Ibrance (Palbociclib)
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I have been on Ibrance and Femara for two years now and in the last month I've been experiencing major hair thinning and balding spots. I really don't want to lose my hair again. Are any of you having this problem? I know I'm lucky to be alive after 12 years of fighting ILC but I hate how bad my hair looks. What is the best style for really thin straight fine hair? Thanks friends and Happy New Year:)
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Happy New Year All. I should have started cycle 2 of 125mg on 12/28 however my WBC didn't bounce back (it went from 3.0 to 1.1 @ 2wks to 1.0 @4wks) so my MO said that she wanted me off Ibrance for another 2wks and @ the 1/11 blood check she'd start me on 100mg and go from there . . .
She seemed to think this was typical and that I shouldn't be worried or discouraged . . . Easy for her to say! After traveling over the Xmass holiday I was in a lot more pain . . . possibly from sitting for hours and she thought maybe the weather (it has been going from mild to cold and rainy) she said that if the pain didn't improve she'd have my back and hips imaged, . .
I'm concerned now that TX has stoped for 3wks (allowing for possible progression) that is going to push my PET/CT back another month which I'm not comfortable with; I lit the PET scan up, a week or so later a Brain MRI was done that made note of cancer in the bone marrow of my skull . . . I only had a DeepBone Biopsy, . . . Guess I need to study up on which scans pick-up cancers in the bone marrow and what treats it since only a few bone lesions were noted in the skull along with marrow involvement (MRI) and the PET/CT just mentions too many to count in my skeleton w/ nothing abnormal suggestive of malignancy in the soft tissues (doesn't mention marrow at all)
Neither has my MO, the questions Never End. Sorry for the ramble - needed the vent, sending positive vibes out to all. - - - Randy
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Randy,
Regarding your WBCs, there seems to be wide variability among med onc's on managing low WBC #s with Ibrance. I just started cycle 13 of Ibrance (100mg)/Faslodex and my WBCs have ALWAYS been below 1.0. They have been at .6 every time and recently rose to .7 then to .8. We have done no change in dose and no postponement of tx.
I am very fortunate to have had no fevers or bouts with infections, so far.
Keep reading and learning from this great group of amazingly inspiring role models in this and other threads.
Gumdoctor
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i shared this in the Bone Mets thread and want to share it here as well...
Received a phone call last week that my oncologist is on indefinite leave but a substitute doc will see me for already-scheduled appt on 07JAN19.
This week, I found out what happened. It is online...with his mug shot...he was arrested for attempting to strangle his estranged wife and threatened to shove a butcher knife down her throat.
In other posts, I have mentioned his apathetic approach and difficulties I continue to have with him, especially related to communication and empathy. Lack of empathy.
This news explains alot about his apathy. He has been dealing with this ever since I started with him in October 2014. I feel very sorry for him and his family. There are 4 small kids. I am also looking forward to a new MO and new look at my case...
Gumdoctor
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I haven't posted in a while....First of all, HAPPY NEW YEAR to you all. May the new year bring happiness and good health to us!
A little update on me, I am currently on cycle 13 of the Ibrance/Letrozole combo. A few months ago, my scans showed that all the tumors have shrunk by almost half in size. There are a few spots in the liver each being less than 1cm. The multiple lesions in the lining of the lungs have been reduced to countable number less than 1 cm each. Spots in the ribs have disappeared. Although I know things can turn at any point but I can only hope that the meds continue to work until these busters are all gone! Happily, I recently went on a fantastic vacation with my family to Atlantis, Bahamas. I enjoyed the sun, the peacefulness of the beach, the great food...I told myself not to think of the disease while on the trip. However, I still read the forum and was encouraged by your positive stories.
Piggy99: Congrats on the success of your treatment thus far. Your perseverance to pursue your studies is truly encouraging to me.
JoynerL: I followed your story and was thinking of you. Sorry to hear about your progression. I hope the next treatment will work remarkably for you.
