Bone Mets Thread
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@mary625
“I am so sorry that you have to go through all of that
I also have the same type of cancer in the bone, but not in the thigh.The largest and most painful area was in the tibia bone, measuring 7.5 cm in length.
That’s why my radiation oncologist advised me not to put any pressure on it until I received radiation therapy.
I didn’t use crutches because I found them difficult to move around with, and my hands started to hurt from using them.
So, I switched to a wheelchair, which was much easier.
After the radiation treatment, I felt a great improvement, and now I don’t use any walking aid at all.
I hope you get well soon
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Hello, everyone - I have searched and searched the site and see very little discussion about CA 27-29 markers increasing. I have only had 7 months of treatment! Monthly Faslodex injections, 3-mo Zometa infusions, and 100 mg Verzenio twice daily. My markers dropped in half in the High range over the first six months (292 in Jan 2025 eventually down to 103 in August) and today's report - 20 points up to 124!! Isn't this a significant jump? Is this a common occurrence? I am just beside myself with worry now after all I have been through these months trying to adjust to the treatments and deal with the side effects. I sent a message to my onco on the portal this morning (Saturday) but won't hear back till she returns on Tuesday. I knew this day would come, but already?? So discouraging.
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@tbos805 I think this is a pretty common occurrence and something the oncologist will keep an eye on. The scans are the important thing. I can completely understand why you are worried, but there are various causes.
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Tbos805, there are other reasons the numbers can rise. That's why they watch the trend over several months. By then scans are due. Some drs don't even test tumor markers. To soon to worry. Yes easier said than done.
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Sometimes your CA 27.29 markers go up as your cancer is dying also referred to as the cells shedding. Try not to worry. Focus on scans. If you feel new pain that does not resolve within 2 weeks, then go to see your doctor right away.
For those at risk for pathological fracture, I was in the same boat. Cancer had almost eaten through my left acetabulum. Radiation killed the cancer and new bone grew in its place. I did my lifetime dose of Xgeva. I’m just now starting Evenity treatment to try to preserve bone strength as the chemo I did really did a number on my spine and osteoporosis.
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Thanks, @jensgotthis - your reply prompted me to type different words in the google search and this came up:
Yes, it is possible for CA 27-29 markers to temporarily rise at the start of treatment, which can reflect that cancer cells are dying and shedding. This phenomenon, sometimes called a "flare," does not necessarily mean the cancer is progressing.The "flare" phenomenon:Chemotherapy and other treatments work by killing cancer cells.When a large number of cancer cells are destroyed, they can release a rush of tumor marker proteins into the bloodstream, causing a temporary increase in marker levels.This is a short-term effect and usually occurs within the first 30 to 90 days of starting a new treatment.Therefore, a single, recent CA 27-29 result that is higher than the baseline may be misleading. Oncologists typically do not use an initial increase as an indicator of treatment failure.
It has been 6 months of treatment for me. I look forward to hearing back from my onco about this.
Thank you for the reassurances, @tougholdcrow and @gailmary .
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@tbos805
Finally, I found someone asking the same question I’ve been searching for in forums and online, without getting a clear answer.
I’m also experiencing almost the same issue, but I use CA 15-3 instead of CA 27-29.
When I started CDK4/6 treatment (Kisqali)
along with Faslodex and Xgeva for the bones,
the markers didn’t drop significantly; and after few months start to rise rapidly
here are the values (tested monthly)
What puzzled the doctor was that the PET CT scan, which I do every 3 months, showed a decrease in uptake values. However, 3 months ago I had an MRI of my lumbar and thoracic regions, which showed a new suspicious area at T9. I followed this with a PET CT scan, which showed no uptake.
The doctor suggested doing a second MRI of the thoracic region to compare with the previous scan.
But my fear of MRI, due to claustrophobia, makes me hesitant to undergo it under general anesthesia.
Therefore, I plan to suggest to my doctor to do radiation therapy for the vertebra instead of going through tests that might not give confirmation and might lead to a biopsy, which is long and something I want to avoid.
I lean toward this approach because the doctor suspects a lesion in the vertebra based on the MRI and the markers.
I hope this information is helpful, and I’d love to hear from others if they are experiencing the same issue.
“I also want to mention that I went for a CA 27-29 test to make sure that the marker I am using is not fluctuated, and the first result I had for this test was 166
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To follow up, I just received a response about this from my oncologist on the message portal:
Hi Theresa - this is almost assuredly just "noise". The numbers will often bounce around a bit even when the overall trend is still downward. Don't panic, and there is nothing we need to change right now. Stay the course, and we will see how it looks next month.
