Ibrance (Palbociclib)
Comments
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Z, thanks for that link to the Pfizer website, I've been on other sites but not that one, duh! I'm supposed to hear back tomorrow from one of them. If they can't find the money, the Pfizer site will be my next stop. So, thanks for that.
Sleep well tonight everyone.
Faith (in the future)
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Letmywife, with all due respect, G-d has NOTHING to do with the control of my disease, while access to this life-extending drug combo has EVERYTHING to do with it. So yes, losing my COBRA will be a very big life-threatening deal, because I'm in Texas and almost all providers have cut MD Anderson from their coverage. It's going to be a rough ride trying to find another provider and getting access we can afford (we are already scraping bottom) to these drugs. We already know all about hardship, thanks, I was the bread-winner until my lay-off and diagnosis, all in the same week November 2015. I am always pretty chill about things overall and whistle past the graveyard, but am allowing myself a couple of days of hand-wringing, before pragmatic self starts looking for options on Monday.
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Hi Katty,
Sorry if I sounded like underestimating the insurance hell you are going through now. That was not my intention. Its pretty alarming how insurance companies can cut off MD Anderson as a provider. Do you have option for going for ACA (Obamacare) ? I know there are chances of it getting repealed but it's supposed to replaced by something else.
Best of luck in finding an affordable insurance provider that's acceptable with MD Anderson.
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Dear Katty - you are entitled to your hand-wringing. I agree with Z about stress -- it will do nothing but complicate your situation. So, it must be relieved. If it is squelched, it only comes back, often worse. And we all must find our consistent tool for that release - prayer, yoga, exercise, whatever. I pray. I should walk. I eat, too. Ice cream. That is really not productive! I also talk. Probably too much of that, too.
Edit: I also quilt! How could I forget? I obtain a very real sense of peace & calm by the process. Mostly, I am a piecer and I love to express myself creatively. I teach, write patterns, generally get absorbed in it. That absorption is key to blocking out the stresses of real life and, now again, the crazy life that is cancer.
Know that we are sending you positive thoughts and support for your continued access to these drugs. We are all blessed that they are even available, albeit sometimes a real challenge to get. Thinking of you....
Peg
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Has anyone else had problems with low potassium while on letrazole and Ibrance?
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Thanks, Patching Peg,
I'm a pretty tough, low-key, and joyous person, kinda roll with the punches, you have to find happiness and peace in the everyday. What else is there, but now? I may not have a pot to piss in before long, but have a good husband, family, and friends, plus my beloved critters. Worrying never solved anything and stress is a killer. Feeling much better today, thanks. And I am thrilled about my current stability!
Letmywife - there are no ACA plans that have MD Anderson on them, insurers have bailed left and right here. Unless you are on an employer's plan or Medicare, you are locked out of MD Anderson if you live in Texas. As much as I hate to switch , I'll start investigating other providers next week, and I plan to talk to the insurance person at MD Anderson, as well. There's always Canada, although Mexico is much much closer, warmer, and the food is better.
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Thanks for the insights on when to take Ibrance. That helps to know that it takes several hours to hit the system. Based on that, I think I will take it at lunch as well.
Z, Interesting factoid about cancer being more active at night. That is one I've never heard before! It makes sense, though. I have not found anyone else taking exemestane with Ibrance, either. Onc seemed to feel like it did not matter which AI you took with it, you just need the hormones blocked.
I took Afinitor + Aromasin for quite a while. Afinitor was rough stuff, but as far as the AI component, I found Aromasin easier for me than Femara/letrozole had been previously. However, by that time I had cratered on the hot flashes and had finally agreed to go on Lexapro to quell them... so maybe *that* is why Aromasin seemed milder to me than Femara had been? I don't know. At any rate, I am not sure why my onc chose this combo. The only AI that I have not had is Arimidex/anastrozole. For a split second, she considered switching the script to that, but since I did pretty okay on Aromasin, she stuck with her original plan. She had another reason, but we covered so much information yesterday that I can't reliably recall what it was... maybe she said Aromasin/exemestane is cheaper than Arimidex/anastrozole?
At any rate, the pharmacy just called and apparently I'm all set. So here goes, off now to pick up my script and some lunch and get this party started. ::snort::
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Hello and happy new year to everyone!
