Ibrance (Palbociclib)
Comments
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CS - so thrilled to hear the response you've had has been so good. I was also diagnosed with Stave IV (out of the gate) on April 7th 2016. I got my first scan this morning. I meet with my oncologist Wednesday morning to go over results. The waiting is so hard. I too have NO symptoms (still somewhat in shock I'm dealing with this)... mainly hair loss and hot flashes. Otherwise, I feel fortunate I am tolerating the treatment well. I must say I do get so HAPPY when I hear of others doing well on ibrance. The potential to be on this for years is very much there and that makes me so grateful.
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eelder - I know the waiting is horrible. Where is your cancer? I'm not finding many who have where I do or at least ILC so we can track the progress. I'm currently in my last week of my 3rd cycle. Side effects are minimal and I'm tolerating the meds well. No blood count issues yet. I'm on Ibrance 100 mg, 21 days with letrozole everyday.
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Tumor in right breast - 2 cm. Node involvement. 3 lesions on my liver. HAD NO CLUE this was happening to my body. Unreal.
HOWEVER.... my oncologist just called!!! My right breast tumor is shrinking. Nodes no longer affected. One liver lesion GONE. The other two have shrunk by almost 50 % and the "hotness" has too. I am relieved and amazed. I've completed 3 cycles of ibrance/letrozole.
Off to celebrate with my husband with a glass of pinot and a nice dinner!
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Cynthia! It's working that's what matters now! My situation was the opposite of you. They found a lytic lesion in my pelvic area and tore my breasts apart looking for a new recurrence because pathology was not Er pos. They said it's like a 2% chance for it not be unless I had new primary so we did the let/Ibrance and I have been doing it since Oct.
I'm just happy this is working for you too! Lobular is sneaky!!
Hugs
Carol
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Yay eelder. that is a fantastic response! so glad to hear the protocol is working. enjoy your pinot!
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eelder so happy for you, let's keep the winning numbers.
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Eelder,Great news on your scans! Enjoy that Pinot. I got the ok to have an occasional glass of wine. I get bloodwork, Xgeva and Faslodex on Thursday when I see my MO. No scans until September, but my CA27-29 dropped from a high of 182 to 159, now 133 at last count. Started st 146 at my diagnosis in March.Maybe I should open my Pinot too!
Loving these Ibrance responses, although I seem to be slow to the party. Only on week 1 of my 5th cycle.
Debie
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Eelder- great news!!! Do the happy dance!!!!
Babs
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Open the pinot! We need to celebrate the little successes when we can. Thanks all.
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CS, I'm sorry you find yourself here but these are a great bunch of women who will answer your questions if they can. I also have mets to the lung and lymph node involvement on the same side as the original cancer. I'm curious as to why if your counts are ok, you are only on 100mg. of IBrance and not the usual starting dose of 125 mg?
Yea eelder, happy news! We all love to hear the good news. I've also had a good response in March after 3 cycles, onc doesn't want to do another scan until Sept. Sure hope I'm NED by then, can't hurt to hope.
Z, hope you've enjoyed your vacation. If changing the timing of letrozole doesn't help, check the generic brand you are using. Some women on the hormone therapy thread talk about different brands being easier to tolerate. Of course, good luck trying to change the brand, I think they just send whatever is in the warehouse.
Carol, hope you're enjoying vacation too. Sorry the heat and humidity are getting to you. I'm a little worried about that when go to the beach in August. I'll still enjoy being with the family though since a few of them live far away and we don't get to see them very often.
Hope everyone sleeps well tonight.
Faith (in the future)
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eelder - Congratulations on the wonderful news! That's fantastic!
Carol - You are so right that lobular is sneaky! The doc that did my surgery said most of it looked like mold growing so no wonder nothing shows on the scans. I'm so fortunate that this drug was available for me to take because it looks like it may be perfect for me for a while I hope.
Faith-840 - You know, that's what my MO prescribed and I was in such shock at the time I didn't question it. I will ask him at my next appointment why he choose the 100mg.
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Elder- great news !! I'm so happy!!
Hugs Caro
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Great news Eelder!
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So after my week off of 100 mg my liver enzymes are going back down. So Ibrance is definitely the culprit. My ca-15 TM's also rose a bit too though. Will now try the 75 mg and hope my enzymes stay well. Have a new scan in August and hope the TM's don't indicate that Arimidex is not working....Here goes the roller coaster again just as my stomach stopped the "dropping".
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artist, good luck on the 75mg. dose. Hoping that does the trick for you and your scans in August show great results! From reading the posts here, I know that some ladies are doing well and having great success on the 75 mg. pills. Always wishing you the best! Stay calm.
