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Piqray users, what is your experience?

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Comments

  • pajim
    pajim Member Posts: 930

    I've had pneumonitis. Symptoms were shortness of breath on exertion and weird fevers. It took me a week to figure out I had a problem. But a CXT will tell the tale.

    Treatment for it is pretty easy -- steroids.

  • mediclisa
    mediclisa Member Posts: 100

    booboo1, How did your chest X-ray go today? I am hoping nothing serious. Lisa

  • pajim
    pajim Member Posts: 930

    All, I want to second Jobur's suggestion to take antihistamines prophylactically against the rash. My cancer center, which doesn't have much experience with this drug, assigned mouthwash as prophylaxis against mouth sores, but nothing for the rash.

    And lo, yesterday rash appeared. Spread to basically every part of my body except face and below the shins. Part of it is itchy Oh my! The solution was to stop Piqray and take benadryl for the itchiness. Plus steroid cream. The cream is doing some good. The benadryl does it's usual thing. But because it's now been 36 hours since I had a dose, things are looking a little better. I'm guessing that by tomorrow I'll feel better but last night I almost melted down.

    As I recall some of you had this and once it went away it didn't come back? I'm probably going to have to provide the guidance because, well, not a lot of experience. The NP says that most women have had a lot of trouble with this drug. Guess there have been a lot of dose reductions. We'll see what happens to my TMs (they usually take a dive with a new treatment that's working).

  • njgirl13
    njgirl13 Member Posts: 13

    Hi All,

    So I officially started my medicine today! Sorry that I've been away for a bit. I had to wait to start because I was having severe nausea from radiation and didn't want to add fuel to the fire. I had my MO's blessing to wait.

    Jobur - Thank you for the tips on the shots. I appreciate you thinking of me :) How are you doing?

    Mediclisa - I believe you're a week or so ahead of me and we're buddies on this ride now :) I plan on posting updates as to what I experience, side effects, etc. If for nothing else, the women on so many threads have helped me so much, I want to do the same if the opportunity exists.

    Pajim - I hope you're feeling better and thank you for the information regarding the rash. This is good information to know.

    Hoping that everyone is doing well and will get these side effects under control.

  • Pots
    Pots Member Posts: 189

    Pajim, I had to stop taking piqray for 2 weeks during cycle 1 to let the rash clear...also used a steroid cream, took Claritin. I started again at 300 mg and had Only one episode of a slight rash trying to reappear. It disappeared quickly. I’m taking Claritin daily now, just finishing cycle 4. I haven’t had a rash since.

    All newbies, don’t be too too afraid of SE. This drug seems to be the hardest in the first and second mo th month and then eases up. I still have days where I get what I call the “3 horsemen”....Headache, diarrhea/nausea and fatigue usually around the 3rd week of each cycle but it is manageable. So if you have hard to handle SE then ask your MO for a plan on how to manage them better.

    Be wel

  • pajim
    pajim Member Posts: 930

    Pots, it's interesting what you say. I must have used 60mg of steroid cream in three days. Plus Claritin and Benadryl at night. The rash extended from neck to knee, covering my entire body (plus arms) but has cleared up.

    My MO, usually a thoughtful guy, freaked out. So I am to put the rest of the Piqray I have in a bathroom drawer for a later date. I start CMF on Monday. And to be honest I'm not unhappy about this. Five days after stopping this med I could walk again without a walker. It was really doing a number on my muscular strength. And I've got mets everywhere. I'm happy to start something that is proven. An oldie but goodie. We need to kill some cancer cells or I'm going to get even shorter than I am already.

    We'll re-try at a later date. Once his friends convince him that the rash isn't an end-all. LOL. I hope this drug treats all of you better than I. I'll be back in a year or two.

  • mediclisa
    mediclisa Member Posts: 100

    How is everybody doing? For some reason, since starting over 3 weeks ago, I haven't had any side effects. This makes me nervous. I hope this medication is working. I have notice my hair is getting very thin and am losing it. Pajim, I take Claritin daily, so I haven't had the itching or rash. Njgirl13 what is your experience so far? How is it going Baywitch? Pots glad to hear everything settles down. Jobur how are you doing? I think you are the longest one on this medication. BevJen are you on this drug? I will have my labs drawn next Friday for the tumor markers and see what they say. Two weeks ago, they rose again. At least they haven’t doubled which has been happening. I hope everybody had a Merry Christmas and let's hope for a great New Year! Lisa

  • BevJen
    BevJen Member Posts: 2,341

    Lisa,

    I saw my name in your post. No, I'm not on Piqray yet, although it's likely in the future. I'm still doing the Ibrance dance. Had an MRI with my interventional radiologist on Dec. 12th to check my liver spots, and all is either stable or slightly better, and tumor markers are going down. I return to my MO this coming week for my monthly bloodwork and my faslodex shot, so we'll see what she has to say.

