Ibrance (Palbociclib)
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@Rosebessie that sounds like a very unpleasant experience from both drs. I am sorry you had that experience. The neurologist sounded quite condescending. I can say I know how awful you must feel. I have been treated that way as well. Did the 2nd opinion Dr have any new recommendations despite his attitude?
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Aprilgirl-So good to hear your news!
RoseBessie-It seems odd to take antibiotics if you are not sick. I've been Grade 3 neutropenic for most of my time on Ibrance and don't seem to get sick anymore often than anyone else. I'm very active and around a lot of people. I think the constant exposure helps my immune system. When I have gotten sick with a fever or something, I immediately inform my doctor and then take whatever is necessary. Hang in there!
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@Rosebessie , I am so sorry that the neurologist was dismissive / not helpful. I agree with Chicagoan that the oncologist making you take antibiotics every month as a preventative is not standard of care , unless you often have infections?
Like Chicagoan, I've had anc levels between .500-1.1 for the past 4 years and 4 months on Ibrance. I am still working and in public often and rarely get sick or even get a cold . I share a tiny office with a colleague and we are together a lot - she gets sick much more frequently, and is not a cancer patient .
Also , my oncology team at Fred Hutchinson cancer ctr in Seattle does not use neupogen for ibrance induced low anc / low white blood levels due to Ibrance or cdk use. They have told me it is not like chemo that kills the white blood cells off but it is a medication that suspends the WBC so the neupogen won't really help (their opinion). This is why even with neupogen the next cycle you will most likely have low anc .
Lastly, I have found if I have the blood tests in the afternoon my anc / wbc is slightly higher . Slightly higher is helpful ...compare an anc of .90 to 1.10. Everyone is happier when my ANC is 1.10 :)
I have a lot of empathy for your struggle with these doctors because having stage 4 cancer is enough to deal with , without adding doctors without empathy :/
We are here for you !
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Aprilgirl, doing the happy dance for your stable scan results! Always good to see you here.
Rosebessie, I'm sorry, too, that you were treated so dismissively, that is not okay. I also question why your doctors have you taking antibiotics and neupogen? I've never taken either for low ANC/WBC, I'm concerned that you're being given too much antibiotics. Is your regular doctor at all open to discussing this more with you?
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Hi @brutersmom, @Chicago, @aprilgirl1, @sf-cakes. You are the best 💕🤗👍!! Thank you all so much for sharing your IBRANCE experiences. I cannot tell you just how much lighter my heart feels. We're dealing with the same disease and treatment plan but in different environments under different Oncologists. So in a way, your feedback is like getting 4 "second opinions".
You see, 3 1/2 years ago, my first Oncologist put the fear of God in me that without the Neupogen and antibiotics, I would get Neutropenia and in being stage 4 Cancer, risked certain death. He started me off on both with my fist IBRANCE dose, and I assumed that was the standard treatment plan. I began to feel uncomfortable about developing antibiotic resistance but each time I'd raise it, he would remind me about the risks of infections so I didn't know what else to do although I still wondered if this could really be the internationally approved standard treatment plan. Now I have a broader perspective of everything. I'm currently on my 7 day break and I have not had any injection, nor have I used any antibiotics this week, and I'm still alive and not ill at all.
@brutersmom, The second opinion MO is only available Mondays so I haven't been back to him but I'm also in two minds about that coz of his rough bedside manner ☹☹. He's a "my way or the highway" kind of doctor, doesnt like questions and not one for any kind of discussion.
@sf-cakes, my regular MO is hostile to discuss anything that "questions" his decision 🤣🤣, typical of MDs, but has a warm personality and is easier to work around. I shall go back to him and gradually work him around it.
@aprilgirl1, you still work full time?. That's awesome👍. I've been trying to do some part time work but I've been stressed out. You've given me courage.
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@Rosebessie that sounds like a difficult situation. I am glad you are taking the time to educate your self. My new MO suggested considering the med to bring up my neutrophils but he will only do that if I hit grade 4 and can't get above grade 3 in 2 weeks. I get antibiotics only if I am sick. So far despite everything other then sinus infectio s during allergy season I have stayed healthy. I hope you are able to convince him. Another thought Antibiotics will not protect you from viruses which is what you are most likely to get from other people. Antibiotics are used to treat the secondary infections you can get from catching a virus.
