Ibrance (Palbociclib)
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Hi Dee!
I HOPE we can stay on Ibrance for at least 30 more years!
Carol
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Faith and Carol~
Thank you so much for your supportive advice and words of encouragement.
I think the possibility of the lung being the primary is less now that the second path came in showing breast. We are STILL waiting for confirmation about HER-2 status and specifics on tumors from the oncologist (the doc went on vacation last week after promising to call. My MIL finally got a nurse Friday late to share some of the path- HER-2+…. all so frustrating to wait for her). Hopefully we will get a call tomorrow and results from Tuesday's brain scan will come in soon.
As you can imagine, we're eager for my MIL to start the Ibrance. She VERY anxious and wants to start her treatment beyond Letrozole.
I took her for a massage today bc I can tell she's in pain. She's trying SO hard to not complain, but after spending the last week with her, I can see she's hurting. I have gently encouraged her to share with me and the docs when she's hurting. SHe prides herself on being active (tennis player and hiker), which is amazing. But I don't want her to suffer unnecessarily.
Again, thank you for all the encouraging words. I know it's not with with the disease, but the support means SO much.
Warmly,
GracieGirl
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Dee and Gracie - Welcome to Ibranceland! So many encouragers on this thread! You will find a lot of support here.
Gracie - One thing RE: pain, my pain symptoms lessened quickly after I began my treatment (Ibrance, letrozole, XGEVA). For me, there was a day or so of slightly increased pain immediately after starting, but it dissipated quickly. I regained full use of my leg, which had been giving me trouble. So there is every likelihood that your MIL will be able to maintain an active lifestyle if that's what she's accustomed to. I live my life pretty much as before with the exception of needing scans and monthly doc appointments for followup/blood draws. Many of us are fortunate to be very active. Hope your MIL is one of them, Wishing your family well.
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Welcome Dee! I am ready for all the news about your experience on that study that you can find the time to share. In that study, they are trying to figure out if patients get better results if they go on a lower dose and don't take a weak off. I'd love to know.
In my experience at the highest dose, the stuff definitely builds up in your system. The third week is noticeably harder.
Today I begin the 3rd week of cycle 5 at 125mg. I have noticeable fatigue. I'll be cruising through my day and then have "a sudden loss of cabin pressure". All I can do for 10 minutes is sit and stare into space. The skin on my hands feels thin and brittle. My skin gets shiny like wax paper and red.
As these drugs go, its tolerable. I am exercising regularly this cycle and its made a huge difference. But I'll be ready for my week off when it comes.
I keep waiting for my hair to thin, but that's not happening to me. I've heard people find that it develops in cycles 6-9 but goes away. But so far so good.
Eelder - I take 2000mg per day of highly bioavailable curcumin under the supervision of an integrative doctor and an oncologists. There is some concern that curucmin might interfere with letrozol; however that is something that can easily be tested for. The purpose of letrozol is to block estrogen production. If it is not working, it will show up in your bloodwork as rising estrogen levels. I am not having any problems taking high doses of letrozol and curucmin. I do think it is an important supplement for us.
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Dee, welcome to this forum. I also will be waiting to hear the results of this trial. I started the 6th cycle of the 125mg 4 days ago and I am definetly seeing more hair loss. I've also heard that this is about the time it starts, what I haven't heard is if it slowly starts to grow back after it stops. I've always had strong nails and now they are getting softer and starting to break. While I don't have the major mouth sores that others talk about, my mouth always has a burning sensation and my throat is sore a lot. Is anyone else having these issues?
Z, I also think this treatment is tolerable but I also feel the build up to fatigue in the third week of the cycle and while exercise helps, sometimes I just have to sit or even lie down for awhile. I just feel really worn out by late afternoon and thinking about preparing dinner is just too much sometimes and I like to cook. I'm really wondering how much better we might feel at the 100mg dose? It will probably be a year or more before we get any answers but I'd sure like to know now
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Thank you Babs, I am pretty anxious......Hope I get the green light to start up Ibrance again.
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Hi, Dee! Good to see you here! I'm also very interested in the trial you'll hopefully be doing!
Z, what can you -- or anyone for that matter -- tell me about Astragalus, which I think you may take. I saw my ND on Friday for the first time in ages, and she suggested adding Astragalus as a "blood builder." But another BCO member gave me the heads up on at least one anecdotal tale of it causing higher BP and messed up AST & ALT in someone who was on Ibrance. If you're taking it, have you had any issue with BP or liver #s? My ND is also keen on L-Glutamine -- said it would help w/inflammation and improve absorption. I take a lot of supplements already and just a bit leery of adding more and possibly rocking the boat!
