Ibrance (Palbociclib)
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Divine and RK, interesting. I am on my laptop (on Safari browser) I seem to have to log in every time.
However, I used to also log in on my iphone at times and since the recent update, it won't accept my log in on my phone. Not a huge deal as I prefer to post from my computer but it is different than before.
I have yet to add in my dx and other info, which I hopefully will get to this weekend.
RK - sorry about Covid/ colds and visiting family members - we have had that experience , too. It is so frustrating! It's good to hear your husband tested negative so far. Hope you can avoid whatever germs are going around!
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Hi everyone. Hope that you are having a good springtime day. It was 91 here in Florida, so a bit hot for my likes. We really need rain and all we received was a lot of thunder and a five minute down pour.
I had my 2 visit with my oncologist since being diagnosed. This time I was ready to talk and ask questions as frankly the last visit I was still in shock of the stage 4 diagnosis.
He said something that I just have to share with you. Their is a patient of his that has been on Ibrance close to 10 years!!!! If I recall Ibrance came to market 2015? So this patient must have been part of a clinical trial?? I couldn't believe it and I started to ask about mutations (thinking about that ESR1 that folks are talking about). Looks like most insurance companies do not want to pay for that testing until you fail your first treatment plan. Now talk about the cart before the horse analogy. Typical insurance stances that certainly leave the patient with more advanced disease and fear of what treatment is next.
He reported that their are 5 to 7 drugs for advanced BC in the pipelines that should come to market very shortly. The funding for cancers that receive the most are: breast, colon and prostate. The one cancer that remains underfunded is sarcoma. The one cancer that receives good funding but has not shown any improvement in treatment plans is pancreatic cancer. I appreciate that he is a general Oncologist with a large cancer center affiliation. I know most folks prefer a MO that specializes in BC, but I've always felt that a general ONCO may see the potential for drugs used in other types of cancers that could benefit BC patients. All in my humble opinion..
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Hello Ibrance dancers! So good to see familiar names here.
I'm recovering (am mostly recovered) from a vertebroplasty procedure last week on my T9 vertebrae, where I had a mild compression fracture - but not mild pain! The kind surgeon told me it would be a couple of weeks before we can accurately assess how much pain relief I will feel, but I'm happy to already be feeling some relief, down to one pain pill per day from three per day. I was very anxious going into the procedure (big needles in my spine kind of freak me out, lol) but they gave me good hospital drugs.
On cycle 28 of Ibrance, going in later today for a zometa infusion and a shot of lupron in mah bum. Still working 32 hours per week, waiting for the back yard and deck project to finish (work crew is in week six now, ugh), and spending many quiet moments remembering my sweet husband who passed about five months ago.
Love to Aprilgirl, RK, Divine, Sunshine, Chicagoan, Spookiesmom, and everyone whose name I can't recall - I'm afraid to go back a page because that erased everything on the older site, but maybe that's changed with this update? I don't want to find out!
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Irishlove. Keep asking questions. I listened toa pod casts that said drs should early on talk about options down the road. I just did that with my MO. So far I have not seen a MO this time around that only does breast cancer and I believe you are correct. When first diagnosed in 2015, I had two breast cancer Dr and I did not feel they were on top of things like this doc is. I had a crisis from letrozole while my doc was away for a month and I saw a MO that specializes in gastroenterology and gynecology. I really like her as well. She knew immediately what the cause of my issue was and what to do about it. In 2017 when the same thing happened I was told by the breast cancer specialist I need to learn to live with it. Suicidal behavior is not something you learn to live with. I'll take someone with a mixed background that cares and is knowledgeable before someone who specializes in an area but does really care.
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HI brutersmom,
No one in the medical field should gloss over mental health issues as serious as suicidal thoughts. How unprofessional and callous that doctor was! I realize we can't all have a great relationship with our MO's, but I'm happy to report I do!
We are finally learning to advocate for ourselves. I don't expect perfection but I much prefer a medical professional to say "I don't know, but I will find out", rather than brushing someone off.
Bye the way, I have no idea how to post my medical stats below. I had them posted and the new forum no longer shows the info.
