BACKGROUND. On 20 Feb, I had five or six cancerous lesions ablated from the liver. The PET done right afterward indicated one lesion left. On 6 April, that lesion was ablated but a very bad thing happened. The ablation instrument slipped and made a hole in my colon. I have been down and out, ever since. I was further weakened by radiation done to my skull in May, in bed for most of the day, a routine foreign to me. Two months after the slip of the instrument, tomorrow, I will be admitted into Memorial Sloan Kettering in NYC for sedation, a CT scan and a needle into a nerve which, hopefully will deaden the severe pain for a month, that I have been experiencing since then. After the month, we shall see.
BIG DECISION? Other than the nerve pain deadening, I am taking a vacation from any treatments in order for my body to recover from the onslaughts. This includes cancer therapies and whatever else they may have in mind. This is against my oncologist's advice but it gives me some time to arrive at an answer to the QUESTION posed in the heading above. The oncologist is pushing Ibrance very hard and is warning me against the side effects of Pikray. The liver biopsy of my metastatic breast cancer indicates Pikray as the one. I know that Pikray is bad for the liver but it seems to go with Fulvestrant which is what I am on and what has finally become ineffective. Ibrance seems to go with Letrozol. Letrozol therapy did not help me but gave me lasting side effects.
ADVICE and INFO is asked for, here. I need to know so much more than I do. Please give me your knowledge and advice.
Thank you!
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jersey-jazz
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Hello, I fully understand because I was put first on 125 Ibrance, then 100, then 75. I couldn’t tolerate the side effects of it. Now I am only on Astrazole. So I can understand what you are saying . And I am sure my onc will suggest another. In the end the decision is ours. Will be thinking of you.
I’m probably not your best advisor here, but after my own experience with Piqray, I’d definitely opt for Ibrance. While everyone’s experience is different, I had the horrible rash reaction, and wouldn’t wish that experience for anyone! 😫
I was on Ibrance with anastrozole not letrozole. Then Faslodex. So There are several hormone combinations you can try. You might ask about that
I loved Ibrance. Very few side effects. Easy Peasy. I got just over two years on it. Wish I got more—some women go on for years and years
I have heard piqray comes with quite a few side effects. More than Ibrance. And doesn’t seem to be as effective There are also other cdk4/6 inhibitors-same family but slightly different to Ibrance I think I read one of these, called kisquali is especially effective But might be wrong
I am moving onto to Elascatrant as you know. Prior to prescribing it my doctor did both a liver biopsy and a special blood test that helped indicate what treatment might be most effective. I don’t remember the name of the blood test but MSK will know what I am talking about. Maybe you do that? It’s just a blood test so not a big deal it looks at all your mutations and other factors All good data to have
I just finished close to 2 years of xeloda—oral chemo Have you asked about that?
Other than some hand foot things, it wasn’t too bad and worked well I travelled to India twice, just got back from Japan, ride my horse (badly) almost every day and feel great I know this could all stop tomorrow so my point is not everyone has bad side effects
That said, what I should really be starting is enhertu as I am HER2 low but I scared myself reading all the Facebook posts from people who’s cancer was on the run, (it’s very effective) but the side effects were horrible My doctor assured me that this was a small subgroup, and people just living their lives aren’t posting on FB, but still…
So I get the anxiety factor—but again I would try something before ruling it out
Hope this helps…. as with everything MBC, your results might vary
It’s difficult to give an opinion. I have liver lesions but my onc ( and a second and third opinion) said the best approach is systemic. ablation with radio frequencies or with traditional surgery is only considered with one or two stable mets. If you failed with letrozole here in Italy protocols don’t allow a second chance with the same therapy even in combo with another medicament. Did they consider Ribociclib instead of Palbociclib? and in combination with anastroze or Fulvestrant? Or Abemaciclib?
