Bone Mets Thread
Comments
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I still get warm flushes occasionally, but I survive them. I also have vaginal dryness. I think it's caused by Fulvestant. I am on my 4.5 years of it. I have the cancer in my bones also.
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hi everyone
I’ve had a mild dry cough for more than two months.
When I told my doctor about it a month ago during my routine monthly check-up, he said that if the cough continued for another two weeks, I should let him know.
I didn’t go back after the two weeks, but on October 7th, I developed a fever, lost my appetite, felt extremely tired, and had severe coughing spells whenever my temperature rose and it was close to the time to take fever medicine.
This went on for about a week until the fever finally went away. During that week, it was also time for my regular blood test (on October 9th), so I went to see my doctor and told him about my symptoms.
He said that everyone has the flu these days and that it was nothing serious, so he didn’t run any tests. I went home and waited for the fever to end, but I continued to cough and feel very weak.
I went back to him again, and finally—though I’m not sure what made him change his mind—he examined my chest with his stethoscope and realized I had pneumonia. He immediately ordered a chest CT scan, and the results confirmed it. My doctor then told me I needed to be admitted to the hospital right away.
I’ve been in the hospital since yesterday and have already received a few doses of antibiotics.
My question is: has anyone here ever experienced pneumonia before? I’m really anxious and scared, even though I’ve started to feel a little better after two doses of antibiotics.
If anyone has gone through something similar, please share your experience.
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I had pneumonia at the beginning of 2024, despite two trips to Urgent Care where I requested antibiotics and was told that I didn't need them. I had my routine scans in mid-January and my MO called me at 5:30 on a Friday to ask if I felt sick. There was a large opacity between the upper and middle lobes of my right lung. She prescribed a "dose pack" which was very effective, although the fatigue lasted about 3 months. Hope you're discharged soon and that your energy levels improve.
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thank you @eleanora for your info
I’m still in the hospital receiving antibiotic treatment, and my doctor has stopped all cancer treatments except for the faslodex injection, which I had received before my pneumonia was diagnosed.
Did you pause treatments like Kisqali and Xgeva while managing the pneumonia? And how long will I remain without treatment?
Although the doctor told me that he will discuss a new treatment plan because he believes the current plan may have failed due to the continued rise in my markers.
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Sorry you're still in the hospital. Yes, I stopped Kisqali during the one week dosepack.
On a related topic, I have been dealing with diverticulitis since June, 2025. The emergency room doctor prescribed augmentin, which seemed to help initially, but then it reoccurred a few weeks later and the gastro doc prescribed augmentin again. Both times I stopped Kisqali. Diverticulitis started again on 10/12, more augmentin prescribed. I contacted my MO and she said that I could continue on Kisqali. Hoping something works, as the pain is pretty severe.
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I really appreciate your responses to my questions, and I truly benefit from hearing about the experiences of anyone who’s gone through the same situation.
I’m really sorry that you went through all of that. I hope you recover soon.
Here’s an update on my condition:
I’m still in the hospital, and my lungs are responding to the treatment, but I’m still very exhausted and keep coughing, so the doctor has to use the nebulizer.
The respiratory specialist said that I’ll be spending another night in the hospital.
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This is an update on my condition:
I was discharged from the hospital yesterday, and I’m continuing the treatment at home for another five days.
I have stopped taking Kisqali during this entire period of illness — starting from when I first had a fever and caught the flu, then later developed pneumonia — which adds up to around ten days in total.
Did you ever have to stop treatment for this long?
I’m not exactly sure what my doctor’s decision will be regarding this Kisqali cycle, which I never actually started because of what happened.
During my last visit, he told me that the current treatment seems no longer effective (Due to the continued elevation of the markers), and that he wants to discuss second-line treatment options with me.
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hi @norah2024 , I’m so sorry to hear about your hospitalization and pneumonia, I hope getting discharged means you’re doing better.
for other reasons (high QT interval) I had to interrupt Kisqali for a week or 10 days last year. I remember it was scary for me too back then but it didn’t impact my results. I interrupted it for another week last May prior to a surgery, and I will probably do that again next month prior to dental work I need to do. I guess it’s normal and expected that we will interrupt the medication for regular health issues that arise during our (hopefully long) life as it impacts healing.I hope you feel better soon and resume your protocol. My tumor markers were never reliable so my doctor relies on scan work.
