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  • intothewoods
    intothewoods Member Posts: 179

    Hello ladies,

    I haven't been active for quite some time but I might be of some help to ladies just starting and could definatley use some emotional support myself.

    I started on Piqray Dec 10 so I'm half way through cycle 3.

    Janice54, don't be too afraid of this med. I am tolerating it well. No nausea or vomiting. I took Zyrtec for the first month to avoid rash. I get very small almost not noticable at all mouth sores that aren't a problem. And my fatigue is less than when on chemo. I am having significant weight loss which I believe is the Piqray. But my TM are down some and liver function tests are better so those are good signs. I'll do another TM test and MRI in mid March.

    I've been on a wild ride with weight. My legs and abdomin swelled with fluid and I gained 20 lbs in 2 months. MO believes its fluid from liver. Two diruetics took off that weight but I've lost an additional 11 lbs that I think is the Piqray.

    I've also developed restless leg sydrome and I'm not sleeping well AT ALL.

    On top of all that I'm having vision issues related to cataract surgery and severe dry eye.

    It's ironic that my biggest QOL issues aren't cancer related at the moment.

    Wishing everyone a good day

    Lisa

  • KamAPRN
    KamAPRN Member Posts: 2

    I just started my second cycle of Piqray. My major problem is blood sugar control. I’m on three different meds for BS. Fatigue is significant, but not debilitating. Some nausea, controlled with Zofran. Curious about the long term effects of this new drug. Tumor markers jumped up, but isn’t uncommon when starting new regimen, but still concerning. I’ve had more pain on this drug than any other treatment. More MRIs next week to evaluate the new pain.

  • BevJen
    BevJen Member Posts: 2,341

    KamAPRN,

    Don't know if your doc would approve, but you might look into using Berberine to help with the blood sugar. I'm not on Piqray, but I was pre-diabetic for years. My internist prescribed 500 mg of Metformin a day (I'm guessing you might be on that) and I put myself on 500 mg of Berberine per day. Voila -- blood sugar has normalized.

  • moderators
    moderators Posts: 8,633

    Thank you all for sharing your experiences. KamAPRN, welcome to our community. We are routing for all of your body responds to piquray Medicating

    Here is some information from our site, in case it's helpful: piqray

  • Pots
    Pots Member Posts: 189

    Thanks Moderators for sharing the Piqray information sheet link. Regarding the information provided, I think it would be helpful for people on this drug to also receive the Faslodex side effects information. I think it is also important on the Piqray side effects to indicate that we may experience some but not all of the side effects and perhaps report on the percent incidence based on the clinic trials. This drug is very new and most GP and many MO are not aware of the SE. Regarding drug interactions, the most recent information out (see Practice Update article this past week) is to avoid antioxidant supplements as they interfere with the drug action. Thank

  • moderators
    moderators Posts: 8,633

    Thanks, Pots! Will bring your feedback to the editorial team!


  • NMJanet
    NMJanet Member Posts: 16

    Hi everyone! Haven't been on here for a while because I was doing well on Ibrance. That came to an end in December and I started Piqray at the beginning of January. I got a mild rash and was very fatigued and lost muscle strength. But the worst that happened is my blood sugar went over 400 by the 2nd week! Started me on 500mg of Metformin, then raised it to 1000mg but sugar kept going up. Stopped Piqray till my sugar got down to 150. Restarted Piqray last Friday at 250mg with an increase of Metformin to 1500mg. After 1 dose, sugar doubled to 301. After 2nd dose, sugar at 398. Increased Metformin again to 2000mg and after 3rd dose of Piqray, sugar is at 409. Not sure what to do now! I've read articles about including insulin shots in with the Metformin but also read it made someone's cancer worse. Does anyone have any experience with this?

    (Just got a call from my doctor advising me to go to emergency)

    Janet

  • intothewoods
    intothewoods Member Posts: 179

    Janet, Let us know how you are and if you go to the ER. I had no experience with blood sugar issues until today. I just had a fasting drawn this morning and mine is now 345. Had TM done too so I quess I'll be hearing from Dr soon. And researching All About Metformin.

  • KamAPRN
    KamAPRN Member Posts: 2

    I'll look into this, thanks!!!

