Piqray users, what is your experience?
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Thanks for the good wishes.
BevJen - Yes, my wife is also seeing an endocrinologist. Many Piqray patients see an increase in blood sugar. It is a common SE, and Metforim is typically prescribed to help control the blood sugar. Her MO is focused exclusively on the cancer so she needed someone to help her with the blood sugar. That's what the endocrinologist is doing.
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Well, looks like my wife and I will be leaving you lovely Piqray women. After 5 months on Piqray, her lung tumors continue to grow and it's spread to her liver. Really devastating news. She meets with her MO tomorrow to see where we go from here. Thanks for all your support, all the questions you answered, and welcoming me into your little group here. This website has really been essential as we move through this terrible process.
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BLMike, I am so sorry to hear your wife has had progression on Piqray. I hope her next tx will treat her better, both in terms of fewer se's and better results. Don't lose hope, there are still many more options for treatment.
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BLMike,
I am so sorry about your wife's news.
Since this is a change, perhaps she could get a new biopsy of either the lungs (if accessible) or the liver lesions along with genomic testing. I am starting to really believe in additional testing, based not only on what I read but also on my own situation. I had Foundation One tissue testing on my liver tumors in May 2019. Recently I had an F1 blood biopsy (not that enlightening) as well as a CTC test as part of a study at my cancer meter. The CTC test was interesting, in that it showed the level of aggressiveness of my cancer at the present time, and also showed up some interesting cellular stuff. I have had a new liver lesion show up on my most recent MRI, and I am having that microwave ablated on Oct. 19, and hopefully they will be able to get a new biopsy. My MO intends to send that one to Tempus, one of the other companies doing genomic testing, to get a different perspective. After that (so mid October) we will consider all of my options for treatment, including clinical trials that might fit (which I am researching myself.)
If I can provide you with any info about any of these things, please feel free to PM me (not that I'm an expert by any means, but perhaps I can provide some additional info if needed.)
Hang in there.
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jobur and BevJen -- Thanks. Yesterday was tough, and frankly, neither of us were really prepared because we really felt like Piqray was going to work. I might just take you up on your offer BevJen because my wife is also going through some additional testing also. Thanks again.
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BLMke, so sorry to read about your wife's progression. I hope her next treatment is tolerable and works well in keeping this cancer under control.
My 3-month CT scan is tomorrow. I am going to get microwave ablation on 19th Oct on one of the liver lesions if it shows to be getting bigger. Will find out tomorrow. Scans make us all so anxious and with good reason!
All the best to your wife in her next journey. You are a wonderful supportive husband.
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Thank you guys for posting all these details about the genetic tests. For sure, they are the only rational way to pick subsequent treatments, and hopefully catch a "lucky break", but are evolving so quickly that its hard to sort out the different kinds. Knowledge is power.
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SK35 -- No way about the microwave ablation of your liver lesion on the 19th -- that's when I have mine scheduled for! Hope we both do well.
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Blmike
My thoughts go out to you and your wife. I am so sorry. I wish you good luck with the next treatment option.
I have a pet scan on the 22. I am a little nervous as my tumor markers are creeping up and I have more pain. Especially right shoulder blade.
Peace to all
Mary
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Thanks for the kind wishes ladies. Thanks for all the help. Polly and I are heading over to the Xeloda thread. Her MO thinks she has hormone resistant MBC and hopes that the Xeloda will do the trick. There are several positive results over there so we're cautiously optimistic.
Just a passing aside: Polly took her final Piqray on Tuesday evening and her final Metforim on Wednesday morning. Her fasting blood sugar on Wednesday morning was 161. We took her fasting blood sugar this morning just for fun: 98. WOW!
S3K5 and 3-16-2011 -- Good luck on your scans! I know how stressful they are.
Bye bye and thanks again!
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BLMike, you two will be swapping places with me on the Xeloda thread. Sorry to find Piqray didn't work for Polly, but hoping Xeloda will be the one for her. Lots of good info there, and yes, many success stories, unfortunately, I was not one. I will start Piqray+Faslodex next week, so I'm hoping this combo will work as well as my MO expects. Been following and reading lots here the last couple weeks. Not looking forward to my blood sugars rising. I'm already overweight, so expect as much. Ugh, it's always something else! Wishing you great success with Xeloda!
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BevJen & SK35, wishing you luck and great success, too, on the liver ablations!
