Bone Mets Thread
Comments
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Thank you for you nice words,
We have identified the cause of the loss of appetite, but it still hasn’t improved. I still don’t feel like eating, and at the same time I have to eat because of the many medications I’m taking.
As for my current condition, I am still taking two types of antibiotics prescribed by the pulmonologist. I am also taking Afinitor, Exemestane, and Omeprazole for my stomach.
Sometimes, after taking any of these medications, I experience a severe coughing episode and end up vomiting everything I’ve eaten.
I don’t know whether I’m improving or not, as I’m waiting to finish the course of antibiotics so I can repeat the CRP test to see if it returns to normal.
What worries me is the vomiting after taking some of the medications. Yesterday, I vomited 45 minutes after taking Afinitor, and I was concerned that I may have expelled the pill before it was absorbed.
I will see what the coming days bring. I feel extremely weak and exhausted, and I hope this nightmare ends soon.
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@norah2024 I would definitely want to rule out any disease causing these digestive problems, and it sounds like you have. Have they prescribed an anti-nausea medication? When I was going through chemo, they automatically prescribed olanzapine for me, though I never took it. I basically lived on yogurt and kefir for five months while I was going through that. The gentle probiotic action of yogurt and kefir really helped for me.
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The idea of taking an anti-nausea medication is a good one. I will complete the course of antibiotics, and if my condition improves, I won’t need to take it, because my doctor said that the loss of appetite is due to the infection, and once it clears, my appetite will return.
And indeed, sometimes I do crave some of our dishes that I used to prepare before.
As for yogurt love it more than you can imagine. I actually asked my husband today to bring me some, and I think I’ll be able to eat it without any problems.
As for my condition, I have not yet completed the course of antibiotics, and it is the most unpleasant part, as I have to take it three times a day.
Thank you for your continued support and advice.🧡🧡
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Hello everyone, I am still very upset. I am feeling very dismissed by my oncology team. I admit it could just be me. My white blood cells are still low, still off verzenio. I have appt with nurse practioner who I love on Tuesday. Then I have a lab appt Friday. and then the following week meet with oncologist. I left another message for my oncologist about ordering a PET Scan she wants to wait until after I meet with her for March 6. I dont know what the deal is. I know to many scans have their own issues but I want to make sure the cancer has not gone outside the bones. I am feeling increasingly annoyed with no one to talk to. I don't want to change oncologist right now however that may be necessary. I was doing so well and feeling as good as possible, now I am so upset being another week off Verzenio.
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Can you go somewhere and just get a second opinion? Not a full on switch to another oncologist, but just a bit more input from another pair of eyes and ears. Do you have any urgent care/walk in clinics near you? I've used urgent care before, and my PCP, just to get another take and/or some reassurance when I'm in an unsure situation like you are. I think an urgent care would be totally appropriate on a weekend and given your low cell count. You can just tell them you're worried and want a double check and some advice. Just my two cents. I hope you get some answers soon.
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@jen1 I second @threetree 's advice to get a second opinion. It couldn't hurt. This amount of time between imaging scans seems off to me, and if nothing else it could ease your fears. Oncologists, at least the decent ones, expect for their patients to get second opinions.
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Thank you threetree and tougholdcrow . What good advice I don’t know why I have been avoiding a second opinion. I absolutely am going to do that.
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I apologize if I'm asking a question that's been asked and answered, but with 1,000+ pages, it's hard to know. I have bone mets only. I am wondering how often you are getting scans and whether you get a nuclear bone scan or PET scan.
I am in Europe. My oncologist says that now that he thinks things are "on the right track," I will only get a nuclear bone scan every 8-12 months. I am getting a CT of thorax and abdomen at 3-4 months intervals. Everything that could be 3 months becomes 4 months, and thus I'm getting Zometa every 4 months. He says his assessment of me is made based on a combination of how I'm feeling, what the lab tests and tumor markers are, as well as the scans. It seems he's relying pretty heavily on tumor markers. I don't think I'll ever get a PET scan again. He thinks CT and nuclear bone scan in combination are better.
