Ibrance (Palbociclib)
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Hi Everyone. I'm new to this thread. My onc wants to put me on Femara/Ibrance. I'm so nervous about the side effects. What are the worse ones anyone has had?
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Hi Yellowtweety,
I'm sure that others will weigh in -- I'm currently in cycle 4 of Ibrance/Faslodex, so not that long. I was on Femara by itself for 13 years. The side effects from that drug for me were aches and pains, tendonitis in both of my feet, joint pain and joint issues, some sleep issues.
Faslodex has been a much gentler drug for me. I've had literally no side effects from faslodex (maybe because for me it's been much better than femur). Because I started it over a month before Ibrance, I think I can isolate the Ibrance issues. For me, it's bad constipation with occasional diarrhea or loose stools (at weird times). I also have extreme nasal passage issues -- very dry at night, when I get up in the morning, all sorts of gunk comes out (sorry for being so graphic). Also, I get extremely tired, also not in a pattern, and not every day. I've also seen an increase in leg cramps, especially at night and especially if I've walked a lot during the day.
Hope that helps.
Bev
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Hello all. VERY behind due to a recent move.
Regarding HER2- metastasis. Mine were only to central chest lymph nodes and lung. No bones anywhere--knock on wood! It remains a wonky progression to me, since I have no activity in the axillary which is where my initial tumor drained.
Massive battle with insurance since DH retired. It's been crushing. JUST got meds approved a few days before they needed ordered. What a stupid system.
Sending positive thoughts to everyone!
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Bevjen Magnesium works great for leg cramps. I had them nightly (before Cancer) and I still take it. 200mg in am and 200mg before bedtime. I've also "heard" tonic water works good. (Unfortunately, the gin must be left out. lol)
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Hello Yellowtweety, sorry you have to be here but welcome to our group. You will find a variety of side effects depending on any other issues you may already have as others will chime in. Mine are actually not too severe, mainly fatigue and thinning hair. I do have GERD issues which are handled with Omeprazole. I also have itchiness that comes and goes and I tend towards diarrhea at the end of my 21 days. I am sure you are told to drink lots of water and take the Ibrance with a full meal at the same time everyday. I am sure the others will also tell you not to be too afraid or nervous as this drug combo is very manageable for most of us. I have been on 125 mg Ibrance for 44 cycles with good results--mainly my extensive bone and liver mets are gone or inactive except for a couple of new ones that popped up on my last scan but are too small to accurately measure or biopsy. So my onc calls it stable. Best of wishes. Feel free to ask any questions.
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Welcome Yellowtweet. Every new treatment is very scary for us all, so we get it. I’ve been on Ibrance/ Femara ( Letrozole) for a year and a half now. Side effects do come and go, but they are for me very tolerable. Expect joint stiffness in the mornings especially and perhaps some pins and needles in hands and feet... that’s the Letrozole. iBrance might make you tired (but not exhausted) and fairly loose bowels, which are, for me, manageable. Night sweats are a given, but cool nightwear, sheets and plenty of air circulating will help!
My nurse team tell me most people tolerate this combo pretty well..the mantra ‘we’re all different’ applies (although I have reached the point where I could slap any onewho is not in this world telling me that!).
Best advice, try and relax, take time for yourself and breathe. The nearer you get to that the easier it will be on both you, your family / loved ones and your team
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Welcome Yellowtweet. I get tired towards the end of the 21 days and on into my week off. I also get mouth sores which I finally found something to manage those. My hair has thinned. Other than that it hasn't been too bad.
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welcome Yellowtweet - so sorry you are here but this is a great medicine combo. I as diagnosed de novo so this is the first line of treatment for me.
Our fav member here PatGMc dubbed the term “The Ibrance Dance.” I find it incredibly fitting as the side effects can change month to month.
A rundown of my symptoms have included (and not always repeated);
Manageable nausea (with anti-nausea meds and/or ginger), fatigue, joint pain, hot flashes, insomnia, diarrhea, gas, indigestion/acid reflux, mouth sores (some real bad ones but Magic Mouthwash became my best friend, and now I get like one or two small ones a month!), random itchy bumps that come and go, watery eyes in the winter, runny nose, sneezing, hmm I think that’s everything?
Just know, that all of this has been quite manageable - the worst was one bad mouth sore as far as discomfort.
I did not hesitate to take a Valium when I needed one (for about the first 6 months after my diagnosis) and now am on lexapro which has helped tremendously with the hot flashes and depression/anxiety around this diagnosis. It also seems to have calmed down my pain receptors, so I don’t feel so much pain! Amazing! (Pain and depression go hand in hand, so makes sense!).