I have been on Ibrance since June of 2015 . Originally I was on the 125 mg dose and I had significant fatigue but since reduced to 100 mg I have tolerated it very well. This winter I have had two upper respiratory viral infections - essentially colds - and my MO has stopped my Ibrance until my cold was over. This means I have been off Ibrance twice this winter for a month each time. I am wondering if others stop their Ibrance for colds? My ANC has been fine throughout. Since Ibrance works so well for me, I hate to stop it. Thoughts anyone?0 -
time-for-a-cure, I also have had Ibrance suspended because of a virus and upper respiratory infection that has laid me low since mid December. I started on Ibrance/Letrozole in August 2016 and after five cycles, when this virus got me, I had positive reports from scans reporting no increase in size of most lesions, so I was happy to take this break. I will likely go down to 100 mg when I restart Ibrance and Letrozole in February. Maybe those white and red cells can rebound in the spring. My MO thought it prudent to get me well before more drugs.
I am on 20 mg of OxyContin every twelve hours (7 am and 7 pm) with 5 mg of Oxycodone for breakthrough pain, which I generally do not take but once or so a week. I have lesions where most of you all have them in bones, femur, many vertebra on spine, lots on ribs, but no one in the boards I have read through address taking pain meds, except for generic talk on the Pain Board. Just wondering how others are handling pain from their bone mets.
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Katty, I'm so,sorry about the problems you are having getting the drugs at a reasonable price. Have you looked at the Pfizer website? Z posted a link to it back just a bit. I was also worried and my drug insurance co. helped me get on Pfizer's free drug program. I'm on Medicare, so I don't know if that makes a difference but I think that if you lost your job, there's a chance you could qualify for the free drugs or the $10.00 copay card.
Singlemom, yes I have low potassium and low sodium which I believe is caused by all the water I drink. My onc told me to drink V8 or tomato juice for the sodium. He also mentioned that I could take a sodium/potassium supplement but I'm worried about the water retention it might cause and my blood pressure. so it's a delicate balancing act all the time.
Sleep well everyone even though that's easier said than done. I'm having a tough time sleeping through the night even with the melatonin, I fall asleep fast and then wake up 3-4 hours later. Why? Don't know, but we need sleep for our health and as well as reducing stress. Hope you all are sleeping well
Faith (in the future)
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Hello and happy new year to everyone!
I have been on Ibrance since June of 2015 . Originally I was on the 125 mg dose and I had significant fatigue but since reduced to 100 mg I have tolerated it very well. This winter I have had two upper respiratory viral infections - essentially colds - and my MO has stopped my Ibrance until my cold was over. This means I have been off Ibrance twice this winter for a month each time. I am wondering if others stop their Ibrance for colds? My ANC has been fine throughout. Since Ibrance works so well for me, I hate to stop it. Thoughts anyone?
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Faith - I expect Pfizer will have some kind of solution for the copay issue because it is bad business for them to not fix it. If I were them, I would be funneling money to foundations right and left to get everyone on the drug. The money just goes back to them, and with a return. I would keep pushing through the Pfizer site for answers.
There is some kind of co-pay issue for me at the beginning of each year. This year the copay was supposed to be $2500 for each month, but a couple of phone calls by my specialty pharmacy and it was $10. My specialty pharmacy magically makes it go away every time this comes up. This makes sense because it is in their interest to do so. There is an answer to the $ question.
Time for a cure - funny you should mention fighting infections on ibrance. I just came down with strep throat, confirmed by a swab on Friday. Started antibiotics the same day.
I am starting week three of my ibrance on Sunday (tomorrow). In the last cycle, my neutrophils were a little low. My plan was to get my CBC panel on Monday and if neutrophils are low then I would stop the ibrance early (after two weeks) I would just start again the following week. However, as I write this, I still notice the sore throat after 36 hours on antibiotics. If the sore throat is still there tomorrow, I going to drop the ibrance until I kick this, regardless of what the CBC panel says.
To answer your question directly, I've take an extra week off of Ibrance three times. I've never cut my cycle short before but that is how it may work out this time. I am on cycle 12 and stable. Ibrance side effects are sometimes tough and you need to strike a balance between your overall health and attacking the cancer.
