Not the best news - PLEASE - Need comforting and advices

[Lulu4545]

Dear Friends,

I hope this message finds you all well. It’s been a while since I’ve connected with everyone, and I wanted to update you on my current situation and gather your thoughts on the treatment options I’m considering.

Brief History of My Case:

As many of you know, I was diagnosed with metastatic breast cancer (MBC) in May 2020. My initial diagnosis was de novo, and I had bone-only metastasis at the time, with multiple bone lesions detected. I started treatment with Ibrance (palbociclib), Anastrozole, Zoladex, and Xgeva, which resulted in an excellent response and metabolic remission in my bones. In March 2021, I had a successful surgery to remove the primary tumor, and things remained stable for a while. However, in May 2022, I had some minor signs of progression in L3, and in January 2024, I noticed some oligoprogression in L5 and T2.

My current status is still quite stable, and I am feeling well, working full-time, and maintaining a good quality of life. However, my recent scans showed two small spots in T2 (SUV 4.6 and 7.2) and one in L5 (SUV 4.7), which are signs of progression. While I’m still feeling healthy and energetic, these results have led me to reevaluate my treatment options.

Current Treatment Options Suggested:

My oncologist has suggested two primary paths forward:

Afinitor (Everolimus) + Aromasin (Exemestane): A combination often used for hormone-receptor-positive MBC when the disease progresses on other hormonal therapies. However, I’m concerned about the side effects of Afinitor, which include fatigue, mouth sores, and gastrointestinal issues. I’m not sure I’m ready to go down that path, especially considering how well I’ve been doing and my desire to keep living life actively.

Radiation (if approved by other specialists): Radiation could be an option for T2 and L5, but it would need to be confirmed by other doctors. Given my history of radiation to the breast, S1, L3, and T10, I’m concerned about the cumulative dose and potential damage to nearby tissues.

Other Options I’m Considering:

In addition to these suggestions, I’ve been thinking about other possible treatments but don't know if my onc will agree:

Faslodex (Fulvestrant): This is an injectable hormone therapy that targets estrogen receptors and could be an alternative to Aromasin.

Elacestrant: A newer, oral ER-targeted therapy that I’ve read about as a potential option for hormone-receptor-positive breast cancer - not available in France I believe or unless in a trial.

Precise Radiation Techniques: I’ve heard that in Paris, there is a new radiation system that allows for more precise targeting of metastases, reducing the risks associated with cumulative radiation exposure - I don't know if I can find a way to get this treatement -IRM Linac.

Your Experiences and Insights:

I’m reaching out to ask for your thoughts and experiences, especially if you’ve been in a similar situation. Have any of you tried Afinitor or Aromasin? How did you manage the side effects? If you’ve used Faslodex, Elacestrant, or heard about these precise radiation techniques, I’d love to know your experiences.

I’m still feeling well and want to make the best decision for my quality of life while also managing the cancer. Your insights would mean a lot to me as I weigh these options.

Thank you so much for your support and for being a part of this community. I look forward to hearing from you.

Warmly,

Lucie

XXX

[Jhshl512]

Hi Lucie

I am 12 years out with MBC! Yea for me. Like you, I’ve had many tumors on my spine. The first one was in 2013 and it was surgically removed and then my spine was replaced with rods and screws to hold it together. 2023, my spinal cord was once again compromised by tumors. More surgery and radiation. That’s my history.

I have been on many treatments and Afinitor and exemestane was one of them. I did extremely well on that for about a year. Through this forum, I was told to order size 0 gelatin capsules from Amazon. You place the afinitor pill inside. This prevents mouth sores and gastrointestinal issues. I checked with the specialty pharmacy and they were fine with it. The gelatin pill dissolves in your stomach after 30 minutes. Gelatin also helps with settling your stomach. I never had a mouth sores because of this and my stomach was always fine. I wish you the best with your next treatment. I hope this helps you. One day at a time is my motto!

🙏🏻

Lori

[Lulu4545 in reply to Jhshl512]

Thank you so much for answering. Was that your second line ? I've only had one line till now - Ibrance and Anastrozole. I thought maybe some other less agressive combos came before Afinitor.

