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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