Berberine is a natural supplement that brings down blood sugar. I take it 15 minute before eating.....two fasnacts. Lol.
How do you know it is working?
I don't. I figure it can't hurt.
Susan - I was wondering if you have any suggestions for starting the keto diet. Are you still trying?
Despite my love for baked goods, I am planning to try it myself. Do you have any suggestions for books etc. I've been reading about the keto flu, which has me a bit concerned.
I hope you are still doing well on your trial. I just started cycle 16 of my pik3ca inhibitor (GDC-0077) trial.
It's been easier than I thought but the last month I've been easing up on the strictness of the diet. You don't really have to read a book about it. There are a number of handy websites. In the beginning, you may want to count your net carbs. I tried to keep mine below 70 g/day which is on the high side for keto diets. At this point, I'm not really counting, just roughly trying to stick to no or low-carb choices. You can always google "apple net carbs" or whatever food you're eating and get an answer. After awhile, you'll know what you can eat. What makes it easy is that you can eat with other people, go out to eat, etc. and just avoid the carby parts. It's not as difficult as gluten-free or calorie-counting diets. You can eat as much as you want of zero carb foods like meat, fat, oil, leafy greens, and other things. Vegetables grown below the ground are generally carby, like potatoes and beets. Fruits are a bit more complicated. I avoid bananas but eat berries. I also eat a lot of macadamia nuts, avocado and eggs. Being Asian, I thought I would miss rice, but I found that I don't at all. I mainly miss bread and waffles. I have been researching low-carb bread recipes. If there's a special dessert, I take one bite so I don't feel deprived. Because I'm doing it to keep my blood sugar down, not lose weight, I don't think I have to actually be in ketosis all the time, just minimize the sugar in my bloodstream. This is why I'm not so strict about it.
I feel so much better in general and my cholesterol has never been lower, surprising since I eat a lot more animal product than ever. I will likely continue to limit sugar and carb intake even after I switch treatments.
Thanks Susan - your information is really encouraging. I'm already missing bread...and I haven't even started. I have my last hot cross bun lined up for tomorrow.
We've been eating "flexitarian" these past couple of years, and the keto meals look like they might in some ways be easier in their basic-ness. Just back to shopping in the meal aisle again. I don't want to lose any weight (already lost 10 since starting this - that's enough) so I am going to have to stay focused on having enough of low carb food around.
Hello everyone, my MO and I were discussing Alpelisib as a possible next option. I have the P13ka mutation and have previously responded very well to Afinitor (Was NED for over 3 years). The caveat here is that when I looked at my Foundation One results that are based off of my initial tumor removed from the breast, I also have the FGFR1 mutation which I've read prevents Alpelisib from working even when you have the P13ka mutation. My MO is currently finding out more on this. Have any of y'all heard more on this? As always, thanks in advance!
Here is one paper that says FGFR1 amplifed cancers do not respond to Alpelisib: http://clincancerres.aacrjournals.org/content/clin...
Apparently FGFR1 amplication is rather common in breast cancers, so this is an important consideration, good that you had the sequencing done.
Interestingly, the FGFR1 amplification was reported to have NO effect on the response to Affinitor, which consistent with the great run you had with that drug. Do they need to check that your cancer cells still have the FGFR1 amplification? or is that something that would not likely change?
There are specific inhibitors for FGFR1 like erdafitinib:
Cure-ious, thank you so much for sending both those pieces of information, I will discuss both with my MO. As for FGFR1, it does seem like some cancers develop the mutation after Ibrance so it seems like a pathway they are trying to target. I'm really hopeful one of those FGFR inhibitors shows good results. The clinical trial with CDK4/6 inhibitors and erdafitinib sounds really exciting and I cant wait to hear about some experiences and results! There just seem to be so many trials that I'm hopeful and cautious all at once! What a situation for us all to be in!
I am unsure if they will check for FGFR1 again. I've been on so many treatments and up until now all of my mets have been in lymph nodes near my lungs. And the last time they were so weirdly positioned that my MO didnt even want to try radiation for fear of affecting my lungs and heart. He also said it's very difficult to get that tissue out so unfortunately other than a liquid biopsy (I sent a blood sample to Guardant), I'm not sure how else we will find out.