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Hi all!
Recognize many of you here, Aurora, Carol (I agree, 30 years, wow, wouldn't that be great!), Deanna, Z & thanks for welcoming me, Faith & Moissy. I don't know yet when I will start, I don't have a bone scan until the 5th of July, don't have a date for the CT yet or all the labs. Will post when I know these & a starting date.
I have a great deal of travel to do this trial, 2 ferries that take about 6 hours each way but can be up to 8 or more. I hope I have the stamina to do this. I hope I don't have the hair loss/thinning as I already have that from anastrozole. Oh to think that I used to complain because my hair was so thick I could hardly get a brush through it, my how times have changed.
I'll keep going back & reading up on tips. thanks! cheers, dee
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Does anyone know what the longest period of time someone has been on ibrance with no progression? It's so new.... I know we're learning more every month.
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I called for my first refill today. Very annoying because I was on the phone for a least 20 min verifying every tiny detail that I gave them one month ago. Is this normal? I need to gigure out a way to speed this up because I do not like being on the phone and even worse wasting time. I am going to get phone rage if this continues. Time is like gold to me and I get really resentful about it. Made me late for work and I wasn't able to take anything to eat with me. I pick all day at fruit that I bring from home and I am craving it and dozing off at my desk.
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So my scans showed slight progression in my liver. Slight growth and SUV uptake in existing tumors . Luckily nothing new anywhere else. But no more Faslodex for me. I am changing to Anastrozole plus Ibrance. I have already blazed through two meds so am feeling pretty down in the dumps. I started on Femara and Ibrance, then Faslodex alone, Now Anastrozole and Ibrance again at a lower dose. Just wish I could get a long run on something. I feel a little confused because my Onc had me quit both Femara and Ibrance at the same time as my liver enzymes were elevated. So we never proved conclusively which one was causing it. My thinking is we should have cut one at a time to eliminate one as the culprit? I asked her if the Ibrance raised the enzymes this time, proving it to be the one, and if Anastozole fails, could we still return to Femara down the road? She says if I fail one AI the other will fail also. But Femara and Ibrance did improve my scans in the past and I think would have continued to do so if we had not quit both. I think we should have just tried lowering the dose of Ibrance back then......She thinks it was the COMBO that was the problem, but really she has no conclusive evidence. I am confused on what to do...
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I am not 100% sure but my understanding is that Ibrance works differently than Anastrozole and the other Al. The Als block hormone receptors while Ibrance is targeted therapy. Again not sure but that's my understanding, so your Mo dumping them together does no make sense to me.
Aurora
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artist, can you get a second opinion? It's hard to outguess an onc who knows you, but this sounds like a point in your tx where another opinion or two might be a good thing, since there is no clear cut answer nor research to back up your onc's current recommendation. Is she local? Would you have to travel very far to get to an NCI-designated cancer center where they will have more likely been in this situation with other patients and will have experience on which to draw? (((Hugs))) and hang in there! Overall, there's nothing horrible in your situation, but I just want you to use caution about following an unsubstantiated recommendation and not feel confused about the logic behind what's being suggested!
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HLB, I know what you mean. The pharmacy person has a script with questions. But 20 minutes is a long time. Obviously ask them if they can somehow streamline it. They call me every month now, and sometimes I refuse the call or don't answer it (my phone shows who is calling), then call back at my convenience.
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Ell- My MO has told me that there has been success with Ibrance since the trial started so 6+ years so far.
Art- Deanna took the words from my mouth and organized them much better than me! I would have written- you need a second opinion asap! I have asked my MO many many times... would falsodex be next for me if we start to see progression. She said probably not, the first thing they would do is test where the new progression is and go from there. My second opinion saved me from doing a chemo that I may not need for a very long time.
Carol
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Deanna, yes I would have to travel but only about 90 minutes to a major center. I am calling today. it just seems like when I try to ask her questions she circles around a lot without really satisfying my question. Not on purpose but because I get a little lost on her logic I think. Plus auroaya, I haven't heard of pairing Anastrozole with Ibrance either, nor did I see any Stage IV patients on it in the Anastrozole thread? I was also wondering if we are switching Tx too fast and if adding the Ibrance back in to Faslodex would "boost" the results. At least we could see if the Ibrance was the liver aggravator. LovesMaltese, That is exactly what I am trying to avoid too. Graduating too quickly to the more toxic Tx's....Arrggghhhh! Thanks all for the feedback.
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I'm on Anastrozole or arimidex and Ibrance. I'll be starting my 7th round soon. Femera didn't agree with me.
