Ibrance (Palbociclib)
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Zar- thank you for responding. She will evaluate after next weeks results. I got really sick when I was on 125 with a fever and cough. I took a 2 week break and she lowered me to 100. I will admit I am not real active. I want to be and feel better if I am but I feel so wiped out. What exercise do you do? I am signing up for a yoga class next week. Where are you being treated? Sounds like you got a great onco. I love my Onco.
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LovesMaltese
I live in northern New Mexico in the middle of nowhere. I was getting treated at our newly designated NCI cancer center in Albuquerque. I will continue to see them but I just moved to a closer primary onc. One hour away instead of two. I generally feel okay, but I can't be sure that I can do a 2 hour drive (each way) on any given day.
In truth, I am not in love with any doctor. I chose three doctors for cancer treatment after interviewing seven. Each doctor is highly competent but also blind to some things. All are busy. In an earlier post, someone was really frustrated with their onc for missing progression. None of my doctors read my radiology reports or lab work as closely as I do. Nor do they monitor changes as closely as I do. I am always pointing things out, raising questions. I realized very early on that I was managing my care.
Nice job signing up for yoga. I practice yoga twice a week in a class and I do a 30 minute body weight and weight training routine two to three times a week. I walk, run or bike six days a week. I have one day a week of rest. I have built up to this over 8 months. I also don't work like many of the ladies on this thread. Many days the walk is short, the weights are light and the yoga is easy. But I am consistent.
The studies show that you need a mixture of aerobic exercise and strength training. Otherwise it really doesn't matter what exercise you do as long as you do it consistently and you push yourself a bit. For people in treatment like us, pushing yourself will vary day to day. It isn't the slow steady improvement that you get when you are otherwise healthy. Your strength goes up and down.
When I started working on my health 8 months ago, a walk to the mailbox was pretty much the limit. I had no energy. Sometimes that is the case now. I can feel terrible in the morning and fine in the afternoon. So the morning exercise is a short walk not a run but I nail the the weight training routine in the pm. Amazingly I do get stronger overall, but on any given day the strength may not be there.
From my research, the exercise routine is among the most important pieces of my treatment protocol. Both in terms of quality of life and survival. The clinically proven impact is huge. My onc would agree with me on this. She never ceases to remind me to stay active even as I moan about headaches, fatigue, nausea, etc. Signing up for that yoga class (great strength training) is a smart and courageous move.
>Z<
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Hi all. I just found this post and wanted to know if I can join to ask a question. I have been on palbociclib Letrozole for about 8 cycles. It is working well on the cancer front with minimal side effects. However in the last two months I noticed I started to develop a few bald spots and I have a quarter of the hair I used to have. I know hair loss is a side effect. I have to stay on this drug for as long as it works. I am wondering about people who have been on this combo for longer that I have. Does the hair loss eventually stop? Have you loss patches or all your hair? I want to be prepared and know what to expect. I have been on biotin for one month and viviscal for a few days. Shedding has not slowed down. I would appreciate any hel
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Anaone, welcome to Breastcancer.org. We're sorry that you had to find us, but glad you did!
If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here.
Kins wishes,
The Mods
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hello Anaone. I have been on Ibrance & letrozole for a year (at the end of May). I have not had any bald spots, but have had enough thinning on top to wear a cap (or wig, if I'm dressed up). The thinning seemed to happen during about months 4-6 maybe, and then stop. It has not been any worse for the past 4 to 5 months. Also, my hair grows VERY slowly.
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I started noticing the thinning around the 6 cycle and I am on my 8th cycle now. Trying not to get upset but it does concern me if it doesn't slow down. I use a biotin conditioner and it has not helped. I hope it stops but it has now started to come out in larger amounts when I run my hands through my hair
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Hi ladies! I was wondering how many cycles of this lovely cocktail were you through before you started seeing results? I'm only on day 14 of my second cycle and recently had a CT scan for rads mapping of my spine. The radiologist found 3 additional lesions on my spine. I'm now up to 7 vertebrae with spots, but started with only 3 vertebrae when I was diagnosed in March. I'm not sure what to make of this. I'm meeting with my MO in the morning to discuss another biopsy. Original biopsy showed Her2 ++. The lab sent it out for FISH analysis, but it was inconclusive. I'm really thinking I may now be Her2+. I know this current combo is for Her2- cancer so. Thanks for any feedback!
