Ibrance (Palbociclib)
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Nicole- I do CT's every 3 months. My onc agrees(she says standard of care is 3 months), and the insurance is ok with it also. We don't do PET scans because insurance has denied them. We have only done 1 bone scan because rheumatoid arthritis skews the results. I had NO symptoms when I was first diagnosed, and my routine bloodwork was normal (liver enzymes). And the liver met was the size of a baseball ( 8 cm )!!!!! I don't feel I can rely on the "if you have symptoms, we will scan then". So I WANT every 3 month CT's to monitor situation.
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Thanks candy.
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I have scans every 3 months0
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Do any of you take an iron supplement. With the discussion of anemia, I was wondering if its something I should add to the supplements I currently take.
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hi candy - I totally hear you and I go back and forth on this one a lot, in my mind. I get paranoid and anxious at times and feel like I just want a full body head to toe 3-d examination!! Stories like yours do give me a pause for sure, as I often wonder, well hells bells, I had “innumerable” Mets in my cervical thoracic and lumbar spine as well as my scapulas, sternum and pelvis and for god knows how long and the only pain I experienced was my lower back “went out” on me 3 years prior to my diagnosis and the doctors at the urgent told me I was too stressed and refused to give me scans (I was asking!) and gave me flexerall which did nothing except made me feel totally horrible. And yes standard of care is every 3 months...
Somehow my MO calms me down as we discuss the need for the scans or to wait until a need appears whether it be physical symptom, blood work symptom, or psychological need to do it for my mental well-being (and that of my loved ones as well).
it seems like folks scan at intervals that are appropriate to their individual diagnosis. I have seen others post on here that they scan every 6 months and some it’s once a year. I think if I was dealing with liver Mets I would definitelyscan every 3 months.
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My ONC told me 2 months ago that I would have my first scans either 2 or 3 mo this into my I/F treatment. After my first cylcle he reminded me of what he had said in the beginning and said that the scans will be done after this secon cycle. I have no idea why but I’ll be sure to ask on 8/20 and post his response.
Did anyone else have them done after just 2 cycles?
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Nicole, I think the standard for PET/CT scans (if your insurance approves them) is every 3 months. I did that for the first 18 months then went to 6 month scans since I was stable. But I am back on 3 months now that I have slight progression just to catch anything quicker. I have my next one next Friday.
Ginny, you have probably noticed that oncs do things differently. Perhaps he has past experience and wants to be extra diligent at first. I only see my onc every 3 months and we do a scan a week prior to the appt. If you get a monthly appt, that is great! I do get labs monthly during my week off as is protocol.
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IntolLight.......will be thinking about you....my scan is next Fri also....wishing us good result
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Hi all;
I have been so busy helping my daughter with her new little boy that it's taken me a long time to catch up.
I had a CT on July 3rd and other than a "nodular density at the left lung base which has changed considerably in configuration and may not be metastatic" the results are clear! As you were discussing scans and appointments.....I get scans now every 6 months. I have not seen my oncologist since I received these results as he knows I get them emailed from my GP and expect that I won't see him for another 2 months which would bring his appointments to every 6 months. I have no particular complaints that he is concerned about and I believe his goal with me is to let me enjoy life without constantly thinking and needing to travel for appointments and scans as long as possible. I am happy with that. My tumour markers (CA125 for my ovarian cancer which also works for my lung tumours) are low and stable as well. When I began treatment he spent a good amount of time with me for the first few visits and we discussed everything thoroughly including genetic testing (which he had me do....BRCA VUS), his interest and involvement in treatments including immunotherapy (he is recently involved with a group in the US) and of course my disease and outlook. I always bring either my daughter or a close friend with me to each appointment and we will have questions which he takes the time to answer. We also have a few laughs and I do feel better leaving the appointment. I know that one day this will change but I have full confidence in his abilities and the attention he pays to my health. Having spent the time earlier getting to know one another I found to be very comforting.
I have a question about forgetfulness. I find that I have difficulty remember names....names of people and things. They usually pop into my head much later but it does give me concern. I am wondering if this is from all of my previous chemo treatments (I have had taxol 2 times, carboplatin, AC, herceptin, arimidex for 6 years and now the letrozole and Ibrance) or if it's something some of you suffer with. I have developed the habit of putting things in the same place so I do always know where my keys are for instance but I'm wondering about the longer term mental effects of these drugs.