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artist, so sorry that you are going through this disappointment and worry. I thought of you a few times today and kept checking to see how you made out with your results. It's scary and confusing, but take a deep breath and, yes, go for that second opinion. You will feel better, and the 90 minutes travel to a major cancer center will be well worth it! You need explanation and clarification and you need to feel more confident in your treatment plan! Sending hugs and hoping that you get an appointment very soon so that you can get on track and feel more settled.
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Shetland, I am going to ask next time to move things along. They actually have been calling me CONSTANTLY but I didn't answer because I didn't recognize the number and also because I thought it was the collection agency lol. I finally listened to my messages and it was them every time. So I called for the refill and finally got that call over with and about an hr later they called again! They never said what they wanted. I was annoyed this morning by the long call and getting later and later for work, and then she asked about side effects and I said just hair loss, but even noticable. And she asked if I would like to be transferred to a pharmacist that can help me cope with side effects. Thought I would lose my mind! Well I'm glad to know it's not collections, because I was appealing a rekection for the radiation I had and they finally did pay the bill, so I was a bit irritated that they were still calling.
Artist, did they take you off ibrance and Letrozole because of the liver or was it because there was also progression? I agree with you, she needs to be more clear with her explanation. My onc takes his good old time changing treatments. If markers go up, he waits for the next one in 3 months. If it goes up again we do scans, then if it shows something he will change it. Then by the time we got ins approval and all the nonsense phone calls it was 3 weeks after that that I started. The day before I started I had an appt to see how the new TX was going lol! Of courrse I cancelled. He writes one month on the checkout paper as if I'm starting the new meds that day. Anyway, I was just thinking if the first combo was stopped due to the liver and not progression that does not sound like a failure to me. I too would want to narrow it down. Sorry I have not paid attention to why you went off that combo.
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I don't know much about Ibrance, but in the literature that I received from them they pair Ibrance with tamoxifen, anastrozole, letrozole, exemestane, fulvestrant, chemotherapy or everolimus & exemestane. This is supposedly standard therapy, the only change in this trial is dosage of Ibrance.
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Zills what about radiating it? Not a choice? And were you surprised when you got the lesions in the liver? How long did you have it on the bones only? D had it for a few yrs, this is quite a new thing! We were hoping with the new concoction of 4 different drugs, this would NOT happen.
Dani is on Xgeva. She is due to go to dentist also, there is some pain that has to be checked out. She was only taking it every 6 wks, so maybe he'd be willing to do some work, or he will decide she has to wait longer.
Z to understand what you mentioned to Gracie, is that the Ibr/Letr has as much to do with ER status as Her2 status? So it's not such a stretch for Dani having Her2+ but ER+PR(+weak 1%) but taking Ibr/Letr? I thought Onco was giving this stuff off label.
Artists that's so disappointing. I think you have the same frustration as we do with Onco. He is a nice guy. Caring. But his thought process is extremely long, and what he thinks today is not the same tomorrow. He just does not seem sure of himself. Def a problem for us. What does slight progression in liver mean? More lesions? Larger? And no talk of radiating it? I am thinking even for Dani, why not take care of these things before they multiply? So sorry for the anxiety you are going through.
We are awaiting for a call from a large Cancer Center, we have a good recommendation, even if they call in the moring they r ready to see us, we are outa here. I am definitely looking forward to a person that KNOWS that whatever needs to be done NEEDS to be done. The stress of not being sure and second guessing it's just too much.
D is on Ibrance 100 21 days. then she wait 8 days and then she's back on it. She cut down the amount of BT they were taking, now she goes every 3 wks. She does not wanna be poked all the time. Her latest scans showing the spots on the liver, could be Ibrance? Or is the Tykerb? Or just some crazy fate?
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Dee - I hadn't heard of Astragalus until you mentioned it. It does not appear on the list of supplements my complementary onc (CO) recommends (this is a long list that goes beyond what he has prescribed specifically for me). Dr. Weil, however, loves the stuff.
L-Glutamine is on the list tools in his toolbox, but but my CO has not prescribed it for me.
He has a bunch of ERPR+ breast cancer patients on Ibrance. So that is how one experienced CO approaches this diagnosis generally...
I feel that as long as things are working, I am going to stick with what I am doing. That goes equally for the standard of care and the complementary medicines. Right now, I tweak things only to manage side effects and waiting for my next scan. I am certainly taking enough supplements.
I continue to study options I can get into if things stop going well. Astragalus is now on the list of things to look into should that happen ... I am happy knowing that there are abundant options. Thank you for pointing this out.