Deb
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Hello Ladies- First let me mention that I don't understand how the posting of replies work...My sense is that my replies are not specific to individual posts, so I will reply to a couple of different posts here! If someone wants to let me know a better way, i would welcome the feedback!
Re: thinning hair...YES! What a nuisance! My hair looks awful, and I'm trying to find the right cut that looks cute!
Re: dosage of Ibrance...OK, here's my experience. After I started taking Ibrance (July 2015) my blood counts dropped markedly. My Oncologist wanted to decrease my dosage from 125 to 100...I said "No! give me a month or two to get my counts up!", mind you I had no practical plan in mind! BUT, I....focused on it?...ate more dark greens? gave my body more time to get used to it? Whatever I did apparently worked, because all these months later I'm still on 125 and my doc confirms that my counts are great, e.g. "my immune system shows no negative impact". So I highly recommend sticking it out....I think the body has the ability to sort things out and in my mind 125 is better than 100 is better than 75! Give it time and focus so that you can stay on the higher dosage!
Good luck to all! Lynn
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Lynn- it depends on how compromised your bone marrow is. If you continue on a dose where your ANC is too low you can have really serious problems. Btw- when a dose is lowered for that reason you usually do as well on the lower dose as you did the higher dose.
Did you have radiation right before starting Ibrance?
Carol
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My wife had radiation to her pelvis right before Ibrance.It totally messed up her bone marrows and she had to stop Ibrance 125 after only 2 weeks. Now she is off Ibrance for 2 weeks and going for blood work this coming Thursday. Her ANC fell to 0.36.
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Deb - In clinical trials the average time to an "objective response" was 3-4 months. 3.7 to be exact. This is not a therapy where you typically see results after one or two months like chemo. I've seen people who saw no objective response for 6 months and then got great results.
Another question for you and your onc is whether the spots are meaningful progression.
I have had more scans close together than one would normally have and I have had "spots" appear and disappear on scans. The accuracy of a CT scan is +/- 3mm. The experience taught me to take small changes in these scans with a grain of salt. You have time. Find a level headed onc and don't over-interprete the "new" spots. Did you really do the previous scan right before starting ibrance (1 month prior)? The new spots may have been there when you started Ibrance.
We don't have so many options for treatment that we can afford discard something before it had a chance to work. From what I have read, this is a relatively easy treatment. (with emphasis on relatively)
FWIW I have a possible bone met (ambiguous results from imaging, comes and goes, not bothering to biopsy) that we're just monitoring. There are drugs that target bone mets (zometa, xgeva) that I could be taking but since I have shown an objective response to ibrance/letrozol, we're waiting and watching. But it is good to know that zometa and xgeva are effect options for bone mets should I need them.
You might scan this thread for people who are HER+ and PM them about their experience. I believe I have seen some. I believe they were also ER/PR+. Strictly speaking it would be an off-label prescription but this is very very common in cancer treatment.
>Z<
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Deb, I started Ibrance and was scanned 6 weeks later. (no progression) I go to Dana Farber and I am being watched very very closely. Reason is that my original diagnosis was 18 years ago and when it returned in my bones (iliac, femur, ribs and and thoracic spine) the bone biopsy from both my femur and my iliac said it was triple neg. Originally ILC in breast was positive- there was no recurrence to the breast. With that being said, pathologist at Dana Farber thought it would be unusual for the ER/PR to be negative and with the results of the report caring certain antigenes, and therefore my MO at Dana started me on Ibrance/Let- From October till present I have had 3 bone scans (one at local home first) and 2 at Dana, along with Cat Scans- My last scan 9 weeks ago showed no progression and healing bones. I am scheduled at the end of the month for cat of chest and ab (no contrast) and bone scan. I hope this helps, as for each situation the protocol is different. Ibrance works very slowly. Hope this helps. Carol
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Deb, I totally agree with "Z," re. Ibrance not working like other meds. In fact, there was a link here many pages back that I thought was a report from the initial trials that mentioned several patients not having a positive response until cycle #5 or #6, at which point things turned around quite dramatically for them. If I have a minute to look for that link later, I will, and I'll repost it. Her other points are spot on too. In fact, my UCLA onc once said if I were to have a scan with mixed results (which I guess I sort of did last time, although most of it showed significant improvement), she probably would not change my current regimen unless a biopsy showed an active area had something entirely different going on, such as a change in hormone or Her2 status.