[Jhshl512 in reply to Lulu4545]

No. It wasn’t my first line and honestly I can’t remember when Afinitor came into the picture. I believe I’m on my 8th or 9th line. I’m also on iv chemo now but remember I’ve also been on the mbc road for 12 years. I’m still doing very well. If it is the Afinitor for you please order the gelatin capsules and you shouldn’t have any issues.

Good luck

Lori

[Lulu4545 in reply to Jhshl512]

Thank you so much for getting back. Why do you think My onc is having on Afinitor on second line ?

[Jhshl512 in reply to Lulu4545]

Good question. I’m not really sure there is an order. I will say it was my 5th or 6th line. Definitely ask your oncologist

[BorisCarloff]

hey Lucie!! Please remember we are all different but I had a terrible time on Affintor. The issues that are terrible, diarrhea and tons of mouth sores that the miracle what could not be managed was both lungs, which caused me to the whole summer, go to see a pulmonologist and have lung therapy all caused by the Affintor. I play golf and Pickleball and go to the gym daily, but I could barely walk 5 feet without sitting down and resting.. about a week after stopping Affintor I started to feel better and it took about two months before I could get back to myself. But again many people have good things to say about it. I hope you’ll be one of those. Xx

[Lulu4545]

Thanks for the feedback. What did your doctor suggest next?

[Gallivanter]

Hi, Lulu4545 -

I'm 10 years metastatic, have had widespread/extensive bone mets for most of that time. Have many times *delayed* a change in treatment - even with a bit bit of "progression" - similar to what you described. I've just let things progress, slowly, until my body was screaming for a change, not whispering. I've gone *years* without changes, just wait and see.

Just wanted to throw this out there in case you'd consider the same.

G.

[Lulu4545 in reply to Gallivanter]

Thank you so much for the feedback. I'm going to suggest the delaying. What did you get next? I'm just really suprised my second line should be Afinator/Aromasine. It's not the easiest. And also I'm scared that if I don't change, the spread could go to my liver/lungs...

[Bella_mum]

hi Lucie,

I was on Ibrance for 4 years before progression, honestly with hindsight I wish I’d stayed on it a bit longer before changing. I had some testing done to check for mutations and found I had the Esr1 (I think) mutation which has been show to do well with Elecestrant - unfortunately it’s not available here in Canada

I opted for Everolimus and Exemastane ;excuse spelling) but that only lasted 3 months as I had progression. Side effects were not too bad (I also put the tablets in gel caps to avoid the mouth sores and it seemed to work)

Now I’m on Xeloda and after first 3 month scan there is some improvement so I will stick with it despite the hand/foot problems.

Good luck

Lauren xx

[Lulu4545 in reply to Bella_mum]

My big fustration also. In my case I should be having radiation as it's oligo, but the machine at my clinique don't do precision radiation. It's possible in Paris, but I'm sure they'll hav me.

Elacestrant is not available in france either. They say it's not really better than the other stuff and much more expensive. What they forget is that's it's much easier on the patient.

As for new better molecules, they exist, but we have to wait 10/15 years till the old molecules are amortized.

[Kerryd22]

I had Letrazole then Abraxane and at the end of the first year I started Afinitor and Aromasin. I didn’t get mouth ulcers although I was encouraged to take precautions. I gave up the gargling after the first week. I’m not recommending that but that’s what I did. Only 60% get mouth ulcers so it’s by no means certain you would either. Pharmacists at my clinic supplied a whole lot of mouth treatments that would assist with managing mouth ulcers but even gargling a bicarbonate soda/water mix is said to be helpful. I didn’t get any gastro problems although I have diverticulitis. I didn’t feel the fatigue was any different from the other treatments I’ve had. I did become anorexic on Afinitor but I had weight to lose so that wasn’t a problem but it started to become an issue as blood tests started showing deficiencies but it is easily resolved with Sustagen. That also stops the weight loss. The anorexia came about because any food that had sugar in it and lots of things do, such as milk, tasted bitter and I didn’t want eat it. Forty percent experience issues with food.

What I did get was liver inflammation. That’s a rare side effect and less than 1% experience it. My liver numbers rose and kept rising until they were extremely high. I took a fortnight off and numbers dropped but when I started Afinitor again the numbers rose again. So after ten months, in April 2017, I stopped Afinitor and stayed with Aromasin as I hadn’t had significant progression. I have bone Mets from my head to my toes and everywhere in between. I’m still on Exemestane and I’m still stable.