That said, a month is more than I have needed to do. I don't find that ibrance weakens my immune systems ability to fight disease. In general, I am not getting sick even though everyone around me is sick. In trials they haven't found an increased rate of infection among people on ibrance. However, the combination of the illness and the treatment side effects do get to be a bit much.
>Z<
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Faith, I've been unable to sleep through the night too. I consistently wake up between 3 and 4am and sometimes can get back to sleep and sometimes not.
I'm trying to figure out if that is causing my strong fatigue or if it's the meds or if it's something else. It's got me to the point of considering going down to 100mg dose. I'm just so tired
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Jen - Cannabis oil, with THC in it, does a great job of getting me to sleep through the night and wake up ready to go in the morning. I haven't gone for the doses that seem to be required to treat cancer, but a small amount gives me great sleep. Lowering your Ibrance dose is not necessarily a bad idea, but it may the letrozol or something else causing the sleep issue. We all have a lot going on.
>Z<
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I usually wake up around 2. Full moon and chocolate doesn't help. I slept like a baby before cancer. I don't think it's the Ibrance. I can fall asleep easily on the couch but my mind goes round and round in bed.
Exercise is the only thing I've found to help the fatigue unless I'm really short on sleep, then a nap. No amount of caffeine or sugar lasts. I am sensitive to both but can sleep immediately late In my cycle after drinking a big cup.
My mo says exercise and eat the rainbow. I would say plenty of water too. I could do better on all three.
I'm a morning person. Dinner time, homework and baths wear me out on a good day. However if I walk mid afternoon I have enough umph to get through.
I always try to rest or nap after lunch. Properly in the bed, not on the couch. If I don't, then I wind up napping from 9-11 pm. Makes for a bad night.
I take cymbalta for my pain. I rarely need anything more than the occasional heating pad or warm bath and ibuprofen. I've been thinking about adding tumeric for the joint pain from the Arimidex.
I'm on 100. Dropped after the first or second cycle so been on it almost a year. Had to take a short break once or twice due to a virus or vacation.Thankfully I haven't gotten sick much even with two small children. I avoided the stomach bug but had that nasty cough that lingers.
I'm paranoid about germs. We are at the PCP once a week for allergy shots, plus the gym, school, Walmart...
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Lord have mercy, I've had just two doses and I feel like I've been hit by a truck. Sleepy all the time, too.
This will get better, riiiiight???
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Time-for-a-cure - I was fighting a wicked head cold with a terrible cough starting about a week after Thanksgiving. I was given anti-biotics (doxycycline) and prednisone. This hit me right about the time of my off week from Ibrance. I was still really sick after that week and called my Oncologist to see if I should stay off the Ibrance until I kicked this illness. She agreed and said I should not start my next cycle of Ibrance until I was recovered from this illness. She also had me skip my zometa infusion that month. She wanted me to stay away from the germ rich hospital environment while I was trying to fight off this illness. She also had me get an xray to rule out pneumonia, which was ruled out and had labs done to check my WBC and neutrophils and I was in good shape there as well. At any rate I was off the Ibrance for 3 weeks (that includes the normal week off). I'm back on Ibrance now for 2 weeks and I'm feeling normal.
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Thanks to everyone who responded to my question. It is so nice to have an informed group of women to bounce ideas off of. Ibrance has worked great for me for over a year and a half. Tumor marker is normal and NED. But, I get nervous if I have to stop it. I plan to restart on Monday - which will mean I had 3 weeks off.
To lulubee- hang in there! That being said the fatigue at 125mg was too much for me, but once i reduced to 100mg it was very manageable, I work full-time and miss very little work. If you dont adjust to the 125 mg ask your onc to decrease your dose,0 -
Hi, all. Just had a PET-CT and it doesn't look good: just 4 months after a scan showed significant decrease in uptake (50-65% lower) in all my bone mets, this one showed a bunch of them increasing again (with some intake rates tripling since the Sept scan), a few altogether new bone spots, and liver uptake that is "more modular and heterogeneous" but not yet discrete lesions.
I am so bummed. I had such a quick, great response to Ibrance + Faslodex as my first-line treatment starting in May, and really hoped I'd have a longer run with this combo that has been so livable. I haven't talked with my onc yet (have only read the scan report), but am assuming this spells progression and I will be on to something else.