Lynn, I'm glad you were able to stay on the 125 mg. dose -- again something UCLA strongly advises, barring complications such as Carol and others have run into with compromised bone marrow that prevents blood cells from rebounding as they should.
Anaone, as far as the hair loss, I think it varies for each of us. Mine slowed down at one point, but has picked up again the past two cycles. (I'm on #8) It's frustrating, but I like to think it means the drug is working, so I'll put up with it, especially since many of my other initial SEs have lessened considerably at this point.
I hope everyone enjoyed their Mother's Day weekend. Deanna
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Letmywife... Your frustration is palpable as it should be. Dani's Onco also goes by ANC, she did not have rads for awhile, they don't want to radiate, there is too much to radiate so they just letting me pray and hope for the best. But I am always on the ready to ask for Neupogen, so I have to ask you and
LOVESM how come your docs don't recommend Neupogen? I would be very interested. Onco also is not crazy about it, but she had already taken it. How are you LovesM, did you get the rest of the blood work? And yes, after much ado with the mess in the doc's office she started the other drugs. Hopefully getting scans at the end of May, prob beginning of June.
Debk where did they biopsy now? And are they sending it out to places like Foundation One etc...? And Debk what was the reason for the scanning, if you only started in March why did they do it so soon? Dani also has many scans, but as much as we hate it, we decided to allow at least 8 wks to be able to get a more honest result. Who knows??
Zar oh my your 2nd paragraph about the doctors is verbatim what I would say. You bet,you are your only true advocate!! It's incredible how much you know. How do you get so eloquent in all this? And could I ask you what do you mean by "meaningful progression", bcs Dani had a few stable spots but NEW lesions, so how do we know what's meaningful?
Kaption How are you doing these days?
Anaone thx for the input.
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MomATT, Neupogen or Neulasta are not recommended with Ibrance. There are clear charts (linked here in the past) re. when to reduce dose, etc. Low counts should rebound naturally, otherwise a dose reduction needs to be considered -- not a med.
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Momall- I'm doing pretty well. I had an extra special Mother's Day weekend, so today I am exhausted and happy. Thanks for asking.
On the results question, I am nearing one year (started last June 1) on Ibrance/letrozole. My initial response was positive with stable scans and lower TMs and no new pain. After about 3 months of lowering TMs they started creeping up. Then November brought a new and severe pain in my femur. After rads, scans were essentially stable/mixed. TMs took another jump up. Last month TM took another significant jump up. Next scan will be mid June.
A weird thing that has just started in the last couple weeks is a vibration sensation in my right foot. Oddly, I had this feeling right before my mets diagnosis 2 years ago. Makes me wonder if something new is going on in my spine.
I've been on 125 all the time. ANC always low but acceptable. The thing that was different 2 weeks ago was a big drop in platelets- to the very bottom of normal. It had never been anywhere nearly that low before. So, there's a question for my next appointment.
Not sure how much longer I'll be on this. But, I've said that before- and I'm still here
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Thanks, Zakrova,
I think you have a clear vision of what you are capable of, which is a lot. I read that you stay busy with Yoga, running, etc. Me, too. My Onc has endorsed this and said staying immobile can only defeat the purpose of the meds. Just took up boxing (I'm now working that mentally as well as physically, LOL).
Love New Mexico and have quite a few friends in Santa Fe. Stay strong, keep believing in yourself. I like to think this is only a wee part of my life. See past this and you have much more than you know.
L
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Deanna, my onc also believes that Neulasta is not an option while taking Ibrance.
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Kaption:
Not to scare you but I had a similar vibration and it was discovered I had mets to L4-L5 pressing on the spinal cord. It is considered a medical emergency and you should be seen by a neurologist asap just to make sure that is not the case. Oh the reason I was here today is my doctor asked if I want to try Imbrance and so I am trying to decide!
