took Tramodol for the pain. I suggest calling your MO to see what they suggest for pain. My MO said he doesn't want me to just "suffer through" pain if it can be helped with meds. I think it's also suggested to take pain medicine before it gets too bad; better to stop the pain before it gets too high of a level.
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Sunshine99 It was on my T11. So just about center of my back. So far over the counter has not helped. But hoping in a day or two the pain will subside. I was honestly so surprised that the little "cocktail" they gave me did not work or make me sleepy. Usually anything like that works really well for me.
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I didn't have much pain after my biopsy, maybe a little more than was already happening. However, my biopsy was on the pelvic bone.
Turns out I had my bone med wrong -- the MO is recommending Xgeva, not Zometa. I'm still worried about the ONJ, but the MO feels pretty strongly I should take Xgeva. I just wonder if I really need it. I will be seeing my orthopedic oncologist next week, and may bring it up to him too. My guess is he will agree with the MO. I guess it's time for some dental check ups!
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star, those drugs do help prevent fractures and breaks that might happen because of the cancer. I think whether it's worth it partly depends on how extensive your bone mets are, and how fast growing they are.
For me, I've been on Xgeva for a while with no side effects. However, I still have some worrying progression in my bones - I'd hate to think about how much worse it would be if I were NOT on Xgeva. But that's just my situation. Others here are very stable with limited bone involvement, and these bone meds might be overkill for them. Best wishes.
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Thank you for the insight, buttonsmachine. It's very helpful. I wish you the best.
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My MO and I will not do bone biospy they are not reliable enough so I cant help you there....sorry you had pain.
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Do y, I have had two bone marrow biopsies. They sound dreadful. They are not. The idea is so much worse then the procedure. I agree with what others have said: You are put into a twilight sort of mode with drugs similar to those used for colonoscopies. I felt no pain, except for the emotional pain of anticipation. Try not to be afraid of the actual biopsy procedure
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Nicole, why do you say "My MO and I will not do bone biopsy they are not reliable enough"? Did your MO say that they are not reliable?
Bone biopsy was the only way they could confirm about my metastases to the bone.
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all the research I have done...shows that bone biopsy are not nearly as accurate as soft tissue...My MO agrees based on the fact that she has done thousands of each. That doesn't mean she wouldn't do it...but would prefer soft tissue and I would as well.
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NicoleRod - Many of us are bone mets only so a bone biopsy is the only option.
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Bone biopsies have gotten better also- they use a different method to decalcify the bone. I did hear that they were not very accurate as far as PR goes- and they did read mine as unsure if PR-.
I had the bone biopsy in the front hip bone- no pain during the procedure just felt the pressure. did puke afterwards but, went home without pain meds. so sorry you had such a bad experience.
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Agree about the PR possibly not being accurate, my breast sample was highly PR+ but the bone sample was zero. If you only have bone mets though, they test to confirm what they saw on a scan. I can see it being easier to get a good sample from the soft tissue compared to bone, if you do have other mets,though.
About pain, my bone biopsy was supposed to be to my L1 vertebrae and right hip. When it was over I had sharp pain in my left hip. They got the spine sample but were unable to get the sample from my hip and I really suspect they stuck me in the wrong place - probably harder to pierce healthy bone with a needle compared to a cancer lesion. The anesthesiologist came in and asked how I was feeling and I said why does my left hip hurt. He said no they stuck you on the right. Doubt it. Anyway, the pain didn't last thankfully. Hip and back were a little sore for a day or two that's it
Hope anyone hurting from this procedure gets some rest and quick relief.
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Hi all - question for this group - In the metastatic setting (especially oligomets to bone), has anyone gone from using Letrozole only (not counting bone strengthener) to Fulvestrant/Faslodex only (no Ibrance/Kisqali/Verzenio)? One doctor I see said they wanted to possibly keep the CDK 4/6 inhibitors (Ibrance/Kisqali/Verzenio) on reserve. Another one said to hit the oligomets aggressively with systemic treatment using a CDK 4/6 inhibitor. I know the standard of care is to add Ibrance or equivalent. I'm currently planning to add Ibrance, but I'm curious if anyone went from Letrozole (or another AI) to Faslodex without a CDK 4/6 inh. and had a good experience?
Thanks!
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Hi Jsniffs,
Not quite what you are asking but close in my case. I started out on Arimidex, adding Ibrance. Unfortunately, my body couldn't tolerate the Ibrance as I ended up with severe anemia. When I had progression I had a brief stop on Xeloda and then my MO put me on Faslodex which I was on for 20 months. The median progression free period on Faslodex is about 8 months so, when Verzenio came available in Canada, I decided to layer that on. I was concerned that if Faslodex failed I would not be able to access Verzenio as a monotherapy. I remained on that combo for another 14 months before spread to my liver.
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