Thank you! I am delving into the murky waters of all these therapies and my head is spinning. I am intending to have a very detailed conversation with my oncologist. For this, I have to prewar her so that she is prepared for my questions and my confusion.
I was on Letrozole after my original breast cancer back in 2012. In spring 2019 a met was found in my hip. I immediately went on Ibrance and fulvestrant. My MSK doctor noted that clearly the Letrozole was no longer working. I was NED by summer of 2019...also had radiation to the hip met. Ibrance 125 gave me mouth sores. Moved to Ibrance 100 and no issues. Maybe an occasional mouth sore, but NOTHING bad. I definitely would do the Ibrance before Piqray. I too have all the factors for Piqray, but my feeling is if Ibrance can be line one....do it. While you may feel that they are "pushing Ibrance," from the doctors who I have talked to, it is a great solution. All these specialized drugs are obscenely expensive, BUT if they work...I would roll with it in the order they suggest. They have seen a lot more cases than we know about. Also there are folks around the world who WISH they had acccess to Ibrance given its success rate. But I was on it ASAP when I was diagnosed with the met and I think that has helped enormously. Knock on wood more than three years.
Thank you AvidBooklover! I "hear" you! I tend to be Bolshi about most things but then I tend to go with the flow. My family would probably disagree with me. I'll be meeting with the oncologist in two weeks and will have a list of questions that I will try to send to her beforehand. It is very difficult for me to keep up with all the therapies but I hope that the oncologist makes an effort to do so.
Not sure where you are treated. I am at MSK. I often ask my doctor questions abt things that I have read on this board and each time she has an answer. There is a huge staff there and they routinely share information among themselves as well as from outside. Huge knowledge base.
Yep...and to let you know how much I am SURE that they all are up on things at MSK. In 2012 when I needed to choose an oncologist, I picked one over another. So from 2012-2022 I literally had about six different ones, with maternity leaves and people moving once due to parents and once due to a fiancé and in between a paraprofessional, too when I was five years out. Never ONCE doubted the care I was getting. Almost followed one when she went to Montvale, but sadly something happened to her and she is no longer practicing so I am glad I did not move. The one after her was great...but alas moved to FL when her fiance got a great grant. SO.....I am now with the other oncologist who I could have been with from the beginning. But she joked, how boring that would have been. That said...they all recommended the same treatment. And they all were great at answering my questions and talking about ideas I learned on this board.
my Oncologist wanted me to start Ibrance and Faslodex after Anastrole failed and my bone Mets are t/out my spine. I had a second opinion and the doctor recommended Verzenio and Faslodex and said that was the combination used in a successful trial. My tumor markers are going down but I had to stop for a month when my appendix burst. I didn’t have surgery just antibiotics and I’ll discuss this with my Onc next week. The dr giving the second opinion was from Seattle alliance and also suggested Piqray as my third line. Hopefully this current combo will work for a while as I had 5 years on Anastrazole with Xgeva. Maybe a second opinion would help but your Onc seems to be giving you good advice. That was a terrible set back with your colon. A month off for me increased my markers from 129 to 149 and I started at 450 last September so about 7 months on Verzenio/Faslodex. I stopping Xgeva after 5 years due to eye problems and ONJ. Good luck I hope everything went well Chris
I actually had a bad side effect from Ibrance ( pneumonitis) so was put on Piqray and while I had a rash for a few days and have looser bowels, I’m generally tolerating it quite well. No liver issues and my blood tests have been good. I *have* been trying to limit sugar to ensure I don’t have a glucose increase.
I understand the fear of Piqray side effects— I had the same fears but my oncologist said it was worth trying because my alternative would likely have been chemo.
Dear HelenWiant---If it were not for the threat of liver damage from Piqray, I would have gone immediately on Pikray. The Foundation test indicated that I have a PIK3CA E545K, etc, mutation. Why do they do these tests and then disregard them? I am really befuddled.