But to what? These are the options I wonder about:
Do we know yet if it it makes sense to go on another CDK4/6 inhibitor and if so which - riblociclib with letrozole, or abemaciclib with anastrozole (assuming I could get on one of those trials)?
Afinitor (everolimus) + Aromasin (exemestane)? Afinitor sounds hard, and maybe not so effective anyway? I did see you should get checked if you have the right mutation for it, so maybe if you do it's worth it?
A PI3K inhibitor trial (though it looks like SANDPIPER at least doesn't allow prior treatment with Faslodex)?
The SDX-7320 trial I think Moviesmoviesmovies is on? Does anyone know more on what that treatment is?
An immunotherapy trial?
I'd love to hear thoughts on this. I know my onc will have ideas, and he's fairly well connected with the trials here in the Twin Cities, but I do think I'll go for a 2nd opinion at this stage. One question: is it ever possible to participate in a trial in another city but from afar, having your own onc or group administer most of the treatments, tests, etc. I ask because while we have great health care here in MN (including Mayo though Rochester is about 2 hrs away), it seems like we don't have as many of the cutting-edge BC trials.
I have so many other questions but will leave it there for now. Thanks for any thoughts you all might have. I meet with my onc on Tues and will update after that too.
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Seagan, so sorry you are dealing with progression. I am as well, which is why I have just switched to Ibrance. The language on my December PET with regard to my liver is very similar to the language on yours. Not very comforting, huh?
Two things: 1) My onc is not inclined to follow palbo with ribo or vice versa; said the drugs are too similar. 2) I got almost 18 months out of Afinitor+Aromasin. There were some hard bumps in the road, for sure. But I'd say those 18 months were worth the trouble.
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Seagan - Thanks for letting us know how you are doing and what you are thinking about doing. We are all very interested in this discussion.
I'd push you to get a biopsy and do some functional or genetic testing, but it is not clear that you have measurable disease outside of the bone. Bone biopsy have all kinds of issues as a diagnostic tool and they are unpleasant so I am not sure that bone biopsies are worth it. What exactly do you think is going on in your liver? You have enhanced uptake in your liver but no lesions? Is this even cancer? If you want respond to these questions it will aid the discussion of clinical trials. A lot of clinical trials want some kind of measurable disease they can biopsy and monitor.
We don't know if the new CDK 4/6 inhibitors can be used as a second line after Ibrance, but looking at your history, I would give up on the CDK 4/6 inhibitors for the moment. It is possible to cycle back to these treatments after you have tried other things. Cancer can become re-sensitized to treatments. However, you probably should try something else for a while.
It would be interesting to get the ESR1 gene tested now to see if you are currently resistant to hormonals. If not there are other hormonals. Afinitor and aromasin is one. I am not impressed with the overall survival numbers for afinitor. We have a bunch of ladies like lulubee who are grateful for the time Afinitor gave them but you do have other options for hormonal treatment if that is not your cup of tea. Bestbirds Guide to MBC outlines multiple lines of hormone treatment beyond afinitor and aromasin. Tamoxifen is an option as is Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone). They all work to some degree and can be considered.
Xeloda is a great oral chemo. Once you dial in the dosing people do well on it for a long time. They are learning that the dose can be much lower than previously used. The great thing about chemo is that it knocks out fast growing cancer which may be the case for you now. If you can get a year or two out of xeloda, the cancer may become re-sensitized to hormonals and you can work back through the hormonal protocol. At that point they might have figured out when and how to re-deploy CDK 4/6 inhibitors.
Here are some clinical trials from my files that may be of interest. You can combine Aromasin (exemstane) with an HDAC inhibitor rather than affinitor:
Exemestane With or Without Entinostat in Treating Patients With Recurrent Hormone Receptor-Positive Breast Cancer That is Locally Advanced or Metastatic
This is my current favorite immunotherapy trial, but you need a resectable lesion so they can get the cancer cells and train your lymphocytes to attack your cancer. Do you have a resectable lesion?
Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer
But the NIH has a lot of interesting immunotherapy trials and they are very proactive about getting back to you for screening if you contact them. If you are interested in immunotherapy, I would let them figure out what can and cannot work. Even if a trial is not your next step, they will work with you to be ready when the time comes.