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Decided to check in. Started back on Ibrance 2 weeks on 2 off. Battle between an oncologist and an orthopedic surgeon who disagree. I was not prepared for the mental drain knee replacement surgery would have. Combine that with cancer and Ibrance has left me mre tired and emotional then before. I am one week short of 3 months. The knee it self feels great but I have several issues going on with swelling that indicate a possible problem. My neighbor just retired. She was a physical therapy. She told me I need to push the Dr. For a ctscan. My bakers cyst keeps rupturing. 3 is in 4 weeks since month 2. She said that is not normal and needs to be addressss.
I had a good bone scan last week. See the oncologist next week. Seriously thinking about a second opinion. Still have concerns that I may not be at the best cancer center. Now that the weather is nicer I feel like drive to the Philadelphia area is more doable.
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brutersmom, you've still got a lot going on. I can feel your frustration with the conflicting opinions of your docs. I'm glad your neighbor encouraged you to push for a CT scan. I wish it didn't take so much effort to advocate for ourselves. The mental drain is REAL!
(((hugs)))
Carol
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@brutersmom, sorry the knee is giving you trouble. I'd like encourage you to get that second opinion. The body is yours and you have to be happy with how the doctors are dealing with you. That's what I told the 2nd opinion Oncologist who was busy giving me his conditions instead of listening to why I was there to see him. All the best. Hugs 🫂 🤗
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I have an appointment next Tuesday. We will see how it goes. It's going to be a fun couple of days. Oncologist Friday, PCP Monday, and orthopedic Tuesday. I hoping that once I get past the nurses who don't seem to get the info right I will get better answers. I finally read the comments and they screw up my message. Why not just copy and paste.
Still trying to figure this out.
"Spoke with patient. She states she had brushing behind her knee 2 weeks ago."
(What is brushing? I told he thinks an email it ruptured and immediately swell up again feeling like it is about to rupture again.)
"On the lower left side of her left knee, she has pain. States inability to bend her knee due to the pain on the lower left side of her knee. Denies any redness or warmth. She feels it is inflamed . . Sates it is a hard stop. States it feels like it full of fluid. She is asking what she can do for the pain and cyst"
(Lower left side directly below the knee cap I have a swollen painful area that feels like a swollen bursa. I makes bending my knee very hard and painfull.)
No wonder I don't get appropriate answers.
Once I get this mess straighten out I want to arrange a 2nd option from Fox Chase Cancer Center then I am going to pursue the option of switching my care to the neighboring county which will mean about 15 minutes extra drive time.
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Good grief, brutersmom. Don't you just love medical reports/notes like these? Sheesh!
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@sunshine99 This is not the first time with this practice. I think I will print it out and show it to the Dr.
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@brutersmom, its so exasperating dealing with such obtuse minds right? I pray you can get to switch your care elsewhere. Sending hugs
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I finally made the decision to move my care to a new cancer center. Waiting for a call back to schedule an appointment.
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Questions for you all. It seems I have come down with a cold. My husband had one last week. This is the first time I have had a virus since November 2019 when I am pretty sure I had covid before it was a thing. Lost my taste and smell. Couldn't even taste vinegar or sugar. It so far is only my nose and no fever. Yesterday my neutrophils were 2.1 and I started Ibrance. Should I be concerned or wait a day or two. I am not sure if it is allergy which is another possibility.
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@brutersmom hi there. I've also had what I suspect was a virus.... maybe even the Covid, but which has so far been treated otherwise. Honestly, I'd advise you hold off ibrance a little. These infections can knock you down in hours or days, much faster than the Cancer itself. And ibrance lowers your defense system drastically (WBC and Absolute Neutrophils) so your fighting chances are drastically reduced. It's a hard choice. But imagine fighting an infection with 0.8 Absolute Neutrophils and 2.9 WBC? I've had to make my own decision before and I'm at the same point because I chose to stop the ibrance last week, mid-way, until I'm over this. My body cannot handle both. I really wish you all the best. Hugs and prayersas we navigate through this very tough journey 🙏💕🤗
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Hi Ibrancers and friends,
Hope you are all doing well. @brutersmom , I have only had a mild cold and a mild case of covid these past 4.5 years on Ibrance. Both times, I did not have a fever and stayed on Ibrance. I do have a lot of hay fever type allergies in the spring/fall and sometimes can't tell if I am getting a cold or have alleriges? I would call your MO to see if you should take a break. I hope you have continued to heal from your knee surgery!
@Rosebessie I hope you are feeling better! It is not fun to fight viruses or infections when we are on these meds.
