Bone Mets Thread
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@threetree and @norah2024 - I had seen a long, detailed video about it and found this short one. I just received my order and noted that it is packed in plastic. I will try half a tablet to try today because I am very sensitive:
https://www.youtube.com/watch?v=g2-0RMcygqk
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hello everyone
Since starting Afinitor, I have been experiencing a severe loss of appetite.
At first, I was able to eat small amounts that helped me get through the day, but now my appetite is completely gone, and even foods I previously tolerated have become unbearable.
I have tried several methods, such as gargling with baking soda and water or salt and water before meals, but these did not help much. I also tried eating small meals every two hours, however the nausea makes it very difficult to force myself to eat.
At this point, I cannot tolerate any cooked food at all—only some fruits and raw vegetables. Even bread, yogurt, and milk are no longer tolerable for me.
What worries me most is that with this medication, loss of appetite and nausea have become daily issues. During chemotherapy, these symptoms usually lasted only 3–5 days and then I was able to eat normally again.
With this new medication, I don’t know how long this will continue, and I am very concerned about ongoing weight loss.
I would greatly appreciate any advice, experiences, or suggestions regarding appetite stimulation, ways to reduce the smell of food while eating, or the use of nutritional supplements or IV solutions.
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@norah2024 Just speaking as an old person, old people often drink protein drinks for calories. Are you able to tolerate those?
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I’m sorry you are going through this. I am having similar issues, but because of fluid in my abdomen. I almost stopped eating.
I spoke to a dietitian at the cancer clinic, and high calorie, high protein is the best thing, but small portions as to not overwhelm you. Believe me - I understand this!I’m doing small chia pudding for breakfast, or a smoothie with yogurt and fruit. Also small mouthfuls of cottage cheese. Egg salad seems to sit ok, as does plain toast. I can tolerate some juices too. I see some of these may not work for you. But the important thing is the calories.
To look at some food just turns my stomache. I can’t make dinner - or eat any meat.
Good luck, I really hope you turn the corner on this, but I absolutely understand what you are going thru.
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Norah, you could ask your doctor about mirtazipine. It’s an antidepressant used to stimulate appetite. I took it once for depression and could have eaten every pizza in Chicago. The animal shelter where I volunteered used it for cats that weren’t eating.
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@norah2024 - Is Ondansetron (Zofran) an option for you? Dissolves under tongue for nausea. It is like a miracle for me in that it seems to relax my stomach and stop nausea in its tracks. Comes in 4 mg and 8 mg dosages. Magical - I swear by it. Hope this helps. Healing thoughts for you - Terry B.
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Thank you, ladies, for the quick responses to my questions and for offering so many solutions.
I actually thought about this, but my husband opposed the idea and said that these products contain many dangerous things. He’s a health fanatic and always pushes me to follow his health-related beliefs. I might buy them and take them without him knowing.
Thank you so much for your kind feelings.
I truly search every day for whatever my appetite desires. I absolutely cannot tolerate cooked food at all, not even grilled meat. Yesterday I forced myself to eat a few pieces of grilled meat, and I was washing them with water to remove the taste, then eating them quickly with large gulps of water. I just wanted to eat something so I wouldn’t collapse.
I buy fruit because it’s the only thing I can eat without hesitation, even fruit juice. As for vegetables, I can’t tolerate them either. I used to eat cucumber, lettuce, and salad, but now I only eat lettuce.
Regarding the antidepressant you suggested, I will ask my doctor about it at my next visit, as it might also help reduce my depression.
As for Zofran, I remember taking it after chemotherapy doses, and it was effective for me, but I couldn’t tolerate its taste. I’ll try asking the doctor about it.
When I first started taking the medication at the highest dose, I experienced loss of appetite for a few days, but it wasn’t this bad. I used to eat my meals, just in smaller amounts, and my weight began to decrease until it stabilized — calories in equaled calories out.