My experience has been good overall and I’m hoping to stay on Exemestane for a few more years. I celebrate ten years at stage four de novo in May 2025.

I hope that whatever you choose to do, it goes well for you.

All the best

Kerry

[Lulu4545 in reply to Kerryd22]

Thank you so much for all this info. All the best Lucie

[LibraryGeek]

Hi Lucie,

Affinitor was my worst treatment line, but it was because it caused me diabetes-level high glucose and the Metformin I was prescribed for that made me completely lose my appetite- most food was repellent to me, and I lost tons of weight (but then, I needed to after years of hormone treatment!) There are other medications for the glucose issue though. It was my fourth line of treatment but I had progression after 6 months, as I have had on everything since Palbociclib/Letrozole. I found Fulvestrant and Capecitabine both pretty tolerable. I am now about to start Elacestrant as I have the ESR1 mutation and it has just been appproved in the UK- hopefully it will be soon in France too. Good luck with whatever you decide.

Jackie x

[Lulu4545]

Hi Jackie,

Thank you so much. What kind of progression sid you have when you had to move on from Palbo/Letrozole? How long had you been on the combo and what did you have next? A lot of questions, I'm sorry, but I'd like to know before making a choice. I'm just wondering if it's not to early to change given my progression is rather small compared to my initila diagnoses.

I'm not sure the new combo offered will do better than the current one I'm on.

All the best,

Lucie

[Dragonfly2 in reply to Lulu4545]

Bonjour Lucie!

My heart goes out to you as you face these terrible choices….my sense is that you are still a young woman and are desperate to halt the progression of this disease. Right now the science can only delay progression but the choices are far ranging with their own special hell in side effects.

After nearly 5 years of MBC ( I had BC back in 2003 and thought I was home free), I’ve realized that I must protect my body while still using the most effective medication. And I strongly recommend radiation to address tumors. I was on IBrance with Anastrozole and after testing for PIK3CA started Piqray with Fulvestrant…and it’s been a year on that last med. Throughout my treatments I’ve had radiation twice which retarded progression, knocked down tumor markers and gave me some respite from the systemic meds. BTW, I’m 72 and my goal is to celebrate many more birthdays.

I’m anticipating that I will be on another med in the near future but I’m hoping to stretch out the treatments as long as possible. I don’t want the meds to breakdown my body trying to beat back the cancer. I guess I’m looking for that balance! And I’m looking at this as a chronic disease…and I just have to keep patching, patching, patching.

You’ve been told here before to stretch out the treatments and proceed thoughtfully with the meds. Doctors aim to stop the cancer….that’s their training… but your job is to have a fulfilling and productive life for as long as possible. Take the radiation whenever possible, and have those conversations with your doctor about the med dosage you are out on. They always put you on the highest tolerable dosage to retard the cancer as soon as possible …but that can have irredeemable effects. Best wishes on your journey…and may it be a long one.

Liz

[Lulu4545 in reply to Dragonfly2]

Hi Liz,

That's interesting. How do you get the testing done ?

Thanks

Lucie

[Dragonfly2 in reply to Lulu4545]

Lucie, the testing I referred to was one for mutations...because the Ibrance had failed the oncologist suspected that the cancer had mutated and sure enough it was the PIK3CA mutation - so the anastrozole no longer was working and thus the switch to Piqray and Fulvestrant . There is a new drug now to address this: metastatic hormone receptor-positive, HER2-negative breast cancer with a PIK3CA mutation that has grown or come back during or after hormonal therapy treatment for early-stage disease, your doctor may prescribe inavolisib (brand name: Itovebi) in combination with Faslodex (chemical name: fulvestrant) and Ibrance (chemical name: palbociclib). I hope this helps !

Liz

[Lulu4545 in reply to Dragonfly2]

Surely it helps. But in France, we has to wait ages before we can have the new drugs. I think Ibrance only started being given in 2019!

[LaliChicago]

I was diagnosed in March 2019 and started on palbociclib and letrozole with xgeva. I was on that until June 2023. After I had some progression, I advocated to stay on cdk inhibitors and switched to ribociclib and fulvestrant. My oncologist expected me to last about 4 months with this change, but I’m still going strong. My tumor testing indicates it reacts very well to cdk inhibitors. To be honest, I think that what is truly helping is the fulvestrant injections. Just my personal experience. My oncologist told me there is a fairly recent study where oral fulvestrant was given to patients with positive to negative tumor mutation, and they did very well. Unfortunately, because the study was done on those with the mutation, the FDA has only approved the oral fulvestrant for that population. So for now, I live with the monthly injections.