Of course I panic as 20 pts increase seems like a lot to me. Especially after being diagnosed so late and all I went through last year (undiagnosed). Thanks for listening, friends!
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I like that answer! My numbers have been bouncing around, and just increased 15 points in 2 weeks. I have a call with my oncologist this afternoon, I hope his response is the same. Panic is the right word.
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@rstogether Please report back!!
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@tbos805 So, my oncologist was not concerned about the tumor marker movement at all. (I am tested for CA-15.3). I have a PET scan at the end of the month, so we'll see what activity is happening then. Let's hope nothing.
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Sounds like a consensus between our oncologists, @rstogether !! Fingers crossed for your PET scan!! 🤞 My next contrast dye bone scan is mid-October so prayers for all of us…
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thanks xx
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I have multiple bone mets but a 4.7cm one on the posterior right iliac bone (pelvis) is especially concerning, number 1 due to the increasing pain I’m having and number 2, it has broken out of the bone into the surrounding tissue. The ONC is recommending radiation but I am very concerned about the damage it can do in that area (which is very close to the rectum, lots of nerves, etc.etc.). Has anyone had radiation in this area and can you share any details that might be helpful?
Thank you.
PS The latest MRI shows progression even after 4 months of Kisqali, 12 months of Letrozole & Zometa infusions.
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@newfmamainoregon I don't have experience with radiation, but I'm really sorry this is happening. Will they do a biopsy to see if your cancer has changed and why letrozole/Kisqali failed?
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@tougholdcrow They did a “liquid/blood” draw yesterday that doc said was a Guardant biopsy to check for mutations. She wants me to continue the same treatment for now and have CT in October.
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I had a 3 cm lesion on my right pelvis which was treated with SBRT in 2022. The planning for the procedure is incredibly complex, including a detailed measuring and marking session of the treatment area followed by about a 10 day session to design the finely tuned approach for the beams. I had no side effects other than a mild soreness which didn't even need Tylenol. Good luck.
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@eleanora Thank you for the feedback. I’ve been reading pros and cons and found a post with some links to read.
I saw MO on Friday. She tried to show me the largest lesion on illiac wing but was struggling finding it on the MRI. Evidently, it’s much harder to pinpoint things on MRI vs CT. She eventually found it. Her recommendation was see radiation oncologist to try to lessen pain, took blood sample to Guardant mutation testing and stay the course with Kisqali/Letrozole/Zometa until after Oct. CT. Maybe look at switching to Faslodex instead of Letrozole. I’m going to be reading up on the radiation and Faslodex. If anyone has any feedback, I’d really appreciate it.1 -
Good Morning group - For those who are looking for a mystery to solve, those of you who like the game clue - here you go - Circling back to CA15-3 numbers, mine jumped in the last 9 weeks. I preface to say they are still in the normal range, but went from 17-28.4 in 9 weeks. My CEA went from <2.0 to 2.6. My alkaline phosphate went from 29 in April to 41 in May, 43 in July and 49 yesterday. Do you all follow the alk phos numbers too? I was told this number can be predictable of bone mets. Mine were certainly elevated out of normal range when I was dx in Dec 2023 (178) but have consistently gone down until this May. I have a host of other things going on too. I discussed my throat necrosis from radiation in previous posts. That hasn't resolved but has improved slowly with medication (Pentoxifflyne and high dose Vit E 1,000mg). I refused to get that looked at under general anesthesia because I was worried about them flexing my head back. I have a C2-T2 spinal fusion and my head doesn't go back but maybe I should reconsider that procedure for a biopsy? That being said if it's improved on the medication it's pretty fair to assume it's just necrosis from rads. This past Friday I had blood drawn for my Hypothyroid / Hashimoto (I have had for over 20 years) and that was out of whack too. It was at .02 which means I was hyperthyroid right now meaning I had too much hormone circulating. I ALSO have ear pain on the side where the ulcer is. To the point that I can't sleep on that side. There has been some level of pain that radiates to jaw and ear with this ulcer / necrosis from the beginning but it had gotten better. This pain is different. Infection? I see my Med Onc tomorrow. Could infection or screwed up thyroid cause my CA 15-3 or CEA numbers to be out of whack? That doesn't account for the Alk Phos. OH AND - In May, per new med onc, I dropped to 100 of Verzenio….THEN I got COVID in early July (Happy 4th of July) and I ended up OFF verzenio completely for a month as a result of COVID then him thinking I should "take a longer break" to see if it helped the ulcer / necrosis heal faster. Bloodwork was good in July. CEA <2 and CA 15-3 was 17. Slightly higher than May for the CA 15-3, but only 2 points. Had an MRI in July of my cervical spine and it was normal. Everything was sclerotic as it has been for a year. Had CT chest abdomen pelvis in August, same thing. All sclerotic an everything else looked good. Had a PET/ CT back in Dec and April previous to all of this and again, fine. very low SUV uptake in only one area in hip that decreased to none. I KNOW he is going to say "ahh it's nothing don't worry about it" tomorrow but with ALL these other factors I am reluctant to agree. Any stories of hope here? Any advice? I had signaterra when I was first dx. No circulating tumor cells in blood then so they don't feel I need it repeated. Maybe now? Should I get a PET?