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@radiation_cinderella
Thank you for responding to my questions. I truly appreciate any reply from someone who has been through the same experience.
Thank God, I’m now at home continuing my treatment and keeping up with the antibiotics, but I won’t hide it from you — I’m very worried and keep wondering whether my lungs will return to how they were and if I will truly recover.
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@norah2024 I'm so sorry you're having to go through all this, and I hope you have a quick recovery. You may want to ask your doctor if Kisqali may have contributed to your lung problem since pneumonitis is a side effect. I stopped the 600 mg of Kisqali a couple of times for a week until my dose was reduced. This was due to neutropenia. That was a year ago, and I'm still going strong.
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Thank you so much for your reply. I really appreciate your kindness and the time you took to share your experience. Wishing you all the best and good health. 🌷
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So glad your home. Hope things steadily improve.
I stopped Kisqali for 2 weeks in June, in addition to my "break week" for a total of 3 weeks.
I have scans on Thursday. Will let you know.
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This is an update on my health condition.
After spending four days in the hospital and five days at home recovering from pneumonia, I am now feeling better and slowly recovering.
Before I developed pneumonia (and a week before that I suffered from a fever),
my doctor was uncertain about my condition because my markers kept rising, even though the PET scan and MRI of the lumbar and thoracic regions showed no disease progression.
Now, my doctor has requested that I undergo a full-body MRI to assess the status of the disease throughout my body.
The problem is that my doctor is convinced that the current treatment is no longer effective and wants to start me on Enhertu. What confuses me is that during my last meeting, my doctor told me that he intends to change my treatment plan based solely on the continued rise of my markers—even before seeing the results of the MRI that I will have next week.
I even started to suspect that the doctor is pushing me to change the treatment so that it can be administered in his private hospital, which would benefit them financially, because he always repeats that Kisqali is not effective after approximately a year or 18 months.
Is this true?
I’ve heard that many people continue on Kisqali for years. I don’t understand why he is pushing me to start Enhertu while I am under extreme stress about changing my treatment.
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Norah, My MO orders new genomic testing when TMs rise significantly, to see if there are new mutations that might determine the next treatment, but doesn't change anything until scans definitively show progression.
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I have been on Kisqali for 3.5 years, but will now be moving on as scans showed progression in 2 areas - thankfully still bone. I meet with MO Thursday to discuss what's next.
What type of genomic testing does your MO order? I know that bone biopsies do not provide great info, as I had one at the time I became stage IV. Trying to look at the bright side - no more faslodex shots!
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@norah2024 I think you should seek a second opinion. You can look at the data on the Kisqali website to see what the progression-free survival (PFS) is for your type of cancer, combination therapy, etc. There have been several trials and studies that track the efficacy of Kisqali over time. Of course your MO is worried about tumor markers rising, especially given your recent health crisis, and doesn't want things to get worse. But choosing the right path (with genomic testing, as cure-ious suggests, and good grasp of all available options) is important and this is an excellent time for a second opinion at the best cancer center you have access to. Your doctor should be supportive of this since the more information, the better.
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@norah2024 - I too have rising tumor markers (very slow but steady), and my onc has brought up the possibility of a treatment change, however he says that tumor markers alone are not enough to make that change and that the tumor marker rise has to be backed up by scan evidence before one can assume that there is actual progression. I've been on Verzenio and Faslodex now for almost 2.5 years, and this past year I started to show some lesions on my liver that after a year have been determined to be mets. My onc thinks the tumor markers might be rising in correlation with the very slow growth of these liver mets. At this point we are continuing to watch and wait, and I am staying on the Verzenio and Faslodex. My onc (and me) would like to get as much advantage from the current treatment as possible. Like you, I've seen where many have been on these CDK4/6 drugs for many years, and I would like to get the same. I think that @cure-ious and @tougholdcrow have great advice here. I too would recommend a second opinion.
