Truqap without Faslodex?

[jersey-jazz]

Last minute Lizzy is my other name. I am scheduled to have a telephone call at the end of Wednesday, Jan 8, with my oncologist. This is to discuss my last PET scan done three weeks ago. She is very, very busy. I am very very perturbed!

I am eighty-seven, with Mets to skull and spine and severe mets to liver, etc. The liver cancers have sent me to the hospital twice in the summer, diagnosed with critical liver failure. Obviously, I have recovered.

I have not had any treatment for nearly a year. Meanwhile, Back at the beginning of 2024. I had urged her to put me on Truqap as a targeted therapy. She ordered it and it arrived on a Tuesday in Feb. She told me not to take it until she gave me permission which as not happened yet. Due to my pestering, it will happen very soon. She will prescribe it with Faslodex. Previously, I had taken FasIodex and it had worked for approximately one and a half years, by itself. Further, previously, I had commented on this forum that I disagree with beginning two variables at the same time. No one can tell the effects and side effects of either one when doing doubles.

Please refresh me on why we MBC's take the two at the same time. Also, please help me understand why I want to take anything at my age with my advanced stage of cancer. I think all my brain cells are going into trying to heal my cancer. This makes me slightly dim.

Thank you in advance!

[Nocillo]

I cannot speak to the question of why 2 medicines are prescribed. Obviously they do different things, but the science always seems to escape me, even though I hear it frequently. As for your second question, that answer is easier to me. You want to take something because you are human and our instinct is to survive. You are not ready to give up, you want to hold onto every minute this life may offer you. You haven’t given up, you are a survivor and willing to push the limits of your physicality. I applaud you for your fortitude and determination. I hope your doctor gets on the ball and gives you the time and attention you deserve and that new meds work for you. Good luck 🍀!!

[Pbsoup]

can’t answer your question, although I think it’s something to do with the different targets in the tumor for each drug.

I AM thrilled to hear your virtual voice here! Xoxo

[jersey-jazz in reply to Pbsoup]

Dear Pbsoup----It is good to "hear" yours, as well. XXX OOO

[HelenWi]

Well, I’m pasting below the AI explanation of why the two drugs are prescribed together. I am taking two drugs (Xeloda and Tukysa) as well and the reason is also that trials have shown this to be effective for my situation. I agree, though, that it’s frustrating when you can’t really determine exactly which drug is most effective. I hope Truqap works well for you!

“Faslodex (fulvestrant) is used in combination with Truqap (capivasertib) to treat certain types of advanced hormone receptor-positive, HER2-negative breast cancer because clinical trials have shown that combining the two drugs significantly improves the time until disease progression compared to using Faslodex alone, particularly in patients with specific genetic alterations in the PI3K/AKT/PTEN pathway, which Truqap targets; essentially, the combination provides a more effective treatment approach for this patient population by attacking the cancer from multiple angles. “

[jersey-jazz in reply to HelenWi]

HelenWi-----You are still going strong and I applaud you! Your cancer survival longevity is inspirational.

I have a supply of Truqap and was told, way back in Feb, that I would be taking a half dose. I weigh less than 90 LB. In a way, I understand the onc's hesitancy about Truqap. I have the genetic alteration but have a severely damaged liver. She is afraid of killing me and so am I. Still, I want to be treated rather than sitting around waiting to die. I am aiming to live till I am ninety. I have two and a half years to go.

[HelenWi in reply to jersey-jazz]

You are amazing! I applaud *you*! ( I’ve only been at this since July 2022, not too long but I am adamant about advocating for myself and researching new possibilities. )

I think it’s cool that your onco is careful about dosage… a low dose can keep your quality of life and keep the cancer under control. Best, best, best to you and I look forward to hearing about your progress. ❤️

[jersey-jazz in reply to HelenWi]

Thank you! XX OOO

[nonna70]

It sounds to me as if at least most of your brain cells are working right along. If you were ready to stop treatment, you would. To continue or to stop is your choice. I pray you and your oncologist come to an agreement about your meds. Happy New Year!

[jersey-jazz in reply to nonna70]

Thank you for the prayers. This agnostic believes in prayers, good vibes and positive energy. They all seem to help both mentally and physically.

[MettavivorDS]

The Truqap, and most targeted therapies do not work by themselves. They are not strong enough. When combined with other drugs, they are shown to delay time to progression. As cancer progresses, more drugs are used in combination to help slow the progression of the cancer. I took letrozole alone for 6 years until it stopped working. Then, I took Faslodex alone for 2 years, until it stopped working. In Spring, 2024, a liquid biopsy determined that I have developed the PIK3 mutation which has targeted therapies. My doctor added the Truqap PIK3 inhibitor targeted therapy along with the Faslodex. My cancer has been stable since I added the two drugs together. Faslodex degrades the estrogen receptors while the Truqap targets the PIK3 mutation. I did not have any mutation when I was first diagnosed with MBC and now I have more than one. Mutations develop as the cancer gets sneaky and learns how to evade current treatments. That's why changing and adding treatments in combination becomes necessary. Yes, you won't be able to tell which drug is causing side effects when taking more than one at once. However, if you don't take both, the Truqap won't work properly. It's a very expensive drug ($20k per month), so it must be used as directed along withe the Faslodex.

[jersey-jazz in reply to MettavivorDS]

I have the supply of the drug Truqap. It kept coming until the company asked if I was still taking it and I told them that I was not. I too took Faslodex by itself and it worked for a while. Although I asked for Truqap way back at the beginning of the year, I am a little afraid of it from the fears conveyed by my oncologist. The info from this forum is so very valuable. Very often, like now, it is so much more useful than the info squeezed out of my onc who has way too many patients.