Also, regarding the discussion of MO's and their functions in general. I am in Canada so keeping that in mind, my first MO back in 2004 was the most brilliant doctor I ever knew. He told me that he would be the quarterback for my care and I was to tell him every symptom I had. At that time I had stage 3C her2+ breast cancer and it was early days with herceptin. I had a very high chance of recurrence. I saw him every three months for 6 plus years. He is the doctor many are looking for today. You certainly would discuss arthritis, gall stones, heart issues, anything with him. He would refer me very quickly to any specialist I required. He then retired prior to my ovarian cancer. When I was diagnosed with that I discovered that these doctors didn't even pay attention to the fact I had had breast cancer. Their focus was on their specialty....ovarian cancer. When my tumour markers for ovarian cancer (CA125) were going up but scans were not finding any spread in my abdomen I kept talking about the breast cancer and possibly needing to go on arimidex, scans......totally ignored. It wasn't until an older MO attended me one day (I was seeing a team so not the same MO each time) and when he heard about the breast cancer he immediately had me have a chest CT and the rest is history. Sorry for all the text when I really just wanted to comment that I think these days MO's are specialized and really only focus on their own thing. Pat's MO is a dying breed unfortunately I suspect.
best wishes to all,
Cathy
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literature review today- a small clinical trial showed that everolimus (AA therapy) did not work well at all on PI3KCA mutant cancers, whereas another paper reports that FGFR1 amplified cancers respond great to everolimus, but poorly to endocrine therapy, CDK4,6 inhibitors and PI3K mutant cancers https://www.ncbi.nlm.nih.gov/pubmed/31371343
- how does this compare to experiences here?
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Seaway- Good to hear from you !!!! Glad for the clear scan, but what, if anything, are they going to do about the lung thing? Keep watching it?
I too have more forgetfulness these days. I will be in a conversation with someone and will forget a word during the conversation. Like, "Oh you know" and I will be hunting for the word I wanted to use. Crazy.
I like the "quarterback for my care". That would be nice. Not "I am not taking care of THAT, only the breast cancer".
Pop in anytime you can.
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Intothelight and Airline good luck with the scans I am sending positive prayers !!!!!
I definitely have forgetfulness...I thought it was the IBRANCE so I call it "Ibrance Brain" but it could be the letrozole. I have to say my 2nd bottle of ibrance SE's were so far, the worst.
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If you look at the meds that have memory loss as a SE on this BCO page, you will find the AI's (letrozole included) and tamoxifen.
https://www.breastcancer.org/treatment/side_effects/memory_loss
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Jaycee, I don’t think I ever thanked you for the information you shared about getting help with Ibrance costs. Thank you! 😊 My pharmacy had never heard of the The Assistant Foundation. It helped me and hopefully now that they are aware of it, they will be able to help others. Thank you, thank you and thank you!
Suzy
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seaway! Long time!! Good to see you 👋🏼
Forgetfulness - I feel like I have some sort of brain damage! Seriously! I can’t remember anything. I’ll be in the middle of talking and completely forget what I’ve said less than 1 minute before. It’s embarrassing!
Thankfully it gives me and the people I am talking to a moment to reflect and it helps keep the conversation really two-sided because they have to actively participate in remembering what we were talking about!
I absolutely positively have to keep lists now or else I will forget.
I attribute the memory loss to several things:
1) AIs
2) possibly Ibrance?
3) Lupron injection
4) being in medical menopause
5) having been through a deep trauma with this diagnosis and this is also a symptom of PTSD and depression. Thankfully I am on meds (antidepressants) now that help me not really care or get anxious or upset that I can’t remember anything
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Seaway, ever since my first chemo we've had "The Case of the Missing Nouns" around here. Remembering proper names is especially difficult and each treatment makes it more pronounced. It sure has been frustrating and embarrassing, much more so when I was working.
One of my friends who had treatment for MBC in her late twenties (20+ years ago) was told by a doctor that a scan of her brain looked like one of a much older person. It makes sense that cutting off estrogen completely could cause such a problem whether it's with chemo or hormone therapy.
The good news is our capacity to love is not diminished and anyone who loves us back will gladly help fill in the blanks.
Love from PatGMc
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Thank you all ladies. Your discussion of missing names and nouns has made me feel so much better. I spend lots of time trying to remember what I forgot as I have convinced myself that if I can finally remember then I am not so bad off. Silly me! I even sometimes Google synonyms just so I can fill in the blank! It is nice to know I am not alone...
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Yes, IntoLight, Google is the best antidote to Chemo-Brain! Life-changing!
PatGMc
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Memory issues- Think about it this way. Menopause in the natural form is normal aging. And as we age we get more forgetful among other body changes (hair thinning, bone loss, etc). We are unnaturally putting our bodies in early menopause with these meds. Especially with using Lupron to stop the ovaries AND an AI to stop the estrogen production from other areas of the body. So I can understand that we are speeding up the aging process. Such as Pat's example of the 20 year old and the brain scan. We laugh about the forgetfulness because we are not older (some of us) and we are experiencing the things older ladies do. These are just my thoughts, my opinion on the subject.
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Ladies;
Well I certainly feel better knowing I am not alone (although that is a shame) with this memory loss. My grocery lists are hilarious. Until I can write down their proper names I use descriptions. My daughter often picks things up for me while I look after her youngest so we have many laughable moments.
Candy, yes I think we'll just keep watching that lung thing in hopes it will disappear. As long as it isn't getting bigger, which so far so good, I'm ok.
Thinking of you all. Thank you for the welcome back.
Cathy
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Thank goodness for this discussion board and all its contributors; it is so reassuring when you realise you are not alone .
