Ibrance (Palbociclib)
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Hi ladies, I am new to this thread. I have mets to my abdomen. I woke up several months ago with horrific flank pain on right side. Ct showed what appears to be an enlarged node pushing on the ureter collapsing it. They tried a stint but it failed and had to put in a naphostomy bag.i don't mind it so much now. Then a few weeks later started with stomach issues, pain, nausea, constipation, belching and bloating. Doc kept saying I was constipated. Finally DH brought me to ER. CT showed two blockages. They pumped my stomach for over 2 days. Horrible experience. I lost over 20 pounds. Whatever is pushing on the ureter is pushing on the small intestines and crushing it. They did an endoscopy and there was nothing on the inside. Have a consult with a urologist next week to do robotic surgery. I haven't had solid food in weeks. On a full liquid diet 😖. Totally starving! MO wanted me to start on Ibrance but I am not sure if I am strong enough until I can eat. I am just skin and bone at this point. Afraid of counts getting low and no fight to get them back up. Any thoughts or advice on this? Thanks Dian
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My hair has been thinning too. It's has been shedding a lot in the last 3 cycles (I'm finishing cycle 9 in a few days). So far it is only noticeable to me but that's still a bit upsetting but as you all have stated - it's only hair. I haven't tried biotin yet. I'm partially in denial that it is thinning due to treatment and have been blaming the stress of my father's battle with esophageal cancer. Maybe it's a combination. I'm currently on family medical leave from work to help care for my dad so that has relieved some of the stress.
I've been meaning to ask you guys if you have noticed increased growth of you finger nails and toe nails since being on this protocol? My fingernails split and crack but they seem to be growing faster than they used to. My toe nails are definitely growing faster (no splitting or cracking though). I've also noticed that my teeth are staining easily (I'm a tea drinker). Is this happening to anyone? Just curious to see if it's just me.
Cathy
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Thanks Steph! Knew you would have some dental/jaw guidance. X-ray was negative for a fracture, could be trigeminal nerve involved as it hurts like hell to chew and my chin is numb. Just slurped down some soup. Seeing Dr Behrens at UCLA on Tuesday - he did my initial rads so plan is now rads to left jaw. Cherylking2 - jump right in - I've been seeing Dr. Glasby at UCLA Westwood since 2013. Great Drs, but I'm their second jaw met. I'm on round #10 of fas+ibrance @100, starting round #11 in 2 weeks. I eat lots of veggies, a cup of coffee, a little meat, and a glass of white wine as needed. Cathy - Biotin saved my nails months ago when splitting from Ibrance started. I also use Essie "grow stronger" base coat. Dian - please try Ibrance with us if you can, it helps a lot of ladies but often takes 5-6 mos to kick in. (())
Claire
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Claire, one friend with ONJ was misdiagnosed with several problems - had root canals, dental work, trigeminal nerve dx and a ton of pain meds. If you are on bone strengthening drugs, take the time to track down the culprit before going after the wrong one!
Unfortunately, my friend's ILC flared about the same time, so she had to foreground that for several months. I'll check in with her about the dental problems...just had a few other things on my to-do list too.
Hang in there, you're doing really great considering everything. There's just a lot to consider!
well wishing always, Stephanie
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Dian, I would not want to start on Ibrance given your situation. Not only is there a significant risk of very low counts (both white and red), which would make any immediate surgery extremely dangerous, but Ibrance also causes a lot of gastro issues, such as gas and bloating. Given the problems you're already having, even if you could tolerate it, I think Ibrance could make you beyond miserable with the existing blockages, etc. Do you know if Aromasin is still working for you? Is your MO thinking of changing that? You mentioned an endoscopy, but have you had any recent scans to figure out what's going on?
As complex as your situation sounds, I'm wondering if you've considered getting a second opinion at a major university teaching hospital, such as Dana Farber? I could be missing a lot in your description of what's been going on and your complications, but your situation does not sound at all typical, so possibly not something that has been seen or dealt with at places other than the major NCI-designated cancer centers. I honestly think a trip to one of these places for a second opinion would be a very wise thing to do before having any more surgery. https://www.cancer.gov/research/nci-role/cancer-ce...