  • mediclisa
    mediclisa Member Posts: 100

    Hello NMJanet and into the woods. I also had blood sugar issues. I was told if my bs gets over 500, trip to the ER. I have been close. My internist changed my Metformin to extended release tablet's to 500 mg 2 pills 2x per day and Januvia 1x per day. That has seemed to taken care of the blood sugar issues for now. It's been steadily in the 130's for the past week. See what your MD thinks about the extended release. It really helped me. Lisa

  • intothewoods
    intothewoods Member Posts: 179

    Thank you mediclisa,

    I got a call from my oncologist last night just as I was about to get into bed. He wanted me to go to Urgent Care to get my sugar retested. They closed at nine so off to ER. ER nurse said they would have send me here anyway becasue of my spike sugar spiked to 419and then to 519. They gave me insulin and let me go home when it was back down to the 300's and were sure I wasn't in diabetic keto-acidosis. I'm not diabetic so this is all new to me. I'm waiting to her from my oncologist about next steps and went ahead and tool my dose of Piqray this morning. Do you check your own sugars daily? I really hope I can stay on this treatment becasue my TM have gone down and my liver function tests are much better.

  • ann273
    ann273 Member Posts: 122

    I have been on PIQRAY + Faslodex for just a week now and have not yet faced any physical side effects. I started zyrtec twice a day, probiotics a week before I started PIQRAY. I drink lemon and ginger tea often and have been on a mostly keto diet. (not strictly, I allow myself a some carbs). As my blood sugar went up to 200 I realized sticking to not eating after 7pm considerably lowered it back. My doctore prescribed the metformin, but told me to hold off since the diet seems to control it pretty well.

    Hoping to stay on this treatment but skeptical about it working for long or at all since I have an amplification of FGFR1. Its said to attenuate response but I hope I at least get a few months :( Has anyone else been on PIQRAY and has had atleast a partial response with the FGFR1 mutation?


  • intothewoods
    intothewoods Member Posts: 179

    Ann273 I can't offer any insight about FGFR1 but wish you the best and hopefully you will get some responses that help.

    My PCP prescribed insulin rather than metformin. My sugar went as high as 519 Monday in the ER. Has anyone gone straight to insulin without trying metformn first. I emailed my PCP but probably won't hear back anytime soon. Another story.


  • mediclisa
    mediclisa Member Posts: 100

    into the woods, I do check my blood sugars twice daily. I was also running high blood sugars until my internist put me on the extended release Metformin and Januvia. I am not a diabetic but my son is a type 1. I am surprised that he would put you on insulin so quickly. I would check with your regular MD (I go to a internist) for things related to Diabetes and anything non cancer related. You should see a specialist like you see an oncologist. I just wouldn't trust my oncologist to make those decisions. He also contacts her to make sure they are on the same page. Ann273 - I also don't eat after 7 PM and watch my sugars. The only side effect I got from the Piqray was high blood sugars. I hope you all do well. Unfortunately, I am on cycle 4 and my TM had almost doubled and my scans showed progression, so Piqray is not working for me. Darn it! I may be moving on Havalen. I am also waiting to see if insurance will approve Y90. I hope it does - I am running out of options. Ann273 - sorry I don't know anything about FGFR1 mutation. Cancer sucks! Lisa

  • pajim
    pajim Member Posts: 930

    Hi Ladies! I'm baaack. . . CMF and Doxorubicin have both failed me. In fact I'm sort of in sad shape. I developed lung mets and they're extensive enough to cause shortness of breath if I walk more than about 50 feet. Grrr.

    Anyway, my cancer center now has enough experience with Piqray that they're putting me back on it. Start Zyrtec tomorrow and pull Piqray out of the medicine drawer the day after. I could use a couple more days off but if we don't kill some cancer cells soon I won't be breathing.

    Last time it looked like it might be working. Then the full-bore body rash. So hopefully it will work now. . .

    They also gave me a dexamethasone mouthwash to prevent sores. I feel like I should drink some -- give me a boost, LOL.

    Jobur, congratulations on still being on this drug. I hope the PET scan comes out OK.