Gumdoctor: What a story about your oncologist! Glad you will be getting a new one!
IllinoisNancy: I am experiencing thinning hair as well. I am currently contemplating on getting a topper or a full wig. While I don't like the unnatural feeling of wearing a wig, but I was told that if my hair continue to thin there won't be enough hair for the topper to clip on to. So, I might as well get a full wig now. I am still hoping that sometime down the road I would be healthy again and the luscious hair that I once had would grow back!
While the side-effects are tolerable so far, my muscles and bones are become quite achy. Getting up from a sitting position to walk is painfully on the feet. However, the pain goes away once I move around a bit. Not sure if others are experiencing the same and wondering if it would get better or worse?
QUESTION for that with liver mets: I have heard many of you wrote about Y90 treatment. Is that something to be done early on in the treatment or later once Ibrance fails. Y90 is only being experimented here in Canada but by the sound of it, it is something quite effective. If you have any knowledge or experience to share, please post or message me.
Sending you all best wishes...
Thereishope4us
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Thereishope....I have pain in my calfs when getting up from a sitting position "if" I've been sitting too long. However, I have neuropathy from previous Taxol infusions. So, I've been blaming my pain on that. It's especially difficult getting out of bed in the morning. My neuropathy is bad and I hobble around the house, carefully, but use a cane if I'm out and about. I haven't been able to drive for 9 months. I keep hoping/praying I get to that point soon.
Hope
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hope......that is where i am at, cane is with me when i head out, got several
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Hi all---welcome IllinoisNancy. I too live in Illinois, but southern half. You are probably around Chicagoland right? I am on Cycle 13 of I/L and my hair seems to be thinning more last couple of months. I have to unplug the drain weekly. Good grief !!!! My hair has always been on the fine, thin side and I lost it all after the chemo I had. But when it grew back in it was thick. Now thinning out. What we do to fight this cancer. I hope I just don't lose it all again. Anyone else out there with hair loss/thinning after several cycles of Ibrance?? Anything we can do to stop the loss??
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Thereishope4us. Yes, several of us have had y90. Every doc is different on what they recommend. Mine was at the beginning. When we saw after my first scan that the liver mets were not responding to IL my mo told me to go to IR. It worked really well for me. He did the radioembolization in both lobes, two different procedures. I have progression now but I don't fault the y90. He can only treat the lesions he can see. Probably the ones we can see now, he was not able to see or treat before. The y90 on "a lot of mets" had no uptake on PET for 20 months.
When to do it is debatable. I know they look at all your liver numbers etc to decide if you are a candidate. It's a really good treatment option, I wonder when Canada will approve it. 💞
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Iris...If I could only drive, I could deal with using the cane. Hope you had a nice Christmas and hoping we all have a healthy New Year!
Hope
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I’m noticing more hair thinning in the front too. I find switching my part helps a bit but know that this is only temporary. A feel side part is also helpful for me
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My update....
Earlier this week, we met with my stealth radiologist friend in Richmond, who reviewed all scans with us on his screens since diagnosis 2 years ago with MBC. That was helpful and allowed us to see the gradual progression in the bone they and he have been observing, but virtually all sclerotic until recently and considered relatively "stable" for two years until November.
We met with my Richmond onc on Thursday. He had consulted with Dr. Sanford at MSK (we met with her in NYC on 12/26) and commented that she was obviously very smart and that she was very well-qualified as a specialist in BC. Richmond onc agreed that we go with Dr. Sanford's recommendation of starting on Xeloda. We are also doing another PET (MSK recommendation) on Monday to confirm (or try to confirm) whether the two PETs in April and Oct actually weren't picking up the cancer or not. My radiologist friend in Richmond said that though the sclerotic lesions look very white on the screen, they are actually tiny individually, and he thinks that that is why the PET wasn't picking up on the activity.