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Thanks Hummingbird! To stay calm I went shopping! Haven't been in a long time and it keeps my mind distracted. I needed a dress for a summer wedding on Saturday. Tomorrow I get my teeth cleaned and my hair cut! At least I'll look fairly decent on Saturday.....LOL!
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Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads.
Appointment went well. Regimen, Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure.Was a bit of a anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.
Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive. Still have to see Rad Onco this Friday. Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .
She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic).Otherwise she does not think there is much to get to TP53.
Off to Geneticist we went, she will do the BT when she comes in for the infusion. Also of course the newer mutations, like PALB2.
Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.
She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.
Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.
Check on you tomorrow! Great night to everyone. ( I feel so bad when I'll leave this thread with you guys, but I'll be checking, you guys were just great!).
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momatt, I can't believe all that you and Dani are going through. My heart goes out to you both. Sending lots of prayers for healing and for strength to deal with this. I know it's really hard to keep up and read all the threads you feel necessary to keep you informed but when you have time, please come back and keep us updated, everyone here cares for you, Dani and your family.
Hugs, Faith (in the future)
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Art- I started Ibrance Oct and I was able to do 5 cycles at 125, then 2 cycles at 100 and both 125 and 100 cycles were interrupted with added rebound time. I was able to do one cycle at 75 but next cycle at 75 could only be for 2 weeks. So I am on a 2 week on 2 week off cycle. My numbers tank but liver numbers are ok except for a slightly elevated alk phos which think has to do with bones.
I have scans in a month to see what therapist 3 months has done. My TM have gone up or stayed the same since I've been on Ibrance but I have shown stable with area of healing. Never have they gone down. My lowest 27-29 was 42 and that was before I even started treatment. I also feel like I have a hard time with the xgeva shot. I dread the shot because my magnesium and calcium get so messed up right after.
Hugs Carol0 -
Artist, I hope the 75 dosage works for you. I am on 75mg and the cancer is responding so this dosage does work In treating the cancer. I hope this does the trick in keeping your liver enzymes down.
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Elder- congratulations! Great news!
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Thanks so much Carol and Singlemom, I really needed a few words of encouragement today. I am so up and down lately between optimism/dark clouds. Last night I decided to take out some of the books I've purchased and reeducate myself as to how I can help myself with diet, supplements and exercise. I got hold of a book that was so negative on conventional treatment and kept repeating "the grim statistics" and I found myself just sinking to a new low. Time to throw that book out! I need to find an even keel for ahwile. My TM's are in the 200 range right now. Hope it's not indicative of progression. Damn enzymes! I start tomorrow on 75 mg so we'll see. Hopefully it will all turn around. Have a scan in August and worry about that as well since it will be my fourth in a year. Massive radiation......
Tomorrow is my one year Cancerversary. I need to stay upbeat for all my good old friends who will be in town for their daughters wedding. Although seeing a girl the same age as my daughter, who is like another daughter, getting married will definitely make me cry........
Carol I haven't had to do the Xgeva yet as I am not on Femara, but have heard it is not fun. Hope it is at least doing what it is supposed to do! Singlemom, I am so glad to hear Ibrance is doing the trick for you! Thanks again for the uplift ladies!
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Art I know how you feel. I'm up one day down the next. Xgeva helps the bones and many are on it with falsodex and Ibrance. Deanna for one. I think Z posted something on how this works with interfering with cancer cells- lol I know I just explained that wrong but someone will chime in and help with that explanation! We both have scans in August.
Hugs Carol
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Artist, have you seen a GI doctor specialized in liver? When I went thru chemo almost 6 year ago, my liver ALT & AST went sky high. Went to see a GI doctor and found out the hepatitis B I had thirty years ago and thought was "cured" was re-activated by chemo. The doctor put me on some meds and I have all normal ALT & AST since then. I know your situation may be different, but GI doctor will have some way to heal the liver.
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Artist, I don't think you necessarily need to be on an A/I to benefit from Xgeva when you have bone mets. Like the bisphosphonates, Xgeva may actually help rebuild our bones from mbc damage. It's also helped me tremendously with pain reduction. It might be worth asking your onc about. I'm getting it with Faslodex.
And yes -- absolutely throw out anything that brings you down, especially grim, outdated stats. I recently read in an oncology publication that, "Two-thirds of Americans now survive at least five years after a cancer diagnosis, up from half in 1990." That's HUGE! The article went on to attribute the increased survival to modern cancer drugs, and with so many newer drugs in our arsenals, I wouldn't be surprised if that stat was even stronger for mbc. Maybe read Kelly Turner's Radical Remission for a more upbeat point of view and ideas on complementary stuff.