My 60th birthday was 4/1 and my husband and I went to Palm Desert/Palm Springs. It was really fun! My parents live down there so we saw them quite a bit plus my two sisters and their husbands met us. We had some wonderful hikes, laughs and my husband arranged for a really nice birthday dinner. We had a couple of friends vacationing in Palm Springs at the same time so were able to catch up with them - all together a wonderful vacation, 9 days total :)
I just had my faslodex injections and blood tests yesterday. My anc was 1.6 (on day 28 of the cycle). This was an afternoon appt and I was happy with that anc level, I think it is the highest I have had without taking a week off.
Onward :)
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Hi AprilGirl, Belated Happy Birthday! Sounds like you had a wonderful time. Here's hoping you celebrate many more happy birthdays. I went to the Palm Springs/Palm Desert area for the first time last fall. Loved it there-so beautiful and I even enjoyed the heat. I'd be thrilled with a 1.6 ANC with no week off.
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@aprilgirl1 1.6 ANC sounds good. What dosing are you doing.
So for the most part the cold is gone but I walk out the door and oh my. Every thing is turning green and bushes and trees are flowering. I think since I had a cold I may be head for a rough spring. Historically a cold in the spring is not a good thing for me. Time will tell.
I have started the process of switching hospitals. I got the feeling yesterday while talking with the contact at the hospital this was a pretty comman thing.
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I've been having a rough couple of weeks full of increasing aches and pains and fatigue. I visited my brother on Easter, at the retirement place where he lives and noticed a lot of "extra" stiffness and aching, especially in my back ( have 2 old fractures), and found myself not really wanting to socialize with his tablemates when we ate. Felt like I was "forcing myself" to be friendly and chatty with others, when all I really wanted to do was go home and rest. This level of aching any tiredness was new for me. Whole body, but back pain especially, seemed to get worse all week and I cancelled a PT appointment I had on the 4th ( last Thursday). Saw the NP that same morning for routine visit (onc out of town) and told her the situation and she said based on what she was hearing and good scans from previous month, that she saw no red flags to warrant any new scans or testing.
Did see the PT the next day and she decided to stop all upper body exercises like shoulder pinches after what I told her for fear of something like a new fracture, etc. We did work on lower body strength (sit to stand, stepping). It's all continuing with my large joints like hips, knees, and especially shoulders, especially feeling worse along with the upper back pain. I get some tingling in my arms and legs too occasionally. I had to cancel a get together with a friend yesterday for her birthday, as seemed to have caught a stomach bug or something last Saturday ( headache, nausea, diarrhea) and still wasn't feeling well. Also couldn't get in the shower due to the upper back and shoulder aches and pains (I'm getting pretty dirty!). Stomach problems have improved, but still really aching and tired this morning.
Trying to wait until my routine visit next Thursday with the palliative care np and for my faslodex shots, before asking anyone any more about this, because I'm pretty sure I'll just be told to go to the ER and if past experience holds, they will do blood work and run me through all the machines. It will take hours and I'll have to call a friend to take me, putting her out, and then they will tell me that they really don't see anything big time and that it's probably just muscle strain, osteoarthritis, etc. I never know when these things are serious and when it's " just" side effects. Low estrogen, i.e. Faslodex can cause all these same symptoms, but so can spine issues. I have been able to take a couple of neighborhood walks, and some to the store, but more tired than usual when I do.
This is long and rambling (sorry), but just feel like crap, don't know why exactly, and want to get it off my chest. Cooped up at home and having weepy spells on top of all this and would just appreciate hearing anything from others right now.
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threetree, I'm so sorry. It really sucks to feel so bad and be told that "nothing" is wrong. "It's probably just fill-in-the-blank" doesn't help. And that last place you want to spend your day is the ER or urgent care. I get it. I hope you start to feel better or can get some relief.
(((hugs)))
Carol
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Sunshine, thank you so very much! I think that maybe I am starting to feel better. First day with no nausea or "D". Also less pain in general, no Tylenol. Just got back from a pretty nice walk and enjoyed the spring in the air. I think this might be a combo of some sort of stomach virus on top of all these "routine" side effects. I really appreciate you responding like this!
Also, I had thought this post had failed. I was sure I put it under Mel's Living Room. I don't take Ibrance, but Verzenio, so I do read this thread, since Ibrance and Verzenio are sister drugs, but I would not have vented here like this. Something weird happened, because I'm sure I wrote this on the other thread and that when I posted, it didn't take.