Artist - I believe that you will feel at peace with your treatment when you are on the right protocol. It's not necessarily an intellectual rational thing. If you feel confused and uneasy, keep pulling the thread and asking questions until you feel comfortable. I have a strong feeling you are on to something. We're all interested in how your search goes.
Dee - I would say that the same thing goes for Astragalus and L-Glutamine. If these supplements keep coming up in conversation, you find yourself interested in the research and you feel like you want these treatments, you probably should take the stuff. If it's a bunch of people evangelizing a supplement because they want to validate their own decisions, you'll know that too. Just ask yourself in a quiet moment what is best for you.
We are so fortunate to have so many options, but we need to use both our minds and our gut to figure which option is for us at any given time.
>Z<
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Hope all are doing well today. I don't post much but I get so much out of reading what y'all post. (I am a newbie and don't have anything to contribute other than encouragement.)
Question: Why do the oncs test your magnesium level?
Another question: I have developed macrocytic anemia. Getting TSH, folate and b-12 tested tomorrow. Has anyone else had elevated MCV levels? I may have had it before, but I have new onc who actually fully shares results of all my tests with me. (Love that!)
Hope y'all have a wonderful Tuesday.
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Tamoxifen did good forabout 18 months after sx, chemo and rads. Found bones in the fall and started xgeva monthly. Also had ovaries removed and did arimidex. Multiple small Liver spots in Jan:( and started Ibrance and Femera. Went back to arimidex in Feb. Clear liver in April and healing bones after 3 rounds. However he won't budge on dropping the dose (100) or stopping it unless it's no longer working. I don't think I could do without a week break.
Had just got my head wrapped around bones and was shocked with liver. I've never had any symptoms except fatigue. And that was contributed to a new baby (who is now 4) All other symptoms are side effects of the meds
Good luck with your second opinion. My mo retired so it was like getting a second opinion when the bones and then liver was found. I really like my new guy. He recently graduated and is current in all new things and very accessible plus I get scanned and see him same day. Before I had to wait a week and go thru the nurses. I email my mo directly. He's even called me on a weekend to discuss treatments.
Radiation of liver or bones was never discussed. No pain from bones. Probably too many spots and too early for liver rads. Ibrance is working so just need to manage the fatigue better. Exercise, hydrate, don't beat myself up about dirty house and either make meals ahead of time, let people help or eat cereal or sandwiches.
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Has anyone had dizzy spells while on Ibrance? The last couple of days, I feel lightheaded....like I'm about to faint. I'm thinking this is due to low red blood cells. Is there anything I should be taking to increase these levels?
Any input would be appreciated.
Thanks,
Robin
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Robin, funny (well not really funny, but you know what I mean...) that you should ask that question because I, too, have been light headed yesterday and today -- days 31 & 32 of my Ibrance cycle. And, yes, I think it's from low RBCs because I've also had some weird bleeding. I was told @ UCLA not to do anything to try to counteract low counts, but my ND thinks bone broth might be a way to help with basically a food (vs. a supplement). I haven't tried it yet, but I think others here have mentioned it in the past. We're in the extreme heat belt -- 124 here yesterday -- so I can tell you that making soup absolutely does not appeal! But I might swing by Whole Foods later today and see what's available pre-packaged.
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Hi everyone,
I started taking B12 (with MO clearance) in May and my RBC numbers have been better. Still low, but good for me. Light headedness is a known symptom of B12deficency. I also started on zinc and selenium to boost the immune system. I do feel it is helping
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Interesting. You can get your B Vitamin levels tested, that is a very good idea.
I don't get light headed but I do get tired and spaced out. Day 17 today. Dragged myself to a yoga class and then took a nap. Feeling much better.
>Z<
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Thanks Deanna and Iwrite for your input. I have some B12 on hand and I will start taking. Soup in the hot weather does not sound appealing but we have to do what helps. This is day 21 on 6th cycle so will be looking forward to week off.
Deanna...Did your ND say that you should not try taking iron? About 5 years ago, I was severely anemic (could barely walk from the dizziness and vomiting) due to heavy periods and they wanted to do a blood transfusion..but I didn't want to do that. So the Dr. at the time said Iron supplements. But this all happened before BC. I just don't want to end up in that shape again!
Guess if I don't feel better tomorrow..I will call my onco.
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Iron supplements are not generally recommended for cancer patients. Iron is one of the things that tumors seem to hoard, suggesting it promotes the growth of cancer. I've been eating dried mulberries, forgetting that they are high in iron. My bloodwork came back with high iron levels and I got a slap on the wrist from my complementary oncologist. No more snacking on dried mulberries
.>Z<
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