  • intothewoods
    intothewoods Member Posts: 179

    Pajim, I'm so sorry to hear of the dicfficulties you are having. Cancer really does suck. Sending best wishes for your 2nd go round on Piqray.

    mediclinsa, it is my internest who is managing the sugar and put me on insulin. She has let my oncologist know. I emailed her about why not metformin but the teaching nurse today said my sugars are too high for metformin (I'm thinking mabybe once we get then under control we can revisit?) At any rate during the teaching session today they were 487. My internest is out today and tomorrow but will be back Friday so hopefully I'll get a more detailed answer.

    Lisa


  • cure-ious
    cure-ious Member Posts: 2,896

    Although I am not on Piqray, I wanted to weigh in with a suggestion for anyone who is having trouble with high blood sugar. Studies have shown that for blood sugar control (as well as hypertension and cholesterol levels), it may be more effective to restrict the time window in which you eat, than restricting your diet per se. This is based on work in mice, which showed that a mice eating a high fat diet remained a normal weight and did not have problems with cholesterol or blood sugar if they were forced to take a periodic fast in order to burn off what they had eaten. By comparison, mice that had access to the high fat chow 24/7 became obese and had all of the expected metabolic problems, even though the number of calories they consumed were identical to those mice that had regular fasting in order to burn it all off. Subsequent studies in heart patients showed that a regular daily fast (ie, a regular period of nighttime fasting) lead to on average a 1.5 point drop in blood sugar A1C levels, without any changes to diet or exercise. What happens in a fast is that your body starts to burn fat instead of sugar after about an hour into the fast, and enables you to burn a lot more calories and lower your blood sugar numbers during the night, and that way you have a buffer to prevent it from going too high when you are eating the next day. Again burning what you eat every day keeps you in a zone where its all controlled, and some people were even able to reduce their bp, metformin and statin meds.

    It has not been tested for people taking Piqray, but its well worth a try and may be easier or even more effective than the keto diet. The point would be to eat what you want during a ten hour period, move dinner to an earlier time, and then do a water-only fast for the rest of the time. At night if you get hungry, the suggestion is drink hot water, fizzy water, regular water, or just go to bed. I tried it for over a year and lost ten pounds that never came back, and that was without any diet. But mostly I think this would make the blood sugar go much lower and also help the metformin drive down blood sugar much more effectively. So, in essence, rather than try to dramatically eliminate all carbs from your diet, you could instead just commit to an evening water fast and see if it works.

    Here are some links that describe the approach:

    https://www.salk.edu/news-release/clinical-study-f...

    https://well.blogs.nytimes.com/2015/01/15/a-12-hou...

    https://www.nytimes.com/2018/07/24/well/when-we-ea...


  • jobur
    jobur Member Posts: 494

    Hello Piqray Friends! First I must apologize for being MIA this past month. As it seems I was one of the first to be on this new drug I feel a responsibility to be present and offer any help (even if just encouragement) I can to others on this tx.

    So many new people here, I hope I don't miss any of you, but welcome to all.

    Janice54- How are you feeling since starting Piqray? As others have said, the 1st cycle or 2 can be a little rough, but if you are able to tolerate and work through any se's, your QOL can be very good. I have been on Piqray since last July and have been able to do all the things I love. Clearly, some have found Piqray to be intolerable, but for the rest of us it has been a (relatively) easy treatment. Hope you do well on it too.

    IntoTheWoods/Lisa- I was SO happy to see you back on the forum! (And by the way, you two totally rock the shades!!) I even checked a few times but saw you had not been seen here for a long time. Sorry to hear about your non-cancer problems, especially the sleep issue as that affects everything. Also very sorry to read you have been on a wild ride with blood sugar. I have not heard of anyone going straight to insulin without trying metformin first. Of course, I am not a doctor, but it doesn't seem right. I'm wondering if your internist knows this is a common side effect of Piqray? Hearing liver function is better and TMs are down is great news, so hoping you can get it under control and continue on Piqray. If not, we know there are still other options. Are you still working? Very best wishes, it's wonderful to "see" you!

    KamAPRN and NMJanet- Welcome to the Piqray group. Sorry to hear your blood sugars have gone crazy on this drug, it does seem to be one of the most common se's. I have not had this issue so don't have any good suggestions for you, but seeing Ann273's post about following a keto diet reminded me that this also helped one of the women who was in the clinical trial (I think it was SusaninSF) so it may be worth looking into.