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Thanks Bliss58. I saw earlier that you were switching and told Polly you guys were switching places. LOL. Hopefully Piqray with work for you and Xeloda will work for her! Good luck with the blood sugars. That was definitely a challenge for her, but between controlling her carbs and the Metforim, she was able to make it work, but it was a pain. Wishing you great success with Piqray!
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My piqray 300mg treatment went smooth, until it didn’t. This disease got real....day 11. My blood sugar came back at 335 before lunch, low grade fever by night, full body burning rash and every itch and pang possible. I was told to hold piqray and start low dose steroids & Claritin. It was a very long week of recovery. My MO has asked me to restart piqrayat 200mg and daily Claritin. I’m apprehensive, I’ve never felt so bad. I don’t know that I can handle this drug....but, I have the mutation and can’t, not give it another try. Has anyone restarted at a reduced dose without the bad rash symptoms etc? Thank you for any word of encouragement.
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Anewbreath, I don't know if you are a member of Facebook Piqray group. There are some very good discussions going on.
When I started having rashes all over, my dermatologist prescribed me with a cream which is very helpful. Plus I changed my antihistamines from Claritin to Benadryl and Allegra. These things definitely helped. I didnot have to reduce my Piqray dose.
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Anewbreath, I just started Piqray this week, so I have no advice on a reduction. Very sorry you're having such a bad skin reaction. Hopefully it'll clear up quickly for you with steroids, Claritin and a cream as S3K5 suggests. Hugs.
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s3k5,Bliss58 thank you for your reply. s3k5- what dose are you on? Did you ever have to hold do to rash? I’m cutaking Zyrtec at night. Does Benadryl make you tired? Allegra? Just trying to ward off the potential for skin troubles when I restart tomorrow.
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Hi anewbreath
I have used Allegra since starting Piqray. I like it because it has 24 hour dose and it dose not make me sleepy. I have not had rash but I have hand and foot syndrome (more peeling skin than rash) Steriod cream plus CeraVe and sleeping in gloves and socks help. I have not had dose reduction for skin issues. I did have one for GI issues. They resolved and I returned to 300mg a night.
Good luck with this med.
Peace
Mary
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Anewbreath, I take Allegra in the mornings since it is non-drowsy and benedryl at night. I take 300 mg Piqray every night. No dose reduction due to skin issues. Like Mary mentioned, I have skin peeling and itchiness on palms and feet.
I have been prescribed “Clobetasol propionate ointment” to apply daily at night. This has really helped.
I also use 100% organic Shea butter which has no chemicals.I hope you find something to help ward off the side effects and You can continue on Piqray.
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Hi all. I'm on day 6 of Piqray and today some queasiness hit along with low appetite. Yesterday I felt pretty fatigued and today, too. I've been trying to eat low carb this week since I will have blood work tomorrow with my GP. Hoping the A1C will be good.
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Bliss,
Hope you are soon feeling better. I've been following your reports on piqray. Sorry about the queasiness. That happens to me if I eat low carb, regardless of meds. Hope it passes soon.
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A little progress report after 3 weeks at 300 mg.
Still no rash. Taking Claritin like my life depends on it. At 3 weeks, am I out of the woods on the rash part?
(On that note, I'm liking the lotion recommended by some fellow Piqray patients, Eucerin Skin Calming Cream. Bought a multi-pack of 8 oz tubes and stashed them all over the place.)
Glucose is running about 20 points higher than usual but it hasn't gone stratospheric. Again, am I out of the woods yet?
But golly, I reallllly don't want to keep doing keto through the holidays. Yeah I'm a whiny brat but yuck. I'd almost rather just take the blood sugar meds and relax with the carbs a little-- or is that not how this works?
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lulubee, I noticed an increase in fatigue and nausea with low carb foods. Plus I was losing a lot of weight (15 lbs in the first 4 weeks) so the endocrinologist increased my Metformin. My blood sugar spikes during night times, since I take Piqray at night. I try to eat regular food for lunch and lower carb food at night.
I have been on Piqray for 3 months and the side effects are manageable now. My skin rashes appeared after 3 to 4 weeks on Piqray. Now I take Allegra and benedryl regularly, so it’s under control. If Claritin is helping you ward off the skin rash, maybe you could continue taking them.
Bliss, hope your nausea subsides in time - mine did. Now even my taste buds are recovering, which means I can taste some of the foods.
Piqray is so unpredictable. Never know who gets what and when!