It seems different than the US protocol, and I would like to get a better sense of that protocol to try to decide if I need to return to the US. Kisqali/Ribociclib seems to be working for me, but I'd rather have evidence from scans and less reliance on symptoms and tumor markers. I could be wrong, and I stand to be corrected, if necessary. Thanks.2 -
@mary625 It's great that Kisqali is working so well for you! Every case is different. I've been on Kisqali for two years, and my MO has just changed my imaging schedule (CT and nuclear bone scan) to 4 months rather than 3. Same with my Zometa schedule. I had a couple of PET scans at the very beginning of this ordeal, but this changed to CT and nuclear bone scan when I switched to a better MO. The median progression free survival on Kisqali is about two years, which is why this schedule is now changing for me since I'm passing the median. I guess I'd ask the MO why he's changing the schedule so early, in only a few months. I'd want to know.
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Here's some interesting news for those of us with bone metastases, which can be mysterious on the scans. Are they healing or not? This new imaging system is supposed to become available in a couple of years:
https://ecog-acrin.org/press-release-an-ecog-acrin-imaging-study-solves-a-long-standing-gap-in-metastatic-breast-cancer-research-and-care-accurately-measuring-treatment-response-in-patients-with-bone-metastases/
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Hi, @mary625 - that is interesting as I have never had a PET scan. I just had a 1-year-later contrast dye CT scan of abdomen & pelvis along with a 4-month contrast dye bone scan (on same day last Tuesday the 17th!!!). I got the CT scan results immediately - all fine - but still have not received the bone scan results - weird! I celebrated one year of treatment on Saturday. Sadly, my oncologist has retired and I meet her traveling temporary replacement tomorrow to go over the scans before monthly injections. I have questions!
Thank you for that update, @tougholdcrow !! Encouraging!
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Hi, @tbos805 If I'm understanding correctly, within a one-year period, you have received one CT with contrast and one nuclear bone scan. Is this correct? If so, it doesn't sound like what I'm getting here is so far off. I also saw that you are in WA. If I return to the US, it will probably be to the Seattle area since my son is there. I'd probably go to Fred Hutch.
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@mary625 - Sorry for confusion - I did receive CT scan with contrast at bone mets diagnosis last January, so last week was my second one. I have been getting contrast dye bone scans every 3-4 months since then so Tuesday's was my fourth bone scan. I am in the Swedish Cancer Center in Issaquah and glad I haven't had to go to Seattle for anything (much less stress) but Fred Hutchinson is excellent.
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@tbos805 and @mary625 - I go to Fred Hutch in North Seattle, as I don't like going further into the city to South Lake Union Fred Hutch or Swedish, although I think Swedish is great.
I was on Verzenio, fulvestrant, and Zometa for a little more than two and a half years, and I always got bone scans and a CT of abdomen and pelvis every 3 months. I've never had a PET scan, and I don't know if they do them at my location. I've heard that most drs prefer the bone/CT combo over PET. My sister in law had a different kind of cancer and she got PET scans at Swedish Cherry Hill. I think sometimes the choice is disease specific and also dr preference specific. My oncologist also watches tumor markers and the general situation, and then combines all these things (scans, labs, personal comments/feelings, tumor markers,etc.) to come up with a treatment plan, so it does vary a lot between people.
Mary, that's about all I know about this, and I hope it helps in some way.
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Your comments are helpful. It seems that the plans for my bone scans to be every 8 to 12 months is woefully lacking.
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I have never had a pet scan. I have been getting CT of chest and abdomen and full body bone scans every six months. I just had a second echocardiogram because Doxil can cause heart damage
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This is an update on my condition.
Yesterday I did a CRP test, but the result was disappointing. I had expected that after taking antibiotics for a week — during which I suffered from severe vomiting, loss of appetite, and persistent coughing — the value would decrease. However, it did not go down; it actually increased. A week ago it was 60, and now it is 195.8. I don’t know the reason.
I am also experiencing pain on the right side of my upper and lower jaw. There is something painful inside my cheek and upper and lower gum that I cannot see. The pain is in the gum area. I previously had pain between my gum and a dental bridge I had done, which often caused pain and inflammation, but it used to improve after using Gengigel for two days.
