Scan Results on Bone mets

[Dragonfly2]

Hello MBC ladies! Some of you have expressed interest in how my bone scan and CAT scan came out this past week. Despite the worsening pain in my Sacrum and Illium, especially in the SI joint, my scans indicated no real changes...stable disease. However, the description indicated that there was 'intense uptake" (from the radio active tracers injection) in the sacrum...the original site of the bone mets. Im reading that there is no progression but the original site is getting active. the CAT scan showed clear internal organs.

With rising tumor markers and a two month pain increase, I suspect the the Illium bone met is firing up. Ive been reading up about repeat radiation to the bone met...and it seems that there are cases where we can get more radiation when a bone met starts to hurt. I see my ONC on Tuesday coming up...it will also show if the tumor markers are still rising. I plan to request more radiation as it was such a god-send three years ago.

Living off Tylenol and Naproxen three times a day is not ideal. I love golf but that's one of the activities that really is contraindicated for SI joint pain. Ive become uncharacteristically sedentary and easily fatigued.

Right now, I guess I will remain on the Anastrozole and IBrance protocol. Im not eager to move on to something unknown...but we shall see.

So, scans show no progression but the activity in the original mets seems to be rising. I have a lot of back pain with the shooting pains and tingling going down my right leg, and back spasms in the morning hours until I take tylenol. Occasionally at night I use the muscle relaxant I got for the spasms but it really doesn't address the morning discomfort.

Fingers crossed to see if I just need the radiation..or?????

Thank you again for all your concerned questions and best wishes.

[hopenowandtomorrow]

Glad you don’t have progression! I wish you the best in pain management!

🙏❤️🙏

[love2golfwell]

I am so sorry to hear about all of the pain you are experiencing. I'm glad the scans did not show progression though. I know inflammation can show up as increased uptake. I hope you can some answers and solutions from your oncologist. I know you enjoy golf as much as I do and am so sorry that you are not able to play like you want to because of the pain. Sending you many hugs and prayers.

[JustmeMary]

Thank you for updating us I’ve been thinking of you. Sorry you’re in such pain and glad it didn’t show progression. Hope you get relief from your pain soon. 🙏🏻

[mariootsi]

Hopefully just radiation will help! Good luck.

[LibraryGeek]

Sending you hugs and hope you feel better soon x

[Jenniferp2122]

I’m so sorry for the pain you’ve been having. I’m so curious to see if your oncologist will keep you on your current regimen because my dad is experiencing something similar. His initial Mets are re activating but it’s not spreading to new places. He is seeing his oncologist tomorrow.

[Dragonfly2 in reply to Jenniferp2122]

Oh gosh…best wishes for your dad’s visit to onc. It seems that re- activation is a “thing”…I hope that we both get some relief! 🙏🙏🙏

[PJBinMI]

Thanks for the update! Is it possible that the back pain is from spinal stenosis? That can cause pain like you describe. I've had it and I suspect it was developing before BC, I have mets in about three areas of the spine and had alot of pain in the L4-5 area. Have had neuro-surgery and that's helped the pain but not the neuropathy. This lousy cancer sure complicates every other health issue that we have. For many oof us, it makes alot of sense to stay on a med that's been working and get as much time from it as possible. I hope your appt Tues goes well and that you get some answers.

[Dragonfly2 in reply to PJBinMI]

Yes, thank you for your response…spinal stenosis is on my list of “maybes”. It has all the hallmarks of SI joint inflammation…so we will have something to discuss with the Onc on Tuesday. I do have sclerotic lesions on my spine attributed to arthritis. Years ago in 2008 I had a terrible bout of herniated disk issues with the shooting pain down that leg. As we’ve read many times, there is no shortage of issues as people age..but those of us with cancer are faced with the added agony and fears of progression. I will be sure to let you all know what the doctors say about this…thank you so much !

[PJBinMI in reply to Dragonfly2]

You are welcome! I hope your onc will spend all the time you need with you!

[genealogy74]

Thanks for keeping us up-to-date. I hope it remains somewhat stable and that you get more answers.

[Dragonfly2 in reply to genealogy74]

Thank you!

[NPmary]

Overall good news, it's great that over the counter meds are working (even though you're activity is getting limited - I know, it's really awful and scary).Wish you continued no progression and pain relief.

🌺 Mary.

[Dragonfly2 in reply to NPmary]

Thank you!

[DinNorCal]

That’s great news about no progression. Hoping for relief from the pain.

I also have spine Mets in T spine (still with slight uptake) and had tumors in L5 and sacrum and lungs back in 2016 which responded to treatment. I’m on Xeloda/Capecitabine until my next scan. Was thankful my Oncologist allowed me to continue with the Xeloda even though there was some SUV uptake. I’ve been on this roller coaster (now on 4th line of treatment) since December 2016 . This ride is not exactly thrilling

Thanks for sharing. Hoping and will pray for pain to ease for you. And that NO Progression continues.

[Dragonfly2 in reply to DinNorCal]

Thank you so much…every small victory is good to hear! Best wishes on your health!

[Timtam56]

Reading yours… I could be reading my own words!

[Dragonfly2 in reply to Timtam56]

I’ve read other women’s words like my own,…so true! We do all share so many experiences! 😎

[hurricaneheather]

makes the heart happy to read stable- no progression. sorry to read about the pain the mind-body is experiencing. i recall how much you love golf. i hope you are able to walk to keep the body active. may you find relief.

[Figletf]

🙏🙏🙏💜

[Dragonfly2 in reply to Figletf]

Dear figletf….I have read some of your back posts and I can see you have had quite the journey…including a denial from insurance to cover Affinitor….I hope the meds now are working better. You live in a beautiful part of the country and I hope you are enjoying your year round summer. Best wishes!🙏🙏

[Figletf in reply to Dragonfly2]

Thank you for your wishes!

[Georgelila]

Sending you hugs . I am in hip pain every day but mine is from an MRI that shows extensive arthritis torn labrum and denuded cartilage in my femur. All of this happened this past year and I have wondered if my ibrance AI cocktail has exacerbated these running injuries and also worry the CT scans that say no progression are not picking up Mets if that was happening . I’ve never had joint pain like this before. Wishing us all grace, courage and grit - I sure need it. Xoxo

[Dragonfly2 in reply to Georgelila]

GeorgeLila! So sorry for your troubles…the ONC is weighing in on whether it’s bone Mets or arthritis exacerbated just like you said by the IBrance and. Anastrozole…that seems to have a huge effect on any one who is already dealing with any arthritic conditions. I always say that I feel like I have aged in dog years since diagnosis….but, lucky to be alive !🤷🏼‍♀️😎🐕