Bone Mets Thread
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I think it's aj, vajra and soldanella that mentioned upcoming scans - will be sending you good thoughts for those!
Took a long walk out near the GG Bridge, generally overcast with heavy morning fog around here, but glad it's not hot and no current smoke from any fires. So many adorable dogs out, as well as pelicans, cormorants, and a couple of seals!
Last scan for me showed no new mets, and I'm grateful to be walking and gardening about 2.5 years out from spine surgery (due to pathological fracture). Fatigue remains the main challenge on my current meds, so laying down in the afternoon has become routine. I try to give myself as much compassion as possible and try not to compare myself to others my age. Try, lol.
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Bone scan today. Took a lovely walk to a beautiful park while I was waiting for the tracer to go to my bones.
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Bone scan results show progression in a couple of spots. CT scan was stable. My oncologist is on vacation and her stand in called me. He mentioned that I could maybe get them zapped with radiation and stay on Xeloda. That’s what I want. Not ready for IV chemo yet. I couldn’t make an appointment with my actual oncologist for a month. No appointments available for the next two weeks and then I’m going on vacation. The sub oncologist said that the bone mets are slow growing so I guess its ok to wait. I don’t want to cancel my vacation.
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@aj So sorry to hear about your progression. Though slow growing is good news. I hope you have a wonderful vacation and then get a chance to zap those mets!
Hugs, Pam 💗3 -
Question about rising CA 15-3, PET scan and genetic testing
Hi everyone,
I’m hoping to hear from others with a similar situation and perhaps learn from your experience.
I have HR-positive, HER2-low metastatic breast cancer, with bone-only metastases. I was initially treated with Kisqali (ribociclib) + Faslodex (fulvestrant) for about 15 months. I then had progression in the same general area of a tibia lesion, although lower than the previously irradiated spot.
I subsequently started Afinitor (everolimus) + exemestane. When I started this treatment, my CA 15-3 was around 300. The marker initially responded very well and gradually decreased, reaching 68. However, over the last three months, it has started rising again, and my most recent result is 91.6. I also had to stop/reduce Afinitor because of a significant rise in my liver enzymes.
I contacted my oncologist, and he said that he thinks the rise in the tumor marker may indicate the beginning of loss of disease control. However, he does not want to change my treatment at this point. Instead, he wants me to go to the cancer center next week for genetic/molecular mutation testing, which he says may help us identify alternative treatment options.
My question is about the order of these tests.
I was wondering whether it would make more sense to have a PET/CT scan first (My last PET scan was 5 months ago, and it showed a decrease in the tumor’s FDG uptake), so we can actually see what is happening with the disease and determine whether there is confirmed progression, and then decide whether genetic testing is necessary or what type of testing would be most useful.
Or would it make sense to do the genetic testing now, at the same time as the PET scan, so that if the PET confirms progression, we already have the molecular information available to help choose the next treatment?
I have previously had ESR1, PIK3CA and BRCA testing, which did not show mutations.
For those of you who have been in a similar situation:
- Have you experienced a significant rise in CA 15-3 without confirmed progression on imaging?
- Did your oncologist order a PET/CT when your tumor markers started rising?
- Were you asked to do molecular/genetic testing before imaging confirmed progression?
- If you had both tests, did doing the molecular testing early help with choosing your next treatment?