But after my doctor adjusted my dose to 5 mg, and I didn’t receive this dose until after a week during which I stopped the medication, and I also changed the dosing time from 10 a.m. to 8 p.m., all of this led me to a stage where I can no longer eat anything at all.
Thank you again, and I hope my condition improves in the coming days.
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I feel like I will die of hunger before I die of cancer.
Afinitor has completely taken away my appetite, and my weight is decreasing. I am counting the days until I see the doctor so he can put an end to my suffering.
The number of meals I can tolerate is very limited — restricted to plain buns with some fruit and milk.
Even during chemotherapy, I would stop eating for three days and then return to eating normally. I never imagined that Afinitor would be harsher on me than chemotherapy.
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@norah2024 Can you reach out to your oncologist's office before your appointment? Is there a nurse practicioner?
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@norah2024 thinking of you dealing with Afinitor taking your appetite away and sudden weight loss. I hope your doctor an help your resolve this.🩵🌷
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Reaching the doctor or nurse is somewhat difficult. I don’t get a response by phone or WhatsApp, and going without an appointment means I have to wait for hours before seeing the doctor and I’m far too exhausted to wait that long.
So, in many cases, I prefer to wait for my scheduled appointment.
I’m seriously thinking about changing doctors, but I’m hesitant. I’ve just started a new treatment, and I don’t know whether a new doctor would continue the same treatment or enroll me in a new protocol.
Thank you for your kind feelings 🧡
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Hi all. Its been a minute. I wanted to give you all an update. All was going well. I am still on Verzenio/flasodex and prolia. My tumor markers were in the normal range for about 4 months. My last PET scan was june 2025. If you all remember I have been trying to get another PEt scan but my doctor was pushing back as my tumor markers continued to go down. Well now they are back up. In addition my white blood cells have gone dangerously low. My husband got covid and I got sick shortly afterwards. Now my doctor has me put a pause on the Verzenio. until we do additional bloodwork. I have been off a week and am very worried. I hope this is not an end to the run on Verzenio. It has been a relatively easy treatment for me so far.
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@norah2024 it would drive me crazy if I were unable to reach my Oncologist’s office by phone If I need to call there is always someone there, PA’s NA’s receptionists at Cancer Center’s anserwering service. I have also been able to reach him on MY CHART with a medical question or concern with side side effects. They always get right back to me because it goes right to them by email in the communication section Of MY CHART..
I hope your day is a little better today. If you do not see your doctor until your next scheduled appointment try to discuss with him a plan you can follow to reach him when something comes up. You should n’t have to go thru this.
@jen1 Hi . I used to be so obsessive about my tumor markers after the sudden jump from 13 years of being steady number of 24-26. Then suddenly after being NED for 13 years my Onc called me in the evening to say it had jumped to 84, and to get in for scans which showed progression to my bones. After that I combed my CA/27 29 marker test every month once he started me on Verzenio, XGeva, & Fasoldex. I watched as it went down significantly every monthly labs from 84 60’s 40’s then 30 and then suddenly my labs stop showing on My Chart and I realized my Onc was no longer ordering this test anymore. I asked why and he said my scans were always stable, no progression. So now that seems logical to me , if anything showed up on my 4month regularly scheduled scans, a tumor markers test would be irrelevant. Especially with metastatic stage IV breast cancer in the bone… I was taken off Verzenio once last year when I was being treated for an abscess in my jaw during a my 6 month dental cleaning exam. My onc made me stop the XGeva immediately in case of any oral surgery in a root canal , or tooth removal. But the oncology dentist who my oncologist works with said I would not need any dental surgery and he put me on an antibiotic, Amoxicillin. So Verzenio was stoped for the week or so of the antibiotic treatment and the he said I could start the Verzenio once I stopped the Amoxicillin. Can’t take Verzenio with antibiotics. Try not to worry, CBC numbers go up and down pretty regularly for me in high normal and low from time to time. My oncologist is also a Hematologist and he’s been watching my blood tests for nearly 17 years now.😉🩵🌷
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@norah2024 - I second what shanagirl has said about trying to contact your dr through MyChart. I do it a lot, and like with shanagirl, they always get right back to me.