Now I am using the gel and dexamethasone as a mouth rinse, but there is no improvement. I can only eat if I chew very carefully, and I cannot drink any juice or milk — only water.
I don’t know what the mouth ulcers caused by Afinitor feel like, because I did not experience them when I was taking the 10 mg dose.
I would appreciate if anyone who has experience with these ulcers could describe what they feel like. Is it possible for them to appear on only one side? In my case, they have been appearing in the same spot for about a week without increasing or decreasing.
Thank you all🧡🧡
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@norah2024 , Are there any oral surgeons (dentists who do a hospital medical residency also called maxillofacial surgeons) where you live? After the extraction of an abscessed tooth I had gum/jaw pain with facial swelling which got worse in spite of oral antibiotics. A facial CT showed inflammation but no soft tissue abscess so the oral surgeon did a jaw bone biopsy and debrided most of my mandible. Pathology found osteomyelitis rather than the differentials of bone cancer or osteonecrosis. Initially I was relieved until he told me only people with cancer or HIV get this jawbone infection. That was how my breast cancer was diagnosed. I had to take IV antibiotics via a PICC line for a month to clear the infection before I could have surgery. The only other people I have heard of with this diagnosis have metastatic cancer.
The large increase in CRP seems to indicate acute infection/inflammation. Osteonecrosis which is a SE of Xgeva probably wouldn’t cause such a high level.
Since you mentioned a cough and weight loss, has your pulmonologist ordered a chest CT to check for pneumonitis/ILD? This is a possible SE of Afinitor. I had these symptoms as well as anemia and shortness of breath on exertion. Since x-rays showed increasing consolidation I was treated for pneumonia with three different antibiotics but things continued to get worse. A CT showed pulmonary fibrosis caused by radiation; I had progressed past the pneumonitis stage. Treatment is steroids and oxygen if needed.
Mouth ulcers are a common SE of Afinitor but there can be other causes. I get them because of impaired immune function and use an oral chlorhexidine rinse which helps clear them. If dexamethasone (a steroid) isn’t working it might be worth trying that antiseptic/disinfectant which destroys microbial cell membranes.
It’s often hard to figure out the root cause of a symptom. I also had drug induced liver injury (lovastatin, not Afinitor) which knocked me down badly for over a year and let other medical problems develop. There are no easy answers but maybe one of these ideas will help. You have had such a tough time recently; you deserve a break.
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Yes, you’re right. You can’t imagine the extent of the suffering and pain I’ve gone through since I started Kisqali, right when the bone metastasis first appeared in 8/2024, until today.
Every time I begin a treatment, I start off well. My body responds much better than others in a way that surprises my doctor. But then confusing side effects appear—like a rise in tumor markers without any evidence of progression on scans. I stayed in that situation until my last PET scan in 11/2025, which showed slight progression that didn’t match the significant rise in tumor markers. That led my oncologist to change my treatment to Afinitor.
When I took the 10 mg dose, I didn’t experience the side effects I’ve heard many others describe. However, it significantly elevated my liver enzymes, so my oncologist had to reduce the dose.
After reducing the dose, my real suffering began. Every day a new side effect appears, worse than the one before. Since starting Afinitor, I’ve lost 6 kg and I’m still losing weight.
The only positive thing is that my liver enzymes have started to decrease, and the tumor markers are going down as well.
But I keep wondering: why didn’t the higher dose cause all these problems, while half the dose has been like a nightmare for me?
As for my teeth, I will try to find a surgeon to understand what’s going on, and I will stop Xgeva for now. My oncologist told me I need to stop Xgeva for six months before starting any oral surgery.
Thank you for all the valuable information you shared with me. Even if it’s not the same situation, at least now I understand where I stand in all of this and can think through all these possibilities.
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@mary625 Hi Mary, I'm in Egypt and PET/CT is the standard here. I did one after 3 months of beginning my treatment 2 years ago, another one after 3 months, then as the scans showed regression the doctor moved it to 4 months intervals and now I do them every 6 months. I have to say that my tumor markers are not reliable so I don't do them. And because I'm BRCA2 +ve and I didn't remove my breasts, in between the 2 PET/CT I do a breast specific imagine: MRI with contrast, and Mammogram….so basically a scan every 3 month + blood work every 2 months for me now.