    Hi Pots! Good to see you are still doing pretty well on this drug, though those damn horsemen continue to visit. Have you had a scan recently? Had to back a couple of pages, but see your TMs have been going in the right direction, so fingers crossed. Congratulations on getting moved into your new home! I love to garden and spend quality time outside too. Guessing spring comes earlier there than it does here, but it gives us both something to look forward to.

    MedicLisa- Oh crap Lisa, I am SO sorry to hear Piqray seems to have failed you. Tx change is always difficult, but must be so much more so when you feel you are running out of options. If I remember right you are quite young (40s?) and I have wondered if those 2 little goomers in your screen pic are your children. In any case, your progression totally sucks and must be so very discouraging. I'm a heathen (joke, but not-a-Christian) so can only say I will be holding you close in my thoughts and hoping your next tx will be the one to turn things around. Meeting someone on this forum from my neck of the woods has been priceless and I hope we can still meet this summer, but in the meantime please let's stay in touch. Feel free to pm me any time and know that I will be "stalking" you (in a good way) around the forum. Sending hope and hugs to you.

    Pajim! Speaking of stalking, I have not been on the forum much lately and lost track of what is going on with you. I am so sorry to hear CMF and Doxorubicin have failed you. Damn and double damn. I am so, so sorry to hear you have lung mets now too and describe yourself as being in sad shape, because I know what a tough cookie you are. I remember Piqray sort of seemed like it was working last time you tried it, so hanging on to the hope it will be the drug to kick those mutant cells back to the curb. Sending a big hug.

    Time for my own update. Since beginning cycle 8, my stomach has been hurting and I experienced something that felt like dry heaves, only without nausea or vomiting. Unpleasant, but I thought maybe I had developed an ulcer or something, so I didn't think it was significant enough to call my doctors. Midway through cycle 8 I woke up on Feb 16th with big D. It continued for a few days and then I started vomiting too. Both of these are unheard of for me, I have been so very lucky as to have never been sick in all of my 6 years living with MBC. 4 days in I was throwing everything up anyway, so I stopped taking ALL meds and supplements, including Piqray. Alerted my mo to what was going on on Friday and went for my regular 4 week appointment the following Thursday. By then my potassium level was dangerously low, so I was given an infusion of saline and potassium, with an rx for more potassium. Vomiting stopped, but big D continued. I started trying to add more foods which it turns out was exactly the wrong thing to do. My mo called yesterday afternoon to tell me I have pancreatitis. Tx is complete rest for the GI system, no food or only clear broth, clear juice, and jello. More blood work to be done next week and CT next Friday. Still off Piqray, although I did still get Fas shots Tuesday.

    So, this new wrinkle has given me some new advice to pass on. Your mo should monitor your lipase for at least the 1st month of Piqray, AND if you have any unusual (for you, we're all very different) stomach issues. My pcp checked mine on Feb 13 and it was fine at 49U/L. By Feb 25 it had risen to 356U/L, so be aware this can happen very quickly.

    Best wishes to all and happy Leap Day!

    Jo

    Edited to add: The more I learn and think about this, the more I wonder if I did not simply have a gallbladder attack and pass a stone, and this whole sicky episode has nothing at all to do with Piqray. My gallbladder theory makes a lot of sense, weeks of "stomach" pain and discomfort, followed by D and then vomiting. And gallbladder attacks are the #1 reason people get pancreatitis. I will update the thread when/if I know for sure. (Of note, no previous issues with gallbladder.) Does anyone here have any experience with gallbladder attacks to know if my symptoms match?

    And not having this be Piqray related would be great! I would love to continue being the old timer on this thread for many more months.

  • pajim
    pajim Member Posts: 930

    Oh, jobur, I'm so sorry. It sounds like you've been through the ringer. Stomach/GI problems are really annoying.

    I truly hope you feel better soon. Sounds like you at least managed to stay out of the hospital, which is a good thing.

  • intothewoods
    intothewoods Member Posts: 179

    Oh Jobur, You have been through the ringer! Thank you for sharing and for the tips. And yes, pajim is right staying out of the hospital is always good news.

    I also want to thank you for remembering me and for such a warm welcome back. It meant a lot.

