Truqap update

[Bonnie1942]

I persuaded my onc to start me on this new drug in April. Since starting I have had great results. My first set of labs was great, so we backed off the amount of drug due to diarrhea. I had one set back on my 2nd blood tests but adjusted my meds and am back to lower values on tumor markers. My latest scans show stability in all areas. I am so glad I learned of the drug on this forum! My onc didn't know about it. Thanks to all you great people. Keep posting and keep us updated. God bless you all.

[HelenWi]

That is such great news, Bonnie! So happy for you and thanks for letting us know about dose reduction possibility.

(My onco also didn’t know about it til I told him after hearing about it from Dana Farber. I’m not on it yet but it’s a possible next line of treatment. I’m curios, do you have a pic3ca mutation? Have you been on Piqray yet? )

[Bonnie1942 in reply to HelenWi]

Never on Piqray.

[Tantalon7211]

that’s great info thanks

I am still on Ibrance and good to know what to talk to onc about next

How long have you been diagnosed Stage and did you have bone Mets did you use Ibrance

[Bonnie1942 in reply to Tantalon7211]

No Ibrance. Orig dx stage 2 1994; chemo and Nead till 2009 stage 4

[TammyCross in reply to Bonnie1942]

That is 15 years of mbc? Then you are one of the super thrivers. I think there is a registry or something to study those who are exceptional.

[pink2211]

hi Bonnie, that’s a wonderful news. Did you have Pikray before Truqap please ?

[Best521]

It is great to read the Truqap is working but shocked your oncologist didn’t know about this medication. It is hard for me to understand, since oncologists, even if they are not breast cancer specialists, are able to follow the standard of care and new developments. Even patients who aren’t medical oncology professionals are aware of Truqap through internet searches or youtube videos on MBC. Trials are difficult to track and follow but not standard of care and FDA approved drugs.

[MettavivorDS]

That’s great news about how quickly Truqap has worked for you! You give me hope for this new drug. My scans showed progression a couple of months ago and I needed to change my doctor and cancer center to get the kind of care that’s now needed. I’m now at Massachusetts General Hospital in Boston and have the best oncology team I’ve ever had!

My new oncologist is an Md/PhD who does clinical trials. He tested a drug similar to Truqap, but that one didn’t make it to market. Since I’ve developed the PIK3CA mutation , my my onc added Truqap to my treatment regimen last week. I’ve been on fulvestrant, Lupron and Zometa for nearly 2 years, but scans showed some slight progression in March. The Guardant 360 test showed a PIK3 CA mutation developing. Since there was an targetable mutation, my oncologist wanted to add the AKT inhibitor Truqap, instead of a CDK 4/6 like Ibrance or Kisqali or an mTor inhibitor like Everolimus to help the other drugs work better. Rather than starting at the highest effective dose (200 mg X 2 twice a day for 4 days on and 3 days off) and reducing down, I’m being started at half that for two weeks. If side effects are tolerated, the dosing schedule will be restored to the recommended maximum dose.

Your report in Truqap gives me hope! Thanks so much for sharing.

[TammyCross in reply to MettavivorDS]

Great you are being started on lower dose and working up if tolerated, instead of the other way around as is usual. My oncologist has started doing that, but I think only because of known vulnerabilities.

[love2golfwell]

So happy this medication is working for you! Hope it continues to work well for you. Sending hugs and prayers.

[Yikes123]

Good for you!

At the doc’s suggestion, I take Imodium prophylactically on day 1 of my 4 day TRUQAP cycle. Doing so helps control the diarrhea

[Californiagolfbuddy]

Hi Bonnie! I just started on Fulvestrant and Truqap - 200mg 2x/day. You give me hope for this new drug to work on my increasing Bone Mets. I was on Oserdu which did not work at all according to my latest scan. It is a scary time navigating this newer diagnosis. I so appreciate you talking about the lower dosage as well as I have a feeling that I will be heading that direction. I do have a new Pc3ca mutation discovered on the last scan.

Thank you for sharing your journey and I wish you the best in your journey.

[utahsara]

That's wonderful news Bonnie, and thank you for sharing, my wife, with stage 4 Met Bone cancer, starts Truqap in a few weeks after 7 months on ibrance 100mg ( which sadly stopped working ) and Fulvestrant monthly injection. Praying this new Med works.

[Sharon0122]

Congrats that’s great news! I may talk to my dr about it. I’m in such pain as result of what I’m on. Best to you hugs!

[jersey-jazz]

Great news from you! I too learned about this drug from our wonderful forum. I am waiting for the oncologist to give me the go-ahead. Firstly, she put me on a series of chemo sessions which took me down to what I would call a dangerous, life threatening level. I blew the whistle on it and loudly refused any more chemo treatments. It turned out that my iron absorption level was a very low 8%. I had to point it out to the oncologist. Three infusions have made all the difference to me. I was disallowed from going on the Queen Mary 2, last week. hopefully, there will be another time with my friend to do that.

God luck to you, Bonnie! You may be senior to some but I am senior to you, having been born in 1937. Well done, us!