Ibrance (Palbociclib)
Comments
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please don't say that Diana. Who was the one that went out to a birthday party today after being in the hospital on and off for two days ? YOU! You're so active and always on the move, you just need to get back on track again. And you will. You will! There will be you going on that cruise and that is all there is too it.! Big hugs and so many more prayers coming your way! ~M
And btw: having a blocked kidney for two days is a big deal there is a lot of fluid in one day alone that is expelled. Maybe a kidney that wasn't blocked for two days could put out regular flow. But it's gotta catch-up somehow and it only has one place To go! Out!
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lisbet, I don't have any words of wisdom beyond the great advice you've already been given, but your scripture quote from Isaiah is a good one to always remember. You are in my prayers as is everyone here.
Dianarose, as PatG says you WILL take that cruise. You can fight this latest setback just as you've fought the others.
Pat 2, I'm so sorry Ibrance is giving such trouble with fatigue. It was that way for me too for a long time but things improved when I pushed myself as my MO told me to do to try to exercise a bit. I still don't do as much as I'd like but it does help. My sore feet keep me from doing a lot but I keep trying since I know it helps.
I'm sure I've missed someone who needs a special prayer but know that I am praying for all of you. God knows our needs better than anyone and He does give us the help we need even if it's hard to feel sometimes.
Hugs and many prayers, Faith
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sadiesseevant, I'm sure you know this but just in case...sclerotic means healing. Maybe the Ibrance is working for you. Goodbye luck taking with your MO. Let us know what you decide
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If MO takes me off Ibrance I have a brand new bottle never opened. I wouldn't have a problem with someone coming to visit and it disappearing from my shelf in the bathroom.
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Thanks Jensgotthis. But actually, sclerotic only refers to laying down of additional bone in response to the cancer. It is less common but typically indicates a slower moving disease. In some cases it can be a result of healing but not likely in my case as these are new lesions. But I'll take slow growing!
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oh man. And here I thought slerotic was something I wanted to see on my results! S, while it's obviously better than seeing progression or another description of new activity, it's. It something we don't have to pay attention to? Bummer
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Pat 2: Glad to hear about getting that stupid catheter out. Not glad to hear you are still sob.
My fatigue has gotten better especially after my Xgeva shot, so I just have the "it takes 10 minutes to get the joints working after I sit for awhile". We'll see if the TMs are still coming down after completing this the 5th cycle. I believe I mentioned that one of my locuted areas was shrinking from the catheter. My bone mets have all been sclerotic except for my left hip. And my MO worries less about them because likely they won't fracture. Since I just get CTs, I don't know about how much uptake there is in the sclerotic areas, but I have quite a few. It well may be that like me, with the first CT scan they weren't really looking for them and they were missed. Do you still have the other side effects from the AI, ie hot flashes? Unfortunately, Ibrance needs the hormone suppression to work.
Hope you feel better soon even if it takes a regime change. Ditto Dianarose.
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Jen, I'm not the expert but sclerotic can be a good thing, indicating healing. Just in my case thy MO said clearly, bone mets worse. The first CT in January flagged a bunch of suspicious areas in my hips that were consistent with mets so I think they would have noticed the ones on my spine and ribs.
I'll know better tomorrow how worrisome this is. I think my MO is more concerned about the progression rather than the mets themselves. Fortunately hot flashes are not something I have to deal with. Chemo put me into menopause my first time through this. I used to joke that it was one big flash and it was done!
I feel like the Ibrance fatigue is slightly less today although I am considering a quick noontime nap at the moment.... zzzzz
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When the docs say Ibrance is not working are they sure it's the Ibrance that is failing or the combo that is failing? Are there any other drugs besides Faslodex and Letrozole to combine with Ibrance
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Dianarose, I take Arimidex with Ibrance. Aromasin is also a possibility. These are both AIs like Femara (letrozole).
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Pat- good to know. Thanks. I have a lot of questions before I let her have me ditch Ibrance.
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lisbet54, my first metastatic site was a 1cm lymph node on my chest wall. I had a funny feeling under my arm so I agreed to get my first scan in many years. There was no cancer under my arm, just the chest wall node, something on my liver and a tumor on my spine. The liver thing was just a fatty deposit and the spine tumor was benign. The good news was that the biopsy removed all of the benign spine tumor and I haven't had recurring back pain since! That's a wonderful thing!
At the first diagnosis in 1994, I had a spot show up on my pelvis. They called it a "bone island" but would put this statement at the bottom of my scan reports: "Cannot rule out breast cancer metastasis." Some time during all those years it went away!