    I spoke to the oncology pharmacist becasue he knew I had this question about why we were starting with insulin and not metformin He works with my MO who told him it was because of my liver function. My internist is following the sugar thing but they all work together. I have Kaiser and they are really good in that way. In many ways really. I've been very happy with my team. I see the internist next week so maybe I'll have additional info.

    Thinking of you all

    Lisa

  • ann273
    ann273 Member Posts: 122

    Cure-ious, you are absolutely right. I adjusted my diet to mostly keto. I do eat more carbs than a regular keto diet. I stop eating after 6-7pm.I am mostly on a water diet until 10am the next day. When. I check my sugar levels then the numbers even go down below 100 and I have a buffer for the rest of the day. But my maintaining a low sugar/carb diet I am able to keep my blood shugar down without metformin. I'm on day 10 and my doctor and nurse are really pleased. My sugars did spike on day 5 and I was concerned, but once I adjusted my diet, I havent had to take any metformin.I feel great on the drug otherwise. I take zyrtec twice a day and a dailuy probiotic which I really believe controls the mouth sores. It was what kept me mouth sore free on Afinitor for 3 years.

  • Brenniejoyce
    Brenniejoyce Member Posts: 13

    Just an update on what’s going on wit me. I’ve got the results from my pet scan and they were not good. I now have bone Mets in my lower back and my right hip. So the cancer has spread. The good news is that I started the Piqray on February 26 along with my butt shots of Faslodex. So far I’ve had five days of Piqray with only slight nausea and an almost complete loss of appetite. Which is perfectly fine with me! I was on Prednisone since January because of the pneumonitis I got from taking Ibrance. While I was on prednisone I gained a lot of weight because I was hungry all the time. So I could stand some weight loss. Thanks for the good diet tips if I get nausea. I’ve been trying to be prepared for any of the side effects, and your tips really help ease the anxiety whileI’m waiting to see if I get any of them. It helps to be prepared.

  • jobur
    jobur Member Posts: 494

    Pajim, Thank you for your kind words, they really do mean a lot. I'm guessing most of the people on this forum have been through much worse (you included), but this has definitely overturned my canoe on everyone's favorite river. You are so right about not being in the hospital. My mo is a sweetie and I don't think she was exactly threatening me, but she did mention while telling me to only eat clear broth that this is usually treated in the hospital. Needless to say I am being a very good girl regarding food intake.

    IntoTheWoods, Thanks for your sympathy as well. It's not been fun, but could sure be a lot worse. Great to hear you are in such good hands, with a true team of pharmacist, internist, and mo (who actually talk to each!) working together on your behalf. I think it was well worth questioning them going straight to insulin, but seems like a very good answer.

    Cure-ious, Thank you for your thoughtful and interesting post. I hope this will help those who are struggling with blood sugar rises. I find this interesting too, because without knowing there was such a thing, this describes my eating habits most days. (Not the keto part, just the fasting.)

    an273, Dang, I knew I was going to miss someone! Belated welcome to the Piqray thread. If you get through this first cycle or two without major se's, I think you will find this drug a relatively easy tx. Is this your 1st time on Fas? Hope Piqray will be both easy & effective for you!

    Brenniejoyce, A big welcome to you too! I'm sorry that Ibrance failed you and left you with pneumonitis besides. What did you take with it? Hoping Piqray will treat you better! Sounds like this is your first time on Faslodex, so do be aware it can have it's own se's even without Piqray. But it has been a wonderful drug for so many of us.

    baywitch(Kathy), njgirl13, Bebecita Are you lurking? Still on Piqray? Hope you are doing well.

  • Janice54
    Janice54 Member Posts: 23

    I have been on piqray now for ten days and I am doing great.....knock on wood. I watch my sugar intake.....basically none. So it has been testing 76. My fingers and toes are crossed hoping this continues. No....it WILL continue!

  • jobur
    jobur Member Posts: 494

    Janice54- Nice to hear from you! So glad your glucose is staying low and you are not experiencing any bad se's. Love your determined attitude!

    Pajim- How are you feeling? Is SOB the biggest irritation for you right now? Hope you are able to keep pain in check. Always rooting for you!