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Hi everyone!
Just starting Ibrance this week. Taking Zolmeta bone strengthener infusions once a month for bone mets. Also taking Lupron, Faslodex, and Femara to reduce estrogen. Anyone else on Zolmeta and taking Ibrance? I'm worried about mouth infections and the risk of jaw decay from the Zolmeta. Should I see a dentist before starting Ibrance? Anyone have experience with these two drugs combined?
Thanks
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Dianerose - I am a big big Ibrance fan, but my instincts follow dlb823. It is not the obvious thing to do when your overall health is challenged by gastric blockage and you cannot eat solid food. Ibrance often works slowly, sometimes taking 6 to 12 months really do what its going to do. It is a great idea when you don't have extensive mets and things are sorta under control. I've seen people do chemo first to get control of the situation and then switch to AI's and Ibrance.
You need whatever is blocking your small intestines gone and you need the mets to the abdomen controlled. Mets to the abdomen are complicated and dangerous and I am sure there is some difference of opinion on how to treat them. You want to hear the discussion. Also your docs don't seem to have completely diagnosed the problem. I personally would not proceed without a second AND third opinion. At least one needs to be at a major cancer center. I would certainly be considering SBRT, chemo and immunotherapy. Clinical trials. Aggressive stuff.
Emdee - Ibrance doesn't really add the jaw/bone problem that I know of. Claire (may) have an actual met in her jaw, I don't think what she is going through is caused by the Ibrance. The challenge that I have found with major dental work were two: the side effects of the antibiotics I was on plus the ibrance got to be a bit much and I was very slow in healing from the surgery. I opted to take a two week break from Ibrance after that procedure rather than one.
There was another lady have dental surgery at exactly the same time I was who had no problems and kept to her normal protocol. My advice with respect to Ibrance is just be aware that you have the option of adjusting your dosage and timing when you are dealing with some other situation on top of the whole cancer thing.
Zometa and Xgeva cause issue with the jaw (ONJ) which stephanie (longtermsurvivor) has outlined in the last couple of pages. This is where your real problem lies. You don't want to combine dental work and these drugs, or if you do you want it done by an dental oncologist. I've seen people go off the drugs to do dental work, but the real issue is that once you've been on those drugs for a while, dental work becomes risky.
Cathy - My nails seem to grow faster. Thought I was imagining things because aren't they supposed to grow slower?
>Z<
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Claire - I have no advice, but a lot of empathy. I am only just recovering from the relatively minor dental surgery I had this summer. It effected me way beyond my teeth. It seems the ibrance slowed down the healing and compounded the difficulty of the recover. That said, there was someone who much more difficult work on their jaw at the same time and breezed through it. I honestly expect you will have an easy time, once you get into treatment.
I am glad you are seeing your doctor soon. I really want to hear how it goes. Your signature line shows no sign of bone strengthening drugs, so this is just the met weakening the jaw?
>Z<
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Zavoka & dlb824- thanks for the advice. I have an appointment with a local doc next week as well as one at Lahey in the Boston area. I agree that some chemo first makes more sense. MO is talking about Xeloda. Very scared that mets are in my abdomen. Lobular is so unpredictable 😖. When they do remove this tumor I want them to check if my Her2 has changed. I have read that this happens a lot with mets. It would change treatment for sure. Has anyone had this happen to them?
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Dianarose, I am so sorry that you are in such pain. I too have such horrible stomach pain from constipation, diarrhea, gas and bloating. I believe mine is caused from the blood clots in my stomach aortic and femoral artery. I just switched about three weeks ago, the same time I started with Ibrance from the blood thinner lovenox shots to Xarelto blood thinner pills and thought that could be the reason. Also hoping the issues are coming from the blood thinner dissolving the blood clots. My onc says I will be on the blood thinners for life and if that is causing all of my stomach issues I'm not certain what I will do. So far. I have lost eight pounds. 20 pounds for you is down right scary. Get another opinion or two until they figure it out0
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cherylking- sorry about the clots and stomach pains. Clots are scary. I lost my best friend to a clot 3 years and she was healthy. She had surgery several years prior for a broken leg and a clot formed and they didn't know☹️
I lost so much weight because I was eating for weeks and the food was not processing. Kept eating and kept losing weight. With over 23 feet if small intestines the food just kept piling up because of the blockage. It took over two days to pump everything out. Horrible experience ! I have managed to gain over a pound back in a week but it's hard while on a full liquid diet.