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This is an update about my condition:
After I recovered from the ling infection I had, my temperature is still rising from time to time and I don’t know why, even though the doctor confirmed that my lungs are now fine and there is no infection.
The last CRP test I did was 61, so the doctor decided to give me antibiotics for five days.
This is not the main problem. Today I took the last Afinitor pill I had, and I will not be able to get the medication Because of some exceptional circumstances I am going through.
. I don’t know when I will be able to get it.Today I went to another oncologist to get a second opinion and to follow up on my case, because it has become very difficult to communicate with my previous doctor, especially when I have urgent situations.
The new doctor told me that stopping the medication for up to 10 days would not be a problem given the current circumstances. When I told him that I have 15 tablets of Afinitor 10 mg, he said that if necessary, we could take one day on and one day off, while monitoring liver enzymes every week.
I wanted to ask if anyone has gone through a similar situation.
I have several boxes of the 10 mg tablets, and I had previously asked my doctor if I could split the tablet in half to make it 5 mg, but he said that the manufacturer does not recommend doing that because it might affect the composition of each half.
However, given my current exceptional circumstances, I am considering splitting the tablet in half instead of staying without treatment. And it might be better than the doctor’s suggestion of taking the 10 mg medication every other day.
I feel very frustrated because I feel that I haven’t been able to stay consistent with the medication since I started it in December.
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@norah2024 I am sorry for the difficulties you are facing. I have never had Afinitor but I thought I'd share my situation with Ibrance.
I developed double lung pneumonia. The MO said it would do no harm fighting cancer, if I took a month off period. I was nervous, but I did it and of course the heavy duty IV antibiotics they gave me in the hospital did it's job. Now a caveat needs to be said that at that time I was in remission (didn't know that until recently). This may be the reason he was comfortable giving me a break.
I'm not sure what the right answer is, but you'll definetly feel better when you clear the lungs up.
Thinking of you sweetheart,'
Laurel
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Thank you for sharing your experience with me, I really appreciate it.
It’s good that you mentioned you were in remission, because I haven’t reached that stage yet. When I was on Kisqali, I almost reached it when the disease in the bones regressed significantly, but after the old areas healed, a new area appeared, which required changing the medication.
Regarding pneumonia, I had it in October last year, which forced me to be hospitalized and stop the medication (I was on Kisqali at that time).
On 17/2, the infection returned to my right lung, and I had to take antibiotics for a week.
Now I’ve had my lungs examined by three doctors, and all confirmed that the infection is gone, but my temperature is still rising, which forced the doctor to give me a new antibiotic for five days.
I don’t know where the infection is or what’s happening in my body. I will do a blood test in 10 days to see if the doctor can find the source of the problem.
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@norah2024 Is the new doctor advising you on how you might keep receiving Afinator? If the problem is financial, there may be avenues. I haven't faced this problem myself, but I have seen others mention drug company programs that help. This must be incredibly stressful for you.
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The issue is not really financial. I’ve gotten used to getting the medication from neighboring countries because here it costs me more than six times what I pay there.
Now, because of the situation in the Middle East, most flights have stopped, and I couldn’t receive my medication even though I was only a few days away from getting it.
As for support programs, I am actually enrolled in one, but they only provide the 10 mg dose, not 5 mg. When my doctor reduced my dose, they decided to close my file.
I have about three boxes of the 10 mg dose, but they are useless to me. I cannot cut the tablet in half, and I cannot take this dose because the last time I took it, it increased my liver enzymes.
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What about trying what the second opinion doctor suggested, i.e. taking one pill every other day?
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@norah2024 Gosh that seems maddening and senseless. I am so sorry that you are dealing with this unnecessary complexity!
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@norah2024 Praying you get the drugs you need and are staying safe!! 🙏🙏🫶
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@Addiej @tougholdcrow @threetree @irishlove @maggie15
Thank you, wonderful ladies, for all the advice, support, and prayers you have offered.
All of this truly helps ease the stress and anxiety that I am experiencing. 🌷
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