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Irishlove, I agree. That is why I refuse to see 2 drs in my cancer center. I love the one I have now. Unfortunately he is an interim physician due to a shortage of drs. Might have to go to a neighboring city if he leaves before they get some new ones on staff.
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irishlove,
To repost your medical stats….click Account and Privacy Settings…then click Signature Settings. I think you will see your original medical stats. Follow the steps to repost them. I had problems at first so sent a message to the moderators and they helped me out.
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wenwei, Thank you but my notes were mia. I created a new profile. Let's see if it worked. TESTING
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Irishlove, I need to add my dx and info back as well. I love to hear the info that your Onc shared with you, it gives me a lot of hope. One thing we all know for sure is Breast Cancer specifically is very complicated (I am sure all cancer is equally complex). There is no one size fits all "cure", sadly. So, bring on the new treatments and thank you to all our fellow cancer patients for participating in Clinical Trials so that it furthers the knowledge and available treatments (NicoleRod and RK2020 - special shout outs to you both and anyone else on a trial).
SF-Cakes, I am so happy to see your post. Also happy to hear that you are recovering from the spinal surgery and already feel some relief from the pain. Hope you have some time off and can enjoy Spring. Holding you close re your sweet hubby. I have irises in bloom now, reminding me of our dear RRabbit.
Brutersmom - thankful you found a doctor that actually LISTENS and cares about their patients. Suidical ideation or thoughts should never be dismissed. That doctor sounds like a keeper and i hope you can find an oncologist who shares this doctors listening skills.
Onward, ladies and gents. Enjoy the rest of the weekend!
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Haven’t posted in a long time…I am still on 75mg of Ibrance and 2.5mg of Letrosole..Feb 9th had back surgery L4/L5 and experiencing muscle pain but hopefully will recover gradually. As of May 1st I am 7 yrs out on this treatment and so thankful. Hang in there everyone.
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Great to hear from you airlinegal. Congrats on your 7 years! Hope that your back will continue to recover and that you'll soon be pain-free. I was looking at your history in your signature. Did you have surgery/radiation/chemo first? I ask b/c I never had surgery and just started in with Ibrance/Letrozole about the same time as you.
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Chicagoan….I was diagnosed in 2000 with stage 2 bc…at that time had. Chemo and radiation. In 2016 came back as metatastic.
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Airlinegal, Thanks for answering. Hope that you feel better and better each day.
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Hi Airlinegal, congrats on 7 years and thank you for posting an update. I'm on 75mg of Ibrance and your post gives me hope. Wishing you continued success and hoping your back feels better each day.
Anyone else on 75mg?
Chicagoan, I just wanted to say that your posts have been very encouraging to me as well.
Many thanks to everyone who posts here. It has helped me to feel less alone.
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Cancer is a very lonely disease. We all have such unique experiences, it can even be lonely on these boards. Thanks for posting mc22 and everyone else. It's nice to be able to converse with other people who are going through similar things.
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mc22 - I’m not on Ibrance any longer but I took Ibrance/Fulvestrant for a total of 19 cycles. The last 15 were on 75 mg. I may not have been a super responder like some of the ladies here but my cancer seems a bit aggressive so I was happy with 19 cycles. I hoped for 24 and got 19. Close.
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mc22 - I have been on 75mg Ibrance for probably 18 months (total Ibrance for 3.5 years).
I do appreciate hearing from Airlinegal and Chicagoan who have been on Ibrance for a long time - gives me hope!
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Irishlove do you have papilary or micropaplliary cancer or both? I have micropapillary grade 3.
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Chicagoan, RK2020, Aprilgirl1, thank you for your responses and support. I'm learning a lot from reading back on this thread. I'm very thankful to be tolerating 75mg. I know we're all different, but it does make me feel a bit better knowing that the lower dose worked for others. I'm hoping that I can get into a routine where I'm not doing labs so often.
Wishing everyone well
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brutersmom, I was originally diagnosed with encapsulated papillary, stage 0 and now I assume it's micropapillary. I also assume it's grade 3 as I'm full of metastises in lungs and bones. The ct scans said neuroendocrine, but the MO said, no it's from your original cancer.