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Thanks, S3K5. I find it curious that I'm not losing weight despite major dietary change. Maybe 2 pounds in 3 weeks.
Here's the quandary. Onco says go keto on Piqray, mice studies support it, yada yada. BUT. As someone whose liver has survived four failures (plus pancreatitis, yikes) back in 2013 when lobular mets destroyed my common bile duct, I'm concerned about eating this high fat diet (keto is 70% fat!). I have a 7 year old mesh metal stent in my common bile duct! What if I'm building a bomb in the basement here?
Somewhere back in the foggy haze that was 2013, someone in a white coat told me that after liver failures one might never burn fat well again. Sure enough, my weight has not budged since 2013 despite a clean diet. So yes, I'm afraid I'm eating more fat than my biliary system can manage in order to appease the Piqray gods. If it's not one thing, it's another.
Shetland Pony, my bum gallbladder buddy, any thoughts on this?
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I restarted my reduced dose of 200mg yesterday at 6am. I've been taking Claritin for 2 weeks now and by 1030am I had the chills and a fever 102. The rash started to return but not as severe as the one I accumulated on 300mg. Called my MO and given my symptoms fever & -aches he ordered a Covid test and doesn't think it related to piqray?? He has ask me to hold piqray until results come back from Covid test. I don't know if I'm cut out for this drug.... I had my hubby run to cvs and get liquid Benadryl for night, allergy for day, Ibuprofen and aleve. My quarantine bedroom looks like a pharmacy.
I wish I could give you some advice on diet and symptoms but I’m just trying to muddle through learning this drug.
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Day 8 on Piqray and still have some queasiness, low appetite and fatigue. No more headache or vomiting which is good. My stomach rumbles from hunger, but I just can't bring myself to eat. Hoping this all is a bug and Not the Piqray. I had an appt with GP yesterday, sure enough my A1C is up. Six months ago it was 6, but now 6.9. GP wants a followup appt next Friday I think to discuss diet plan; hopefully not Metformin Rx. I'm also on Faslodex and read on that thread, it can also raise blood glucose; oh yay!! Double whammy.
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Anewbreath, are you doing any better today with the reduction and Benadryl? I hope so.
I'm calling MO about a dose reduction on Monday if my diet problems continue. I swear, these gastro problems of low appetite, gas and nausea are worse than I've ever had, even with IV chemo. At least I knew SEs would subside after a week, but this hasn't. All I've eaten today is a bowl of cereal with a banana and two cheese stick snacks. I'm contemplating trying some soup for dinner or a protein drink. Ugh.
Has anyone else had these symptoms?
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Thankyou for checking in Bliss, considering your own SE. I sure hope your dinner choice soothes your stomach. Yes, fever and rash have disappeared thankfully, not as bad as first round. Dr. Stopped piqray after that first dose. I haven’t got my Covid results yet? I’m sure what to expect moving forward? Do I try again? Do I move on? Just feeling defeated😞
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Hey all. I've been on Piqray since April 16. Started at 200, then up to 250 and have been on the 300 since August. I have the gene mutation for this drug but my numbers have gone up consistently. It's almost like the drug is feeding the disease. Anyone else with this problem? Any explanation from docs? Mine has none, just days I need to be on chemo.
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Just checking in at the end of week 5.
New this week: starting to feel a little queasy at times. Had to break out the Ondansetron. Learning the hard way not to put off taking my meds till a couple hours after dinner. ICKY TIMES.
Also new: I couldn't care less if I eat and nothing tastes quite right. I'm eating as low carb as I can but honestly all I want is carbs. A loaded baked potato would be amazing! Energy is low. I've barely gotten out of my chair for the past two days-- reckon that's a low carb problem?
My blood sugar is tested once a week. I don't know if I'm supposed to go in fasting and I've gotten conflicting answers when I ask. It's definitely running higher than usual but it's still under 140 so yay for that. I do wonder what it would be if I started eating my usual diet. Maybe I'll have an English muffin with marmalade before my labs tomorrow morning. LOL.
Skin is itchy and dry. No rash. Going through Eucerin lotion like crazy.
Have had some nasty muscle spasms in my back and feet, even with robust mineral supplementation.
My tinnitus is noticeably worse.
Anybody else wondering if this drug is making you feel melancholy? I mean, it's 2020 and everyone seems to be feeling lonely and sad-- I get it. But I feel unusually down and it's just got me wondering if there's a depression side effect with this one.
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