[Lulu4545 in reply to LaliChicago]

Hi Lali,

I would have expected Fulvestrant to be suggested as second line.

My onc has just suggested to stay on the same combo and have SBRT on the lesions. Hope that gives me some time before change.

All the best

Lucie

[TammyCross in reply to Lulu4545]

Yes, that is the question. If you do not have the ESR1 mutation, fulvestrant is great. It is not the same as the aromatase inhibitors; it is a SERD. It worked wonders for me as my first line of treatment (with palbo). It is easy to tolerate. Especially as you are asymptomatic and your progression is slow (as I am, both), why go for the big guns as second line of Rx? Have you asked? Is your oncologist responsive to other suggestions? Can you get a second opinion in Paris?

[Lulu4545 in reply to TammyCross]

I had onc on the phone and she says we are going to keep the current combo and have some SBRT on the lesions. I just wonder why they didn't do SBRT on the other 3 lesions they radiated. Because I cannot have anymore traditional radition on my spine because I've already had the max of 90Gy.

[TammyCross in reply to Lulu4545]

Who knows? Very frustrating. Were the others more extensive or harder to reach? Did the oncologist not have access to SBRT? I have had a couple of treatments when there was a better option, and eventually got switched, but why? I have no lasting damage from those, though; just loss of time when I might have been taking something more effective or less debilitating.

[Lulu4545 in reply to TammyCross]

I think it's not commom practice in my clinique to do SBRT on bone lesions. I had to insist I didn't feel ready to give up my QOF and change treament to get my onc to convince the radiologists. I also pointed out that in Paris they could do it.

[HelenWi]

hello Lucie,

I don’t have experience with affinitor but with just a few new lesions, I would opt for radiation that is capable of targeting your lesions without harming other tissue. This gamma knife technology is very advanced now. I was on Piqray for 18 months during which time we use radiation on a couple of lesions on my spine. I think extending your time on each drug if possible is a good thing. The other thing I would recommend is to do a DNA test such as Guardant 360 to see if you have any mutations because mutations can suggest other possible treatments.. for example, to use Elacestrant, you need to have the ESR1 mutation.

Also, before moving to another targeted drug, I would think that Faslodex replacing aromasin would be an option. Aromasin blocks your hormone production, but Faslodex degrades the hormone receptor itself. Some people also move successfully to another cdk4-6 drug such as Kisquali.

Of course I am not your doctor and I probably don’t have enough details but I have mentioned the things that I have learned through my last 2 1/2 years of dealing and learning about MBC. Best wishes with whatever approach you take.

Helen

[Lulu4545 in reply to HelenWi]

Hi Helen,

I'm in France and I don't think they test like in another countries. I have never been tested for any mutations. How does this work?

Thanks

Lucie

[HelenWi in reply to Lulu4545]

I searched and I think they do have it in Europe. There are also other brands of blood tests..

They get a blood sample and they look for a large number of different mutations. There are different targeted drugs that can be used for specific mutations. For example, I am her2 - but the test showed that my her2 gene has two mutations which indicates that I could benefit from some drugs that target her2+ breast cancer. Or you might have a piq3ca mutation for which there are at least two drugs. Many oncologist have their breast cancer patients take this test every time there is progression. Here is how I searched:

google.com/search?q=which+c...

You should ask your oncologist.

[Lulu4545 in reply to HelenWi]

I already asked her and she answered it's long and very complicated. She said the same for genetic testing. I have a 15 year old daughter and I'd like her to avoid what I'm going through.

As for radiation, there are some places with precsion machines but I just don't know if I can have access to them. My clinique offers at the best SBRT.

I'm upset they didn't use it on the first 3 mets they treated. I had 30 sessions of 3Gy. I've looked it up and it's really a lot. I'm likely to develop some other pathologies.

All I hope is that SBRT can be used safely.