I would choose Ibrance. I was on Anastrozole and Fulvestrant for almost 6 years and am now on Ibrance and Tamoxifen. Other than fatigue, no real side effects. Thank heavens!!! Good luck with your decision and I hope it works well!
Thank you, Nocillo. One day, I am tending towards I Ibrance and then, another day, the choice may be Pikray. Then, on another, I want to know more and more before such a big decision is made.
Reactions, side effects so different for everyone. I've been on Ibrance 125 and Fulvestrant for over 5 years. MBC to bones (predominately spine, ribs; liver lungs). Very few side effects for me. But take whatever works and you can tolerate.
Thank you, trout girl! I take it you are a fisherwoman. Trout? Yummy! Your note about the five years on Ibrance is very encouraging. Have you been tested by the Foundation test or some other?
Yes, i flyfish for trout. Been going to same place in michigan since about 1989. I was diagnosed with bc in dec 2005/ jan 2006. Chemo on shrink tumor, surgery, several different types of chemo (no problems, just different focus/purpose), radiation, Femara /letrozole after that until mbc diagnosis spring 2018. Lots of scans and testing. Dont know Brand of tests, but lots of characteristics analysis. MBC mostly in bones spine, ribs plus liver and lung. On ibrance Fulvestrant/faslodex plus Zometa since late spring 2018. Have occasional side effects, still go fishing at least once a year. Survived stroke aortic heart Valve replacement and covid. Am being treated for kidney disease. Can sound overwhelming but at this point it is not. I do have a cleaning lady and do not cook - i reheat. Try to walk daily in warm weather. Heading out fishing in July.
Dont know what foundation test looks for but my treatments is based on all kinds of % data and the presence or absence of 3 4 or 5 letter characteristics.
I'm on Ibrance and Exemastane. I have to keep bringing down my ibrance from to heavy of side effects. I think they can interchange many of these drugs to find the sweet spot. First of all I am so sorry for what happened to you. And I get it with taking a break. It's like they just bomb our bodies at stage 4. And it's too much. I always say what's killing me the cancer or the treatment. I would think THEIR mistake with hurting you colon should get some sort of malpractice and compensation. You have rights. This surgeon damaged you. While already in such a fragile state. That's just terrible. I get that mistakes happen. But that was a pretty big one. Take the break. Maybe a moment to heal from the damage they're doing. I am NOT A DOCTOR. im just going from My own experiences. Western medicine is so barbaric to me sometimes. They just cut and hurt. Have you investigated some alternative medicines?my go to for pain and suffering from these treatments has been acupuncture. May God give you some relief and I wish they had medical guidance counselors to help with these heavy decisions. So frightening. So many options. Trying to find the right one while sick as hell seems awful. I hope you have someone to hold your hand during this process. My mom has been my rock. I have a 10 year old special needs child that needs my constant care too so battling this while caring for his serious health issues has been overwhelming. I pray you get help.Blessings Nichola
Dear Nichola--Thank you for your message, full of information! I try to stay positive which is very difficult with our divided nation, the USA. In that vein, I would not be pursuing any legal avenues. I so agree with you about western medicine. It does not treat the whole, the body and the mind. Our cancer doctors only try to fix the cancer and never mind the rest of us poor souls. This why I am taking a break from treatment. When I was down and out, they scheduled radiology treatment to my skull. I asked that my eye would be protected more but was told that the big machine above me was programmed to do just that. Many weeks later, my right eye, next to my skull is hurting and I end up exhausted and in bed even more than before that. Further, I send your wish about medical guidance counselors but that would be more in the province of Asian medical philosophy. I am not going to say that I am sorry that you have a son who needs your help all the time because I know that you love him deeply and that it is your pleasure to help him even though it is sometimes very very difficult for you. We have two young autistic men in my family, so I understand. xxx ooo
I know everyone is different, but I have found Ibrance to be very tolerable. Piqray is inmy future too and it seems most people have problems with it. It's a tough decision, but Ibrance may be a safer choice. Letrozole messed me up too. It was awful.