My daughter wants me to go to Mexico for treatment. It totally scares me though plus it is 50k. If you google Shannon's story you can read about it. I talked to her on the phone several months ago but she wouldn't give me an answer on the success rate so I am hesitant.
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Hi Diana Rose,
I don't have much of an opinion on Ibrance or chemo. Do know that HER2 and ER/PR status can change as mets progress...so if you're having a biopsy anyway, good to check them. But, in a weakened stated, I wouldn't pursue surgery, especially with weight loss...it's important to devote your energy to healing and dealing with the cancer. A biopsy might be a luxury more than a necessity.
Be sure to take this up with your clinicians and to seek additional opinions, options and approaches!
I do have an important suggestion though - be sure to join our select and supportive bco group at peritoneal carcinomatosis . Our life experience is truly phenomenal and we may be able to help you in unexpected ways! Most members have lobular diagnoses, I have ductal. Most of my day-to-day abdominal problems are due to ascites, fluid in the abdomen, and the associated daily draining of 1 liter of ascites. Yet, other members definitely have GI symptoms similar to yours!
Whatever treatment courses you pursue, I hope to see you there too, Diana Rose.
Warmest healing wishes, Stephanie
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Dianarose, I am a believer of alternative medicine but going to Mexico is down right scary. Think long and hard before you go down that road. Yes, my blood clot was in my left leg, which in retrospect is what may have saved my life (ever the optimist), because had I not gone to the hospital with the blood clot who knows when they would have found the lung cancer. With a ton of other tests, they found that my breast cancer had metastasized to my lung and my bones. Then, they found, with more tests, the scarring on the left heart muscle and severe damage to my right heart muscle. I am just happy to wake up each morning, even with all of the SE. Keep the faith and fight on BC sister, we are all rooting for you0
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HI Zarovka,
Your interest in bone strengtheners might lead you to this post at the Femara topic
https://community.breastcancer.org/forum/78/topics...
I don't buy every word as fact, but there are plenty of references to research.
Good morning, everyone. Thank you for allowing me to post at the Ibrance topic. I care so much about your well-being!
warmest of healing hugs, Stephanie
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Z - Agree that Ibrance is not the dental culprit, I was on Xgeva for 2 cycles, but after some adverse reaction, my MO stopped, thus no reference in my signature line. Biophosphonates like Zometa can cause osteonecrosis. http://www.breastcancer.org/treatment/side_effects/osteonecrosis I will keep everyone posted on my jaw radiation. I'm going on Xmas cruise to Europe in December. Good news is that Ibrance halted progression in sternum and nothing else glowing on August PET - TM was 38. I'm hoping we caught (possible) jaw met early. Had dental work in September and eating soup today. My RN sister is cooking some mashed potatoes with curry on Sunday and sharing a bottle of WA wine I bought in Seattle.
Live our lives, not our cancer. Rooting for you Diana, agree with Z and Dee re: please get 2nd opinion at top cancer center like Sloan, and avoid Mexico. Hugs and kind thanks! (())Claire
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Dian, just wanted to add that it is actually recommended that Ibrance be taken with a big meal containing some fat. In fact, the literature points out that not doing this significantly decreases its absorption, so one more reason it's probably not the right med for you until you can get the eating under control.
As far as a clinic in Mexico, I wouldn't in the shape you're currently in. A BCO member recently went to one of those clinics and never returned. From her family's account on FB, it sounded like she lost her life to a complication that never should have happened, and if it had happened in the US, probably would have been caught and treated before it became fatal. As big a fan as I am of alternatives, that tragic event really gave me pause about seeking care outside the US, even if I could justify the cost.
