Order of treatment- so many different ones!!

[Jessie55]

when I read posts I notice the order of treatment is so different for us all. Obviously it’s good to milk every line for as long as possible. Do any of you worry that you might be moved on too quickly? I’m thinking about my sister moving from Ibrance and exemesane to Piqray and Fulvestrant. Isn’t there anything in between? Is this where a second option can be useful? Would love to know how others handle this?

[Hidden]

Yes I always wonder if the medication is changed too quickly when I am feeling well . If I am not feeling well then it can’t be changed quick enough . Luann

[TammyCross]

Yes, good time for a second opinion, when you are wondering whether or not it is time to change, and to what. I am not sure what you mean by "in between." Those are not more extreme or stronger.

[Jessie55 in reply to TammyCross]

Interesting Tammy. I think you might have picked up on something that I’m confused about. I thought that AIs and CDKs were first line treatments and Piqray and Fulvestrant second line. With that I thought they could try different combos of first lines before moving on and not being able to go back. Can you help 😉

[TammyCross in reply to Jessie55]

Fulvestrant is first line. It is equivalent to an AI. I think it is a SERD (I have to leave for oncologist, so look that up -- blocks estrogen receptors). Piqray is specific for a particular mutation. It is a good one if you have a PIQ3ca mutation. I can't take it because I don't, but you must. Should work.

[Jessie55 in reply to TammyCross]

Ahh Fulvestrant is first line! That’s helps. Thank you. Hope your appointment goes well x

[jersey-jazz in reply to Jessie55]

Fulvestrant is the second line of treatment for me.

[HoneyBadgerLady]

I think it may depend on the specific characteristics of the mets. For me with ER+ mets, fulvestrant is a first line treatment. My oncologist and I discussed it as being effective and not immune suppressing for my particular situation.

[Jessie55 in reply to HoneyBadgerLady]

Good point! Thx

[jersey-jazz]

For me, I was happy to be taken off Letrozole. The sooner the better! As you say, there are so many different treatments. A drug that has been so good for so many was certainly not for me. My previously strong heart took a hit. The cancers grew. Now, on Fulvestrant, everything seems to be balancing out. Although there is a few complaints on our forum about pain with Fulvestrant, all I get is a certain amount of discomfort which I can live with, happily. The important thing is that my numbers are going down with Fulvestrant. Please do not be afraid of changes to treatment. Good for the doctor who sees that a treatment is not working and changes to another one that may possibly work better. If this next treatment doesn't work for your sister, there will be yet another treatment that might.

[Jessie55 in reply to jersey-jazz]

Thx so much for sharing. That’s the thing really - feeling panicked because the cancer is progressing. Good luck with Fulvestrant. It’s not allowed here in the NHS as a single treatment..,,

[Ntash01 in reply to Jessie55]

Hi Jessie55

After Ibrance stopped working, I was also taken off letrozole and zoladex and was given fulvestrant on its on by my NHS oncologist as a single treatment.

What made you think fulvestrant was not allowed as a single treatment on the NHS, just curious as I wonder if it’s a postcode thing?

Tc

Nx

[Jessie55 in reply to Ntash01]

I thought I read it in the NICE guidelines published August 10th relating to approval of Piqray for use by NHS. I’ll double check! X

[Rubyjude in reply to Jessie55]

Yes, I have had fulvestrant as a single treatment. I am in Scotland.

[LibraryGeek in reply to Ntash01]

I think it is a postcode thing in the NHS- I wouldn’t have been allowed it as a second line treatment after Ibrance and Letrozole in Kent, but I got on a clinical trial testing out Fulvestrant combined with Ibrance as second line. Sadly I got progression after 6 months and am now about to start second cycle of Capecitabine.

Jackie

[Glas0824 in reply to LibraryGeek]

Can I ask how your finding it? It’s an option for my next line of treatment.

[LibraryGeek in reply to Glas0824]

I have only done one cycle so far but it went pretty well. I am on 2000mg twice a day for 14 days, then 7 off. The first week I felt quite fatigued, especially in the afternoon, and the second on two mornings I felt mildly nauseous but took one of the anti-nausea tablets I was given and that saw it off. You may have heard of hand and foot syndrome which is a common side-effect- I have been moisturising religiously, and so far only had some tingling and my feet sometimes feeling warm. The two weeks on the tablets I lost my appetite quite significantly, but as I put tons of weight on while taking Ibrance, some weight loss would be welcome! My week off was fine. Early days, but I am hopeful.Do feel free to message me if you want more info, now or in the future.