Ellen Bodurian, RN, BSN
Research Nurse Specialist
NIH/NCI Surgery Branch
Immunotherapyellen.bodurian@nih.gov
Phone: 301-594-2644
Good luck. We are all very interested in what your MO says.
>Z<
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Oh man, this is just what I need right now - thank you so much, zavorka and lulubee. I am so grateful for your responses.
Z, I really don't know what's going on in my liver. That's definitely something I'll be asking my MO about on Tuesday. I'll also ask him about whether I have anything resectable. I had a bone marrow biopsy back in May so we could confirm it was indeed BC again (I had so many bone spots my MO wondered if it could even be multiple myeloma), and of course also to see if it was HR+ again etc. They also found some mets in my ovaries when they were removed in June. But none of that probably counts for what they need, nor are current enough, I'm guessing?
I will also ask about additional testing, including genetic testing. Which functional tests would you recommend?
Finally I am so glad to have the NIH contact - thank you so much there too.
I'll report in with more detail asap after my appt on Tuesday. Hoping that will equip me with answers to your great questions, Z. THANK YOU!!
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Seagan,
I am very sorry to hear about your progression. This disease is simply awful.
My wife is in somewhat similar situation as your but different in certain ways. Her bone mets are stable on Ibrance + Letrozole but she developed multiple mets in liver very recently.
Considering that Ibrance + Faslodex combo was your first line of treatment, I think you should stick to standard of care for now which could be Xeloda for you or a different hormonal (or even Ibrance + Letrozole). Best bird's guide is excellent for that but you should take at least two oncologists opinion to determine the next steps. Often the oncologists decide on the next steps based on the severity of the progression (chemo if the progression needs to be managed quickly or more moderate ones if the progression is mild).
As far as clinical trials are concerened, I think its a great time for you to do all the research you can but not actually jump into it. You have not yet exhausted standard of care (even by a long shot) and after all clinical trials by definition are unproven. Also most clinical trials require you to fail at least 2 prior standard of care treatment. However doing the research now will prepare you for the time when you may be running short of standard of care options (I pray though that you never end up in that situation).
Besides NCI, one other great source for immunotherapy trials is CRI (http://www.cancerresearch.org).
The functional testing is done by a company called Rational Therapeutics (https://www.rational-t.com) and a few others. We are planning to get their screening done but I will be talking to them first to understand what is the procedure involved. They will definitely need tissue sample to do any kind of recommendation and I think they do not want those samples to be preserved in formaldehyde (which is how tissues are preserved in most places in the US).
Please ask your oncologists (have a 2nd opinion definitely) if you should do a liver biopsy at this stage.
This is just my opinion based on what my wife and myself decided to do as our next step. Like you, she failed her first line of therapy and now moving on to the second.
My prayers are with you.
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Lulubee - I haven't hit the fatigue yet - still on 125 mg starting the 3rd round. Interesting how so many women have dropped to 100 mg and still have good results.
Seagan, Sorry to hear about the increase. I started my 3rd round and had a decrease in my CA 27/29 of 24 points. Just had a blood test last Friday - will know results on Wednesday. I have been feeling good, however the last few days the lesion in my sternum has been very painful. I have had to take more than Advil. So I am hoping that is not a sign that the med isn't working as I have hoped to be on this drug combo like the rest of the wonderful ladies here. In regards to your question about doing a trial in another city, I did a 4 month trial in Alabama and my insurance covered it. I saw my MD in Minnesota monthly during that time and he received all the reports. I was doing really well, but then a lesion showed up in my liver, had a biopsy and was booted from the trial. The MD in Alabama and MN had agreed to ablate the liver lesion, but I did a second opinion at Mayo and her opinion was waiting 6 months and then I had more progression in my lymph node in my neck, so then that was out. Honestly, I wished I hadn't gone to Mayo, but it is what it is. I had "blossomed" in November and have my next scan in February. I am with the MOHPA group and again, my MN MD will communicate with the MD in Alabama (my sister is a MD at UAB and the head of the Oncology Dept. Dr. Andre Forero is her friend) and I am very lucky to have him on my side. I hope your meeting on Tuesday provides you with answers. Hope, Hugs and Prayers to all the women dealing with this dreadful disease.
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Mystery solved. Ibrance is not to blame for these intense body aches and sleepiness. Judging from last night's hard chills and low grade fever, apparently I have caught whatever bug my son had last week.