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@norah2024 Hi gal. I thought I'd share my experience with you as I, too am starting to heal from pneumonia. I had gone to the hospital with pain in my chest. They worried about heart attack or blood clot. Tests were cleat but the chest CT came back with atypical pneumonia and infection. The ER doc wanted to admit me, but some supervisor disagreed and so I was released with a note to see primary doc. 4 days later primary started me on doxicycline. That didn't go well. Vomiting and diarrhea non-stop. Back to ER and I was admitted on Sunday. Hard part was IV as between the two visits I had 7 attempts. Horrible bruising. Anyway I asked to leave on Monday and it surprised the hospitalist. I have a family emergency coming up in the next week and need to be in Charlotte. He reluctantly agreed, but honestly I'm doing much better at home. Cough is gone after weeks but exhaustion is real. I have been off Ibrance 75 mg since OCT. 6. Worried me at first as I won't see MO till Nov.10 but I need to heal my lungs and get my blood cell counts back to normal.
I don't know if it's time to change from Ibrance after 2 1/2 years (along with faslodex). He does not rely on tumor markers. Since starting Ibrance I have had colitis once, diverticulitis 3 times, infection in salivary gland (holy cow does the jaw swell up and it's so painful) and now pneumonia. I wonder if the two weeks on and two weeks off would be available and work for me. Another poster here follows that protocol and so far she has had good luck with no further progression.
Best wishes to you and I'll say prayers for you.
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@cure-ious
I did only the most important gene mutation tests, and they came back negative — I don’t have any mutations.
This was the first step my doctor took after the tumor markers started to rise.
@eleanora
As for me ,I’ve completed 14 cycles of Kisqali so far, and after several months of gradual decline in the tumor markers, they started to rise again.
What my doctor told me at that time was that if the progression is limited to the bones only, it might be possible to treat the new lesions with radiation and continue the current treatment without any changes.
@tougholdcrow
Thank you so much for your kind message and thoughtful advice. 🌷
The oncologist I’m seeing now is actually the best one in my city, and the next step for a second opinion would mean traveling abroad. For now, I’ve decided to wait for my upcoming MRI results before making any further decisions.
@threetree
I feel the same way — I’m not fully convinced that tumor markers alone should determine a treatment change.But, to be honest (and it’s hard for me to admit this), I also have a feeling that somewhere in my body the disease might be slowly progressing, even if it hasn’t shown up on scans yet. My tumor markers have been steadily rising by about 20–30 points every month, which makes me wonder if there’s something we just can’t see right now.
❤️❤️Thank you to everyone who shared their experiences and gave me advice. I am truly grateful to you all, and I also thank everyone who has kept me in their prayers.1 -
Thank you for sharing your experience with me; I am truly grateful for that, as well as for your prayers .🧡🧡
I have gone through almost the same experience, perhaps around the same timing.
For me, it started about two months ago, when I would cough whenever I encountered a strange smell. I thought it was normal since I already have sensitivities to perfumes and other unusual odors, so I ignored it and just used the nebulizer when the cough became strong.
But on October 7th, my temperature rose, I lost my appetite, had a cough, and sometimes the cough was so severe that it caused vomiting. I thought it was a virus due to the flu, so I took a fever reducer. After about a week, my condition stabilized and the fever subsided.
After that, I noticed extreme weakness, barely able to walk (I even started using a wheelchair) and unable to complete my sentences when speaking due to the weakness.
I decided to visit my oncologist, and after examining my lungs, he said I had severe pneumonia in my left lung and immediately requested a chest CT scan and asked me to return to him.
The scan showed that almost half of my lung was white, some areas solid and others scattered, which led the doctor to admit me to the hospital.
I entered the hospital on October 17th and spent four days there, then continued treatment at home for another five days.
During this period, my doctor asked me to stop Kisqali, but he didn’t mind me taking the Faslodex injection. I also missed the Xgeva injection for this month.
So I am currently without any treatment, for more than two weeks, in addition to the Kisqali break week.
Now I feel better, except for some fatigue and a cough that the doctor said will continue for the next month. He advised me to use cough medicine and the nebulizer.
I wish both you and me a full recovery from pneumonia and stability on our treatments in the coming period.
