Sob Story & Question For Pikray Users

[jersey-jazz]

My 2023 experiences make for dreadful stories but here goes.

1). 2/20- Had six cancerous lesions removed from liver. PET scan immediately following ablations showed one or two lesions left....................................................................................................................................... 2) 4/6- In an attempt to ablate remaining cancerous lesions, instrument slipped and made HOLE between liver and colon! Became a critical patient in hospital till I busted out of MSK hospital, on 4/16, on my eighty-sixth birthday. ...................................................................................................................... 3)5/1-Three weeks after surgical blunder, hole not closed, after swearing that I would never have radiation, got talked into radiation on skull by right eye. Asked to have extra protection for eye. Told that the big machine above my head programmed to protect eye. It didn't. Eye still burns. Hearing reduced. Cannot remember some words. In bed for majority of day, in pain. ................. ..4).7/19, 8/09-Start-up doses of Fulvestrant administered. Sunk into depths of illness. Could not eat. Lost 25 lbs. Went below 100 lbs. Family and I got worried. Stopped all treatments for six months to heal and rebuild, successfully! Changed oncologists.

5).1/25-Had Pet scan which revealed cancer is all three parts of spine, more in liver and activity in brain.

Today, I have been prescribed anastrozole and my oncologist wants me to begin Kisqali. I have the PIK3CA mutation. That indicates PIKRAY. My appointment with the oncologist is Tuesday. Pikray users, please respond with their experiences of side effects and outcomes of the treatment. I need to know more, in a hurry. Thank you so much, in advance.

[RedAzalea]

I am so sorry for all your suffering. This disease is relentless and the medical care is not always what it should be. Was all your treatment at MSK? I am also treated there.

[jersey-jazz in reply to RedAzalea]

Dear RedAzalea-Yes, My former oncologist is located in MSK, Montvale, NJ. Surgery took place in NYC. I still have connections with MSK in NYC. I admire MSK for their high standards and professionalism. I now have an oncologist in NJ where I live. She has a good brain and cares for her patients.

[Best521]

It is a story of courage and resilience. I don’t have any experience with PIK3CA, but I know smart, funny and brave when I see it. Wishing you the best. Looking forward to hearing others experience.

[jersey-jazz in reply to Best521]

Thank you, Best521! Here's to a wonderful healthier 2024 for as many of us as is possible with the MBC dragon lurking in our bodies. XXX OOO

[BluHydrangea]

hi - I’ve been on Piqray for 18 months. Stable after a progression on Ibrance. I’ve done well on the drug— I Do have raised blood sugar and take Metformin and it keeps it under control. The first few months on it my appetite was so low— I survived on yogurt. Lost weight but now have stayed at the same weight for 15 months.

If your weight is low now Piqray may be a challenge for you.

For me Piqray has been better than Ibrance. I don’t have the joint pain I had with Ibrance. I think digestive issues and blood sugar have been easier for me.

I wish you the very best as you face your difficult decisions.

Cindi

[jersey-jazz in reply to BluHydrangea]

Hi, BluHydrangea- When I saw your note to me and Tolife_18's note to me just below yours, I felt as if old friends were writing to me.---------------------------------------------------------------May I assume you have the PIK3CA mutation as well? My only concern with Pikray is it's bad effect on the liver when mine has been through the mill and is fragile. On the other hand, the oncologist wants me to take Kisqali which is also hard on the liver. ( It is from the same pharmaceutical co. as is Pikray.). The possible loss of more weight doesn't scare me. Months ago I simply could not eat but now I am back to eating normally and healthily. I've come back up to 100 lbs and climbing. Thank you for your input. It is encouraging.

[BluHydrangea in reply to jersey-jazz]

when do you see your dr? Big hug to you!!!!❤️❤️❤️

[jersey-jazz in reply to BluHydrangea]

The appointment with the doctor is backed up to Feb 29 but there is always the telephone.