[utahsara]

Praying for you Lulu, have you tried Xeloda?.......My wife who has Met Breast Cancer to bones was on Ibrance, which worked for a few cycles, then stopped working, then onto Pigray, which didn't work at all, and now is on her 8th cycle of Xeloda, and her last 2 Pet Scans show 100% of her bone cancer, which has spread to her spine, neck, hips, chest bones, liver, is now gone and not showing up at all. also her tumor markers ( CA 15-3 & CA 27 29 ) have dropped 800 points

[Lulu4545 in reply to utahsara]

Not yet. But I'll certainly be having it one day or another.

thanks

[HelenWi in reply to utahsara]

Xeloda is amazing isn’t it? My markers went from1389 to 79 in 3 months. Praying it keeps working for al of us!!!

[fancydog]

Like some of the others comments I have been able to simply have radiation to new small tumors that have popped up and been able to just stay on Faslodex alone for 10 yrs now!

[Lulu4545 in reply to fancydog]

Hi Fancydog,

I've already had radiation on 3 spots and it seems there is a limit to how radiation you can do. My onc is suggesting SBRT next time. Seems it's more precise and gives less radiations. I'm just surprised they didn't do this on the other 3 spots. How many times have you had radiation and where was it ? Thanks a lot

Lucie

[HelenWi in reply to Lulu4545]

Hi Lucie, yes, absolutely it should be SBRT to remove small lesions. I think the high precision is particularly important on the spine..

-Helen

[fancydog in reply to Lulu4545]

I have had 2 separate episodes of radiation several years apart. First was a mass in a lung and that was regular 15 treatments, then recently has SBRT to a mass by a kidney for only 3 treatments.

[Lulu4545 in reply to fancydog]

That's much better than what I've been through:

- 20 sessions on the Breast

- 3 times 10 sessions of 3Gy on lesions in L3, S1 and T10

I realise it's really a lot.

Next time it will be SBRT.

I remenber asking the doc at the time why they didn't use SBRT and she answered no one did, il was just for the brain mets!

[Shalive]

Lulu I wish you good luck with those meds I’ve been through 8 med comps and none were as bad as those I had terrible side effects and I wal allergic to them I was traveling and broke out in a rash with hives I was sooo fatigued Just because I quit taking them, the rash and fatigue and mouth sores took over a month to go away

[Oberammergaux2]

hi Lulu,

So sorry to hear things are hard right now. Take heart! I have been on Afinitor and Exemestane for well over 12 years. My one caution would be do NOT start out at 10mg with the Afinitor. Start at a low dose and allow yourself to adjust to it. I have been on as much as 7.5 mg and eventually weaned down to a dose of 2.5 mg. I have been on this dose for years and it has held me steady with only occasional small liver mets. Now, except for “once in a while” mouth issue, I take my daily dose and am just fine with it. It’s a good combination that started off being given at the “recommended” dose of Afinitor 10mg and that is often too rough. Patients started dropping off the Afinitor instead of being offered a lower dose. The liver mets I’ve had have been treated with radiation by gamma knife. Gamma knife radiation is very well tolerated, some minimal fatigue, nothing to slow you down. If they can use it for any mets, please consider it.

Sending you hugs and all best wishes! Keep us posted!

[Saltandlight]

Hi Lucie-sorry to hear you’re faced with this all of this. I’ve had MBC since 2017 and was on Ibrance/letrazole combo until 2023 when new bone mets showed up in my spine. I had radiation in several places, one kypholasty and spinal fusion of my thoracic spine last year. My fired oncologist put me on Xeloda during this time and took me off for no good reason then Trodelvy which wrecked me. I have since changed to City of Hope and have been on Afinitor and Aromasin since September with little side effects-some fatigue mostly. The naturalist at COH told me to use the Dexamethasone gargle and to put the Afinitor tablet in mini marshmallows and have no issues with mouth sores. My PET scans show significant improvement as well. We’re all different but hope this helps and gives you some hope for a good run if you decide the Afinitor/Aromasin route. I’ll be praying for your decision and for peace for you during this process. Take heart and know you are loved ❤️🙏🏻!

[POT2018ery]

I’ve been on faslodex and ibrance for 6.5 years with no progression. The side effects were minimal, thinning hair and loss of eyelashes. I feel good except for rump bumps which make getting the faslodex more difficult.

[Lulu4545 in reply to POT2018ery]

Thanks you for your answer. I'm not sure my onc will accept to put me on this combo as I've already been almost 5 years on Ibrance and Anastrozole and had 3 episodes of oligoprogression treated with radiotherapy.