Third time…now Stage 4 with bone mets
Based on testing with CT, bone scan, MRI’s, it’s confirmed I have bone mets to hip (several areas), pelvis (five spots) and a rib or two thrown in for good measure. I’m thankful nothing showed up in vital organs. I’m not surprised as I was diagnosed with ILC Stage 2B 13 years ago. I’ve been having positive Signatera results since Sept. 2024. I was blessed to not have any issues (of course no testing was done) until I found a lump in 2023. Since then it’s been a rollercoaster of surgery, radiation, pneumonitis, peripheral plexopathy of right arm, and blood clots in the brain (can’t find any reason why).
Now I’m faced with next round of treatment. First is Zometa infusion. I would love any feedback on how to ward off side effects. I seem to recall some folks using Claritin that may help. Second, is Kisqali (I’m already on Letrozole). I’m waiting to get heart test and blood work. I would appreciate any input on how to deal with Kisqali. I have a ranch with four horses, three dogs and an elderly husband who rely on me 100%. It’s very difficult these days here in OR to get any help whatsoever, even if you pay folks.
Thank you for reading the new story in my book.
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@newfmamainoregon Sorry you have to join this club. The first infusion is the worst but they will improve. I’m in the clinic right now getting my zometa infusion. I drink plenty of water and take a couple of Motrin beforehand. I find Kisqali very tolerable. I have some fatigue but I’m able to walk and do Pilates and live a good life. We’re here for you and there are active threads for kisqali and zometa.
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I've had 2 Zometa [every 3 mos] infusions so far, and the first was the worse for me. But I was sick with a lung issue that eventually turned into pneumonia, so my issues may have been coincidental to the Zometa. 2nd infusion I took claritan and tylenol, and I seemed to have only a few days of the cough and allergy reactions. I've started Kisqali and fulvestrant as well, which means it's sometimes hard to determine what drug is responsible for what side effect. So it does seem that time helps with the side effects. If you're like me, however, you want to feel better faster than it actually happens!
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Kisqali might hit you with fatigue or low counts at first, but most people adjust. Just try not to push yourself too hard, you’ve got a lot on your plate already. Rest when you can, and don’t be afraid to ask for help, even small stuff. You’re doing everything you can, and that’s more than enough
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@newfmamainoregon we're so very sorry to hear of this development, but as you can see, you've got great support here. We wanted to pop in with some resources for you:
Kisqali with letrozole for MBC thread
For more support, join our free weekly virtual support groups for MBC (the next one is today, Wed, at 4pm ET, but we have others throughout the week.) Additionally, we have a special Lobular MBC group that meets on the 3rd Thursday of every month.
We hope this helps and that you get the support you need. We're all here for you!
—The Mods
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Hi all, I have recently been diagnosed with extensive bone Mets with lymph node involvement. I go Monday for a biopsy to see what type of cancer it is. I had triple negative breast cancer almost 10 years ago so I’m hoping it’s not triple negative again.
i’m really afraid I am wondering if anyone can tell me what I can expect coming up.0 -
@lou53 - It’s good to see you back, though we wish it were under different circumstances. We're so sorry you're facing this again.
Hope the biopsy gives you some answers and that your doctors help you figure out the best next steps. When you feel up to it, we’d love to hear how you’re doing. Also, you might want to check out our virtual support groups, especially the one for metastatic breast cancer. It’s a great space to connect with others and ask questions in real time. If you have questions, just let us know. We’re here for you.
Warmly,
The Mods
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@lou53 Welcome to the club nobody wants to be in. It's really tough at first to go through all of these tests, but you'll have answers soon. You are sure to find folks who have had similar experiences and treatments here once you do know what you're facing. There's a lot of hope.
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Thank you tougholdcrow! My daughter is getting married in November and I want to make sure that I will be around and not to sick from treatment.
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@lou53
It’s very scary. It is my experience that once you have answers and a plan the anxiety is less. But I still find myself googling Dr Google late at night, looking for the answer to the impossible question of how long do I have.@.I have a recurrence in the chest wall 18 years after stage 3 HR+ HER - breast cancer and mastectomy, chemotherapy and radiation. It was a shock. Because the tumor is inoperable and chemotherapy resistant, in the chest wall and internal lymph node resting against my heart and lungs it is stage 4. Treatment is targeted radiation, AI and CDK inhibitors. I have good days and bad days. This is a wonderful supportive community. Keep checking in, you’ll be glad you did.
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Thank you owensgrandma. I’m so overwhelmed.
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@lou53 I’m sorry you are going through this again. I, too, was recently given the stage 4 bone mets, etc medal. Waiting on test results is stressful as our minds tend to think the worst. Hopefully, you will find comfort and support by being able to voice your concerns and anxieties here. Take care.
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