My friend, I hope you will follow your heart and do what makes you happy. If you can feel well enough to make a trip, go and don't worry about the travel insurance. My experience with many survivor friends over 20+ years is that breast cancer isn't necessarily a fast-moving thing. If you choose to stop treatment and take your trip, you can always decide to begin treatment again later. I had a friend who stopped treatment, went so far as to go on hospice, then changed her mind. I had gone to visit her for what I thought was the last time and bent over the bed to give her a hug. She whispered in my ear, "I'm not ready to die yet." I whispered back, "Then don't, Margaret." I didn't get an answer at her home the next few days and thought she had died and gone back to Alabama. Nope! I answered my phone on the third day and this is what I heard, "Pat, this is Margaret. I decided not to die. Find me a new doctor who'll give me some chemo!" I did exactly that and Margaret lived well for another year. She came to every party we had and we honored her as one of our "Warrior Women of the Mid-South". I bet you can google and read Margaret Chilton's (Memphis) obituary. What a woman!
To all of you: Every choice you make on this journey is brave. I've known people who were still getting chemo on the day they died and other people who turned down conventional treatment altogether. I had a friend who borrowed money and did one of those alternative treatments in the Bahamas. Another did coffee enemas in the rest room at work. My friend, Colleen did all kinds of clinical trials and some crazy alternative stuff while she grabbed every chance she had to travel the world. I pray that all of you follow your hearts knowing God's protective hand is on you.
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Dianarose, I could not agree with you more. CANCER SUCKS BIG TIME! I am glad that you are home and hope that you feel better soon. Please get some rest and accept any help that is offered to you. In fact, don't wait for an offer -ask for help! I am lifting you up in prayer.
Gracie, you are also in my prayers.
Lynne
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hello all. I too am wonder if ibrance and letrozole fail is there a chance that the MO will prescribe Ibrance and a different hormone?
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DianaRose: my MO offered Tamoxifen to be combined with Ibrance if I would have rejected the BSO to force me into menopause. He pointed out that this combination was not part of the big clinical trial, but he supported the creative option if I felt so compelled. His point was: only 2 drug combinations have been studied thoroughly thus far. NOT studying other options is not a comment (positive or negative) on the viability of those alternatives. If you're willing to take the risk, go for it. Find the right combination of Ibrance plus hormone-hating option that fits your situation.
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Dianarose - i wonder if they could add in faslodex with ibrance, 2 shots into your hips. I was on 2 other hormones arimidex and aromasin. Faslodex for me personally has been much easier than the hormone tablets. Much less side effects. I very rarely get joint pain now. My back gets a little stiff at times. I do get a few hot flashes after the shots. My fatigue is improving. It appears to be keeping me stable. My onc said that the faslodex they use now is double the dose they used previously as a treatment. It can be effective on its own too
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Laura- at this point I don't think I ha e much to loose.
Lilli- I have been doing Faslodex shots with the Ibrance. Seemed to work the first three months then went downhill on the fourth cycle
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I am almost ready to begin my fifth cycle of Ibrance-Letrozole and have noticed some hair thinning. By reading some of the other posts I am beginning to think it is from the Letrozole and not the Ibrance. I hope that it tapers off at some point in the NEAR future. Anyone else have any advice on this? I have been neglecting to drink an adequate amount of water and am hoping that may be part of the problem.
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Hello. Dianarose..so happy you are back and posting. You seem to get right back up after being kicked down. You are one tough woman. I also wish positive energy for Gracie and Dani. Zarovka..hope you are back on a bike..even if it is a recumbant bike..hope no fractures from that bike accident. Healing thoughts for all that I have not mentioned. And congrats to the many with continued stable and improved results.
I have a question and it might be stupid. I am ER+ PR-. The ER+ is 66% positive receptor cells. Does that mean the hormonal AI can only destroy 66% of my cancer cells and the Ibrance CK4/6 inhibitor supposively takes care of the rest?
I am stable, no progression in liver. My platelets are getting hit hard, run about 62K. My MO does not want to dose reduce to 75mg..not yet.
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Dianarose, I'm so glad you feel well enough to post. You will continue to improve, if anyone can, you can.
Lisbet, I was reading about your desire to travel and being worried about not getting travel insurance. Here in the US, I was able to get travel insurance with my pre-existing cancer if it's bought within 2-3 weeks of your first trip deposit depending on the company you choose. I also included cancel for any reason in case I just don't feel well enough. It's not the cheapest insurance, but the peace of mind of being able to get back home however necessary is worth it if I get sick while there. The thing is the first deposit can include buying your airline ticket even just the taxes on it if you get frequent flyer tickets. Estimate the cost of the trip and get insurance for that amount. Maybe they have that type of insurance where you live. You should just do it and make yourself happy for now and having something to live for is a great boost to your immune system.
We are in our late 70's and going to Italy one more time, even though I'm worried about my energy and very sore feet at the moment. "Just do it".
Happy travels and blessings for all.
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Special healing prayers for all my met sisters. Love and peace to all. Cathy
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Hopefulgirl, that's a wonderful quote. Thank you! Have you shared it with the Ibrance group on Facebook?