I am first to have 6 10-min treatments of radiation, one each day for 6 consecutive days, on my hips, starting this Wednesday. The radiologist (radiation oncologist, not stealth friend) actually believed me when I said that I thought the hip pain was injury-related, as it continues to diminish. However, all agree that it makes no sense not to have the radiation to stabilize my hips by killing cancer in that general area so that normal bone can re-generate there and strengthen hip bones. It has been made clear to me by all docs that a hip fracture with very compromised bone is a terrible thing and might not be something from which I could ever really recover (mobility, etc). I'm in.
Xeloda will start after the radiation is finished. Richmond onc warned that he was unlikely to be able to tell whether the new treatment is working, as my cancer continues to be "unmeasurable". He reiterated that he can't be sure whether Ibrance/Faslodex actually was working at all or whether my cancer (first treated in 1991) is just very slow growing and just reaching a level to cause issues. This has been an ongoing problem. We'll do a scan at 2-3 months and then at 6 mo and assess the situation and make a decision as to whether to continue on Xeloda or move to another option (the other two suggested as options were AA and Verzenio).
The hypercalcemia was a bad sign for progression and for general prognosis (it's very scary to read about), though two docs (stealth and MSK) have suggested the possibility that a kidney stone caused the kidney back-up which caused the hypercalcemia. It usually goes the other way around. I'm going to talk to my urologist about that when the stent comes out on the 21st of this month. Both Richmond and MSK oncs noted again how healthy and normal I look and appeared to find that very encouraging for general prognosis. However, what I read doesn't look great, considering the bout with hypercalcemia, unless there was another reason other than "hypercalcemia of malignancy" which is the case in 80% of patients with cancer.
I'll be checking in with you guys.....
Over and out.....
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Joyner, I know it feels better when we have a plan and it sounds like you have a plan. I don't know anything about Xeloda. Need to read up. Everything you and your doctors are saying makes perfect sense to me. I only have one question. What are you going to do on Tuesday?
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Yay a plan! Sounds like you are using all your resources to the max and I think that is smart. I'll look for you on the Xeloda thread. I'm sure they will give you lots of tips on how to manage SE.💞
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Joyner, I am also happy that you have a plan. I recall reading about others on the boards who have had hypercalcemia. I think that one of them is JFL. If I remember correctly, she had it several years ago - maybe 3 or 4, and she is still here. I don't think that t hypercalcemia has been an issue since she received treatment for it. You might want to check with her. I hope the radiation solves the issues you are having with your hip and that you find Xeloda to be effective and easy to tolerate for many years to come.
Hugs and prayers from, Lynne
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Grannax, it's interesting that the Xeloda thread I found doesn't seem to be very active. I went through and cut and pasted comments and advice into a document for future reference and ordered some sort of moisture bar (Bee Bar lotion bar from Honey House) recommended by several. Hand and foot syndrome appears to be the worst SE, but as 50s Girl kindly noted, not all suffer from it. We shall see....Janet, you'd be proud of me! I'm ready!
Also, there is the manufacturer's recommended dosage vs a lower dosage recommended by MSK: manufacturer says, per my understanding, either 14 days on/7 days off or....horrors....21 days on/7 days off. MSK determined that the extra 7 days only made SE worse. They set a schedule of 7 day on/7 days off, which my local onc was delighted to implement.
Also, Janet, I suspect that you were jerking my chain about Tuesday, but the PET is Tuesday, as is "film day" at the radiation facility, whatever that is, just before starting radiation on Wednesday. You are the most accurate reader, and you remember everything. I hope that you've done something professionally with that, as you truly have an extraordinary gift for comprehension and recall.