I know everyone’s situation is different, but I would really appreciate hearing about your experiences. ❤️
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@norah2024 , Hey there girl. I was never give the CA/15-3 test by my oncologist. He regularly followed me with the CA/27-29 test as far back as 2009. afyer all my treatments finished back then he had me com in every 6 mths for lab CBC & metabolic panel.I was always pretty stable with eveything, and I really believed the treatments and surgery made me cancer free. He maintained me on Aromasin tablets and I was so lacks. about takinf those pills regularly because I hated the side effects. All those years from 2009 to 2023 I believed I had beat breast cancer Stage IIIA, and he would always lecture me that It’s his job to monitor me and keep the cancer from coming back and I must be more consistant with the Aromasin every day. But I was in Menopause and felt the Aromasin just made it all worse….. then I got the phone call late in December after the Holidays from him telling me my tumor markers were high showing traveling breast cancer cells in my CA/27-29 were higher than they had been all those years. my number was always lowat 25 or 26 always stay at that low number, then my December 6 month folloup with him showed a significant jump to 84. he had me come in to see him in January and schedyled me for scans and more tests. he also did a Liquid Biopsy probably to see if my Cancer had changed geneticly. Everything confirmed the cancer had become bone mets. He put me on a treatment plan of Verzenio, Fasoldex & Xgeva injections andscans every 4 months.I have not been given CA/27-29 tests in my monthly labs, I guess because as soon as my treatments started my numbers dropped back to normal after the first 4 months. and I’ve had stable scans since.. @norah2024 Have you looked up the normal and high numbers for the CA/15-3 test?I believe the normal range is the same number as th CA/27-29 which is 30. Prayers that you have a calm restful evening aand you can get more answers at the caancer center.🩵🌷
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@norah2024 , I had rising tumor markers and progression wasn’t showing on my CT scans. My oncologist ordered a bone scan and that’s what showed progression. I was on Xeloda but she’s switching me to Doxil. I had a liquid biopsy a few months ago and no actionable mutations were found. My cancer is ER positive with no her2 als so I can’t do enhertu. So she’s starting me on real chemo. I’m also going to get a zap of radiation to my lower left sacroiliac joint where the pain is. We already had the info from the liquid biopsy. I would think that getting the liquid biopsy would be greatly beneficial.
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@shanagirl
Thank you so much for sharing your experience with me and for taking the time to explain everything so thoroughly. I really appreciate it. It was very helpful to hear how your CA 27-29 changed and how your doctors followed up with additional scans and a liquid biopsy.As for me, I agreed with my oncologist to have a PET scan, and he is also recommending that I have genetic testing done at the same time. However, I’ve decided to postpone the genetic testing for now and wait until I see the results of the PET scan first.
I’m glad to hear that your scans have been stable since starting treatment. I truly hope your current treatment continues to work well for you and that you remain stable for a very long time. Wishing you continued strength, healing, and good health. ❤️
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Thank you so much for sharing your experience and for explaining what happened with your scans and liquid biopsy. It’s really helpful to hear about your experience, especially since your CT scans didn’t show the progression and the bone scan did.
I’m sorry you’re having pain in your sacroiliac joint, and I hope the radiation helps relieve it. I also hope the switch to Doxil works well for you and that your new treatment gives you good results. Wishing you strength, healing, and many stable scans ahead. ❤️
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@norah2024 You mentioned in your post 👇
As for me, I agreed with my oncologist to have a PET scan, and he is also recommending that I have genetic testing done at the same time. However, I’ve decided to postpone the genetic testing for now and wait until I see the results of the PET scan first.
I worry that you’ve decided to postone the genetic testing until you get the results of the PET. Your oncologist probably wants to see what kind of cells could be triggering the rise in your CA 15-3. the genetic test would most likely be liquid biopsy to identify changed Breastcancer cells or any new cancer cells from some wheare else..🩵🌷
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@norah2024 some info for you
https://blood-analysis.com/en-US/guides/ca-15-3-blood-test
CA 15-3 levels and normal range
CA 15-3 is measured in units per milliliter or U/mL. The normal range for a healthy person is 30 U/mL or less. Further testing is recommended if CA 15-3 levels are above the normal range. According to the National Institutes of Health, CA 15-3 levels are elevated in approximately 76 percent of metastatic breast cancer cases.
In addition to breast cancer, lung cancer and ovarian cancer are also linked to increased CA 15-3 levels. Keep in mind, the presence of CA 15-3 doesn’t necessarily mean the patient has breast cancer or that cancer has recurred. Benign conditions of the breast, ovary, liver, lung and GI tract may also cause elevated CA 15-3 levels.
To make an accurate diagnosis, cancer experts evaluate CA 15-3 test results in conjunction with additional blood tests, physical examinations and diagnostic imaging.
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Thank you, Barbara,❤️❤️ for caring about my situation and for providing me with all these important links.
I agreed with my doctor to have the PET scan and the genetic testing done on the same day.
What is worrying me now, and what has made me postpone the scan, is my high blood sugar. I’m currently taking diabetes medication to bring my blood sugar down before the scan, so that the test doesn’t fail or I don’t have to postpone it again.