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threetree, no need to apologize for posting your thoughts on feeling like crap. Interesting you mention PT and that the therapist adjusted your exercises, because I still have soreness in my leg with the rod and I feel at times that PT aggravates rather than helps it. I started water therapy but after a couple sessions I stopped going for two weeks because my leg was way too sore for days. It felt like a setback. The exercises aren’t strenuous but maybe for my circumstances they are. When I go back I will scale down what I do.
I’m glad to read that you’re doing better today. I find I need a lot longer recovery times for some things. I used to bounce back after a night’s rest but now sometimes it takes up to a week or more. I spent a few days before Easter getting a big dinner ready. I enjoyed doing it but afterwards. I had to take it easy for several days. It was nice having all the leftovers so I didn’t have to cook. Too long on my feet in the kitchen wears me out.
Btw, I no longer take Ibrance or Verzenio but keep tabs on this thread.
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@threetree no worries. I am taking Ibrance but I have vented on here about my recent knee surgery. Cancer is the one thing we have in common and we all know how challenging it can get a hen things take a turn or we get sick.
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@threetree we are here for you! I am sorry you have really not felt well recently. It is frustrating that the medical community hasn't been more helpful to find solutions to your fatigue and overall pain/nausea. It is good that you are feeling better today.
@brutersmom, I have been on 75 mg Ibrance for over 3 years but still have low neutrophil levels often after my week off of Ibrance - my onc allows me to restart if I'm above .80 and I've never been sick or spiked a fever when my anc is low (so far at least ). I have no idea why my anc was so high this blood test? I was on vacation for the week prior and did do quite a bit of hiking while in Palm Springs but overall I have never been able to correlate why my anc is low one month and not the next. It is a mystery to me!
@divinemrsm - good to see your post! I am sorry that you still have some soreness from your leg surgery. I can relate to having more fatigue after having house guests or holiday gatherings. I try to give myself some grace with all of this.
@chicagoan Thanks:)
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After 5 days of going back and forth with my current cancer center in Reading PA. I delivered my records to a new hospital. The first attempt was Thursday they faxed over 2024 only. I called told them I needed everything from 2015 to 2024 sent. The sent only 2024 again. I called Monday and asked how I can get the rest of my records sent. She said they were sent. When I reply that the receiving hospital has only received 2024, I was told that they had the problem and the person hung up on me. I called back and asked for a supervisor. No one was available but a third person talked to me and I was told they could only send 75 pages and my file was to big. I asked why they couldn't do multiple sends and was told they don't do that. Finally we agreed that they would put everything requested on cd and I could pick them up after 8am Tuesday. I arrived at 10:15 to pick up the cd's. It was easy to go that way to a meeting I had at 11, then I could hand deliver them later. 10:45. They tell me it will be another 45 minutes till they're ready. At this point I am frustrated 😠. I agreed to come back after 1 but if they weren't ready there had better be a supervisor there ready to oversee the prompt completion of the records.
At 1:00 I pick the cds up. There is one that is not labeled. There was one that said 12 scans. I have only had 4 in a year and ½ since diagnosed with mets. The best was there were 6 cds labled mammogram. They must use a lot of space because the request was only from 2015 to today and I didn't have one in 2023. I can't wait to get them back and see what they did. Does every one go through this when they want a second opinion. I told them it was a second opinion but the receiving hospital was told it was a second opinion to see if I wanted to switch hospitals. Wonder why I want to switch. Sometimes I feel like the care that hospital gives is the same way. ☹️😾2 -
Wow, that is an entire ordeal, @brutersmom! We are so sorry that you had to go through that and that you can't even be sure yet if you haven't all of the information you need to transfer to the second opinion hospital. Do they have a patient advocacy or patient navigator at that hospital that you can reach out to instead to submit a complaint?
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I just received a notice of a document uploaded to Mychart. It lists what I picked up today. It only say scans. Office visits, lab reports and pathology reports are not checked. They were specifically requested on the original request. I am hoping this is in error. I should be talking with the receiving hospital soon. I will try a supervisor first then it will be the patient advocate. Some of the reports that I can download say some information on this document are not available to the patient. This is mostly on Office and hospital visits. Hmmmm 😒
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Hmm, that's certainly not comforting after the recent experiences and them failing to provide you with what you asked for. If it becomes too difficult to get a supervisor though—since it seems like they haven't given you that option when you've asked recently… it could be worthwhile to bypass to a patient advocate. You've spent quite a bit of time on this already, and your time is valuable. You have a lot on your plate. It shouldn't be on you to have to constantly ask for something you've been asking for whatever length of time at this point. We certainly empathize with what you're going through. It's beyond frustrating and unneeded stress.
Let us know how it goes, @brutersmom.
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