The first few months on Ibrance I would turn up to meet friends/ family/appointments on the wrong day because I had written down the incorrect date or transposed the date in the diary. It was becoming a bit of a joke. It took awhile for me to realise it was the drugs!! Now I triple check when writing things down and sometimes phone a few days ahead to confirm dates and time.
I have been doing sudoku puzzles for years, during my week off and the first week of taking Ibrance I can complete the 'tricky' level, by week 3 of Ibrance I sometimes cannot complete simple sudokus. Definitely 'chemo brain'!
- but it can also be used as an excuse when I have just messed up
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Stllivin, you're welcome. I have helped several people get funding for Ibrance and have heard from very few afterward. I appreciate it.
denny, I can only do simple Sudokus on my best day.
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Ladies, raising my hand for not remembering anyone's name starting the day I started Tamoxifen. then letrozole, faslodex, palbo. Bad news is that with chemo it hasn't come back. Still don't remember anyone's name.
My question isn't for me it's for my Mom. I took Ibrance for a year (along with Femara and Faslodex) with very few problems. My Mom has just started letrozole and palbociclib.
She's finding that during the third and fourth week she is having breakthrough episodes of atrial fibrillation. Comes with dizziness and the like. She's had AFib for years and it's been totally controlled by medication.
Her MO just pulls the name of her rhythm drug up on his computer and says there are no [known] drug interactions. I call B-S on that. So I was wondering, does anyone else here have AFib? And having trouble? Or not having trouble?
Feel free to PM me -- I'm just wondering if anyone else has solved this problem and am appealing to the collective wisdom.
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Pajim,
I am on my first cycle of Ibrance, and tonight will be day 21.
I posted a bit back about feeling "weak" and some folks responded -- it didn't feel like afib, and I have no issues with that so far as I know. But I do think there are drug interactions beyond what the MOs know. Turns out my blood pressure was going a bit wonky (and still is). The MO said "oh, we've never heard that," which I find a little bit hard to believe, since my BP was sinking a LOT lower than I had ever seen it before. I contacted my internist who told me to cut the BP pill in half and try that. That is helping somewhat, but my lower number is still hovering in the low 60s most of the time. My upper number is moving around more than when I was taking the whole pill. Could this relate to your mother's issue at all? I have not had dizziness per se -- just had to stop walking for a bit to "catch my breath."
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Yip to the memory thing and I do agree about the the ageing process... I maintain since initial treatment 12 years ago now, that my body felt like it suddenly aged 10 years from 42 to 52. Now I'm 54 and still feel about 10 years older physically, if not mentally....’cause I can’t remember being 10years younger!
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WOW! So thankful that you, Seaway, brought up the forgetfulness or confusion. I too forget words right in the middle of a conversation but what really freaked me out was my forgetfulness as I drove my grandson to see a movie. I got off the highway exit twice before turning onto the correct exit! I do take each of the exits at different times but that was crazy. Thanks Jaycee for the article, as it helped along with the many other insights that you have shared!
Parjim. Is your mom on a blood thinner too? If not I’m thinking she should be as clotting is a risk with the drugs and having A Fib already, probably increases the risk. That being said I too have spells when it seems more frequent but I’ll need to pay attention to which week they occur and I’ll get back to you. I’m on my second bottle of Ibrance and the se’s are certainly worse for me and my INR has dropped significantly. Doctor has to keep increasing the dose of Coumadin weekly. My BP has been very low at 97/57 to 160/88 and I too am on meds but difficult to know how much to take !
How is your mom’s INR?
Anyone else with BP or INR problems ?
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I am having the forgetfulness stuff as well. This is the end of my third week on Ibrance, and it is MUCH more significant than the 13 years when I was on letrozole. Since I started Ibrance about a month after I started Faslodex, I'm pretty sure it's the Ibrance. I'm finding myself saying over and over to my husband -- you know, the guy who... or you know, that restaurant near... instead of being able to recall the names. I don't recall seeing this in the side effects that I read, but it's amazing how many people have complained about this so far.
Virginia, are you on the 125 dosage? I really would like to lower my dosage on my second round because of the BP and this memory thing -- all else has been okay, except that I had one day with nausea and one with diarrhea.
Bev
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BevJen, yes I’m taking 125mg and if after the CT is done and I have the option of continuing on it, then I’m going to ask for a decrease.as others here have suggested !😉
I too get the the other Se’s in waves but no diarrhea..... I go ( no pun intended 😊) the other way with severe constipation .
Let me know if you get your Ibrancedecreased and I’ll do the same for you !
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Muddling, when I’ve talked with my MO for what’s next after letrozole + Ibrance, he’s said they’re either changing to faslodex + Ibrance or Verzenio. It’s not usually the Ibrance that fails but they do like that the Verzenio targets a different cell pathway. We’ll be watching your sucsess
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Pat, I keep meaning to mention that my autocorrect always changes Ibrance to “I dance”. I kind of love that given the dance we all do
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