[fancydog]

Last minute Lizzy you will get this Oncologist attention! After being off treatment for so long I can understand your concern about starting multiple medications at the same time especially with your past liver issue. Perhaps the Onc will also use caution in prescribing for you. Best wishes for a good start in this new year!

[jersey-jazz in reply to fancydog]

Thank you for your best wishes and I send them back to you. I receive them so hopefully.

[utahsara]

My Wife who has had the same Mets in your locations, other than the Skull, has been fighting this Terminal Breast that has spread to Met Bone Cancer was first put onto Ibrance / Faslodex, which worked okay for about 4 months, then was put onto Truqap / Faslodex, which made her very sick with side effects and increased her tumor markers by 600 points, So now she is on her 5th cycle of Xeloda, it works so well on her than her Tumor markers have went down 700 points to the high 100's and her last pet scan two weeks ago show 100% of the Cancer in her Liver, Spine, and other bones is GONE. Not sure if Xeloda would work for you but you may want to look into it. No Faslodex with this med either, only the Xeloda, on for 2 weeks ( 14 days ), then off for one week ( 7 ) days, take a blood test, check blood levels, talk to Oncologist, then back on Xeloda. It's a wonder drug for my wife so far anyway, with only slight foot and hand skin darkening .

[TammyCross in reply to utahsara]

Xeloda is oral chemo, and works on many types of cancer. Faslodex controls estrogen (a SERD) and it has been found to work longer when paired with a "targeted" medication, like palbociclib (Ibrance), abemaciclib...When the three different aromotase inhibitors paired with a targeted medication stopped working for me, I demanded a blood biopsy -- Guardant. Turns out I was resistant to the AI's. I went on Xeloda. It should have worked because the mechanism was NOT estrogen suppression. It did not. I stayed on it too long; mets proliferated. Now I am trying Orserdu, an estrogen receptor degrader, like Faslodex.

[jersey-jazz in reply to TammyCross]

TammyCross---Thank you for all your help. I feel that I am now armed with a new topic for discussion with the onc. It is the drug you take named Orserdu.

[TammyCross in reply to jersey-jazz]

Orserdu only works if you have the ESR1 mutation. You would have to have a liquid biopsy to find out if you have the mutation. -- I would think Xeloda would be a better choice, but it is hard on the liver. Sounds like you have the PIK3 mutation?

[jersey-jazz in reply to TammyCross]

DearTammyCross----How is the Orserdu working for you? What are you taking with it if anything?

[TammyCross]

I have no idea yet if it is working. I had a blood test after 8 days on it. Tumor markers were still high, had dropped just a few points. I seem to be tolerating it pretty well. Some nausea. As always, fatigue, but better than the last one (Xeloda, which is chemo).

I am taking it alone. It is not combined with anything. It is an oral SERD (like fulvestrant, but supposed to be absorbed better by mouth than by hip injection), that works for people with the ESR1 mutation. A little discouraged because it is my 7th line of treatment. She wanted to put off Enhertu, because the side effects are rougher. In the clinical trial, progression free survival was only 4 months. Hoping for more.

[jersey-jazz in reply to TammyCross]

Sorry for causing you to go over the same ground more than once. My body is so exhausted and my brain is foggy for most of the time. Further, my mood is low because a visiting nurse came yesterday and challenged my intention of living for another two and a half years, till I am ninety. She said, looking at my body, I've lost more weight, I am frail looking and implied that I am unrealistic.

[TammyCross in reply to jersey-jazz]

Well, have a lot of milkshakes and challenge her back.

My mother had a devastating stroke at 95, They said she would die quickly because she weighed 90 pounds and they said she had to choose between breathing and eating. She got through that crisis (it turned out they had over-medicated her; as soon as the narcotic wore off, she opened her eyes and asked for a muffin). Then they said a few months. Young people die from this kind of stroke within a year. She lived 3 years, until 98. That was the goal and she made it. She turned 98 in February of 2016 and died in June that year.

So stick to your guns. They are just so bad at figuring out what works for each of us, and what we cannot tolerate. The wonderful nurse practitioner I saw last Tuesday said she has this horrible experience of putting a patient on a medication and reassuring her it will work for years, then the patient has a bad reaction, and she has to say, "Sorry I almost killed you. Let's try something else."

My mood is up and down. I SLEEP so much. It is ridiculous.

There are these new drugs in clinical trials that sound so promising and easy to take. Wish we could get them. But again, one of them that someone on here is taking in a trial works for 50%.

[jersey-jazz in reply to TammyCross]

Dear One------You make me laugh. That is such a good story about your moother and I am taking it to heart. Two of my neighbors and I are going out to a restaurant for a birthday luncheon. She asked what kind of help I needed and I told her, "none". Lately, I have been letting others help me out of chairs and into and out of cars and having people run into my kitchen on little errands with me sprawled on the couch.. Since the bitchy nurse's visit, I am back to doing everything myself. I have a onc meeting tomorrow which may not take place. because of the impending snow storm. If it does, I am ready. XXX OOO

[TammyCross in reply to jersey-jazz]

So you CAN do everything yourself. Does that make your mood better?

But I think you should ask for rides, and people to pick up things at the store or take you shopping. I did that with my feckless roommate for a while and I loved it. "oh, you are going out? Can you get me some....lemonade, chocolate ice cream...?"

I gave my mother Ensure with ice cream in it to make it taste better.