I was going to ask about lungs, because one drug ponatinib was reported to work well on one FGFR1-amplified patient and reportedly works on lung:
but that drug has SEs like hypertesion and heart issues- I wonder if Alisertib would work on these cancers?
PS A recent report shows that FGFR inhibitors synergize with BET inhibitors like JQ1- this is a combo you might want to keep on your list to watch out for future trials!
Cure-ious thank you so much for all this information. It looks like a number of possibilities might emerge for the future. It sounds more and more likely though that if Ibrance has infact stopped working for me, I will move on to Xeloda or ivy chemo. My cancer did not respond much to chemo (when I was stage 3) except for Halaven where we saw a partial response. This makes me wonder if I'll respond to Xeloda at all..
Something else that struck me is Afinitor as an MTOR inhibitor was not affected by FGFR1 I wonder if any others are. NewGardener, you are on Gedatolisib/GDC-0077. I looked around for literature on it and didnt see any reference to FGFR1. From what I've read, you have also responded well to Afinitor. I'm not sure how accessible GDC-0077 will be for me but it was just a thought I had.
Ann, I was just wondering the same thing about Alisertib, there have been quite a few really strong responses they saw on the phase 1 MBC trial of that drug, and I've read its often a mechanism the cancer uses to escape from Alpelisib. Will look for any info about that..
Hi Ann, my foundation one test did not show a FGFR1 mutation - so it wasn't even discussed as I enrolled in the trial. I am learning from these discussion on this board!
It's funny to think that year on Afinitor was "responded well", but, yes, after a reduction in dose because of the mouth sores, I did make it a year.
I think my trial is still enrolling ( https://clinicaltrials.gov/ct2/show/NCT03006172 ), including sites in the US, so hopefully it could be an option. Good luck!
Cure-ious, I definitely have my eye on Alisertib and thank you for keeping an eye out, you are awesome!
Thanks for the link Heather! Yeah, at this point I'd give anything to have a treatment last a year! Hope you continue to have success on the trial!
So looks like the party is over. Had my second chest scan that showed progression in my lungs. No progression anywhere else, which I'm grateful for. I have been coughing a little bit but it hasn't been bad. Disappointing because median PFS is a little over 11 months and I have only gotten through eight 28-day cycles. Will see my MO, Hope, next Tuesday.
SusaninSF- I’m so sorry to hear this news. Sounds like it did work for awhile though. I wonder what Hope has up her sleeve for you. Are they adding Alisertib to the Apelisib yet- or too toxic? Wonder if it was the letrozole that failed?
Keep us updated on what you choose. ( I am 3 weeks into cycle one of AA)
Thanks Nkb. Will let you know what she suggests!
Susan, I'm so sorry to hear that Alpelisib is no longer working. Dr Rugo is familiar with all the latest research/treatments and UCSF has a large number of breast cancer trials. You are in excellent hands. I'll just throw a couple of options out that my oncologist is considering for me in case it might help you get your head around options before your Tuesday appointment:
Oral SERD Trials: EMERALD Phase 3 Trial of RAD1901; Phase 1 Trial of G1T48
Morpheus Trial: many arms with immunotherapy Atezolizumab (Tecentriq)
Tecentriq (atezolizumab) + Entinostat (HDAC inhibitor)
Keytruda(pembrolizumab) + ATR Inhibitor (BAY-1895344)
I'm glad that you will have a true expert to guide your treatment decision! I'll be praying that your next treatment is effective and long lasting, with minimal SEs. Please contact me if i can help in any way.
Hugs and Very Best Wishes! Theresa
Thanks SO MUCH Theresa! This is exactly the kind of information I need. Was up later than usual last night researching possible next steps. I know Hope will have thought it through for me and will suggest some options but I like to be prepared. There are so many options. Wonderful and time consuming!
Sorry to hear Susan that alpelisib is no longer working. I'm still on the trial just not taking alpelisib but still getting faslo. I guess I'm the control arm? I will be following what you head to next. kindest thoughts. cheers, dee
Susan- I’m pretty sure that Dr Munster ( at UCSF) is a PI for the Morpheous study. It has a control arm with Faslodex only (so not appropriate for me) and excludes most bone only disease.