It made every joint stiff and achy. Also the fatigue was awful. But, remember everyone is different ! I am the queen of side effects. I have the wrong disease to be so sensitive to meds!
Thanks for your response. I get oodles of side effects too. I managed to get Femara, brand name of letrozole, and had very few anthralgias. On anastrozole the pains in joints were horrible. Letrozole affected my mind--anger outbursts, unable to think (which some may describe as fatigue), just felt like I was intoxicated the whole time. Harsh stuff, these drugs!! Best to you!
It is so amazing how one drug works like magic for some and is so horrible for others. Like you, my experience was the latter for Letrozole. It affected my heart badly and put the numbness in my toes, permanently. What a guessing game we are in!
Hi there ! I was on Ibrance for a year and had progression. Then I went to Piqray and was on it for 14 months with no side effects except that I took Metformin to combat the side effect of high glucose. Piqray was very successful for me. 2 months ago however, I had progression to skin Mets so I’m now on Xeloda.
Thank you, Adele_Julia for your comments. Are you saying that you were on Pikray for fourteen months before progression? Is Pikray what your tests pointed to as mine were?
Yes . I was on Piqray for 14 months before Skin Mets developed. I’m now on Xeloda an oral chemo with minimal side effects. If my skin Mets on my chest don’t improve by June 21st we may do a couple months of Enhertu to knock the Mets down or another option we found was going back to Piqray with an AR inhibitor . Both show to be promising options as is Xeloda. I didn’t have any side effects on Ibrance. On Piqray it was high glucose that my onc kept in check with a prescription of Metformin or Jardiance. I ate a keto diet on Piqray. Hope that helps !
I probably said this already, above. I am on Fulvestrant with absolutely no side effects. It stopped working and the cancer spread. One of the main things that gets me is that the Foundation test points directly at Pikray and yet the doctor is promoting Ibrance because it seems to her that there are less side effects.
Ibrance and faslodex shots worked for me on liver lesions for about a year. I had almost no side effects, I was very disappointed when it stopped working! That’s my 2 cents…. These decisions are always tough…. Good luck!!
Jersey-jazz,Can't help with the information you need, but sending you best wishes for long range planning and trips. Prayers, hugs and blessings. Hannah
Hi Jersey-Jazz! I'm so sorry to hear about all these things you are going through, and I understand how you are feeling about all the protocols. My experience was very easy on Ibrance/Letrozole. Ibrance can be and is combined with Fulvestrant for many and works really well together as well. As far as Piqray, that is a hard one to tolerate for many people. I took it for 9 days and it put me in the hospital with a blistering rash from head to toe and I had to be on steroids for over 20 days until it was out of my system. I was upset that I could not make use of Piqray as it cut my markers down in those 9 days by half, but my doctor insisted I was not losing out on anything, as Piqray is a difficult one for so many people who also could not take it. My doctor also told me that Ibrance has longer endurance on average than Piqray. Ibrance is much easier to tolerate for most people and if you are ER/PR+ should take care of the cancer with any endocrine therapy. I am on Xeloda now, and from my personal experience, Ibrance was a breeze and while it worked, it worked very well. I have tried Ibrance/Letrozole, Verzenio/Fulvestrant, Fulvestrant/Anastrozole and Piqray and now Xeloda. Of all these therapies Ibrance was a breeze. I hope you find the answers that you need and find the best therapy for you. Take care!
That was so good that Ibrance was a breeze for you. I guess, before we are done, we will have sampled many of these combinations for with varying degrees of success. I say, "Keep them coming!".
Just a heads-up if you're diabetic--almost immediately after taking Piqray, my blood sugar suddenly shot up to almost 700--! And I'm a very well-controlled, long-time type 2 diabetic. It was very, very scary, but the pharmacists on my oncology team caught it in time.
Please, if Piqray is prescribed for you, keep a very close watch on your test numbers and test more often than usual. This could have ended very badly for me.