All of this has made me feel very depressed. This stage of not knowing where I stand, whether my treatment will be changed, or what is happening inside my body is extremely exhausting. There is nothing left to do but wait.
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@norah2024 So sorry you are going through all this. I pray the diabetes medication helps insure a successful PET/CT. The uncertainty and waiting is so difficult.
Please keep us posted. We are all here for you.
Hugs, Pam 💗4 -
@norah2024 I would want the genetic testing too. Some folks are regularly monitored with genetic tests, although I don't think it is standard of care yet. When I had mine, my insurance wouldn't cover it, but the genetic testing company (Tempus) waved almost all of the cost. It's just good to know whether any variations might be developing. It is not FDA approved yet, but there was a breakthrough last year that found that Guardant360 testing might be useful in detecting early variants before they appear on scans. I don't think this is FDA approved yet and my own oncologist is cautious about the efficacy of regular testing.
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@livinglifenow
Thank you so much, Pam. ❤️❤️
Your kind words truly mean a lot to me. And thank you especially for remembering me in your prayers I really need them right now, and knowing that someone is praying for me brings me a great deal of comfort. ❤️I’m trying to take things one step at a time and not let the uncertainty get the better of me. I’ll definitely keep you all posted.
Sending you a big hug back, and thank you for being here for me. 💗
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@norah2024 It’s good you opted for the genetic testing and the same day of your scan. You’re there any way so it’s easier for them to get a liquids biopsy from your. Look draw. I know you are depressed over the diabetes issue. Are you sugar and glucose levels high on your mychart?, mine ar always low or low normal. I totally cutout all sugar when I was diagnosed with cancer. After i cut it out, I noticed I no longer craved sweets or carbs. I think surgar is in everything, but when I eliminated it I stared using aw local honey to sweeten my coffee, and other drinks and also fruits with high sugar content. I also learned that eating green bananas is better than ripe bananas because they ris in sugar content as they ripen. So I started to pick up green ones and when I tried them they were surprisingly good tasting and I like the consistency better….
another way to help regulate your glucose is making herbal specific herbal tea recipes. I’ve found that these recipes work wonderfully for many conditions. Here is a list of. Many of the tea I’ve been drinking during the day. Often I will make a small container or mason jar and keep them in the refrigerator and add som to. A glass of ice water because I don’t like drinking plain water, I’d rather infuse it with various teas, or fruit. You can always sweeten it with honey rather than sugar or artificial sweeteners., It’s so difficult dealing with metastatic cancer, @norah2024 , I really believe it helps to consider what is good and healthful to help heal our bodies with herbs and staying close to our Creator in prayer to give us the wisdom and strength and energy to fight this disease we are all burdened with here on these forums. Saying hi to those here I haven’t mentioned, I try to read all posts on these forums but there are only a few I respond on.
@livinglifenow @vajra13 @tougholdcrow @threetree @irishlove @cookie54 and all those I haven’t mentioned but reading along🩵🌷
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Thank you so much for always following my situation and for taking the time to share your advice with me. I really appreciate it, and I truly benefit from many of the things you suggest. ❤️
I have actually already cut out almost all added sugar. I used to put only one teaspoon of sugar in my morning coffee, and I have now replaced it with an artificial sweetener. I also stopped eating sweets and sugary foods when I started Afinitor, so sugar itself hasn’t really been a big part of my diet for quite some time.
My bigger problem now is carbohydrates, especially bread and rice. I used to eat whole-grain toast, but after starting Afinitor I developed such a strong aversion to the smell of anything whole-grain or with bran that I can’t tolerate it anymore.
I used to have bread with sandwiches and rice or bread with lunch, but now I have been trying to replace those with salmon and vegetables or chicken and vegetables. I have completely stopped having bread or rice with lunch, and I only use bread now for my dinner sandwiches.
As for tea, I actually already drink herbal teas such as anise and fennel, and I drink them without any sugar. So I think your idea of herbal teas is something that could work very well for me. 😊 I also like your idea of making them ahead and keeping them in the refrigerator, especially because I don’t really enjoy drinking plain water.
The difficult part for me is that since starting Afinitor, my appetite has become very poor. I eat quite small amounts, and my weight has been steadily going down. Now that diabetes has been added to the picture, I feel like there are even more restrictions on what I can eat, and that is what is really frustrating me.
