The best and worst of my MBC journey: all in three months!

[HelenWi]

Dear friends,

I’ve posted and asked questions about my recent experience in snippets, but I thought I’d share the story in one place and hope that it’s helpful.

I’ve been on Piqray/Faslodex for about 18 months with generally stable scans with mild metabolic activity in the bone lesions. But my markers kept climbing and climbing, steepest in 2024. I suggested to my onco we do a brain MRI and an MRI on my left femur which was really acting up after I went on a hiking trip. Well, the brain MRI showed a dozen small lesions and the femur had a 7 cm lesion in the bone marrow — neither of which was visible in a PET scan. We immediately started on gamma radiation on the brain (accompanied by steroids ugh - terrible sleep, swollen ankles but incredible energy which I guess is good).

For the systemic drug, I went for a second opinion. The breast oncologist recommended getting off Piqray and starting a Xeloda/Tucatinib combination, based on a clinical trial. Tucatinib is able to penetrate the blood brain barrier. It targets her2+ cancers which I’m not (!) but… I have a couple mutations in my her2 gene and the idea was that Tucatinib will work for me because of that. My onco was skeptical but willing to try.

So this is now three months later and I've completed the gamma radiation on the brain and on the femur and had repeat scans. My tumor markers have fallen from 1389 to 154! - lowest in two years; brain MRI showed significant shrinkage of lesions; and PET scan showed mostly resolved lesions - even better than before. My leg still hurts and the femur MRI doesn’t show change despite the radiation, so we still need to figure out what’s going on here; I’m a very active person and want to get back to walking and hiking.

To sum this up, PET scans alone don’t show everything, tumor markers aren’t always right but worth paying attention to, second opinions, especially from research institutions, are definitely very valuable.

I hope my experience is helpful in some small way to someone and wishing you all the very best. I really love and appreciate this board. Here’s to new wonderful drugs and useful trials, and let’s keep going!

[Iwasborntodothis]

So glad for your post and for your willingness to advocate for yourself - it is so important.

I'm sorry that you are unable to exercise and hope you get some more clarity on this very soon.

Allison

[HelenWi in reply to Iwasborntodothis]

Thanks, Alison!

[Hopeful4Cure]

I really appreciate your post. Personally, my thinking is the same. So important to ask questions and make suggestions. Advocating for ourselves helps with peace of mind to gave those extra tests done. The decrease in your markers in just 3 months is fantastic. Regarding your brain MRI, did you have any dizzyness, headaches or other symptoms? So glad you had a nudge to get the scan before it getting worse.

[HelenWi in reply to Hopeful4Cure]

I didn’t have any brain symptoms. I just knew that PET scan didn’t detect brain mets which I had learned somewhat recently. I wanted to rule out any reason the markers were going up. There are so many little details to stay on top of. I did notice on my last PET report, the radiologist said it was important to get a brain MRI. No one had said that previously! There are a lot of inconsistencies in how the radiologists do their work. I wish it were more standardized.

[Hopeful4Cure]

Thanks for your response. Indeed there are so many things to make sure we keep a vigilant eye on. I have a check list when I go to my appointments for this reason. Please keep us posted. Hoping your markers and scans continue to be positive/stable. Blessings

[GollyG]

Thanks for generously sharing your experience and advice - you're an inspiration!

[MazzyUK]

This is so interesting and helpful Helen. Thanks so much for sharing.

[bikebabe]

that is very inspirational and thoughtful of you - thank you. It’s good that you are living proof ie evidencing that these meds do work.

[Teddypeppalola]

Thankyou for sharing your journey! It’s made me think I have only had pet scan xx

[HelenWi in reply to Teddypeppalola]

That’s probably perfectly fine unless you have other warning signals .. like markers climbing fast, or unexplained pain.

[AvidBooklover]

Go you on being so proactive and huge thanks for sharing your journey!

[CTGirl1962]

Thank you so much!! Valuable information is always welcome and I’m do happy you’re doing so much better!!! Good for you advocating for your own health!!! That matters!! Sending hugs and prayers your way!!! 🩷🩷🩷

[mkrienke55]

I am glad you advocated for yourself! I find all the different scans to be limited in different ways and wish there was one that gave a better picture. I just had an MRI which showed more lesions than when I last had one. CT scans show stable disease as did the last bone scan. Now going to have a PET scan which has never shown my bone Mets I am having a lot of back pain. This journey really requires you to advocate for yourself. Hope you get back to exercise!

[HelenWi in reply to mkrienke55]

I think you have to look at all the scans together. Each one seems to have benefits and liabilities. My radiation oncologist said that mri isn’t good at distinguishing old inactive lesions from new ones. So it might look worse than it is. I hope you figure out your pain …maybe you can zap the culprit with radiation. Best to you!

[Praising]

thank you! I’m asking about piquay? I’m on Ibrance with mild progression. Wants to change a finitor or x xeldo? Side effects with either? I think it’s kinda soon but maybe proactive. t 12 and right iliac. No pain praise God.

[HelenWi in reply to Praising]

While I was on Piqray I got two new bone lesions on spine and my onco had them treated with gamma knife. Then we carried on with Piqray for almost a year more with no new mets. The philosophy was to stay on one drug as long as possible. So I wouldn’t necessarily jump to a new therapy because of a couple new lesions. This might also be a good time to check for mutations (Guardant360) to see if any new targeted therapies are candidates for your plan?

[Timtam56]

I thank you so much for this info, and I hope you are feeling good at present.

[hopenowandtomorrow]

I had a constant pain in my left femur for 8 months (assumed I pulled a quad muscle playing tennis). Tried massage & other options. MRI showed a large tumor growing in my left acetabular joint. My markers never indicated a problem. Treated with SBRT. Tumor gone. Later weakness in my left leg after a great deal of PT post radiation. Another MRI showed a non-cancerous bone cyst at the L4/L5. That was removed via a laminectomy. I can walk & play tennis again!

I hope you find the source of your pain. Have you been checked for a pinched nerve?

Please don’t give up until you find the source.

🙏❤️🙏

[HelenWi in reply to hopenowandtomorrow]

Excellent that you’re back in action!

Thanks for sharing your experience and for your encouragement. I have an appt with orthopedic surgical oncologist this week .. Hope she can shed some light on this.