I remember being told encapsulated meant it could not spread. Hmmm, someone's got some explaining to do. I no longer see that doctor as we moved about 3 years ago.
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@MC22, you will get in to a routine where it won't seem like you are constantly running to the cancer ctr for blood work. It's been pretty amazing to me how we all seem to adapt and it starts to be part of our new normal. It was not this way in the beginning for any of us and I believe when we have to switch up meds, or have scans to check to make sure the treatment is working to keep us stable the feeling of becoming unmoored returns. I need a rhythm to follow and the up and down of late stage cancer takes some time to get used to.
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Irishlove. Sounds like having to switch Drs was a good thing so to speak. Did they do a biopsy. They had to rely on my pleural fluid because my tumor was right behind my heart bu in my right lung. Micropapilary is more aggressive then papillary. I beat the odds with my mets. I was told it usually comes back 2 to 5 years. I made 7.5. Again, I only had one spot in my pleura 2 cm by .3 cm and it is responding well to letrozole and ibrance. Cancer is so different with everyone. I will say when it came back it was very aggressive. I only had symptom for about 2 months but I missed them because my meniscus had torn off my knee that summer and I messed up my stomach with strong naids followed by injuring my SI joint in my back. I credit my beating the odds had to do with my weight lifting/cardio program. My bone density study showed my density very close to the upper number. Also when I was first diagnosed no one could understand how my oxygen level were above 95 when one of my lungs was half crushed from fluid. I finally got released 2 weeks ago to return to normal activity. Hoping to add some cardio back in now. I work out in a small group with a coach and we encourage each other so much. It keeps all of use coming back and getting stronger. Just wish ibrance didn't make me tired but I will keep plugging away until I can't any more.
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brutersmom, they did a thoriascentisis and the fluid was tested and came back negative. So they did the biopsy. I blamed my symptoms on MS and never had a problem with coughing or breating until I went to the hospital for what I thought was a bowel blockage with a great deal of pain. I was and remain totally shocked how extensive it is. Did not have a clue. Heck I had severe pneumonia in the one lung and again, not a clue. With MS, I have a sub temperature, so if I have a fever it settles in at a normal temp or only slightly raised. So easy to miss other health issues due to MS. It's good to see you are back to working out. Here's to Ibrance knocking this cancer back and to a lengthy response.
It is so good to see long time Ibrance users posting and those that had a lengthy run. In my case fatigue is an issue with MS, so I can't tell the difference with Ibrance. I sure can tell the difference with flurvescent, these hot flashes are extreme and geez I'm 67.
Have a wonderful holiday weekend everyone.
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I've been on 75mg Ibrance almost from the start - I took one cycle of 125mg, then ended up in the hospital with febrile neutropenia, all my blood work crashed and they started me on antibiotics because I had a fever. I was sad because I thought that meant I wouldn't be able to take Ibrance, but my MO said we'll just start you on a lower dose, and also pointed out that my body CLEARLY responded to the Ibrance, so she felt good about keeping me on it. I'm on cycle 28 of 75mg now, last bone and CT scan clear (other than the pesky mild compression fracture, which I just had the vertebroplasty for)
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I need to vent. I have been on letrozole and ibrance since January 2023. About a month ago letrozole sent me off the deep end. I was unable to sleep, horrid night sweats, racing mind, unable to focus, and a desire to do things that could be hurtful to myself or others. The oncologist ordered effexor and stopped the letrozole for about 5 weeks. I have been back on letrozole for about 2 weeks. I can now sleep once I fall asleep but I can't fall asleep until about 2 or 3 in the morning. This just started last Thursday and I was hoping when I started Ibrance again Friday again it would help with the problem. No luck. The Dr. Order a drug today to try and help with this problem that is safer then other choices and has no interactions with anything I take. It is an inexpensive drug based on my insurance company website but they require preapproval. I was told by the pharmacy it would be available Saturday. My insurance company requires prior approval. Because of that I could even get it for a couple of dollars more through goodrx. I had to pay full retail price which was about $40 more. This is considered palative care by my doctor. Insurance companies are just so frustrating.