    You sound like you are doing well on this drug, which is great. Happy New Year to all.

  • baywitch
    baywitch Member Posts: 63

    Hi mediclisa … I am halfway thru my 2nd cycle and, like you, did not experience any SE's at all. I was worried too that it was not working, but my tumor markers after the first month were cut in half (they dropped from 1300+ to 600+)! I was off all drugs for a 4-week period due to other medical issues. Also, my bloodwork was the best it's been in months. I am anxious to see what happens at my next blood draw. So keep the faith. Hopefully it will work well for you. Unfortunately I am now dealing with horrible mouth sores, the first time in 2+ years. So keep rinsing with baking soda and/or magic mouthwash as a preventative. Ask your doc for a prescription if you don't have it. Believe me you don't want these sores.

    Hope you get really good news at your next checkup. Keep us posted.

    Kathy

  • jobur
    jobur Member Posts: 494

    Lisa and Kathy, I'm so happy to hear you two haven't had any bad se's! I did have a few bad days right around the end of the first cycle (Baywitch, I had bad mouth sores at that time, none since), but since then the only thing I notice is fatigue and headache from time to time. So I'm glad to hear you two are doing well on this drug. I too wondered if it was working when I had none of the classic se's.

    Potts, Great to hear you are still hanging in too! I agree that the first couple cycles are the toughest and se's improve after that. Hope those 3 horsemen ride off into the sunset never to return!

    Pajim, thanks for explaining the sudden change from Piqray. Hope CMF kicks those cancer cell's a$es. And yea for sending the walker back to the corner to collect some dust.

    I hope everyone is finding something to give them comfort and joy this holiday season. And wishing us all well in 2020.

    Jo

  • baywitch
    baywitch Member Posts: 63

    jobur … how did you get rid of the sores and how long did it take?? Dr. ordered me lidocaine yesterday and it helps with the pain for a short amount of time, but eating is almost impossible. It's been at least a week now.

    Katht

  • Bebecita
    Bebecita Member Posts: 6

    Hello ladies,

    It seems that I will be joining you for the Piqray ride. I am waiting for the insurance to approve the medicine, I hope we can start next week at the latest. I come from 3 months of weekly taxol which did not control the cancer.

    I wanted to ask about the “hair loss” side effect. I did the cold cap and did not lose all my hair but it is very, very thin. I wonder if Piqray will make me lose what is left. I also lost half of my eyelashes and eyebrows. I started Latisse for the eyelashes.

    What is everybody experiencing regarding hair loss to include eyelashes and eyebrows?

    BTW, thanks for the suggestions on staying ahead of the game with the creams and mouthwashes. I will mention it to my new oncologist before we start treatment.

  • jobur
    jobur Member Posts: 494

    Kathy, My mouth sores lasted about a week. I'm sorry yours seem to be a little more persistent, but hope they go away very soon. I just waited them out, but my mo has suggested a warm salt water swish for mouth sores. Do you have magic mouth wash?

    Welcome Bebecita! I'm happy to say I haven't noticed any hair loss with this drug. I take biotin, but don't really know if it helps or not. I would suggest you take some kind of antihistamine (Zyrtec or Claritin) before starting Piqray and continue taking it for the first few months. It seems to help prevent rash. Also be sure to have something on hand for D as this is a common se. Wishing you good luck and good results as you start Piqray.

    Best to all~

    Jo

  • baywitch
    baywitch Member Posts: 63

    Jobur … I knew my pain was more than just mouth sores. Saw the NP yesterday. It seems I have thrush as well as sores. So that explains the swelling and other symptoms. So now I do baking soda rinses, magic mouthwash and lidocaine rinses, along with the new prescription for thrust. Hopefully this will do the trick, because eating is just impossible.

    Stopping the Piquay until I see the doctor on Thursday. She may decide to lower the dose, Always something.

    Hope you all are well.

    Kathy

  • mediclisa
    mediclisa Member Posts: 100

    Hi BevJen, I'm glad that Ibrance is still working for you. Great that everything is stable or better. Can't go wrong there!