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lisbet
I am very concerned for you- it seems you are stage IV for only a month or so?, your depression/alarm and willingness to give up on life is very very common at this stage. You have had a hard time with side effects and are not long past your prior surgeries. Please check out the liver mets threads, many people like Halaven (I think that is how it is spelled) which is a different drug. I found Ibrance to be tiring but it goes away after a few months, and is a very powerful drug- although it has to be in combination with Faslodex or Femara. Please keep posting and try to give yourself some space to adjust- you are very isolated and its tempting to throw in the towel, but many of us have found that it can really genuinely turn around. It is all about quality of life, however, I am convinced that you can find a better quality of life with the right treatment than in dropping everything and taking yourself to a shorter and more brutal fate. Also, I think there are great drug combinations that will be reported on as soon as December in the San Antonio meeting, you haven't had a combo with immunotherapy as yet, and those have very little in the way of side effects. Please treat depression and anxiety first, then see how you feel?
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Hi Pat. Yes I have. I read all the posts you wonderful ladies post and so far so good after round 1 of ibrance and letrozole. So much positive feedback from all. So much to learn. I am still caught in the middle of funding as Pfizer negotiates with the Ontario government. I am fairly hopeful that by the end of August that area will open up. Cathy
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Pat 2 (aka Sadie), I asked about the hot flashes because even though I went through menopause 20 years ago, I still get hot flashes. They were made more intense by letrozole and now faslodex. I'm wondering if maybe it's the arimidex that is failing you rather than the Ibrance since you've taken it for quite some time including the time before mets. Just a thought...
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Lisbet If I read your post correctly, you are a widow too. I lost my husband to pancreatic cancer 7 years ago. How long has it been for you? It certainly is a complicating factor to add to MBC. I'm trying to picture your home. I'm sure it's beautiful with land and animals. But, it all has to be taken care of. Who does that when you are unable? I can certainly imagine how stressful that would be for you, all that stress to add to MBC and treatment.
I wish there could be some way, even temporarily, to remove yourself from all that while you make these huge treatment decisions.
Other than that, time is the only thing that will really determine if Ibrance is working. My next scan is August 3. It will show how lung and chest mets are responding to TX. Although it won't be definitive for liver mets response.. How will getting the results feel to me? Living alone and thinking about that is complicated and emotional. It makes my brain go in 50 directions at once.
Thankfully, I will have family with me at my MO visit to find out results. I believe that there is reason to believe that I am responding to this powerful drug and will be on it for a long time. I hope the same for you, Lisbet. Give it time.
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Hi Cive,
Good question and another one I planned to discuss with my oncologist today. As I indicated, he seemed to be favoring a switch back to chemo but a) I'm not certain the current cocktail is not working and b) I need to better understand how this might limit my options going forward given that, at the moment, Ibrance is provisionally approved in Canada as a first line treatment. As a result, I'm not sure if my extended health provider will approve payment of Ibrance down the road if we decide to combine this with Faslodex. I agree completely, the problem, if there is one, may be the Anastrozole which I was on for over two years. While there was a very long gap between my use of the drug in 2007/08, it is conceivable that it is not doing it's job. Ultimately, while I have no particular aversion to going back on chemo, I want to better understand options before making the switch. I'll let you know what my MO and I decide today.
Must admit that today is looking a lot brighter for me. The Ibrance fog has lifted and the pain from the stupid catheter has finally subsided. Only slightly nauseous which is a big improvement.
Thanks for the support. It means so much to me to be able to reach out to folks on this site.
Pat2
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Was up a lot in the night with stomach cramps, nausea and acid reflux. Got up to bad diarrhea like water again. Was on our way to the cancer center for some IV fluids and nausea medication when they called to say they were closing because they didn't have power. Ended up at ER for about 7 hours instead. They did blood work and another ct scan. I had a meltdown after the scan. Was my second one in just over four days without any Xanax! Ct didn't show anything different then the other one other then improvements in both kidney. Need to get them a stool sample as doc thinks it could be C diff because I have been on antibiotics for so long. Would explain why hubby keeps getting sick too as it's highly contagious. Will bring sample tomorrow (hopefully I can get enough food in me to go) then it takes about 48 hours to test. I just want it to go away!!! Lost four pounds. As far as other things on the scan I am not sure if it's new stuff or stuff that has been there. I am praying they let me go back on Ibrance. I am exhausted and I know my DH I still too.
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Dianarose - What a terrible exhausting day. But you did an amazing job taking care of yourself despite terrible conditions (ER for 7 hours would do me in). I am optimistic that both kidneys are healing and you found a doctor looking for a cause for these symptoms ... Cdiff would be awful but at least you know what you are dealing with.
>Z<
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Diana~ been thinking of you all day. I am hoping you'll be able to rest after the ER marathon. My DS was rear ended and in a three car accident in a bad pouring rain storm earlier tonight 😞, his car was in the middle which had the worst damage. Luckily all he has is a neck ache. I'm thinking some whiplash. So we are watching him closely. I am sick of people i care about having a hard time. I am just thankful everyone is ok and home safely. My wish for you my friend is a good restful sleep,and no more ER visits, glad to know you're in good hands with your sweet DH. Hugs my friend 💜~M~
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