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MomAllTheTime -
I find it amazing how eloquent people on this thread are given this situation we are in. Someone has the signature line: Challenge Accepted
. I love that. Should be the name of this forum as it applies to everyone who shows up here to fight.When I get past being totally freaked out, cancer is really interesting. You asked one of the very interesting questions:
"what do you mean by "meaningful progression", bcs Dani had a few stable spots but NEW lesions, so how do we know what's meaningful?"
From what I have experienced and read, some indicators of progression may not actually be progression. Also the imaging is not accurate enough to determine progression unless there is a lot of progression. Even with accurate scans, there is a lot of judgement in determining progression. It's not simple. Here are some things I have observed.
Thing 1
In December I had a PET/CT scan that showed hyper-metabolic activity in my sternum. I went to a second institution in January. They rejected the December PET/CT and did their own CT and bone scan in January. The CT/Bone scan found nothing. I started letrozol/Ibrance early February. In April I had a PET/CT scan done by Institution 2 which found .... dadada dum ... lesions and mild hyper-metaboic activity in my sternum.
If I had not had that December PET/CT scan, then I would have been told (confidently and with great authority by the snooty radiologist at institution two) in April that I had PROGRESSION to the bones under the Ibrance/Letrozol protocol. When you look at the April results in the context of the December PET/CT, either both PET scans are wrong or the January CT AND Bone scan were wrong. Mets don't come and go over a 3 month period. One of those results was either a (serious) false negative or a (serious) false positive.
I did some research as well. This is an interesting article about the limits of CT scans. In short, people in that study got two CT scans in a single day. The results varied within +/- 3mm. More than enough for "spots" to appear and disappear".
I could go on with the inconsistencies in my imaging results and my researches on imaging accuracy. There's more! I take imaging results with a grain of salt.
Thing 2
Hormone therapy is known to produce a flare response. Tumors can show higher metabolic activity in PET scans and bone scans and spit out more cancer antigens in the first 4-12 weeks of hormone therapy (Or so I read. My onc prepped me for 6 months of flare). This is an older article, but it specifically addresses flares in bone tumors treated with hormone therapy. The word is Scintigraphic Flare. It is a sign that the protocol is working. I had a flare response when I started the letrozol/ibrance therapy: my cancer antigens increased. All other indicators show that I am responding positively to the treatment.
Consider, as well, that Ibrance was rushed to market (thank god). They have no idea yet if/how Ibrance contributes to flare.
In this context it is hard to define progression, and I can go on and on with the issues.
Doctors have learned that the customer (us) wants them to respond with confidence and authority when they read these radiology reports. When we're having a melt down over a frightening report, we don't want a long explanation of what the doctor doesn't know and how little this or that is actually understood. However, when I start the discussion about the uncertainty of the information they use to make decisions and what we don't know about how cancer responds to treatments, the flood gates open and the radiologist jokes flow. I've had some really interesting discussions.
Given what I've been through and what I have read, it pains me to watch people on this thread go through emotional hell over small changes in their scans. I also wouldn't want to see someone abandon a therapy too early. We don't have that many good options.
What is meaningful progression? That's where you need an oncologist (or two or three if you have any doubts). There is a lot of expert judgement in that decision. But I don't believe progression will present itself as a small change in size or number or even a moderate change in a cancer marker.
I will want to see at least two scans over some period of time confirming changes of size, number and/or metabolic activity of more than 25%. I'll be getting second and third opinions and asking a lot of questions if and when I get there. However, I don't have an aggressive form of cancer at this point. And what you feel has to be taken into careful consideration. When I got into this with one of my oncologists, she talked about how scary waiting to change is for HER, not to mention the patient. If your gut is to change treatments and your onc is on board, do not hesitate.
I do try signal to my onc that I trust their judgement more than the scans. I don't want them to feel cornered into some action by a radiologists report just so I will feel like something is being done.
Sorry for the long response, but this was really interesting to think about. It helped me a lot to think through this.
>Z<
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dixiebell- thank you for the concern. I have only felt the vibration 2 or 3 times. And I did have a similar sensation 2 years ago when I got the mets diagnosis(all bone, mostly spine) All my lumbar area has had rads, and other treatments. L1 is crushed and is started to push toward the spine. We are watching it closely. So, I don't believe this is an emergency but will bring it up to my MO May 23.