[Tolife_18]

so sorry to hear about your suffering. I hope that 2024 will be better

[jersey-jazz in reply to Tolife_18]

Dear Tolife_18----Thank you for your good wishes! Are you still having to be in a wheelchair? I hope your health is improving in some way. XXX OOO

[ClarenceO]

Good grief. Your story is heart wrenching. What a terrible series of events. I am so sorry. I have been on Piqray for a year now and similar to Cindi, had a glucose spike and decreased appetite but was able to avoid Metformin by skipping Piqray once in awhile. Overall, as a helper drug to Fulvestrant monthly shots, Piqray has been very easy on my body. I have severe joint pain but that started well before Piqray. Wishing you the best with your new onc.

Suzanne

[jersey-jazz in reply to ClarenceO]

Dear Suzanne---Your note makes me feel encouraged enough to put up a good argument with the oncologist about taking Pikray as opposed to Kisqali. Thank you!

[HelenWi]

Dear Jersey-jazz, I hope the next chapter is easier for you. Piqray has a bad reputation but I’ve been lucky and have not had any serious side effects. There was an adjustment at first when I had a rash and looser bowels ; the rash went away and I also don’t have a blood sugar problem. I hope it works for you.

Warm regards

Helen

[jersey-jazz in reply to HelenWi]

Dear HelenWi----These responses that I have asked for and been given are so positive and encouraging. I had been on Faslodex alone for a while before there was progression last year. It was totally free of bad side effects and, seemingly, Faslodex goes well with Pikray.. My new oncologist has put me on Anastrozole and ignored my suggestion that I go back on Faslodex. I've started on Anastrozole but not the Kisqali........Due to a heavy snow, today, most things are not working. So, my meeting with the doctor is postponed until the 29th of this month. This gives me another sixteen days of uncertainty and researching. If I know the worst of it all, I can handle that. It is the not knowing that puts me into a spin. Thank you for your response.! It helps me.

[Bettybuckets]

hi jersey jazz- so brave! I have benefited from your wisdom in previous texts and didn’t realize you at 86. Good for you! But of course you must try pikray as the logical choice since you have the mutation.. and I wish you and easy time of it and that it kicks in quick and makes you feel better!

[jersey-jazz in reply to Bettybuckets]

Dear friend---By the time you realize that I am 86, I 'll be 87. I was born on April16, 1937. As I may have noted some time ago, I asked Dr Google what my life expectancy was, without mentioning MBC. It is ninety years and nine months or ninety one years and nine months. I am choosing the later. When I get to ninety years and nine months, I'll negotiate.

[bikebabe]

hello jersey jazz - that sounds like a whole bundle of fun you’ve had and OMG what an an amazingly resilient person you are. I have no doubt you will manage the piqray after all of that and hope that it isn’t too hard on you and gives you a chance to enjoy life again. All being well you’ll find a way forward to live with whatever it brings. Love and best wishes x

[jersey-jazz in reply to bikebabe]

Thank you so much, dear friend!

[Andersl]

Sorry I can't help with your specific question but I just wanted to say you have my total admiration for what you've had to put up with and how you've managed to come through.I wish you all the best.

Lx

[jersey-jazz in reply to Andersl]

Dear Andersl----Thank your your kind words! They help, for sure.

[Totheriver]

Wishing you all the best💕

[jersey-jazz in reply to Totheriver]

Thank you, Totheriver!

[mariootsi]

Omg! How awful you went through all this. I pray and send hugs and love to you.The medical professionals are very disappointing lately. I pray you recover and move forward.

[jersey-jazz in reply to mariootsi]

Dear Marootsl- You must know that I depend so much upon prayers to get into a good place and to heal. I think of prayers and good wishes as the same energy and it is all about cleansing and healing. Thank you so much for your prayers! XXX OOO

[mariootsi in reply to jersey-jazz]

You will always have my prayers!

[Saltandlight]

Praying for you!

[jersey-jazz in reply to Saltandlight]

Dear Saltandlight-----No one on this earth can have too many prayers for their good health. Thank you so much!