    Kathy - Congratulations that your markers went down and blood work is looking great. I am hoping for the same results! Interesting that you had thrush. 3 weeks ago, I had to go as my mouth hurt so bad, also had a sore throat. I was diagnosed with thrush. I have never had thrush before - they gave me a script that I took for 14 days including the magic mouthwash. Very painfuI. I wonder if it is a unknown side effect of the Piqray? It took a while for relief, hopefully you will get some relief soon. I no longer have the mouth sores so that is a plus.

    Welcome Bebecita. I have lost almost all my hair, not my eyelashes. I haven't seen my eyebrows since 2007! I wear ball caps to work and don't fuss with the wigs. To much work for me! I have lost my hair in 2007, came back curly and then lost it 4 more times during the last 5 years. If you go back a few pages, you can see my post about what the pharmacist told me to do with regards to helpful drugs.

    Pajim - I am hoping CMF works for you, I took it for 3 months. The side effects were very mild.

    Pots - so nice to hear that your side effects are getting better. I am three cycles behind you. Good to know when the 3 horsemen may visit, hopefully they stay out to pasture.

    Njgirl13 - how are you doing? Started cycle 2 today. Friday is my appointment so my tumor markers will be pulled and then the 3 day wait. Hopefully, the side effects are treating you well.

    Hi Jobur, you must be on cycle 8 and still doing well? I am so happy that this drug is working for you. How are your tumor markers - going down or staying steady? It is so weird that I don't have any side effects. Again, I shouldn't associate side effects to the drug working but after all the drugs I have been on, it is hard not to. I am really tired a couple days here and there and wonder if my blood sugar is high. My son is a diabetic and when his sugar is high, he is very sleepy. How much snow did you get? We got about a foot. I remember going through your area and getting a speeding ticket in Hallie. Uugh.

    Take care everybody and to a gentle, non-progressive Happy New Year! Lisa

  • Pots
    Pots Member Posts: 189

    Hi ladies,

    I started cycle 5 yesterday. My CA 15-3 is still dropping (now at 150, down from 200 in September). I'm not seeing the huge drops that some of you get but I can report that generally I mostly feel better/ more energy. At Christmas, I found out that I had a UTI....it seems like whenever I get run down then...boom. And today, the 3 horsemen show up.....nausea, diarrhea and fatigue. My hair started to thin in cycle 3 and I keep it short so that the thinner spots aren’t so noticeable.

    Wishing you all the best for the New Year, I feel very grateful to be a Piqray pioneer.

    Be well,

  • pajim
    pajim Member Posts: 930

    Everyone, I discovered at my visit to my cancer center yesterday that my TMs had dropped 20% in 2 weeks on Piqray. So. . .stay the course if you can.

    We will come back to this treatment, loading up on antihistamines next time. . .

    Meantime I was six hours in the cancer center getting CMF, but it's once every three weeks! Yay! So far so good. They loaded me up with steroids. I'd guess I'll feel crappy for a couple of days then have 2+ weeks to feel normal. Good for my rehab. And my ability to go to work.

    Pots, I hope you feel better soon.

    And for all of us I hope that 2020 is better than 2019.

  • Kimchee
    Kimchee Member Posts: 94

    So my name is Kim , I have been on piqray for 7 months . I was doing really well and now my tumor markers are going up {very slowly} I'm losing my mind thought this was the miracle drug . Where to go from here?

  • mediclisa
    mediclisa Member Posts: 100

    Hi Kim, I started my 2nd cycle and had my markers drawn on Friday. I started to have a pain in my right lower ribs so unknown if Piqray is working for me. My last scans showed an additional 10-12 new bone mets in addition to my liver mets. My MD said if my numbers go up next week, he was going to add IV chemo to Piqray. He also said it would take 3-4 months to work. Hopefully, someone can pipe in here knowingsome have moved on. Good luck. Lisa

  • Kimchee
    Kimchee Member Posts: 94

    Thank you for the reply to my question. When I first read it was like a punch to the gut ,I don't want to go back to chemo ! But with much thought I would if I have to . With that being said I wish you Positive results and Healing prayers .We must keep pushing forward till the next break though and there WILL be one ! Blessings Kim