I know that the Phase 1 oral SERD trial (G1T48) is accepting patients at Stanford (just a couple of patients per month) and there seems to be a lot of excitement around it. Unfortunately the Emerald 3 Trial of RAD1901 (Elacestrant) officially says "no more than two prior hormone treatments". It also randomizes patient to either RAD1901 or standard of care hormone treatment (Faslodex or one of the AIs), and you don't want to be randomized to standard hormone therapy. The Morpheus Trial has a lot of arms (difficult to research), so Dr Rugo would be the best person to determine whether or not one of the combinations would be a good option for you. Some of the other trials I mentioned will be opening at Stanford in the next couple of months. Very best wishes! Theresa
Oh Susan, I am so sorry to hear about your progression.
I also had progression my last scan - but still within the bounds of being able to remain in the trial. But it does mean that I've been doing some research on trials myself (I am a planner). It's also why I decided to actually try the keto diet and get my blood sugar lower (my a1c has been 7ish). "All hands on deck" so to speak.
Like Theresa, alisertib is on my list of questions. I am also wondering about cdk7 inhibitors - there's a trial already at Dana Farber (I don't know about other centres) for the drug SY-1365 (NCT03134638). I wonder if more are in the pipeline (there's CT007 in the UK also maybe THZ1?).
I also saw the Morpheus trial, but I've had fulvestrant so I don't know what that means to my eligibility.
My oncologist in Canada mentioned one he has a phase 1 PRMT5 inhibitor trial. NCT03573310. It seems to be in Florida and Nebraska too. And Spain.
I think the option I have the most interest in is repeating a cdk4/6 inhibitor...most likely abemaciclib. It's still not available in Canada, but I'm hoping soon (and then I'm hoping for compassionate access). There's a trial at Dana Farber for abemaciclib and pembrolizumab that is on my list of questions (NCT02779751). I'm not sure that I'm a good candidate for immunotherapy, but it's a on my list to ask about.
Good luck as you develop your own list and at your appointment.
Thanks Dee, Nkb, Theresa and Heather!
Looked at the qualification for entering these trials and this is what I found:
1) EMERALD Phase 3 Trial of RAD1901: Must have an ESR1 mutation, which I don't have.
2) Morpheus Trials: Must be TN, which I am not.
3) Erdafitinib: Must have FGFR amplification, which I don't have.
4) Avelumab: Seems to work best for TN. Also, two patients died of treatment-related causes.
5) Mesothelin-specific CART T Trial: Only 0.13% of ER+/HER2- patients express mesothelin so it's unlikely that I do.
6) Alisertib: Couldn't find a trial where I would be sure to receive the drug.
I'm no medical researcher so I could be wrong. Let me know if anyone has thoughts on this list or other recommendations!
Susan- I was told by dr Melisko that the morpheous study was for ER+ and the only people with bone only that would qualify needed to have a 2 cm hole in their bone to be able to measure which I didn’t have. It’s a Genentech study and one of the controls is faslodex only. Odd that you were told TN. But, you have something else to measure. you will find out the re criteria at your appt and can let us know.
Thanks Nkb! A 2cm hole in their bone! Who has that?!
Susan, what about Verzenio as a monotherapy?
The link for the oral SERD (G1T48) trial is: https://clinicaltrials.gov/ct2/show/NCT03455270.
The trial lists no more than 4 anti-hormonal treatments and no more than 2 or 4 chemos depending on the arm. It does not require an ESR1 mutation. I believe that you would qualify, but Dr Rugo would be the best person to determine whether it would be a good option for you at this time. It's a Phase 1 trial started in May 2018 and recently opened at Stanford, although Stanford is not yet listed. You are guaranteed to receive the drug. SEs are minimal. The primary risk is that it may not work. Also, you must be off a SERD or AI for 5 weeks prior to starting the trial. The oral SERD (RAD1901 or Elacestrant) on the EMERALD Phase 3 trial was fast-tracked after good Phase 1 results. So, hopefully oral SERDs as a drug class will prove effective. They are more bio-available than Faslodex, so theoretically reach more of the cancer cells.
Thinking of you and hoping that Dr Rugo has a clear choice for you tomorrow.