[jersey-jazz]

Dear Bikebabe. I think that we are in cahoots. Life is all about what you make of it. Right? I fill my life with as much grace as is possible for me and travel with or without my boyfriend, in my motorhome,, my sixth one, that is motorhome, not boyfriend.

[jersey-jazz in reply to jersey-jazz]

p.s. My secret to being still vertical is that up until 2023 when I couldn't stand up much, I have danced through life.

[Lilsusie]

Prayers for you and your doctors, good luck to you.

[jersey-jazz in reply to Lilsusie]

Thank you so much for your prayers!

[Pachira]

You’ve had some great responses and I can’t help with your question. I just wanted to tell you that you are my Inspiration. Good luck with Piqray. I’m on Verzenio and Faslodex recommended by a second opinion. I’ve been doing well and she suggested my next line should be Piqray. Recently my oncologist wanted to share news about Enherthu and thought that should be my next line. I told him I’m sticking with Piqray. What would we do without the wonderful input from this site. Hugs Chris xx

[jersey-jazz in reply to Pachira]

Thank you, Pachira!

[love2golfwell]

I'm so sorry you have been through so much lately, so much of it due to human error. I hope you will get on a treatment plan that will help and heal you. Sending you hugs and prayers at this difficult time.

[jersey-jazz in reply to love2golfwell]

Thank ou for your kind encouragement. My trouble is that I know so little and yet I am looking every treatment up just to confuse myself further. The first oncologist I had at MSK was wonderful. She came from research, she knew everything and she treated me so well. Unfortunetaley, because of Covid, she retired at 59. Now, I am swimming in deep, dark and foreboding waters.

[love2golfwell]

You are welcome. Research can be a great thing but it can also cause anxiety and confusion. I'm sorry your doctor retired. That is tough. I hope your new oncologist can give you some answers and hope. Please don't despair. Try to keep up your faith and strength. You will get through this. We are here for you. Hugs

[jersey-jazz in reply to love2golfwell]

XXX OOO

[Trissh]

Jersey, a new PIK3CA mutation drug has recently been approved. The commercial name is TRUQAP (capivasertib). I am on inavolsilib which is also an alternative to Pikray but it is a clinical trial. Side effects on inavolsilib are some fatigue and watching diet to keep blood glucose under control. --Trish

[jersey-jazz in reply to Trissh]

Dear Trissh......The drug you mention is news to me. Thank you for the information. It is a useful tool for when I am able to talk to the oncologist to tell her that I want to be on Pikray rather than Kisqali and, further, I would like to go back to Faslodex.

[Trissh in reply to jersey-jazz]

I would research the newly approved TRUQAP (capivasertib) and ask your oncologist about it. Some docs don't even know it has been approved. Might be an easier side effect profile for you!

[jersey-jazz in reply to Trissh]

Dear Trissh...Yes, you mentioned Truqap just above this post on our wonderful forum, here. Also you mentioned another similar drug in the trial stage, that you are taking.. All this was passed on to a nurse, yesterday, who, hopefully passed the message on to the doctor. I will find out as much as I can about Truqap before I meet the doctor on 29 Feb.. I think her objection to Pikray is that my liver is frail because of the ablations. Interesting to me is that the blood work re liver is fine. Have they checked you liver's response to inavolsilib? You have given me so much ammunition!

[Trissh in reply to jersey-jazz]

I get blood work every week since starting the trial and all my liver stats are good. I will get my first scans next week.

[jersey-jazz in reply to Trissh]

Good luck with whatever scan(s) you are going through, next week. Keep us posted and thank you again for helping me move forward through these difficult times.

[Tolife_18]

My dear friend,

I’m so sorry to hear about all your suffering. You’re very strong and continue to fight being your own advocate in the middle of this. Hope that changing your oncologist will help. I changed mine as well and see her at Monmouth facility, although still go for testing to BR.

I’m wishing you the very best in this difficult journey.

[jersey-jazz]

It seems that a oncologist is a lottery draw at MSK. I had an oncologist between my wonderful one and the last one but that middle one was mostly off sick. Thank you for you kind words. I wish the same for you. XXX OOO