  • mediclisa
    mediclisa Member Posts: 100

    Thank you Kim. Just to let you know, my MD did say if Piqray didn't work, there were still plenty of options. So know that, as I was worried when I ended up with the mutation. I mean really, look at all the medications I have been on. Good grief! My mom died in 1974 living only 1.5 years in the 70's with breast cancer and I was 14. Look at us, going on almost 14 years, as it looks like you were diagnosed around the same time I was. In 2017, I had over 60 mets in my bones, liver and lungs. I had Taxol for the 2nd time and at that time, Taxol killed them all. Unfortunately, cancer is sneaky. At this time, I feel there is hope. We just need to keep getting to the future, if that makes sense. Prayers and a big hug to you! Hopefully, you get a good plan in place 💕 Lisa

  • Bebecita
    Bebecita Member Posts: 6

    hello ladies,

    I started Piqray on 1/4/2020. The abdominal pain, nausea and lack of appetite have been brutal. I have been having blurred vision and extreme fatigue so I checked my fasting blood sugar last Saturday and it was 336.

    I contacted my doctor's office yesterday and they told me to stop the Piqray and get in touch with my PCP as she will be the one managing my blood sugar should we resume the Piqray. Today my blood sugar was 205.


    The instructions for Piqray say you are supposed to monitor your blood sugar at least twice a week during the first two weeks of treatment but I was not told to do it when I started the pill.

    Has anyone had this problem, and if so what was done about it? Btw, I am not a diabetic.


    Thanks a lot.

  • jobur
    jobur Member Posts: 494

    Hi Piqray Pals! This thread has been quiet lately, so I hope it means everyone is doing well.

    Kathy, How is your poor mouth? Thrush really sucks, and I am so sorry you suffered from it. Did you restart Piqray at a lower dose, or did you and your mo decide to try something else?

    Hi Kim, Glad to hear from another person with 7 months of Piqray experience. Sorry those tumor markers are on the rise, but even if this drug fails you. You are so right about hanging in there until the next breakthrough drug comes along. Do you have a scan coming up?

    Pots, How are you? Are those damn 3 horsemen leaving you alone? You sure did not need a UTI on top of the rest. Hope you are feeling better!

    Lisa, From your posts, I can tell you are quite a gal! Maybe we could meet up somewhere, sometime. I had to chuckle about your getting ticketed in Hallie. We call those cops Hallie 5 O, ha ha! (You may be too young to remember the TV show, Hawaii 5 O) How is your rib pain? Hopefully it was a strain and not a met. Do you and your mo make tx changes on tumor markers alone, or do you scan before making a change? My CA15.3 has always been in the normal range except for a small jump when Ibrance/Fas failed and I got my first liver mets, so I only change tx when scans show progression. Even though it was many years ago, my heart hurt for you losing your mom when you were only 14. That must have been such a difficult time. You are so right about cancer being sneaky, as well as there being a lot of hope for us in the future. Piqray is the 2nd drug I have been on that got FDA approval just when I needed a new tx. Hoping that keeps happening for more and more of us.

    I am just finishing my 7th cycle of Piqray and have a PET scan next week. Really hoping I can stay on this drug for a while longer. I'm still feeling pretty good, but awfully lazy. I'm attributing that to January blahs as much as to Piqray.

    Wishing everyone the best in tx AND QOL!

  • nkb
    nkb Member Posts: 1,561

    I saw an ad for piqray on TV the other day. That seemed quick.

    Hoping for good scans for everyone. ( I’m not on this drug yet- but, my MO once said to me”you will be cycling through them all eventually “ ) so reading this thread and hoping to see good experiences.

  • baywitch
    baywitch Member Posts: 63

    Hi Jobur … My mouth sores and thrush have finally cleared up after being off Piqray fpr 3 weeks and religiously using the medication and rinses. Wouldn't wish that pain on my worst enemy! Anyhow, have been dealing with more pressing problems, in particular, breathing and fluid around the right lung. It seems a portion of the bottom lobe of my right lung is trapped and will not reinflate after removing fluid. Doctor appointment next week to talk about restarting Piqray at a lower dose. My tumor markers in 3 months dropped from 1600 to 200, so it was working for me, but the SE's sent me to the hospital multiple times. Feeling better now - just need to pack on some pounds. I lost 40 lbs. since September, so if anyone has any secrets to weight gain, I would love to know what they are.

    Hope everyone is doing well.