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@norah2024 - I understand what you mean about the tumor markers. My onc is basing his advice to me on the fact that my tumor markers are rising very slowly; like about 1 or 2 points every 3 months. They are in the teens somewhere now if I remember. He did say that if one of those suddenly jumped to a 50 (like the 20-30 point jumps you are referencing), he would take a different view. I didn't realize your markers were jumping that much. I also want to say how very sorry I am about your pneumonia. That sounds terrible. I have never had to deal with that and hope I never do of course. Reading about both yours and @irishlove 's experiences with pneumonia have been downright shocking. I wish you both the absolute best with your recoveries.
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Thank you for your concern about my condition. I truly hope that no one ever has to experience something this exhausting.
As for my tumor markers, they started at 90 and went down for several months until they reached 74, then began to rise again.
Now, after a year and two months on Kisqali, and with the continued increase, they have reached over 227 — with no clear explanation for this.
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@norah2024 227 is quite high and I can see why your MO is worried. It does suggest that something is going on. The question is what, and yeah that is scary. I hope you get answers very soon and, if necessary, have a treatment change that works. There are lots of options these days.
Really sorry you've had to go through all that, @irishlove , and hope you are well on your way to recovery. And the family crisis can't help!
My c15-3 tumor markers have been in the 20s for a very long time now. I think other things can cause them to rise a bit or fluctuate, but a big jump is truly worrisome.
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Well Guardant or similar tests can pick up ESR1 or PIK3CA mutations even with bone-only mets. I'm not sure if the test works if you have very limited disease, tho. If the test showed zero mutations, it is possible that it was a bum reading, that can happen. Did you have any testing before, and if so, were any mutations picked up at that time? Elevated tumor markers can precede progression on scans by many months, so generally its a reason to start testing and thinking about alternatives, getting other opinions, rather than jumping to a new drug.
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Thank you, dear @tougholdcrow
I know that the marker number is very high, and that’s what frightens me so much.
Since the last PET scan, my doctor and I have been searching for the cause, but I’m not convinced by his approach.
He asked me to do MRI scans of two areas in the spine, twice in a row, but found nothing,
even though he knows that MRI is like hell for me because I suffer from severe claustrophobia,
and I must be sedated to complete the scan.
Now I’m wondering — why didn’t he ask for an abdominal or internal organ scan
instead of repeating the same area twice just because he suspected something in one vertebra?
Now, more than four months after my last PET scan, the doctor has asked me to do separate MRI scans for different parts of the body to find out exactly where the problem is.
He said we’d start with the pelvis and abdomen, then move on to the brain, and finally the bones.
But I recently discovered there’s a test called “Whole-body MRI with Cancer Diffusion Weighting”,
which scans the entire body at once using a special technique and takes only about an hour.
I’m currently searching for a hospital that can perform this scan under sedation,
(I’ve been looking for four days now.)
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Dear @cure-ious
thank you for your reply.
I have done the Guardant tests, as well as ESR1 and PIK3CA mutation testing, and also the genetic tests — none of them showed any problem.
You’re right — I’m now searching through one area of the body after another to find out what’s causing the tumor markers to rise this way.
I’ll also keep you updated on my case, so that others who experience the same issue may benefit from what happened with me.
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@norah2024 I'm not an expert on these imaging tests, but why not a CT or PET?
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I used to do PET scans before, and the last one showed a significant regression in the bone lesions — one of them even disappeared.
But I don’t understand why my doctor insists on doing an MRI. He says it’s more accurate, doesn’t trust the PET scan results, and claims that the PET might miss or fail to capture certain areas — that it could even show no uptake in a spot that is actually an early lesion.
My problem with the MRI is that I’m severely claustrophobic. I’m terrified of closed spaces and of having a big machine right above my head — it makes me panic.
Neither the anesthesiologist nor my husband understand this, and they’re surprised when I ask for sedation, even though I know I could have a panic attack if I’m forced to stay still for a long time or be in a confined space.
They don’t understand this at all, and I constantly get questioned about why I need sedation.
Even today, the anesthesiologist told me they only use it for children so they don’t move.
But I’m sure there are many people like me — I just don’t understand why they think I’m a freak.
I’ve scheduled the MRI for next week, and I’m very anxious about the results.
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I have never had an MRI because of claustrophobia; my oncologist is happy enough with that. Could you ask for a benzodiazepine prescription, such as lorazepam, before the MRI? The doctor told me it makes some patients so relaxed that they fall asleep. They might be much happier to do that rather than sedate you.
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