50s Girl, I'll try to find JFL and the reference to hypercalcemia. Thanks for that. However, unless the patient dies from acute hypercalcemia through organ shut-down or coma and assuming that he/she recovers from the bout (some bouts are minimal), the scary thing is its implication. Per virtually everything I've read, "hypercalcemia of malignancy" is generally an indicator of an "aggressive cancer" and a "poor prognosis" of weeks or months to live. If you were to see me, you wouldn't believe it, and I don't think that my onc does, either. I'm trying to find support for the theory that a kidney stone caused the hypercalcemia and thus that it was not "of malignancy" at all. I'll ask my urologist when he removes the kidney stent inserted during the hypercalcemia bout. Anyway, beyond the discomfort of developing it, it is the implication which is the worst part of that diagnosis.
Hugs....
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maybe I've seen advice on the liver mets thread. A lot of ladies w liver mets are on Xeloda. I just hope it works for you. You're in a scary place.💞
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Lynn, thank you. That's a very nice thing to say. I did use my memory professionally. In my last teaching job, I had 125 students each term. (Community college, I couldn't take the politics of the university anymore) I told my students on the first day that I would know their names in a month. I mostly succeeded. When I was very young, my family used to call me "the finding machine" because I could find anything anyone lost. I figured out that finding lost stuff was not the "finding" but remembering where the item was last.
And the Tuesday thing? I just didn't want you to be bored on Tues.
Your profile doesn't show any radiation before. Piece of cake. The worst day will be Tuesday when they get it all lined up. Make them give you lots of breaks. The treatments should be short and sweet.
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may I remind you all that hypercalcemia and its potential deadly consequences are the warnings and typical results associated with the diminishing administration of xgeva. In my mind that's the most logical culprit, it's simple when there's a cause and effect...
MOs don't like to acknowledge SE because they are afraid of lawsuits and because obviously everything they prescribe is extremely dangerous, thus they have adopted a faboulous coping mechanism, discount and never mentioned the SE. Thus if they don't exist they can carry on and sleep well at night...
I have come to a sweet and honest agreement with my MO...his job is to go after the cancer, while I protect myself from the medications he prescribes....and it's working....I suffer no hand and foot disease from Xgeva, but I'm what you would call a maverick...
All my life I tended to lead instead of following....and now especially in regard to cancer since I already know how it will end if I were to follow their protocol to the T i definetly need to be more in control.
So far, all the dehabilitating consequences I suffer from have been caused by the treatment and not the cancer per se...so I've learned the hard way, to read, learn, and take steps to protect whatever remains of my health.......when I fall I want to fall on my own sword...so to speak...
But, it's also true that we are all physically and psychologically different, and that we are all doing the best we can to survive this terrible disease....
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Joyner, There are many of us on Xeloda. I think that people have a tendency to post more when they are having issues. Most of us on xeloda are having a relatively easy time as far as SEs are concerned. I have noticed that if someone does post with concerns or questions, they receive responses quickly. There have been studies published that say that the 7 days on/7 days off is as effective as 14/7 with fewer SEs. I like knowing that I am never more than a week away from a week off. I do apply Udderly Smooth cream to my hands and feet twice a day to help prevent HFS. Several people recommended it including my MO and people I have met on these discussion boards. I have had a few days when my feet felt a bit warm, not burning though, and I wore NatraCure cold socks for twenty minutes. They felt good. I cool them in the refrigerator rather than the freezer. I think the freezer might make them too cold,but that is just me. They are available online through Amazon and other sites. A friend from these discussion boards recommended them to me before I started xeloda. Other than that, I have done nothing special. As far as hypercalcemia is concerned, remember that not everything you read applies to you. Everyone is unique, and I have come to believe that mbc is just as unique for each of us. What you read could be from old data, probably includes generalizations, and should be taken with a grain of salt. You are strong and I am confident you will be around for a long time.
Hugs and prayers from, Lynne
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Hey, Joyner thanks for the update. Wishing you all well with your new treatment plan. Keep us posted. Thinking of you
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Joyner, my good friend, from where I'm sitting I see more than a few rays of sunshine in everything you've mentioned. I'm certainly not a doctor, and I hope you don't find my optimism annoying, but a few things do strike me that are encouraging.