Thank you for the heads-up, Widdershins3! I lean towards Pikray just because of my Foundation test indicating that therapy. I do not have diabetes but it does run in the family. My oncologist, on the other hand, is really pushing the Ibrance and has arranged for me to have it for free. This cancer thing used to be a sideline. Now, it has taken over my life.
My oncologists at both UTSouthwestern and MDAnderson said if liver lesions are large or there are several, ablation is off the table; systemic therapy is what is done. I was on Ibrance/Fulvestrant for four months and while it worked for my lung mets it did not work on my liver and bone mets. So I’ve been on Xeloda since January with very good success and not-too-bad foot and hand redness. Xeloda is easier on me than Ibrance /Fulvestrant was. I did have a liquid biopsy done and it looks now like I’m low HER2, so I think Enhertu is in my future.
Chamisa - Your note about Ibrance not working for the liver is concerning to me. Obviously, the MBC to my liver is huge and, as you write, I will not be having any more ablations there. My Interventional radiologist was concerned about doing all those ablations but I had told the Oncologist that I was really considering no more treatments because I was nearing the age of eighty-six and wanted to enjoy a quality of life rather than suffering so much from cancer treatments. How do you know that Enhertu is in your future? Does you oncologist discuss the future with you? Mine has very few words or info for me. Thank you!
No, my onc won’t really discuss future treatments. I’ve specifically asked, “what will be next “if (when) this quits working?”. The docs always say that it just depends on what’s happening and that there are still a lot of options out there. A little frustrating to me, because some of the ladies on here seem to have doctors who really discuss things and lay out plans for the future.
I said enhertu was possibly in my future because of all I’ve read about enhertu and low HER2, and because I read in my lab report that I was HER2+1 which is low (I’d originally been classified as HER2-). That report showed someone— maybe the doctor preparing the analysis or maybe my doc, who knows, — hand-wrote “enhertu?” in the margin.
Very interesting! I am bound and determined to get some decent information and comments from my oncologist and will be prepping my niece who will be with me to support me in the questions, if I falter.
I am very sorry that you have toe endure so much pain. I have been taking Piqray for just 3 weeks together with Fulvestrant. So far the only side effect I have encountered is diarrhea and elevated blood sugar levels.
Hello jersey jazz. I have been on Ibrance and letrozole for 4 years now and i have had very minimal side effects. I also had solitary mets to the liver which was zapped out my ibrance in like a year of taking it. I would recommend this treatment
Ultimately, it's your choice. But, back in March I had to stop taking my Ibrance to have some surgery (only supposed to be 2 weeks off the meds but accidentally went 3). It stopped working & the cancer cells in my Peritoneum grew like gangbusters & now is producing Acetesis fluid buildup on my stomach. I barely eat because I feel full all the time, I'm supposed to sleep reclined I can't lay flat or my stomach distends & crowds my l lungs. I've already had to have it drained once back in April (5 LTRs.) & may now need it done again (?). Research a lot before you choose.
Dear OneLump22. ---What a nightmare you are going through! How long had you been on Ibrance and what other cancer drug are you taking at the time? What are they telling you? Why is this nightmare happening to you?
I've been on Ibrance with Faslodex. This is happening because I stopped taking it too long. It was only supposed to be 2 weeks, but ended up off of it for 3 weeks.
I had a good experience with Ibrance for almost 3 years… most recently I was on Faslodex shots and Ibrance until they stopped working and liver mets increased. My doctor was very flexible about Ibrance dosage and giving me breaks - he always said the hormone blocker is doing the work, Ibrance supports it. Now I’m on Afinitor and aromatase and the side effects bring me to my knees. Wish I could go back to Ibrance.
The comments above seem to support the idea of taking. ibrance. at least to try, with Faslodex. One day, I lean that way. The next day I think about my foundation test indicating Pikray. Thank you for responding.
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