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@iacmelis11 These numbers fluctuate all the time, and maybe you are just in a perfect storm of fluctuations. My CEA can go up to 2 and then back to 1 and then below 1 but nothing at all is happening. My C15-3 fluctuates several points up and down all the time within normal range. I don't think the lab results are always perfect. I doubt your oncologist would panic over one set of tests and would look for trends. Not to dismiss your worries, since you know your own body best, and I hope your oncologist can give you some reassurance.
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@tougholdcrow Thank you. It's re-assuring. This is the first time this is happening to me and with all the other factors - Thyroid, throat necrosis, weight loss as a result of that AND the verzenio dose drop then break for a month I am having trouble just assuming this is normal stuff in my case but maybe it is.
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@iacmelis11 You are dealing with a lot, for sure, and I'd be worried too. Keep us posted!
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Hi all, an update for those who may be interested. I have multiple bone mets but there are three in particular that are quite large and two which are causing significant pain and are at risk of fracture due to the invasive nature. I met with radiation oncologist yesterday and he wants to fast track 5 days of rads to two of the bone mets (hip and SI joint), he doesn’t want to target the pelvic iliac wing area as it’s encroached into tissue and is close to rectum, etc. He made sure to tell me, this is palliative only, not a cure and of course went through the risks. I’m hoping I get some pain relief. I’ve searched the BCO topics and it seems most people do get relief from rads to bone Mets. I’m praying I am one of them. On another note, I won’t know if the Kisqali isn’t truly working until after the next CT in Oct (at least that’s what the MO said at my visit last Friday). Sending kind thoughts to all.
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Hi @newfmamainoregon, I had quite bad hip pain when I was first diagnosed. I had 1 radiation treatment and magic! my pain disappeared, and hasn't returned. Since it was early days, perhaps my condition wasn't at the same level as you, but I'm sure glad I did it. Hope it works.
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Am very excited to report that I have been " released" from my collar after almost 6 months. 👏👏My new neurosurgeon called today to give me the good news.
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@newfmamainoregon , yes, agree with @rstogether - radiation treatments to painful spots on my spine (cervical and sacral) were magical!!! I had endured such pain for six months last year, diagnosed incorrectly as due to worsening scoliosis because of bone loss caused by years of Tamoxifen and Arimidex and thought this pain was just my life now. January MRI showed the bone lesions, some exactly at those painful spots, of course. I had good results after two weeks daily radiation (one area took the full six weeks to completely resolve the pain) and I hope you do, too.
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Thank you @rstogether and @tbos805. RO thinks 5 days should be enough for the 2 spots he will be targeting. I’m praying he knows what he’s doing. I’m happy there is a palliative solutions to the bone pain. I sure hope the scientists would focus more on a cure than just creating “treatments” for what they are now calling a “chronic disease”.
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I am not sure where to put this. I have been on Letrozole for 4.5 years, and prior to that, 7 years of Tamoxifen. I had a few hot flashes when I started Letrozole, but they stopped after a month or two. I have started to have hot flushes again. Has this happened to anyone else? It is very strange. I am in my early 60s
I a
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@sunnidays I'm 68, had a pretty late menopause at 59, and do still get the occasional rush of heat, not sure why.
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@tougholdcrow
I’m 64, and like you, I had a late menopause at 58,
I was on Letrozole for three and a half years, and it was a tough experience with hot flashes and joint pain.
After the cancer came back in my bones, I started Faslodex, which also causes hot flashes, but to a much lesser degree, and they only last for a few days after I get the injection.
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