Z, your comments about not changing treatments too quickly echo what both my MO and RO have said. You need scan evidence over time, multiple TMs and information about pain. Scan reading is a real skill. It's also helpful if the reader refers to previous scans.
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Z- thanks for all the information! My cancer institute does not use pet scans. Interesting, I was reading my March bone and ct scan results. I had extra uptake in bone scan in my thoratic spine. radiologist report says CT scan shows lytic lesions of throatic spine with scrlotic rims which they refer to is probably the reason for increased uptake on bone scan. The scrlotic rims means healing!! Report also said to watch this area closely. I had no rads there so they are slower to heal compared to the other two areas that were radiated.
I am going to mention bone flares at next appt. There is no doubt that the Ibrance/let combo causes my met area to feel burning sensations. I had the same cancer before treatment and nothing in that area felt like what I feel now.
You are a wealth of information and reiterate what my MO has informed me with. I hate to ask someone how old they are but I will offer that I'm 63 and the older you are the exercise part becomes more difficult. I can take some brisk walks and some gentle yoga but thoseare my limits. I broke ribs from sneezing!!
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LovesMaltes- I second your comments on exercise. I know how important it is and have done a pretty good job all my life of keeping active with exercise walking, aerobics, weights, and yoga. After my first two bc diagnoses I got right back into exercise, but it's been much harder the past 2 years- since the mets. (I am 67 now) I was doing yoga with a small group and a teacher who knows me well He did a nice job of adapting. Since the November flair up, I've just done gentle stuff at home. My goal is to walk more, but mainly I just try to not sit too much. Housework is exercise now Lol.
I live in some fear of breaking bones and especially injuring my spine.
I do appreciate the gentle reminders to keep moving. But, I have to remember to keep a good balance.
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Thanks Kap, I have been sitting around all morning and think I need to get out for a walk - walking in the grocery store I consider boot camp work out. I let my body tell me what to do. I lack energy today but I am not complaining. Today we have sunshine in upstate NY and hopefully 70 degrees later.
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Good morning gang,
Just got back from the gym and did some interval running and kettle bell lifting. I stop when the "signals" begin, but want so much to be able to be fit and able to move without groaning. I don't mind being 64, but I hate feeling so creaky. Added some extra glucosamine recently to lubricate my joints. Hoping that will work. I have noticed some hair thinning after 6 months on these meds and have been taking Biotin daily for a few months. It seems stable for now. I did get a shorter cut so I don't brush or mess with it as much. For the most part the SEs have become milder each month and life almost resembles normal again.
The monthly BT and MO visit was yesterday and my doctor wants to move me down to the 75 mg Ibrance due to low WBC (.6) and bad neutrophils on the 100 mg. We went through this in March and dropped from 125 to 100. I have been researching ways to boost WBC and saw that Zinc, Selenium and spinach are all recommended. So...I have a one month supply of 100mg on hand got approval to try it for one more month. I will start the WBC boost program today in anticipation of starting up the drug one week late. Maybe I'll be able to stabilize with the supplement and diet boost and avoid dropping the dosage. Everything else seems stable with TMs steady and no new spots on the scan last month.Hate to mess with success.
Has anyone had leg swelling on this protocol? I have never had edema before, but after gardening or walking or jogging my right leg gets puffy and I'm seeing bruises along that vein on the inside of my ankle and calf. They did a test for clots and it was okay. Weird.
Thank you for posting good info ladies! It is so helpful and appreciated. Good to see everyone enjoying the outdoors :-)
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Loves Maltese, Kaption -
I was a fit 50 year old when this hit. My workouts are a fraction of what I used to do. Walking to the mailbox is boot camp on some days.
As I try to figure out what is right for me on any given day, it helps me a lot to remember that 20 minutes is a meaningful amount of exercise. The key thing is to show up. Sometimes I surprise myself and I feel like my old fit self. Sometimes I do not. All part of this humbling experience.
It sounds to me like you are doing great with your exercise routines ... keep going!
