progression whilst on fulvestant and palbocilib

[BritSammy]

hi fellow warriors, hope you’re all well. Just had the results of my latest scans and they have seen some update in the T3 vertebrae. The other sites are T6 and a hilar node in my chest which remain inactive following radiation. I feel sick to my stomach with worry about what’s next. This treatment has failed after 1.5 years so I didn’t get long on it at all. Dr wants to do radiation to the new uptake and keep me on palbo for another three months then rescan me. This is all so shit I can’t cope. I am only 53 and it is awful knowing you will very unlikely to see 60. My youngest is 13 and I just want to see her finish school and get into university. Any advice on what I can expect next? I am in the UK.

[Aquamoron]

Hi there. Ibrance and faslodex failed for me after 15 mos as well. That’s the bad news. The good news is that oncologist switched me to Lynparza (parp inhibitor) and I have seen good results in bloodwork at both 4 and 8 week intervals. Scans next week to confirm my status, but hoping that they confirm that this is working for me.

I dragged my feet initially at the thought of changing my cocktail, but am so glad I did. It sounds like you are on a precipice of searching for a better solution for your health. New treatments can be scary, and you aren’t alone in your journey. Research all you can, if nothing for piece of mind on the choices presented to you.

Hoping someone here can alleviate your concerns with radiation for lesion/pain management as I am not there yet. However, there are many, many developments in the works to fight the cancer beast. Changing a form of treatment should be looked at as an opportunity to get better and not necessarily another thing to grieve over. We all have so much on our shoulders already. Sending you good mojo, BritSammy!

[BritSammy in reply to Aquamoron]

Thanks so much for your response Aquamoron. It’s true I am grieving the loss of the bubble of Ibrance and feel so frightened about the next treatment which I may not tolerate. Thank you for the words of encouragement and advice. Sending you back good mojo 😁

[Nocillo]

I’m sorry you are feeling this way. I’m in the same boat too. Just found out there is progression after about 2 years on Ibrance. The first day was super tough. My pet scan last week shows even more progression. It’s not a good feeling! The best thing is that there are many more treatments available for us and so I’m hoping we can find something that works well until they find a cure! You are not alone! Enjoy the present!

[Kerryd22]

Is this your first treatment line Sammy? My first line was Letrazole. It didn’t work for a hot minute. The Mets kept progressing and it was discovered after I reported a very minor problem and the oncologist ordered an MRI. Then I had radiation to my skull (the second radiation treatment) and then six months of Abraxane. That was all in the first 12 months. But after that I started Afinitor and Aromasin. I’m still on Aromasin seven years later. In March I had a scan that showed progression in an abdominal node. I had another scan 12 weeks later. The result was that the new node had shrunk by half and the original breast tumour is invisible and many of the Mets have healed. I never thought that could happen back at the start. But it has. And unfortunately we do get progression at some point in time but it doesn’t mean there’s no treatment to bring you back to PFS. In my case, Aromasin did let a new node become infested but it also stopped it almost as quickly as it started.

Changing treatments is challenging but it could be that the next drug is perfect for you. The first hormone blocker I tried didn’t work at all but the second one did. No one knows why but maybe it was the Abraxane that helped. Maybe it wasn’t. There’s no absolute answer to that question.

Stay strong! You can do this.

All the best

Kerry

Rosie the riveter

[BritSammy in reply to Kerryd22]

Thank you Kerry for your response and words of encouragement. Love the image of Rosie ❤️

[Ntash01]

Hey BritSammy, following progression after Palbociclib- I went onto fulvestrant shots for about 7months. I know exactly how you feel after first treatment change - my mind went spiralling out of control. I was diagnosed 22nd December 2019, started treatment 2020 and have changed treatment 4 times now…. The 4th one wasn’t meant to be, but my onc reluctantly let me try one more oral treatment. I was suppose to go straight onto Taxol.

I am now (first time ever) on IV chemo. I’m bracing myself for those ‘obvious’ side effects! Stay strong - I’m 55 and am going along like nothing is/has been happening. I’m working, going on holidays and doing normal family stuff - my family think I should stop work and relax, but I figured I’ll relax when my body makes me and I want to. If you can - carry on as normal, it’s the best tonic to keep your mind off doom & gloom.

Nx

[13plus]

Hi Sammy, I think it’s good that your doc wants to keep you on those meds longer but just zap the T3. I was on iBrance/fulvestrant for nearly 3 years but really I had slow progression over about 3-6 months. It’s good to milk the drugs for duration if the Mets are not causing problems. (Btw 1 1/2 years is great! I really encourage you to flip your thinking. You got double the actually data average. I know that feeling of wishing you could be that person who gets 5/6 years out of a drug but those are the exceptions to the norm. Positive thinking helping us tremendously, I truly believe that, so try to focus on the up side) I became Mets while my son was still at high school, so I aimed to see him get into college. He just graduated college! Now I’m deciding on my next goal lol

Hang in there!

[BritSammy in reply to 13plus]

Thanks for the encouragement ❤️

[mariootsi]

Sending love and hugs. We all understand what a Rollercoaster this damn mbc is. Have faith in your oncs ability to adapt to your changing scans.

[BritSammy in reply to mariootsi]

Thank you ❤️

[Fun2garden]

I too have just received news my palbocilib and fulvestrant treatments have failed after 18 months, so I definitely share your fear. The treatments had been working to shrink a 7.8 cm lesion on my liver. Unfortunately, it has begun to grow again and 3 others have joined it. As I have responded well to radiation treatment with few side effect in the past, that is the approach they are going to take. No word yet on whether or not I will need a change of medication. I truly don't have any words of wisdom to share, I just wanted to reach out to let you know you are not alone. I am so grateful to everyone on this blog for keeping me grounded in the knowledge there are many more treatment options out there so I am not at the end of the road. I guess the only thing we can hold onto is the fact we are still here with our loved ones and the medical community is doing everything they can to keep us here. I hope your new treatment plan quickly reverses your progression. Big hugs!!!!

[BritSammy in reply to Fun2garden]

Thank you for your kind words. So blessed to have this forum to talk with fellow warriors. Hope the radiation goes well x

[wendle3007]

Hi Sammy. I'm in the UK and on Palbo with Letrozole - also Denosumab for bone strengthening. I've had radiation targeted on my T12 on two occasions and so far it appears to have arrested any growth. It's my understanding that if they believe current treatment no longer working, there are alternatives.

I have been scared about having cancer in my spine but not from an end of life point of view, more that if surgery is possible, then I may have mobility issues.

Do you have any contact with the breast unit? I have regular contact with a nursing consultant who specialises in patients with secondary cancers. She is great for practical things like chasing up appointments but is also someone to talk to about any concerns.

Best wishes!

[BritSammy in reply to wendle3007]

Hi Wendle3007, thank you for your response. I suppose it’s just that your spine is such a critical part of mobility that you feel scared. Thanks for the info x