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Dianerose - If you are called to consider alternative treatments, there are board certified US medical doctors who provide complementary and alternative treatments in the US. I have a lot of respect from these guys both from personal experience and what I have heard. PM if you want some solid US alternate treatment options to consider.
If you are ready to spend $50K, I would go to Germany long long before I would consider Mexico. There are clinics in Germany that provide promising treatments that are in early clinical trials here and hard to get. But if you are looking to follow that path, the first thing to try is to aggressively pursue clinical trials here. The hard thing is the research ...
MO's are not always the best avenue to look for trials as they are highly incentivized to put people in trials associated with their own institutions. I have also found my MO's to be oddly unaware an uninformed of the options at their own institutions. I just think the trials are moving so fast it's beyond their scope to keep up.
Cancer Commons helps match people with trials.
This website has a reasonable search engine.
I am pretty wonky and comfortable reading research papers, but if the time comes, I will likely hire a consultant to help me find good trials. In fact I am curious if anyone has tried this and how it worked out ...
If you want ideas for trials I have some thoughts because I keep an eye on the options for my own possible future use .. let me know and I will spew some ideas for you to research. Although not ILC, I am ERPR+.
Your daughters basic instincts are right. You need to move aggressively beyond the standard of care provided by the environment you are in. The first step is second and third opinion at major cancer centers. If you want to push harder, proactively go after clinical trials or alternative care in the US. Finally, there are good options outside the US, but Mexico is not the way to go.
I've had very very good personal experience with cancer care in Latin American. I wouldn't hesitate to Central or South America for basic standard of care medical treatment. However, the next generation treatments and the alternative treatments that work are happening elsewhere.
Take care,
>Z<
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Stephanie (Longtermsurvivor) - It is funny that you should reference that link as it is relevant to some recent treatment decisions I have made. I am on femara (which can reduce bone mass) and I had a single bone met early on, so I had been wondering why my onc never prescribed Xgeva or Zometa. Very early on, she was pretty excited about how these drugs can both strengthen bones and treat the cancer. However, right now she is just monitoring my bone density. I'll be getting a scan this month. She won't prescribe bone strengthening drugs until she sees a problem. My bone met resolved with Ibrance and if my density scan is okay, we're just going monitor bones for a while.
The point is that I think my oncologists views on Xgeva and Zometa have evolved in just the past 6 months. She is clearly more hesitant to prescribe the drugs as the long term side effects become better studied and understood. And since I've been reading articles like that, I haven't been pushing to go on them either. They are excellent drugs for certain situations, but as long as I can avoid them I am better off, IMO.
>Z<
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I had no idea that taking Ibramve with the biggest meal, including some fat, was so important. I pulled the below from the trial study - is this suggesting the best conditions include a meal of 800 to 1000 calories? Sorry to be dense but I was confused when I got to the end of it and somewhat panicked that I am keeping my dinner meal down to about 400 calories. Also, I'm not eating after that meal (usually) so does that then create the fasting condition which is cautioned against?
Food effect: Palbociclib absorption and exposure were very low in approximately 13% of the population under the fasted condition. Food intake increased the palbociclib exposure in this small subset of the population, but did not alter palbociclib exposure in the rest of the population to a clinically relevant extent. Therefore, food intake reduced the intersubject variability of palbociclib exposure, which supports administration of Ibrance with food. Compared to Ibrance given under overnight fasted conditions, the population average AUCinf and Cmax of palbociclib increased by 21% and 38%, respectively, when given with high-fat, high-calorie food (approximately 800 to 1000 calories with 150, 250, and 500 to 600 calories from protein, carbohydrate, and fat, respectively), by 12% and 27%, respectively, when given with low-fat, low-calorie food (approximately 400 to 500 calories with 120, 250, and 28 to 35 calories from protein, carbohydrate, and fat, respectively), and by 13% and 24%, respectively, when moderate-fat, standard calorie food (approximately 500 to 700 calories with 75 to 105, 250 to 350 and 175 to 245 calories from protein, carbohydrate, and fat, respectively) was given 1 hour before and 2 hours after Ibrance dosing.