One more thought on your liver #s... I have been using a detox tea that contains a variety of liver cleansing roots and herbs. I'm not a doctor, but I've wondered when I've seen your concern about liver #s if something like that might be helpful to you, too. I get it at an herb & tea store. I think it's their own blend, but I can tell you what's in it if you're interested.
Congrats on your one year cancerversary! May it be the first of many more, as we all hope & pray for a cure or at least new and better drugs that will give us NED for many years!
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I saw my oncologist yesterday. It was good to go through my PET results. Ibrance is working for me. Grateful.
What we also discussed was surgery and I bring this up only because it was a topic I initiated about two weeks ago. She is recommending I have a lumpectomy. This is in-line with UCSF and their thinking based on my case. I told her I thought surgery was sort of moot once you were Stage IV and she said in many cases, yes. But in many others, depending on the circumstances, it's not moot at all and should be considered. Surgery would be done in order to prevent future problems from arising within the breast and if prognosis is good then it warrants this.
I am going to get scanned again in 3-4 months. We'll either do surgery after that OR after another 3 months of treatment + scan. Hard to predict what the scan will reveal next time so naturally surgery is hard to predict. Anyways, she wants me to have a lumpectomy followed by radiation. Her rationale behind this is I appear to be responding well. One liver met is already gone and two others are nearly halfway there. In other words, I'm under very good control in her opinion. By eradicating my breast tumor/cancer cells as much as possible we are in theory preventing a recurrence in the breast. If I had a recurrence I could experience a lot of unpleasant side effects and issues and she doesn't want that given that the metastatic side of my case is currently going fine. She then went on to say that when I stop responding to ibrance (could be years... could not... oh the uncertainty) her thinking TODAY is to enroll me in an immunotherapy trial at UCSF. She also said though that they're coming out with lots of new things and so when the time comes for me to go to a second line of treatment there might be something else to consider.
Anyways, it seems as though many here were under the impression that surgery wasn't a good idea. A part of me still wonders about that, but after talking to my oncologist I'm understanding better why you WOULD do surgery in some metastatic cases. I asked about recovery and all that and she feels I will recover well and quickly from a lumpectomy. Do we know for sure? No, of course not, but I will be meeting with my breast surgeon next week to discuss in more detail.
Thought this was worth bringing up for anyone in a similar situation to mine. Treating this is more an art and not a science sometimes and that can be challenging. Sending love to all.
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I also agree to STOP reading anything that gets you down. As scary as what we all have is, we DO have MANY options and we need to remember that and remind each other about this. Upon my diagnosis my oncologist said to stay away from the internet because the statistics were so out of date. Everyone's case is different and there are MANY out there living long lives with Stage IV BC. Ibrance alone is so new.... and it works so well for many. And there are more drugs like ibrance coming out soon. If immunotherapy starts to show promise my oncologist believes that could be the cure for us. We're not there yet, but it's in the works.... they're working on it.
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Hi everyone,
Just wanted to weigh in on some recent topics here...I'm now at the 75 mg level on Ibrance (2 months) and am experiencing fewer side effects and no longer need mid month blood tests. Less fatigue has been great! Scans in September to see if it is as effective as the higher doses I was taking from November - May. Fingers crossed.
So far no intense SEs from Xgeva and the shots haven't been painful or problematic. I'm on a schedule of every three months after getting them monthly for the first six months of treatment. Any pain appears to be from narrowed passageways for the nerves caused by healing of the multiple spinal mets and the related sclerotic bone. Doing some PT for the back pain. Still only taking OTC ibuprofen at low levels for pain management. Feeling very fortunate so far, but have to reset every morning to the "Living Fully" setting instead of the "Oh s..t I have cancer" setting.
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Hi Artist - rooting for you on 75! Momall - rooting for you and Dani too! Hi Stephanie! I just got back from round #8 of fas shots at UCLA. Good numbers - my WBC actually went up. wow I start #100 tonight since Cigna (new insurance at work) finally gave approval after initially rejecting me despite previous 7 rounds @125mg with UHC and responding well. Go figure big pharma. So ladies - next Wed. I leave for my Spain/Portugal cruise with a vengeance. Take that cancer. I have been walking daily (give or take lazy Sundays) lost another 5 lbs. And plan to eat and drink port wine throughout my trip. For the flight over on Iberia I will take one day off. Except for hair loss ("cured" by halo hair), fatigue, monthly lung drain and the occasional mouth sore, I'm doing ok. Still working full time and hoping this good response continues as next PET will be August 18th after my return. Ole~
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lalady- have a marvelous trip. So happy for you!!!
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