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Thank you Shanagirl
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unfortunately, I have the same experience as you with my oncologist. The message section on MyChart states that responses may take up to 3 business days and I have sometimes had them go longer. The nurses screen the messages and will not always pass them along to the MO. Even when I address my question specifically to the MO, the nurse will respond instead. I have requested a consultation with another MO at the same facility and am considering switching.
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@norah2024 do you have a palliative care doctor? They’re very helpful dealing with side effects. I also second the recommendation for ondansatron.
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@tougholdcrow @shanagirl @threetree @aj
Thank you for your advice and your replies. I may have been late in responding, but I’ve been in a very bad emotional state because of my loss of appetite and constant fatigue.
There’s not much time left until my doctor’s appointment it’s tomorrow and I will ask him about all the side effects I’ve been experiencing.
As for contacting the doctor, the nurse, or the palliative care department, things are not that simple here. When I book an appointment with my doctor, I can see him for free for one week after the visit. After that, I need to book a new appointment to be able to see him again. There isn’t a system like MyChart, but I send the nurse a WhatsApp message about my issue, and she discusses it with the doctor.
Thank you to everyone who offered advice and support.
I love you all,🧡🧡
and I hope my doctor does not change my treatment I don’t want to enter another cycle of new side effects.
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I am very sorry for what you are going through, and I hope you recover and stabilize on your treatment soon.
I developed pneumonia last October, which forced me to stop Kisqali for about 18 days. So I believe that stopping the medication due to illness is considered acceptable by doctors.
As for the PET scan, I have it done every three months (some time 4 or 5 months it depends on many things)
I don’t know whether postponing the scan for that long and relying only on tumor markers is the right approach.
This is just my personal experience, and I hope others can provide you with more insight from their experiences as well.
Wishing you a speedy recovery.
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@norah2024 - Wishing you all the best at your appointment tomorrow!
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I think when the tumor markers are up whatever its that’s causing this result, is already there and shows up on the scans.
@threetree and @norah2024 . I know you ar both dealing with so many new struggles i just want to send you lot’s of gentle hugs 🤗
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@shanagirl - Shana thank you so very much! I was sorry to read on the other thread that you are struggling too, with all that pain. I'm sending some of those gentle Koala hugs right back to you! Take care and have a restful day.
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Today I didn’t do much of anything but sit on the couch in our livingroom where I usually watch the fish in our fish tank. I had my IPad and texted back and forth with my neighbor, who is bed ridden and has been in Hospice for a year and a half. She doesn’t want to live anymore so Hospice comes to her every day, I worry about her so much and I told her that today because of her constant bone and joint & muscle pain.When she found out I was Stage IV and going for treatments back in 2022 she had said she was also in treatment and had so many side effects. She was up and mobile back then and drove her car. One day we were talking and she told me she had decided to stop treatment, hated the infusions in her hip and said she was just going to hospice and die. I felt so bad because she was only 44 . I asked her what kind of cancer she had and she said she had a rare incurable disease that was the cause all of her pain in her bones & joints and everywhere in her body with high fevers and pericarditis around the heart and lungs., a painful salmon color rash on her limbs and torso….She said it was “STILLS DISEASE” an Autoimmune disease. , And she was not understanding that she need to see a Rheumatology Specialist. So Over the next year she lost her ability to walk and lost weight down to 88 lbs. Last year when her DH told me she was so thin I felt so concerned for her because we were going thru another cold weather spell in Feb & March. I hadn’t seen her In many months. So when DH & I were shopping in BJ’s I picked up some size extra small warm fleece lounging outfits, and some lavender vanilla candles and a plush fleece blanket & slippers because I wanted her to feel warm and comfy and encourage her, and sending them hot meals over when I was in the mood to cook. My DH is close to her DH and they are always back and forth looking out for each other. But I just don’t understand that she won’t fight her condition just to get more quality of