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OMG I did not know the food intake either. I have been taking my pills at 8 at night with jello, watermelon or a couple of crackers. Have I been sabotaging myself this whole cycle? I can definitely take the pills earlier with a little more food but cannot fathom eating that many calories all at once. My entire daily caloric intake is normally around 11 to 1200 a day. Being nausea and vomiting and diarrhea tends to cause me yo eat far less. Yikes.0
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Anyone currently on Ibrance + Faslodex? Can you walk? Please, let me know.
The walking problem is the reason I changed from Ibrance + Femara. I was practically bedridden and shopping for electric wheelchairs after a few months on Ibrance + Femara.
Thanks,
Sarah
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I've been on Xgeva + Ibrance. I would get any dental work done before hand.
A simple cavity (enamel only) is no problem. A cap, crown or root canal could cause trouble.
Still, get a cleaning and baseline established, and see your dentist every six months religiously.
Sarah
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Emdee,
Are you taking all of those meds at the same time? Zometa, Lupron, Ibrance, Femara and Faslodex? I did not think that Femara and Faslodex were to be taken together. I am not familiar with Lupron.
Sarah
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Because of the heat and sure the cold this winter.....I walk in my house from one end to the other for about 30 minutes. I have no excuses and can't blame the weather. The only side effects so far have been loosing most of my hair, a few mouth sores and constipated every so often
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Hi Sarah/Hawksfan - I have been on Ibrance+fas for 10 cycles and walk a mile a day - yesterday did 2 miles. Please post your DX/ therapy on your profile for others to read. I think exercise and positive attitude are very important to our overall well being. Z bikes and exercises with her kids - look at her fit photo! In my 30's I ran the NYC marathon and golfed regularly. No running now, as impact sports might hurt (mainly due to 2 knee surgeries), but walking and smelling the grass is heavenly. Do you have bone mets to the spine that impacted your ability to walk? Lots of savvy ladies here to help. My biggest SEs are hair loss and fatigue. Cheryl - I'm on Ibrance #100 which I take every night with dinner, as that is my biggest meal. ps jaw feeling better today.
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Sarah, I, too, am curious why you can't walk. None of our txs should cause SEs so bad as to prevent walking. However, pathologic bone fractures are not uncommon for those of us who are Stage IV w/bone mets. Early in my mbc experience, I was having a horrible time walking -- pain shooting up my right leg to the point that I went from a cane to a walker to being virtually immobile within a couple of months. At the time, my local onc merely shook his head to communicate that I had mets and this was more or less expected. My UCLA onc, OTOH, ordered an MRI, but a few days before it was scheduled, I ended up in the ER with such excruciating pain, I was literally screaming and crying at the same time. And it turned out the problem was a fractured femur and fractured pelvis. If you are having a real problem walking, I would urge you to ask for an MRI to figure out what's going on. Unless you have some sort of pre-existing issue not mentioned above, your meds alone should not affect your mobility. Oh, and after a rod in my femur and a hip replacement (necessary b'cuz of where the femur was fractured), I can easily walk several miles a day, run, skip, jump, etc. So don't fear surgery if you need it. It can make a world of difference in your pain level if you have fractures. Otherwise, perhaps some RT would be helpful, depending on the cause of your pain.
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Hawksfan, Yes, I'm on all of those drugs simultaneously because I'm only 34 with extensive bone mets. My oncologist wanted to take an aggressive approach to lowering my estrogen. Almost all the studies are on postmenopausal women, so it was important to put me into menopause early for the estrogen positive cancer. Not sure everyone would do this, but it has been effective in reducing the cancer activity in most of the Mets.