First, there have been SO many mentions of how slow growing your cancer must be. That seems like a super positive factor.
Second, like you (as you know) I am "bone only." I've heard my MO say a dozen times that, since it can't be measured, how I look and feel are actually of great prognostic significance. (I've read that in a number of articles too -- it it a diagnostic factor). So I wouldn't discount that one bit!
Third, I've also read that hypercalcemia is a very poor prognostic factor in a certain context -- because it is a strong indicator that cancer has metastasized. You've known for a couple of years that yours has metastasized. Everything I've seen seems to be in the context that, if someone is Stage I or II and develops hypercalcemia, that may well be a sign that he/she has become State IV. And in other types of cancer that indeed can indeed mean weeks or months.
So sorry for the rant -- I'm sure you've studied this a thousand times as much as I have -- I can only begin to imagine how you feel right now and did want to share the things that are striking me.
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You girls are wonderful, and I'm actually much calmer than I may seem in print. We have a plan, and we'll execute it. I'm hoping that the hypercalcemia wasn't a doomsday predictor, and Penny, I (and my onc) agree with you that general health should be a good indicator of current status. Miaowmix, my onc said that the timing of my Xgeva shots eliminated it as a possible option for causing the hypercalcemia. When I asked if it might have been the kidney stone blocking my ureter which backed everything up and caused the hypercalcemia, he said essentially that there was no way of really knowing. I'm beginning to realize how much of all of this is [for the most part, highly] educated guesswork and best practice. Onward....
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Joyner, I'm with you on the "educated guesswork and best practice". Your doctors, smart as they are, don't know everything about your body. They know statistics and they know what has happened to other patients. They are often required to make decisions based on those best practice guidelines regardless of what their instincts tell them.
I have a feeling you will continue to trust your own instincts as you get all the information available to you, then make decisions accordingly. I have had many friends who took Xeloda and had good results. Back when Xeloda was approved they started all patients on the highest dose and everyone I knew who took it got H & F and had to reduce. I'm a believer in starting with a lower dose which you can always raise.
Remember that our job is to use the current drugs to give us the best quality of life and the most control over MBC until newer, better drugs become available. There are so many in the pipeline it's reasonable to expect that to happen. I think making a list of the options and the possible side effects, then praying about it and going with what you have peace about in the morning is a good plan. You're not going to mess this up.
I hope you'll look in the mirror and tell yourself how much fun you plan to have and how much hope there is for your future, Lynn.
Love from PatGMc
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Lynn, you actually sounded very calm and clear in your dx description. Which makes all of us feel much better about your situation. I especially applaud the decision to radiate the hip, regardless of where the pain is coming from. Plan in place, check. Confidence in decisions, check. Head held high, check. Friends supporting you every step of the way, check check double check.
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What on earth would we do without each other? No one else can really understand in the same way. Pat , Penny, and Jaylea, special thanks!! I agree with all that you've said.
We're getting new carpet in the boat, and I'm ordering jazzy pillows (gussying) for launch in April. We intend to be back on the water this spring and ready to take on whatever comes! The cane is back in the closet, at least for now.
Hugs to all of you....
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I love this thread, I'm not leaving just because I'm on AA. All of you are such encouragers. Jaylea I like all the checks. That's so right on in my opinion. It's a way to look at the big picture and move on.
On with jazzing up the boat, Joyner. April will be here soon. It's perfect timing because your body will have gotten used to X by then. You'll be ready to roll, my friend.💞
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Lynn....Jaylea summed it up perfectly! I am so happy that things are settled and you are ready to move on with your new treatment. But, don't dare leave this thread! You would be sooo missed.
Hope
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Ladies
I've just finished my third cycle of F/I. Tomorrow I see my ONC and then on Tues. a CT and a bone scan. Please join me in lifting up prayers to heaven that this treatment is working for me. Thank You
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Snooky, you are joined! I was praying for all of us just this morning in church. Good luck with those scans! And let us know.
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