  • Pots
    Pots Member Posts: 189

    Hi ladies,

    I've been lurking but not posting much. I had a CT scan Feb 20 and bloodwork February 27. My CA15-3 continues to go down, at 92 now from 110 a month ago. I don't have the CT scan report yet but the MO looked at the images and thought there wasn't much change. This past month I had less nausea and diarrhea but more short episodes of a sore GI tract......feels like I swallowed razor blades and then it lifts. All manageable but odd. Faslodex SE for me are sharp muscle cramps in my legs.

    One interesting question that the MO asked was about my emotions and moods...did I notice I was more depressed, irritable, less executive function, memory decline? For me the answer is yes....I figure the drug is affecting my brain based on what I've experienced. So she's looking into a dosage reduction. Any one else notice this? for me it got worse in cycle 5-6 on.

    Jobur, goodness you are having a whole bouquet of ugliness going on. I had pancreatitis when I was on Ibrance and thought I was having a heart attack, sweats, nausea, unbelievable pain. I ended up having gallbladder removed. Please keep us posted.

    Welcome newbies, this drug is doable once you get past the first 2 months so be patient. I was ready to quit once I got the rash and had terrible GI side effects....turns out those were all manageable after I took a quick break to let my system reset.

    I have not had any blood sugar issues so far but I also watch what I eat, quantity and when I eat it. If I'm going to have high carbs like a cinnamon bun then I try to eat it earlier in the day, usually only get through half and make sure I get some walking done before/after. I don't do this very often. If I'm craving a treat then I look for no sugar options....Peaks Freans no sugar cookies, Russell Stover no sugar chocolates and I love Smart Sweets. Again, not a lot and never after 8 pm. And I drink a lot of plain water and carbonated water but nothing with sugar. I like good food and wine so it's about finding a balance.

    Spring is slow to arrive here...the cherry blossoms might open if we get some sun this weekend!

    Be wel

  • ann273
    ann273 Member Posts: 122

    Thanks for the encouragement jobur! PIQRAY has been very easy on me and yes, this is the first time I'm on FASLODEX. I hope this keeps me stable for a few months atleast (since I have that stubborn FGFR1 mutation) because its just been so easy ( I hope it stays that way, Im cautiously optimistic ). Hopefully the Faslodex also has some effect, because I just developed the ESR1 mutation and Faslodex may just work at least for a bit.

  • jben
    jben Member Posts: 2

    Hello, my daughter is on Piqray and Faslopdex since November, had high sugar levels so is on Metformin too. She is still dealing with terrible side effects; Extreme Fatigue, leg pains, back pain (mostly from bone mets) stomach pain, no appetite, diarrhea, vomitting. She is only 29 and was very active but now doesn't have energy to even go for a walk. The only reason she doesn't want to stop, is her tumor markers have gone way down, she will have a PET scan in April.

    Do any of you have any suggestions to help with any of these side effects, maybe some supplements? She takes a Claritin everyday to help with leg pain, per doctor, seemed to help some but not much. Not sure which meds are causing some of these symptoms.

    This is breaking my heart.

    Thanks.


  • pajim
    pajim Member Posts: 930

    Hi Jben, The best thing to help with all the SEs would be to go for a dose reduction. As it sounds like the med is working, a little less of it should still work. It can be [psychologically] hard to take less, but truth be told the doses of cancer meds are always the "highest dose tolerated" not the "minimally effective dose". I've taken 75% of the dose of a lot of meds in my time. Makes life better and so far as I know still works fine.

    Has she discussed all this with her docs? She needs to emphasize that this is ruining her quality of life. They should work with her to find a way to take the drug.

    In the meantime she could try Zyrtec rather than Claritin, and take pain meds. Keep on top of the pain. Have the docs provided Zofran for the nausea/vomiting?

    One other idea is to ask for steroids. Dexamethasone. Low dose might boost her a little.

  • wmukluk
    wmukluk Member Posts: 11

    I was on Faslodex with good results (no progression) for almost 5 years. It stopped working in 2016 and I have been on all kinds of treatments since then, including 5 or 6 different chemos (I am running out of options). After genomic sequencing on my bloodwork and a PET scan which revealed some progression (fluid in my pleura), my onco wants me to go back on Faslodex with Piqray. Has anyone been in this situation, where they have gone back to Faslodex? I had few side effects (aside from hot flashes) but I am so much thinner now that I know those shots are not going to be fun. If they work, however, I will grin and bear it. Thanks in advance for info and suppport

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