Just wondering?

[Justme153]

Who here has been taking PIQRAY and Faslodex? Have you had any sever side effects? What should I know about this combination?

[HelenWi]

Hi Justme,

I’ve been on Piqray/Faslodex since Feb 2023. Keeping in mind that everyone is different, I’ve generally been ok with it. I’ll tell you my experience: I did get the rash after a few weeks but it lasted only a few days —I took Claritin and applied a cream my onc gave me. I haven’t had diarrhea but much looser bowels, not really an issue. My mouth felt a little weird — like I’ve eaten an unripe persimmon , and that has gotten better. My glucose hasn’t gone up. I eat a normal diet including carbs but not much sweets, especially initially because I was worried about potential diabetes which is a common side effect. Lately I’ve been having a little ice cream almost every day😉. My hair has gotten thinner. So all in all, a few side effects but quite tolerable for me. Hope it works out ok for you.

Helen

[Rbeth in reply to HelenWi]

I was on Piqray and Foslodex for 1 1/2 years. Diabetes after a few months. High numbers. Was on shots 4 diabetes meds. A mess. My skin on my legs shed every night, my nails split. I took Foslodex so long I have pain. I am in Orserdu and my cancer numbers are going up. So time for a change.

I felt tired on Piqray. I don’t know why this is underlining?

I will not go back on Piqray. Good luck to you. Reenie

[Laskia]

I've been on Piqray and Faslodex since May of this year with a month break for an emergency operation. It is pretty bad at first with the rash, mouth ulcers and dreadful nausea, but it settles down. I still get intermittent nausea, looser bowels and terribly dry skin. all my body hair has gone (yippee), but my head hair is much thinner and drier (boo!).

I'm on metformin and Jardiance for the blood sugar control and wear a continuous glucose monitor to keep an eye on it. eating a low carb diet is helping keep it down too and avoid glucose spikes.

I do get tired, but my main problem is lack of appetite, loss of sense of taste and weight loss. I just cant seem to put any weight on. The issue being the low carb diet I think. My oncologist wanted me to go keto, but the diabetes team are worried about ketoacidosis, so want me to stay low carb.

Its not an easy drug, but not the worst either. You get used to it and tolerate it after a while.

[Justme153 in reply to Laskia]

What dosage are you on?? And how long about would you say till it settles down??

[Laskia in reply to Justme153]

I started on 300mg and have remained on that dose. The rash disappeared within a week as did the mouth ulcers and swelling of the lips.

I would say that after 3 months, you begin to feel close to normal - maybe even less as my story was complicated by having an abscess in my gallbladder which was making me very sick. I blamed it all on Piqray and didn't go to the hospital until it was about to perforate! So, quite possibly, the drug is not as bad as I thought!

I also take a supplement called NAC as it is supposed to help the Piqray to be effective - in mice at least... But its worth a try.

I take domperidone iI feel nauseous, and drink a lot of water, but most days I feel fine.

[LDR1]

I’ve been on this combo for 3 months and have been tolerating it well. No big issues, some occasional GI upset, and a bit of hair thinning. Fingers crossed I can stay on it for a while 🤞🏼🙏🏼

[Justme153 in reply to LDR1]

What dosage are you on?

[LDR1 in reply to Justme153]

The standard 300mg / day (two 150-mg pills taken once daily)

[Remyan]

I was taking both meds and is was not the faslodex that I still take but the piqray that gave me cachexia, ulcerative colitis and proctitis with abcesses. I was down to 69 lbs. and in hospital 3 times. Had to DC piqray. Am still here 2 years later . Piqray did shrink tumors, take Entyvio infusions for UC but it is not over. Have edema and abl. Got numerous compression fractures from osteoporosis from first line of treatment ibrance and letrozole. Cannot hold my head up because of degenerating spine. Have severe bi-lateral carpal tunnel and gout. just had ct scan today trying to find edema cause. MBC in lungs is no easy road.

Got new mass in axilla and something in right lung but it seems to be stable. Will see what pet scan shows next month. I wonder why I am still here.

Still everyone's body is different and some people have no side effects from treatment meds.

There is a lot for you to consider.

Please forgive me but I am very upset because I just read that Bestbird died.

She was the best of us all.

[Fiercefighter13]

I was on the combo for nine days. The rash got so bad that my entire body turned purple including inside my mouth, eyes, under my nails, everywhere. From what I understand, a rash is common on Piqray, but the type of rash I had is not. That being given, I had to stop it and went on to Xeloda. Something to keep in mind, my markers are pretty indicative of how well my therapies are working, or not, and in those nine days my markers went down by almost 300 points! It would have worked well for my cancer, but it was taking me down with it. Best wishes, and good hopes for you if you go on this therapy, many many people do well on it!! Take care!