PleSe feel free to keep asking questions and reaching out!
It was my 40th bday when I was diagnosed and now I have been on Ibrance and letrozole about 32 cycles, at 100mg. Doing relatively great!!!! Lots can get overwhelming but these boards Filled with incredible smart amazing people has helped me to no end!
Hugs,
Phill
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Yellowtweet welcome and so sorry you're here. My wife was diagnosed in April/May and started IBRANCE/Letrozole in June. She just started cycle #5. Her SEs haven't been that bad: fatigue, mouth growths (she doesn't call them sores because, well, they're not sore), and some joint pain. Overall uite manageable
When we first started the dance, it was overwhelming and quite scary (it's still a little scary) but the folks in this thread have been soooooo helpful: from SE info to scan guidance to travel advice, etc. I feel like these ladies have held our hand as we began our IBRANCE dance. Feel free to ask ANYTHING and there's probably somebody here who can help you. Good luck on this journey. I know it sucks.
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Ok, need some advise from the group.
My TM's have slowly, steadily increased over the last 4 months. Nothing major. But my MO has mentioned the increase and agreed it could be nothing or could be something. I had 3 month CT on Monday. Today (Thursday) still nothing in patient portal and no phone call. Appt scheduled with MO for next Monday. I was getting very anxious and want to have questions ready for MO, so I went to Medical Records and signed for a copy of the typed report.
"Slight increase in size of known left hepatic lobe metastatic lesion" . July's CT measured 7mm X 6mm and now 9mm X 11mm. The thing is last Oct 2018 CT states 11mm X 8mm.
I always thought the measurements were computer driven, but was told once that each radiologist that reads the CT's measures the lesions and so there can be differences in the math based on the person reading the CT. Human factor.
So, do you think this is considered progression and would warrant change in treatment? Or should we keep things the same (Ibrance and Letrozole) and see next CT in 3 months? I don't want to move from I/L if it is really still working.
Thoughts.....
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Hi Candy,
I think the tumor has to increase by a certain % before you need to move on. I thought it was 20%. Jaycee had posted it awhile back.I
Jaycee is that correct?
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I'm confused about something that maybe you ladies can help me with. One of my wife's CT scans in June indicated a complex cyst on her kidney. The radiologist recommended she see a urologist in the next 3-6 month. No urgency, right? Her oncologist couldn't be less concerned about this telling us "you can see a urologist if you want." OK, good.
So we see a urologist who was also unconcerned about it but said "If it will give you piece of mind, we can do an ultrasound, which is much shorter than an MRI to get a better idea on what this thing is". He seemed content on doing nothing, but we did the ultrasound just to be safe. So now his office has called and said we need to do an MRI to get a better idea of what this thing really is. So now we've gone from "do whatever you want" (including nothing) to we definitely need an MRI on this thing.
It's hard not to be concerned. Anyone have any insight into something like this?
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For peace of mind, I'd probably do the MRI. It may give a clearer picture but, then again, it may not. I would probably probe the urologist a bit more about the urgency of the situation. On my last set of scans, I had something pop up -- two cysts at either end of my pancreas. My MO hasn't said anything, nor has the interventional radiologist who is also treating me -- but I'm freaked out by it. So I should follow my own advice and check it out!
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Oh she's definitely doing the MRI now BevJen. I was hesitant to use the phrase "freaked out about it", but you obviously know what we're going through. My wife does have a call into the urologist but he hasn't called back yet. I'm not sure these guys realize how concerned Stage IV patients are about any change in their condition or requirements for new scans.
I hope for the best foryour cysts on your pancreas!
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I think that all of this is the result of the compartmentalization of medical specialties. This would be laughable if it wasn't so serious for those of us caught in "the system." Each doctor knows their own little piece of the world, and they don't seem to understand that we are the sum of our parts and need someone to consider everything that's going on and its interrelationship. I find the whole thing quite exhausting. And when you're stage 4, you just want someone to have your back.