>Z<
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Thanks for the input. I met with my MO yesterday and we spent about an hour discussing my treatment and my response. He was not concerned about the RO mapping CT results. He said it wasn't a diagnostic study, and, until we repeat my bone scan in late June, he wants to wait and see how the Ibrance will work. I'm only 15 days into my second round and I just need to relax a little and see how it will work. He reminded me this is a marathon, not a sprint. I'm just too much of a control freak and this diagnosis has knocked me off my rails. I feel good. My bloodwork is good, so I need to let the drugs, and my doc do their jobs. He also said if there is progression and I want to try Herceptin after my scan, he was willing to pursue it. Ugh... He did say if I didn't react the way I did and want things to move faster, he would worry more. Thanks again!
Deb
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Kathryn, looks like we are on the same page at the same time. I started when you did on the protocol and I got moved to 100 as well. Then my numbers were ugly and she had me off of 100 a week early- I bet I get lowered too, scans end of month- Are you getting xgeva shots as well?
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DebK my daughter is HER2 FISH +++ (on a rebiopsy after much progression), and doc put her on Ibr/Letr (off label like Z mentioned, I spoke to Pfizer, they said many docs do that) bcs he is convinced there are other pathways. She was just put on Herceptin(again) with the other mixture, I have been TRYING to read a lot and it's becoming acceptable to do many txs at the same time. (concomitant, new word I learned used in these situations). So you got a lot of options. And btw, it's also very common to ask for a recheck on that biopsy for verification, or Onco could send to someone else or you could get it yourself and do it. I took it myself and sent it to another Cancer Center and had it reconfirmed.
Deanna thx for the advice. I feel better to hear it from you, what can I tell you.
LovesM hopefully they will keep you on the same dosage.
Kaption interestingly I keep reading in BC.org that creeping up TM's don't always mean it's worse. Actually the same is happening to Dani, of course we are anxioius, but…And last year when there was much progression, I went back to look at the BT's and TM's were not always on spot. And re-Platelets Onco could have told you to wait a day or so, hope your numbers rebound soon.
Zark..you kidding, love the eloquency and warmth of your responses. PLEASE keep it up. Your input is greatly appreciated. Thank you so much for sharing your experiences with the scans, it's quite true. I have a hard time putting my trust in everyone, I became very cynical, we went to many "very good"doctors and I was always asking in my mind what is their interest, if they work for big Centers for sure, they harnessed and owned, protocols and having to answer to "higher authority" (not the one we have in mind). It's just a fact. So like you said we have to be our own advocates for sure. Dani almost always has a Pet/CT and in addition MRI for the brain. I never got the full picture which is better, Bone scan, CT scan or Pet/CT for bone mets??
I did read somewhere I am not sure which thread, that they "know" when to switch Xgeva to 3 mos or 6 mos, so how do we know? Which test would show that Xgeva is working? I assumed you just take it, Onco is giving it on a 6 wks basis at this time. He did wanna give it every 3 mos, but then changed his mind.
Take care everyone,
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Mommall, I have had the Xgeva frequency discussion many times with my mo. Although not a new drug, I don't believe there is enough data on denosumab for anyone to know if it is working or when to reduce the frequency. There is much more long term data on Zometa, but it is a different drug. Sorry to throw more spaghetti at the wall, but it's another thing that seems to be only a matter of opinion. I was dx'd with osteopenia prior to bc, so I have insisted on monthly shots for the 1st 2 years, then will go to every 3 months.
Z, I really appreciated your post on your exercise experience at stage IV, sorry, not sure if it was on this thread or elsewhere. I have been frustrated lately as I worked very hard over the winter on trying to get back in to some kind of shape, particularly improving my walking speed and distance, but many times it seems like I am back at square one again. I expect to build strength and stamina like I used to, but it just doesn't work that way any more. Thanks for confirming this is a day to day thing.
I go on the theory that every little bit counts when it comes to exercise. Do what you can, even if it is only to the mailbox and back.
Regarding imaging for bone mets, PET/CT vs CT, from my limited experience, it seems that CT does not pick up mets until they have become sclerotic, which I also understand as healing. On original dx, my MRI showed multiple bone mets throughout spine and pelvis, CT only picked up one. After approx. 6 mos. of tx, CT showed numerous diffuse mets. PET/CT picks up whatever is currently active, it is difficult to tell activity from healing on CT. Just my opinion.
My hair loss seems to have slowed the last month or so, currently finishing up cycle 10. Fingers crossed others with hair loss find it is limited and temporary.
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