Dear Carol,

I think you make many good points there about Metformin. I got a prescription from my primary, based on its anti-cancer activity, but so far haven't taken any because my MO was not in favor of adding into my already complicated mix of drugs. I also read that Sandpiper trial excludes Metformin users (for diabetes), and then also read that Meformin should be synergistic with other drugs as well, so it makes sent to me, for now, to drop the Metformin prescription and plan to pick it up again when I am on some later drug treatment. A friend who takes it for diabetes said her primary said that the body can get to a point where it is not sensitive to it anymore, so if there is an 8-10 year window when it is effective and not after that, then I probably shouldn't be taking it if I don't really need to.

TarHeel-Michelle- What are you currently taking? Are you doing OK on it? And how long did it take to lose your SEs from the Taselisib? Thanks!

SHET- I will ask next week and see what Dana has to say. I do know that without knowing if you have the P13k mutation ---that for me, the next step was falsodex alone. I bet if I tolerated Ibrance and could have stayed on a therapeutic dose like the 100-125 or even 75 for 3 on 1 off maybe I would be doing the Ibrance as well- especially if there was just bone involvement, but that turned out not the case for me. I was 75 two on two off and did a couple of cycles of as the final two doses before I had the progression. Dana said there really wasn't a trial that I would benefit from more than just the faslodex alone. Then he uttered the words that the time frame for faslodex is about 8 months before it fails... Geesh-- In the interim, I am having mutation testing done. No clue why they dragged their feet on that testing.

Hugs Carol

Curious- you are so well educated and understand this so much better than I do. Thank you! MO told me it will take 4 months for the testing to come back? I know they did blood work, and have slides from my bone mets. I also am having some unpleasant SE from the faslodex which I think is neuropathy. I have so many questions for him next week!

Thanks Carol

Before my wife (Pauline) got the results of her genetic testing back, which also took a pretty long time, her doctor was planning to put her on Faslodex+Ibrance. Shetland, as far as I know this would be the next best option for you other than chemo if you don't have the mutation that would qualify you for the trial with taselisib.

The trial my onc mentioned is the SOLAR trial with faslodex plus apelisib or placebo. Unfortunately for me, like SANDPIPER, it requires the PIK3CA mutation. But worth looking at for others!

After reading about SANDPIPER and SOLAR, I requested the consent forms and info. Both studies indicate that some people without the mutation will be enrolled as well to see the drugs' impact on that group. It's first-come, first-enrolled until they reach their quota for those without the mutation. After that point, they will only be enrolling those with the mutation.

Shetland, I totally agree with your question on not knowing which drug failed. I'm on Ibrance + letrozole and my onc is adding fas to the existing mix. I will post more on the Ibrance thread.

Moissy- I read that too, but in one paper they refer to the wild-type PI3K patients as 'another control group', so you may want to wait for more data to roll in before jumping for those few open slots, as the existing data indicates these drugs need mutant or overexpressed PI3K

Z.,

STAT news is a great resource. I've learned so much from their weekday stories, synopses and links!

Healing regards all, Stephanie

cure-ious, you asked how long my side effects lasted after I stopped taking taselisib. About 2 months, and I still have have one that lingers, hard to describe -- like painful leg cramps, but in my back. The GI issues disappeared faster than skin and hair/nails problems. Oddly enough, taselisib seemed to depress the AI side effects. Immediately after stopping taselisib, I had many more AI side effects that had not occurred during first 3 months. I'm contemplating going back on low dose of Afinitor to see if it has similar affect on my AI (Femara). Not sure how much longer I can stay on Femara. The side effects are worse than the cancer, and I'm only taking one pill every other day. PET scan and doctor visit next week.

Stage IV Breast cancer I am about to start Sandpiper Phase 3 trial in a few weeks, I have tested positive for the mutation. Interested to know how others on trial are going. My breast cancer was in remission for 20 years. Reoccurrence August 2014 in Lung & Bone. Originally given 18-24 mths median time. Treated Anastrosole stable for 24 mths. New bone cancer in vertebra found mth 26 and tumour markers starting to go up again. Hence offered Sandpiper trial.

Terrific article and site, LTS, many thanks! Kathy

I have an update about my wife Pauline, who started on this trial two weeks ago. Unfortunately, that's as far as she'll make it because her bloodwork yesterday showed very elevated liver enzymes and tumor markers that have doubled over the last month. Based on that she is being taken off the trial. She was feeling pretty poorly most of the week, with moodiness, bone pain, and nausea. It's hard to know which drug caused those side effects, or whether it is the cancer itself. It's also hard to know whether the liver enzymes are up from the trial drug or from the liver mets.

So, we know definitively that her cancer is highly aggressive, and in order to get her liver function back under control her oncologist is starting her on chemo in the next few days. She's having more bloodwork and a CT scan today, which will determine the choice of chemo. This is not where we wanted to end up so quickly. I really hope the chemo is gentle on her and that it gets the liver mets under control. Ugh.

Thank you, Stephanie, as always.

Gina

hi, I have read all the previous posts.

I am currently on the Sandpiper phase III trial for 14 cycles now. After the 3 cycle my blood sugar increased to the point I was having issues with my eyesight. AIC was at 13. I was given a reduced dose and Metformin which has my sugar under control. I get CT scans every 2 months and each time the 2 targeted lymph nodes are shrinking. I find this combo very tolerable.