    Kathy

  • jobur
    jobur Member Posts: 494

    Hi Kathy, Great to hear from you! So glad the thrush and mouth sores have finally(!) resolved. Real sorry to hear you are having breathing problems due to that partially collapsed lung. Do you have lung mets? That is an amazing drop in tumor markers! I hope Piqray will be tolerable for you at a lower dose. Wow, that's a lot of weight loss since September! I don't know if you can tolerate gluten or dairy, but it you can I have lots of ideas for putting on weight. Ice cream, pizza, cream soup with some good bread and lots of butter, loaded baked potato, pudding, mac and cheese, cake, oh my, you can tell I love food! I know, none of these things are what you would call healthy eating, but maybe okay for a while to help you put some pounds back on. Does your clinic have a nutritionist? They might have better ideas than my last of fat foods. Happy eating!

    I got results from my PET scan yesterday. MO called it a good scan. She is always a glass half full person. My 2 small liver mets have disappeared. Still lots of activity in pelvic bones (SUV 8), but basically unchanged since last June. Spot in right lung that is so far considered to be inflammation and small bit of activity at site of original tumor on left breast. I was hoping for a better scan, but I got spoiled by my excellent scans during my Ibrance/Fas days, so can't complain. I'm super happy to stay of Piqray for now. Cycle 8 is on the way!

  • Pots
    Pots Member Posts: 189

    Hi ladies,

    I started cycle 6, TM dropped from 160 to 110 in a month so I guess drug is doing an effective job. I seem to be more prone to UTIs and some sort of infection...I suspect my immune system is having a harder time though my blood counts are normal. My blood sugars continue to be very normal for which I am grateful.

    I still alternate between days with constipation or diarrhea. I lose more weight on the diarrhea days which come with more fatigue and nausea....my “3 horsemen”. On my good days I feel great and I even have some energy. I managed a move to a new house this past month...with a lot of help. I would like to spend this part of my life in the garden, hence we bought a house with a yard big enough for me to putter and be outside.

    Piqray is not an easy drug with all the SE. I take a 300 mg dose. So for the newbies, don't scare yourself too much. Just get through the first few months and have a plan for dealing with stuff as it comes up. Not all of us get the same SE so don't feel you have to get a whole kit together for every SE or make decisions based on fear. Eg. I haven't had mouth sores but I know that this site has good information on how to deal with them. I haven't needed to use the Imodium or Gravol but I have them here.

    Jobur, wow cycle 8 means you’re one of the earliest users of this drug. Congrats!

    Kathy, I echo Jobur’s food suggestions. I went through a time where everything had to be soft, over cooked. I call it my “slip and go down” diet....mainly soups, yogurt, ice cream, popsicles, stews or chilli but nothing too chunky.

    Be well,

    Ann

  • Brenniejoyce
    Brenniejoyce Member Posts: 13

    Hello everyone, it looks like I’ll be joining your group. I was diagnosed with MBC in Dec 2019 with bone Mets and my oncologist put me immediately on Ibrance and faslodex. I got through 2-1/2 cycles when I came down with pneumonitis. My oncologist took me off Ibrance and sent my original tumor tissue in to see if I had the PIC3CA mutation. I’ve been waiting for weeks to see if I can take Piqray, and I finally found out on Wednesday that I can! I’ve read all your posts, bc of course I want to know everything I can about this drug. I’ve been on prednisone since Christmas to clear up the pneumonitis and I just have to have a clear lung CT scan before I can start the Piqray. I’m a little nervous about the sound of the SE’s, but I’m hopeful I’ll be lucky like some of you ladies in here and be able to tough through the first couple of cycles. Thanks for all the great advice in here, and I will stay in touch

  • mediclisa
    mediclisa Member Posts: 100

    Welcome Brenniejoyce. I'm sorry you had to show up here. But there is a lot of good advice. Jobur is on Cycle 8. Yay! I have started Cycle 3. The side effects everybody is reporting can be daunting. The only side effect I have gotten is the Hyperglycemia. I now have to check my blood sugar twice per day, started Metformin and my Piqray is cut in half. I went to do my PET scan and my blood sugar was 263. So dealing with Metformin side effects. My two large liver mets have shrunk but the 4 little ones are growing, so not understanding that. My tumor markers have gone up again, but CT show nonew bone mets. So will stay the course as for me drugs usually take 3-4 months to work. It feels like Piqray is kicking in. Jobur - yes I remember Hawaii 5 0. This summer we should meet up, that would be fun. Great job on your scans. My PET are now set for Friday - hopefully, my sugars will be low. Good luck everybody and hang in there! Lisa

  • Janice54
    Janice54 Member Posts: 23

    I just started piqray today. Reading these post have me concerned with quality of life on this drug. What is it like for you? Will I be up to playing with my children, cooking, cleaning or just going out to dinner with my husband?

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