Z, thanks for the feedback on the dental care. Glad to hear some of you have had major dental surgeries without any problems. The doc put me on a pretty major dose of Zometa because I broke my spine in 4 places. Couldn't walk. High risk for hip fracture. But the bones are healing nicely. Will start tapering the dose soon. Glad to hear Ibrance hasn't added to any dental risks
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Sarah - Femara/letrozol can be REALLY tough as far as joint and bone pain. I am on femara/ibrance. I walk, run, do cardio workouts and strength training and I ride bikes and I do yoga. I do something every day. All of this helps enormously with the SE's. But I have to work through the pain. I do acupuncture and other complementary modalities just to be able to show up for my exercise routine. I can imagine that if my SE's from letrozol were just a little worse, I would not being able to pull off what I am doing. I would listen to Deanna and others with great care, but I also can believe that letrozol kept you from walking. I have had to put a huge effort into keeping active on this regime.
I don't know if faslodex will effect you the same. I hope not. But know that you HAVE to find a way to keep moving as it is essential to both beating the cancer and managing the SE's.
Jennifer and Cheryl - I read that study a little differently ... only 13% of the people who took ibrance in a fasting condition experienced low absorption. That's not a lot of people having this response. And they are talking about OVERNIGHT fasting conditions. That would mean taking Ibrance first thing in the morning after a 10-12 hour fast and then not eating for a while afterwards. Yuk. Pretty extreme conditions.
For those who did eat a something before taking Ibrance, they didn't see a clinically relevant difference between the different diet regimes. IMO, if you have a eating routine that works for you and feels right, that is far more important than adjusting your diet to that study.
The study group was pretty small. Absorption of drugs is surprisingly variable. I am not even sure that is a meaningful result given the sample size. I do take my Ibrance with some food, but I take the study with a grain of salt.
>Z<
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Very good point, Z, about exercise helping not only with joint pain, but also our overall well being. When I asked my UCLA onc about the malaise I was experiencing during my initial months on Ibrance -- sitting at the computer for hours on end b'cuz I had no energy to do anythng else -- the "RX" she firmly offered was exercise, which I get is very hard to start or increase when these meds zap all our energy. But it truly is a key to overcoming SEs, as well as overall well-being. In fact, when I complained to her that I couldn't walk b'cuz of our excessive summer heat, she responded, then swim.
Claire, so sorry about the jaw problem. You may want to get a referral to Tara Aghaloo, DDS, MD, PhD at the UCLA School of Dentistry. I was sent to her for clearance prior to starting Ibrance, and she's absolutely wonderful! Her area of expertise is Ibrance and other bone building drugs, so may have valuable information to help you sort out what to do about your problem.
Speaking of Ibrance, without looking back, it seems like there was some discussion about it and ONJ a few days ago while I was away and didn't have much on-line time or access. Not sure if this is pertinent to that discussion, but per my UCLA onc, there does seem to be an increased risk of ONJ for those of us on both Ibrance and Xgeva. She recently cut back my Xgeva from monthly to every 3 mos. (after just 6 mos.) due to what she has observed as a recent uptick in ONJ in UCLA's original Ibrance trials participants, some of whom are still on Ibrance. Her theory is that perhaps our constantly low counts somehow make us more susceptible to ONJ after many months/years on both meds. I'm not even sure if this is what that earlier question was about, but I figured it was worth sharing. Also, I actually did have some jaw aches when I first started Ibrance. Not sure why or if it was related, but it seemed to be at the time.
Cheryl, I'm another UCLA gal. I see Sara Hurvitz in the Santa Monica office. She's beyond wonderful!
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I had some jaw issues after my first shot of Xgeva but it went away after a few days. I attributed it to the organic tart cherry juice that I was drinking. Maybe it was the Xgeva. Hmmm. I go in for my two week labs, on 10/11 and will be finishing my first round of Ibrance today. I think I may ask for one more round of Xgeva and then curtail it until I have my next Pet/CT in November. I think we all have enough SE to contend with so unless it is absolutely critical I think less is more. Besides the more research that comes out the less I think the Xgeva and faslodex the better.
Deanna, I am happy that you like your onc in Santa Monica but I wouldn't give up Dr Glaspy at UCLA Westwood for love nor money. It is so important to like and trust your onc. After all, they are the ones who are going to give each of us many more years.
Claire, please make sure you let us know how your jaw rad goes. If you need anything let me know. I'll be thinking about you and sending good thoughts your way.
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