Jackie x

[Glas0824 in reply to LibraryGeek]

Thank you - I’ve a few decisions to make over the coming week and this is really helpful xx

[Adele_Julia]

I was moved from Ibrance and Fulvestrant to Piqray and Fulvestrant within 11 months due to a slight progression. I’m glad I did ! Keep in mind that next lines of treatment vary for everyone based on the type of ER/PR/HER2 and genes they have (Braca, Pik3ca) In my case I have the Pik3 mutation and Piqray is the drug of choice of that. Within 4 months after starting , my CA 27.29 tumor markers plummeted to 15 when anything less than 38 is normal and for the first time since being diagnosed MBC in Nov 2021, I’m close to NED. We will find out in a few weeks! It also depends if you have bone Mets, liver Mets, chemo before …. That sort of thing …. so there is no single line of a second treatment we all follow.That being said, there are numerous options ! Best to your sister !!

[Jessie55 in reply to Adele_Julia]

Good news AJ. Best of luck to you and 🤞for us too x

[Pbsoup in reply to Adele_Julia]

Are you still doing the COC protocol too?

[Adele_Julia in reply to Pbsoup]

Yes but am going to source the medications likely elsewhere ..I follow Jane McClellands supplements and repurposed drugs etc

[8576]

It is true that we all have different degrees of Cancer. That being said a second\ opinion is a good thing. If the drug is new and allows a slight increase it wouldn't hurt to give it time to work before changing. After all, there are only so many treatments available. In the meantime get a second opinion. I always thought we moved to quickly off Ibrance without giving it a chance to work.

Cheers, June S.

[Jessie55 in reply to 8576]

Thanks. I agree a second opinion will make me feel more secure in what we do next. Hope your current treatment works well x

[kearnan]

It is too vague a question bc every single one of us may have other medical conditions, be on another medication. I was told that my onco's job was to give me the best quality of life for as long as she could but eventually the meds would stop working.

After my disaster with Ibrance, I was put on the lowest dose (I insisted) of verzenio (50 mgs.) and falsodex injections. That lasted for three years and I felt almost normal.

Unfortunately, it now spread to my liver, certain tumors growing, so I was taken off of. (I actually cried bc I knew going forward, the meds would be harsher.

I am now on tamoxifen and afinitor and I hate the way it makes me feel, I had that my feet are so swollen.

But your sister is entitled to ask why her onco is picking those drugs to continue her treatment and why her onco choose those drugs. I did not know about speaking her when first diagnosed. Now, I question everything. But there may be something a bit different with your sister so she is being prescribed those meds. But she has every right to question why.

[Jessie55 in reply to kearnan]

Thanks Kearnan, that is such a helpful and informative reply for us. I do hope your side effects improve tc

[kearnan in reply to Jessie55]

My feet are so swollen. I think this is from the affinitor. I hate the way they look. I have no ankles anymore. I call them my dead feet, bc the skin is mottled, etc. It is now in my liver and apparently growing rapidly so I had a ct scan today and speak with my onco on Thursday, but if, as we both believe, the new meds are not working, I may be done with all this. No point in me being on meds where all I do is stay in my apt. bc of how I feel. that is not living.

But I will see. I read that when one's organs start failing, like say my heart is not circulating enough blood to the farthest part of the body from the heart which is the feet, that the feet will have mottled skin and although one may feel hot (I mean this is August in NYC), my feet remain ice cold. No matter what, my feet are cold.

They do not look like feet anymore. I even bought super large crocs that had holes on top as a design. I had to literally push my feet into them and I could not just kick them off, I had to pull them off and OMG...the top of my feet looked horrible. It was like monkey pox without the color. My feet on top were so so swollen that the skin was forced into those holes so that when I took them off, my feet looked so odd.

AM I THE ONLY PERSON THAT GAINS WEIGHT ON THESE MEDS????