Sometimes I feel like I’m running out of things to eat! 😅 I know I need to be careful with my glucose, but at the same time I don’t want to restrict my food so much that I end up eating even less.
I also really appreciate what you said about prayer and staying close to our Creator. Dealing with metastatic cancer is difficult enough, and having people here who understand what this journey feels like makes such a difference.
Thank you again for always checking on me, thinking of me, and sharing what you have learned. It means a lot to me. ❤️
Norah 🧡🧡
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You gals are the best. So thoughtful. I wish I could write and reply as you do.
On my last rides back from town I've had dh drop me off a few miles from the house to hike home. I don't usually walk that far out cause I do round trip when I leave the house and it's a steep hill up first and that hurts more.
But taking this route I was able to take a side road for a change of scenery. At the end is a retreat house of the Pallotti fathers (Catholic). Along the way is a bench at a statue of Mary and baby Jesus. Perfect for a break. Sit and pray and listen to these guys. A little giggle.
A rare sight these days in rural wi. Most big herds are kept in a barn.
Very sore tonight. Hot bath helped.
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@norah2024 I don’t know if this is helpful, but I love this organizations website for healthy eating https://www.aicr.org/ , I’ve learned a lot here on their healthy eating challenge, and the new American plat ideas. Also being 90% plant based diet (10 % fish or chicken ) has been super helpful for me with all the treatment line changes I’ve been through.
Also this book has been my bible The Cancer Fighting Kitchen, with great recipes for side effects manag,ent, and just yummy stuff to aid the body create homeostasis while it fights off disease. As best as it can.. lolWishing everyone a lovely Friday. Rhonda
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@rlschaller - Rhonda, thanks for the info about the food site. You might also want to look at this one. It's not as much about recipes, but it has lots of infor about various foods and what they offer for people with breast cancer - also references to many, many studies.
https://foodforbreastcancer.com/
Hope you have a lovely Friday also!
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Thank you so much for sharing all of this with me! ❤️ This is really helpful, and I truly appreciate you taking the time to share the website, the healthy eating information, and the book recommendation. I’ll definitely check out the website and all the links you shared. The Cancer-Fighting Kitchen sounds especially interesting, and I’m definitely going to look into it! 😊
It’s also really encouraging to hear that eating mostly plant-based has been helpful for you through all the treatment changes you’ve been through. Thank you again for sharing your experience with me — I really appreciate it! ❤️
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Hi everyone,
I’m looking for experiences from anyone who has had lung problems while taking Afinitor (everolimus).
I’ve been taking Afinitor + exemestane, and I have had a few episodes of pneumonia in the past. My recent PET/CT showed new changes in both lungs: heterogeneous FDG-avid airspace consolidations in the right middle lobe and left lower lobe (SUVmax 5.1 in the left lower lobe), plus a small low-FDG-avid ground-glass opacity in the right lower lobe.
The radiologist’s impression was that the findings were suggestive of pulmonary infection and recommended clinical correlation and follow-up. There was no definite statement that these changes represented cancer.
I saw a pulmonologist who reviewed the PET/CT. She thinks the changes could possibly be scarring from my previous pneumonia, since pneumonia can leave fibrosis/scarring behind. However, she also wants to rule out other causes, including infection or Afinitor-related lung inflammation/pneumonitis.
She suggested a bronchoscopy to help determine whether this is related to bacteria, Afinitor, or something else. Because the bronchoscopy is quite expensive, we decided to start with CRP and compare it with my previous CRP to look at the trend. She did not prescribe antibiotics because she did not feel they were necessary at this point.
I also asked her whether the lung problem could continue to worsen. She said that if Afinitor is causing the lung inflammation, continuing the same medication could potentially make it worse, and my oncologist might eventually need to consider changing treatment.
Has anyone here experienced something similar while taking Afinitor?or any other medication ever caused a similar lung problem for you?”
I would really appreciate hearing your experiences, especially if your situation was initially unclear between pneumonia/scarring and Afinitor-related pneumonitis.
Thank you ❤️
Norah
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@norah2024 I had lung problems while taking Verzenio. Had a bronchoscopy which showed no infection. Did a month of prednisone then went back on the Verzenio at a lower dose. The steroids cleared it up.
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@norah2024 I didn’t need antibiotics because I didn’t have an infection. Just inflammation
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