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hello ladies, i finally am on my treatment plan after a 5 month delay including failed chemical shutdown after multiple tries, surgeon hunting, consult waiting, surgery date waiting, ovary removal recovery etc...it’s been really really hard waiting. The delays only amplified the stress and fear associated with a Stage 4 diagnosis...but here I am ready to start treatment at this stage of the game, FINALLY, woo hoo! I started my 1st cycle of Ibrance on Tuesday the 22nd. I was able to start Aromasin a couple days after my ovary removal on Oct 2nd but needed to wait on the Ibrance to heal a bit. Officially been on the combo a few days. I realized I needed to reach out for help getting through this, I have my chemo group for when I was Stage 2 and a couple stage 4 ladies, but I need more support. I haven’t posted in this section but sparingly for a variety of reasons mostly denial I’m in this place now..still kinda in shock...even having been diagnosed in May..it all happened so fast! One minute Stage 2, the next I’m Stage 4! I’ve had to learn to deal with life and it’s challenges myself a lot of my life. Even with a very supportive husband, I desire to not overwhelm him and try to solve my own problems. But I’ve learned I cannot carry some burdens alone and have allowed him to help me. I have to learn to let others help me too. I stepped out in faith as it were connecting to a chemo group in the beginning, best decision I ever made, even now they are wonderful and supportive of me. Stepping out again...I need more Stage 4 ladies in mylife that “Get it”. Nice to meet you all, I’ve been following in silence but feel it’s time to introduce myself now that I’m actively on Ibrance. -Rabbit
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Rabbit- Sounds like you have a lot to deal with the last 5 months. Officially welcoming you to the Ibrance Dance. Hope you will be an active participant here now. This place is wonderful with great, strong, smart ladies (and men).
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Hi all. This forum is so helpful and encouraging ☺️I’m wondering if anyone hasbeen prescribed meds to increase WBC count following Ibrance 125 mg cycle. Mine went down way low and holding out on next cycle until they come up again. I’m also on Letrozole. Dosage will prob be reduced to 100mg.
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Alicat3- My MO has never prescribed anything to increase WBC/ANC, such as Neulasta, etc. I started on the 125mg dose of Ibrance but when my counts dropped (went as low as ANC 400) we tweaked the dosing schedule to on 5 days off 2 days and also held med for a couple of weeks. After some time of messing with the 125mg dose and still having low ANC counts, we changed to 75mg and have been there ever since. From what I have seen on this Thread, most just hold med or lower dose not give meds to increase WBC's. Hope this helps.
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I started cycle 42 last night, all except the first at 75 mg. I have also taken at least 5 cycles off. That's three and a half years. I have zero side effects. And except for my inching up in size lung nodule, I am stable. Pleural effusion gone. Bone mets gone. What was the question?
Got back from trip to CA to see DS and wife. Spent 15 hours in the car on the last day. Ended up with a UTI. Went to my PCP practice (medical resident training group) and found the most wonderful nurse practitioner. She is part of a palliative care group that I will be seeing next week. All five of them together for at least an hour. This is the definition of serendipity. I can't wait.
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Jaycee, so wonderful to read your good news. You are the model for how it should all work! I have been considering a dose reduction because I am really struggling with heavy fatigue but I'm waiting to see if it is a result of this bad virus since I am still coughing. i see my onc next month.
Rabbit, we will gladly be your sounding board to help you carry some of your burdens. Do not try this alone if you can help it. It sounds like we are alike in that it is difficult for me to allow others to help me. Even after all this time I still stubbornly hold on to doing some things alone when I should be seeking help. I get it.
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Jaycee- Good to hear from you. Haven't seen you post in a while. Maybe I am just not reading the Threads you post on. Sorry for the UTI. Not fun. But glad you found a good NP with Palliative Care. Maybe a blessing in disguise.
Simone posted yesterday about you saying that a tumor has to increase by a certain percentage before labeled as progression. I have had a slight increase in my liver tumor. I posted about it here yesterday since Ibrance is my first line therapy and I posted about it in the Liver Met Thread also. See my MO Monday to discuss it. But I don't want to move from Ibrance yet if it is still considered working for me.
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Sorry Candy. I forgot about that question and Simone's post. I saw it. I remembered it for about two minutes. That 20% increase was what my MO said once when we were discussing just your issue. When do we change treatments? But 20% of what? Size? SUV values? 20% from when the tumor was first seen or from the last imaging? Who knows? Not me. My goal in life is to stay on Ibrance. My small changes will not deter me from my goal. I will probably refuse most future treatment offerings.
If people are seeing a certain contradiction in my previous post, I see it, too. Why, when I am doing so well, am I looking at palliative care? First, palliative care is not hospice. It does not mean you are near the end. It is for symptom management. I wrote the following to a good friend to try to explain:
"The UTI symptoms completely went away, even before I got to the PCP office. Here's my theory. I think I have a mild UTI ALL THE TIME. I think I have mild yeast ALL THE TIME. I think I have mild BV ALL THE TIME. All from vaginal dryness. All from the AI. I will present this theory to my new palliative care team (I always wanted to have a team) along with the mile-long list I am making of other items my doctors have always brushed off. Those things you just mention in passing, hoping they are paying attention. Those things that seem to bounce off of them like they are Teflon. Their expressions don't change and they don't say anything so you wonder if they even heard you. But you know they did. And then there are all the things I put on the questionnaire pre-MO appt. They claim someone looks at that paper. No one ever reacts no matter what I write (sometimes in all caps)."
