Newly diagnosed: After 10 years in... - SHARE Metastatic ...

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Newly diagnosed

Heath3 profile image
Heath3

After 10 years in remission, I was diagnosed with bone mets about 7 weeks ago. I'm 54 and we had just moved so I thought my lower back pain was age and overdoing it. Ended up in ER because I literally was on the floor and couldn't get up one night. Everyone said ' herniated disc' until I couldn't leave the ER that night, was admitted and the Dr on call read my history and ordered an MRI. Have had a lot of nausea, some pain, fatigue, generally ' not normal' since diagnosis. Did anyone else experience this? If so, how long before new normal?

To be fair, each day is better, I love my team of Drs and my tumor markers are coming down, so I'm hopeful. I had radiation treatment for pain, and am now off pain meds (helpful to not be in a fog and constipated) and on femura and kisqali.

Thanks for any advice😊

8 Replies
Hidden profile image
Hidden

It's awesome that you have a good medical team. I do as well. Nausea has been an issue for me since well before I was diagnosed with my bone mets. We tried many things to get it under control. Ultimately low dose Remeron (an old fashioned antidepressant ) was magic for me. It isn't the answer for everyone, but it was for me. Good luck. I pray you will find your new normal soon. And congratulations on being able to get off pain meds.

Heath3 profile image
Heath3 in reply to Hidden

Thank you, I will ask about that. I pray you’re doing well!

This is a tricky disease. I went for thirteen years when I was diagnosed with lung cancer in the lower right lobe. I chose to have cyber knife Radiology rather than surgery to remove the lobe. Surprise, the cyber knife did not get it all, only to have it mastastize into the humerus of my left arm. The tumor fractured the bone. It was about two months before this was treated. In the meantime, I am being treated with Zometa and Keytruda. I have also relocated to another state and had an appointment with a new oncologist. I am due for a pet scan and CT scan tomorrow. I am hoping and praying that the Kettruda is working and I can continue with hope and optimism. I have been on an antidepressant, Paxil for some years now. I do feel it helps with the pain. As far as constipation goes, an otc senna laxative helps me a great deal. I am wishing you prayers with the new treatment.

Aire

Heath3 profile image
Heath3 in reply to Aire

Thank you for your story and please let me know how scans go- praying for positive results!

Heath3...my story Is very similar to yours. I too was 54 and had also been in remission for 10 years when I was diagnosed with Bone METS last October. We had just bought a new home I had been working on all summer, which I too had attributed my back pain to. One year later, I am feeling great. I just got married on Friday and started a new job in July. I have been on Ibrance and Letrozole since January, Anastrozole alone prior to that. I get Zometa infusion every three months, it was every month for the first 6 months. I have another scan coming up in a few weeks and am hopeful that it will show no new growth as the April scan did. I have had virtually no side effects, even my WBC numbers on the Ibrance don't drop far below normal. But I am also taking boatloads of Calcium, D3, Turmeric, Flaxseed and Omega 3 Krill oil, along with eating better than I used to. If you haven't already done so, you may want to connect with a nutrionist...mine was a God send. Wishing you all the best...hang in there. Jana

Heath3 profile image
Heath3 in reply to Jan_Schnabel1

Oh my gosh, this is what I was waiting for! Thank you so much for the encouraging news and congratulations on your marriage! Just now looking into turmeric, and will add the others to the list. Thank you so much for sharing!

Jan_Schnabel1 profile image
Jan_Schnabel1 in reply to Heath3

You are most welcome. I hope it helps. Feel free to reach out any time. I will post my scan results when I get them. Have a great day!

I was first diagnosed in 2003. SBC diagnosed in May 2016. First on Letzerole and monthly denosnabz lbrance added in dec 17. Had surgery and radiation. And no new areas since. Scan I'm Feb 17 said NED. Just had results of scan in Oct and still NED. Wishing the you the best in your journey

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