Honestly, though, I am relieved to know it's not the meds. Cooties will move on soon enough.
Meanwhile, I feel wretched. Everything hurts. I am in dire need of a personal butler to do my bidding. It's simply not right that nobody has appeared with a hot teapot on a silver tray. I think there's a cowbell in the dress-up trunk. Perhaps I should try that.
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Seagan - sorry to hear about your progression. Please see if you can get a biopsy so you can identify ER+ or if there is a change. I have seen Xeloda (Madame X) kick liver/bone mets hard, so rooting for you if onc agrees. Were you ever on faslodex? Mediclisa - Ibrance + faslodex made my sternum mets sclerotic and stable; give Ibrance and faslodex time as they can take 5-6 mos to kick in. LTMWL - what did onc start your wife on now? Very hopeful for her - lots of arsenal at your disposal. Z - I am having my first IV of Vitamin C this week - it's $150, but willing to try. My bloodwork was ok on Friday and I started round #14 - note I am on 100mg Ibrance. I lost 7 lbs on rads. so all my skinny jeans fit. lol to a positive SE.
(()) Claire
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Have not posted in a little while, but am cheering everyone on daily. I guess I have been in a fog and don't even feel like I can write coherently. I am still having the mild right flank pain and have a had alot of "burning" back pain during this week off Ibrance. Haven't had a scan since September, so of course am wondering if "pain=progression". The usual roller coaster. Will see how tumor markers are at end of month.
Sending extra positive thoughts to those facing new treatments and changes. This disease takes so much courage and adjustment. Sometimes I don't realize how much it is always in the back my mind.
This may be rather random, but I have found doing puzzles to be very therapeutic. Takes one's mind off of the daily grind. Also, my seven year old grandson and I play the simplest of games. We call it "balloon game". Just keeping an inflated balloon in the air. We listen to tunes and we laugh and even get out of breath.This is a real uplifting little game! (no pun intended there)
There has been some discussion about how ribociclib could be more effective than Ibrance. The only thing I can think of is that since it is a different molecule, it may bind more efficiently to whatever it needs to in the CDK4/6 pathway, or hit a different area along the pathway. Guess the jury is still out on this until more data is collected.
All for now. May the force be with you. MJH
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Have any of you looked into the safety of using essential oils with Ibrance? I had better luck finding usage info with Xeloda. I have also searched using "CDK 4/6 inhibitors" and still nothing comes up. It may be that nobody has looked into this yet.
I routinely use several oils, so I really need to know if this will be problematic on Ibrance. Before I give up on Dr. Google (LOL), I thought I would see if anyone here has found any info.
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lulubee, here are a couple of websites/links I've found in the past that might be helpful to you. I also use essential oils -- in diffusers, baths and directly on my skin -- so I if anyone has any additional information, I'd be interested too.
List of meds that may interact with Ibrance: https://www.drugs.com/drug-interactions/palbocicli...,ibrance.html
Information on safety of herbs, botanicals and other natural substances: https://www.mskcc.org/cancer-care/treatments/sympt... (And by the way, Frankincense, a favorite of mine, is listed as Boswellia -- something I didn't know.)
Reading more than I'm posting these days... still on Faslodex+Ibrance (cycle 18)...
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I also have not posted in a long while. I am on cycle 1 - day 6 of Ibrance (125mg)/Femara. Have been under treatment for high blood pressure for several years - when I did a med review with nurse, one of my meds - Diltiazem 24 HR ER 240 mg. shows a "moderate" interaction with Ibrance, specifically " DilTIAZem may increase the blood levels of palbociclib. You may be more likely to experience side effects such as nausea; vomiting; diarrhea; loss of appetite; mouth sores; hair loss; weakness; pain, numbness, or tingling in the hands and feet; and impaired bone marrow function resulting in low numbers of different types of blood cells, which can increase the risk of anemia, bleeding problems, and infections." I'm taking the Ibrance/Femara at 9 p.m. and starting taking the Diltiazem in the a.m. instead of at bedtime (doubt that is of much benefit since it is an extended release) a few days before I started the Ibrance. Trying to remove any barriers to being treated with Ibrance. Has anyone had a similar drug interaction issue?
Thanks for mentioning BestBird's excellent MBC Insiders Guide - received it today.
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