That's my plan.
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Jaycee- Good plan to stay on Ibrance. I want to, for now.
I agree Palliative Care is not Hospice. I saw a Palliative Care doc when first diagnosed. Loved him. Discussed side effects of meds, fatigue, etc. But, of course, he moved to a larger city--Pheonix I think. We are po dunk Southern Illinois. The good ones always leave. And, of course, the hospital didn't replace him. You are lucky to have a "team" to help with issues you have along the way in this fight/journey/whatever you want to call this. I envy you and others with a "team". I have a MO and that is all.
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Candy, don't get me wrong. I don't have a team. Just MO. Like I said, I always wanted to have a team. This palliative group is my first team which is why I am so excited. I may have said this before but the only time any of my doctors have spoken to each other is when my former MO called my therapist to find out just how crazy I am.
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Jaycee, yay for finally having a team, and hoping they make your life easier going forward. Dealing with cancer sucks under the best of circumstances, and everyone should have people who could jump in to take care of all the "extras" we tend to get from the gift that keeps on giving. Hopefully the palliative team is a step in that right direction.
Candy, the 20% increase that the RECIST standard considers progression is a 20% increase in the sum of the tumor dimensions (Length+width). For some reason they treat tumors as two-dimensional structures, instead of tri-dimensional. However, they don't apply the criteria to tumors where the longest dimension is less than 20mm, most likely because a couple of mm measurement error in small tumors would be read as progression when it's not necessarily the case - your case seems to be fitting in that category. I'm obviously not in your shoes, and it's easy to speculate from the sidelines, but I would be tempted to stay on Ibrance for a couple more months and re-scan, just to make sure. I apologize for not remembering, but did you at any point discuss with your MO the possibility of localized treatment for that liver met? If it's the only thing progressing, and there aren't any new ones popping up, it might be worth trying to zap it somehow it and staying on Ibrance.
Hoping you get some good and hopeful answers soon.
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Thanks Piggy for the info. I am information gathering now. Always learning with cancer, you know. So then lets say, for example, a person's tumor measures 3cm X 4cm. That way it would be over the 20mm (2cm). Would you then measure 20% increase as 3.6cm X 4.8cm ?? 20% of 3 and 20% of 4.
My previous MO and current MO has never mentioned localized treatment. Even when I was first diagnosed with a 8 centimeter liver tumor !!!!! Probably since we do not do localized therapy's such as Y90 in our rural area. But they did not even offer for me to look into the option elsewhere.
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Candy,
I do not think that localized treatment would be used for a liver tumor that is 8 cm, but aside from that, so far it's been my experience that MOs don't really get into the business of recommending localized treatment. They all push for systemic treatment, because MOs treat breast cancer as a systemic disease, with medication. You will most likely have to bring it up to them. I would suggest that you go onto the website of some place like Memorial Sloan Kettering and nose around, and you will be able to gain some info about localized treatments done by interventional radiologists such as Y90, microwave ablation, cryoablation, chemoembolization, or liver surgery (this last one done by a surgeon, not an IR), and also radiation treatment done by radiation oncologists such as SBRT. Note that these treatments are not necessarily curative, but they can reduce tumor load, from what I understand. For more information, you should look around on the thread that discusses Y90 and other treatments.
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Alicat3 My Onc explained to me that when your WBC is below a specific amount for two or three consecutive times then they will prescribe the neulasta and re check your blood. As others have mentioned the dosage for Ibrance can be reduced with efficacy up to 75mg.
Rabbit welcome and I hope you'll find the assistance you need.
Tanya
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Candy, for your example of a 3x4 cm tumor I think the 20% of the sum works like this: 3+4=7. 20% of 7 is 1.4. So any growth that would bring the sum over 8.4 would be considered progression. Your example of 3.6x4.8 is a possibility, and probably the most likely (tumor grows about the same in both dimensions), but technically a 3x5.4 would also be progression. This is just my understanding, and I'm not a doctor.
Regarding the local options, it might be worth bringing it up, even if the MO doesn't. And if you don't get a satisfactory answer as to why this wouldn't be a viable option, maybe a second opinion at one of the major centers would be good. The localized liver treatments thread should have some good ideas. I know that chasing down someone for a second opinion is probably not something you're looking forward to doing. And if you don't want to, that's OK - there's only so much you can deal with at one time. It shouldn't be this hard. Access to life-extending treatments shouldn't depend on where we live. Shouldn't depend on how pushy we are willing to be.
Gentle hugs.
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