life for herself & her husband. In some ways I see that at 40’s is awfully young to be bed ridden and in constant pain. So I spent the day researching different Physicians in our area who treat Still’s and chatting with her DH and her about getting out of hospice and have a doctor who will treat the Side effects of her disease and scan her regularly. A few months ago she fell and broke her ankle and her hip. Her DH carried her into the car and brought her to the hospital.. She was in for a few days they had her in quarentine because of her skin lesions.. they treated that and sent her home to revive a little and come back for surgery to her hip. But she wouldn’t accept any kind of treatment after her surgery and just went back to hospice. Up until now the ones who’ve been dealing with her won’t give her opioids or help her end her life. So I just needed to rant and share this story with you here. Thank you for listening 🩵🌷
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@shanagirl You are such a good person to reach out to your neighbor, and I'm sure your compassion matters, even if it seems she has given up. I have been thinking about this myself, why folks decide not to fight. I was doing some research into what is called "non-adherence" in breast cancer treatment, which means that people don't take their meds. There are several reasons for this, including forgetfulness, inability to pay for the meds, difficulty getting to the pharmacy, that kind of thing. There are clinical trials testing out apps and other technologies that will give reminders. But there seem to be quite a few people who just don't like the side effects or just don't feel like putting up with treatment. IT's much worse in early-stage breast cancer where something like half of patients are non-adherent, meaning they take less than 80% of their meds. The studies have monitored pharmacy refills as well as self-reporting. But even with MBC patients taking CDK4 inhibitors and estrogen blockers, the number seems to be quite high, like a third of patients in some studies. There's a proven link between progression and non-adherence. This is very difficult for me to understand. Maybe I'm lucky, but the SEs seem better than dying. I think of all you and others have been going through, much braver than me, but still you keep on keeping on with treatment.
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My dear, I was deeply touched by the story of your neighbor and how you went and bought her warm things to bring her a little joy.You truly are a compassionate person, and I notice that in your writing and in your responses to all of us.
May God bless you.
I’m sending you gentle Koala hugs as well. 🧡🧡
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Hi all,
This is an update
I went to the doctor yesterday for my appointment after receiving my blood test results.
My liver enzymes have started to go down after the doctor reduced the dose, which is good. The rest of the tests are either within the normal range or unchanged. There have always been some values — especially in the red and white blood cells — that are slightly higher or lower than usual, but the doctor has never been concerned about them.
The tumor markers have also decreased compared to the previous value.
I told the doctor that my main problem is the persistent cough and loss of appetite. Whenever I eat anything cooked, I keep coughing and then end up vomiting the food. He examined my chest with a stethoscope and confirmed there is an infection in my right lung. He prescribed antibiotics for 7 days and said that the severe loss of appetite is due to the infection, not the medication Afinitor.
I started the antibiotics yesterday, and I hope my condition improves so I can go back to eating, even a little.
As for the Afinitor dose, the doctor decided to keep it at the current 5 mg.
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@shanagirl What a beautiful person you are. Most folks just walk on bye or look the other way when it comes to chronic illness patients. She will be nice and cozy with all the wonderful items you bought her. And sending hot meals at times, well that's what my Grammy always did for neighbors or family. Thank you for having such a beautiful soul.
Irishlove
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@norah2024 This is such good news that this was a little blip on the radar and that it's treatable. Here's to the return of appetite, I hope soon!
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Thank you everyone. I spoke with my oncology office. My doctor still wants me off the Verzenio until my white blood counts go back up. I am going to insist on a PET scan now. I have not had one since June 2025. I go back in for blood work next Friday. My appt for the doctor I think is March 7. Before my white lood counts went up last month my tumor markers were going up. I will keep you all posted.
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@norah2024 Im so relieved to learn you and your doctor have resolved your appetite issue. It seems so obvious that an infection would naturally take your appetite away.
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