On a good note today my oncologist had a Dr doing a fellowship at the hospital accompanying him. He had her along to learn about rare side effects to letrozole and how to best treat them. He said he had some extra time due to cancelations and I was a good educational opportunity for her. He told her his goal was to keep me on letrozole and ibrance as long as possible because one, I appeared to be doing well on the combination and two, if I had to stop letrozole I would have to switch to fuvestrant which would be a second line. He said he would prefer to wait until I needed to switch because of drug failure and my cancer reappearing. I am happy to help educate young Drs. Some of the best care I have gotten is from you Dr's recently out of Fellowships in cancer care.
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brutersmom, I wonder if Benadryl would be of help until your meds are worked out?? To the best of my knowledge it doesn't interfere with Ibrance but I'd make sure about all meds you are on. I recall someone using Claritin on this forum, which helped them to sleep. I used Benadryl for years as a sleep aid. Normally docs jump on a person doing that, but my neuro approved it since I had horrible nightmares on prescription sleep aides. I no longer take Benadryl and it's only because I was worried about dependency. I found that it's no so important when I fall asleep as long as the body gets enough restorative sleep. I haven't had any difficulty with flurvescent, which is my first line. You spoke of changing only if your cancer reappeared. Can you tell us more about your results? How were the results measured?? By CT scan or symptoms having abated?? What ever your MO needs to do to keep you going on the first line and having success, I'm rooting for you. Happy that you passed that expiration date, too. I think those physicians should stay in their lane and let the MO's work their magic.
It's great to help to teach new doctors. I had one that was very interested in knowing I was on low dose naltroxone. Wanted to know all about my experience with the drug. Usually my mentioning LDN is met with silence as it's off label for MS and not a well known med.
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Irishlove. Benadryl make me hyper. Normally Claritin make me sleepy but it is not doing anything. That leaves me to believe that it might be the letrozole. Right now I am in the process of switching the time of day around I take effexor and letrozle to see if it improves things. I just picked up the med at the hospital pharmacy through a discount program to see how it works.
When I was first diagnosed I had a catscan to the lung. They found a tumor 2cm by .3mm in my pleura. The thoracentisis confirmed that it was the same cancer as my original breast cancer. I then had an abdominal pelvis CTscan and a bone scab. No there evidence was found. I have not had any test since the first month. I did have 3 thoracentisis and the last one was 400 Cc. I haven't had any shortness of breath since. Interestingly they determined that the fluid had resolved by listening to my breathing and tapping my back. Also my ca29-27 has steadily dropped and I am now at 38 which he calls a good number. It is one above the suggested cut off of 37. I am hoping he orders a scan soon. I would love to know if I am nead. Or very close.
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Sf-cakes, thanks for sharing your experience with 75mg. It gives me some hope to hold onto. Sometimes my issue is ANC and the next time it's platelets. I also seem to throw in a delayed reaction at times just to keep things interesting. I hope you're healing from the procedure on your back.
Brutersmom, just wanted to say that I hope you're able to get the letrozole side effects under control. I don't have experience with what you're going through, but I've had adverse reactions to other medications and can relate.
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I need to reach out to my oncologist about an issue I am having. I have a rare but sever neuropsychological reaction to aromatase inhibitors. Much of it is under control with effexor. This reaction is not manageable with over the counter meds. It is sever, so please don't suggest them. I am trying to explain how I feel when I go to bed at night to. I am exhausted. When I lay down I feel edgy and start tossing and turning. I have been given a sleep aid hydorzine palomate which helps take the edge off but I still can't fall asleep until about 3 or 4 in the morning. I want to say my inside feel shaky. I just don't know how to describe what I feel. Just looking for ideas or words on how to explain it.
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@brutersmom Im on steroids and I too feel shaky inside. But it’s worse than “shaky”. It feels like a GIGANTIC overdose of caffeine. It’s very hard to describe just how unsettling the feeling is. It makes me feel like it’s a labor to breathe. And even though I’m exhausted, I can’t sleep. You would think that I’d be buzzing around cleaning but I’m too exhausted. Instead I’m sitting on the edge of my bed typing this while my clean sheets are balled up waiting for me to make up the bed. I too grapple with finding the right words to explain it to my doctor so I’m not going to be much help.
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